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Women in rheumatology: A look back, a look forward
Jean Liew, MD, recalls the long list of women mentors who have guided her career in rheumatology.
It started during her residency, when Jennifer Barton, MD, at Oregon Health & Science University, Portland, exposed her to new ways of conducting clinical research on patient outcomes.
In fellowship, she met Lianne Gensler, MD, a leader in axial spondyloarthritis, at the annual meeting of the American College of Rheumatology. Through Dr. Gensler’s mentorship and sponsorship, she was introduced to Maureen Dubreuil, MD, at Boston University, whose research focuses on pharmacoepidemiologic approaches using large databases.
Dr. Liew currently practices rheumatology under the leadership of Tuhina Neogi, MD, a world-renowned expert in osteoarthritis and gout. “She’s my research mentor,” Dr. Liew, an assistant professor of medicine at Boston University, said in an interview.
Her academic timeline reflects the powerful network and influence of women rheumatologists, who represent half of the adult rheumatology workforce in the United States. “In the research arena, many experts are women and they serve as role models and mentors to many,” Dr. Liew said.
But there’s more work to do, she and others acknowledged.
Rheumatology faces ongoing workforce shortages while struggling with a gender gap that’s closing but not as quickly as many women rheumatologists would like to see.
The gap persists, despite overall gains in the field of medicine, Vaneet Sandhu, MD, a rheumatologist with Loma Linda (Calif.) University, said in an interview. Women have exceeded men as enrollees in medical colleges, reported the Association of American Medical Colleges. And yet, “our colleagues reported last year that, in academic rheumatology, women are less likely to be full or associate professors than men,” she said.
The odds of being a fellowship program director or division director is similar in both males and females. “So, we’ve had some gains, but there’s always room for more,” Dr. Sandhu said.
Too few physicians
The next 10 years forecasts a dearth in American physicians.
AAMC projects a shortage of 124,000 doctors in the United States by 2034. Following on a similar trajectory, the ACR in 2015 anticipated a 25% drop in the supply of rheumatology clinical providers by 2030, with demand exceeding supply by more than 4,100 clinical employees.
The ACR’s workforce study projected that more women would come into rheumatology, noted Marcy Bolster, MD, director of the rheumatology fellowship training program at Massachusetts General Hospital, Boston. Women make up at least 50% of the workforce and 66% of fellows If these numbers hold, “we’ll definitely see an increase in the percent of women in the workforce” moving forward, Dr. Bolster said in an interview.
Women have helped the shortage to a great extent, said Nilanjana Bose, MD, a rheumatologist at Lonestar Rheumatology, Houston.
The work-life balance that rheumatology offers, combined with its focus on the cognitive part of internal medicine, explains why the field has attracted so many women. Rheumatology provides flexible work options. Women “get to teach or do rounds in the hospital or have a private practice where you’re mostly outpatient with some hospital work,” Dr. Bose said in an interview.
With anticipated shortages looming over the next decade, the profession needs to be cognizant of the different demands women face in their careers and how it can accommodate the workforce to meet the needs of its providers and maintain access for patients, Dr. Bolster said.
There are many innovative ways to match the demand for access. One thought is to create shared positions. Instead of employing four full-time physicians and one person part time, have two people who are working part time, Dr. Bolster suggested. “It is also important to not only expand our workforce with advanced practice providers, but to ensure their retention in the rheumatology workforce, to improve access to care for those with rheumatic diseases.”
Increasing the number of residency positions is another step toward addressing the shortage, Dr. Sandhu offered.
Women rheumatologists should make their voices heard by contacting members of Congress to support legislation that advocates for workforce shortage solutions, “in addition to generally supporting women’s rights and growth in the workplace,” she said.
The gender divide continues
Rosalind Ramsey-Goldman, MD, DrPH, remembers being the only woman in a group of five during her fellowship in the mid-1980s. Few women role models existed within the ACR, especially those in academic careers. “Now, most fellowships have more than 50% women, reflecting the number of women going to medical school,” said Dr. Ramsey-Goldman, Gallagher Research Professor in Rheumatology at Northwestern University and Northwestern Medicine, Chicago.
As more women enter the profession, women rheumatologists in academic rheumatology have started to outpace men in recent years. Some research suggests they’ve made headway in gaining leadership spots at institutions.
One recent paper, a cross-sectional national study of more than 6,100 rheumatologists, found that women had similar odds of attaining fellowship program or division director positions as men. As directors of training programs, women in rheumatology “instill this collaborative and growth mindset that encourages learners to self-reflect and work as a team,” Dr. Sandhu said.
Women bring a different perspective to training, and how curriculum works, Dr. Bose said. Studies have shown that women tend to be more empathic. They ask more questions. “That’s not to say men aren’t good. Women just have an inborn ability for connecting,” and this perspective helps to enrich the educational experience for trainees.
Women who lead training programs are also attuned to realities that female trainees confront, such as dealing with the challenges of achieving the best possible education while also raising a family, noted Graciela S. Alarcón, MD, MPH, who holds emeritus positions at the University of Alabama at Birmingham and the Universidad Peruana Cayetano Heredia in Lima, Peru.
“These program directors cultivate the ability to relate to women trainees in a very personal manner, supporting them in their efforts to achieve a balance between their training demands and their family/personal responsibilities,” she said.
Other research suggests the gender gap hasn’t gone away. Women continue to have lower odds of holding a higher-level professorship, receiving a federal grant, or speaking at academic conferences. They are also less likely to serve as first authors on rheumatology guidelines or recommendations.
Some studies suggest that women see fewer patients and earn less than their male counterparts. At peak difference, men can earn up to $100,000+ more than women. “My own impression is that it takes more efforts for women to reach the same level of recognition than men, and although overt discrimination is rare nowadays, subtle discrimination still occurs,” according to Dr. Alarcón.
Over a lifetime, female physicians can expect to earn less than their male counterparts, with clear implications for different retirement income levels, she said.
Fixing a leaky academic pipeline
The reality is the academic pipeline, and especially the physician-scientist pipeline, “continues to be leaky,” Dr. Liew said. “We know that caregivers to young children have larger barriers to surmount in academics and in research, and that there is a gender disparity present.” The toll of academic medicine on early career women who are parents is especially pronounced. While the pandemic has intensified this problem, it was around pre-COVID, she added.
Women who start in academia as academic clinicians or clinician researchers aren’t always able to meet their goals for promotion within the appropriate time frame. This is because of inequities in the system and lack of support related to maternity leave, childcare, and other issues. As a result, they leave academia and go into private practice or industry, Dr. Liew said.
The ACR in its 2015 survey projected that more women would be seeking part-time positions.
The good news is many academic institutions are taking a more equitable view about different career paths, offering equal parental leave to both men and women, Dr. Bolster noted. “It is essential that workforce planning encompasses the changing responsibilities within families and account for more parental leave by both men and women.” If certain projections come true, with 50% of the profession retiring between 2015 and 2030, combined with more men and women working part time, “it is requisite that workforce strategies plan for this.”
When Dr. Ramsey-Goldman was a trainee and junior faculty, there were no formal maternity leave policies.
Now, this benefit is available, she said. In another critical change, the ACR has made childcare services and a lactation room available for young mothers during its annual meeting. “Virtual meetings afford further ways to interact with colleagues,” she added.
Whether women choose to stay in academia or go into clinical practice is a very personal decision. “But it is also fair that, in some programs, training directors and faculty members can encourage trainees toward academia and its fascinating research possibilities,” Dr. Alarcón offered.
Making gains in research
Women are increasingly driving groundbreaking rheumatology research at all levels, Dr. Sandhu said. “And women empower women. Not infrequently, our female leaders, veterans in rheumatology research, seek younger female rheumatologists to help them grow in their niches. This has been one of the most beautiful things of the sisterhood in rheumatology that I have been blessed to be part of.”
In pediatric rheumatology, young female researchers are leading global research efforts. Some standouts include Kate Webb, MD, a pediatric rheumatologist in Cape Town, South Africa, and scientist who has worked on multisystem inflammatory syndrome during the pandemic. Sheila Angeles-Han, MD, who works on uveitis in juvenile idiopathic arthritis, had a role in recent ACR guidelines. Laura Lewandowski, MD, has also contributed to global rheumatology efforts, especially in low- and middle-income countries, Dr. Liew said.
The 2021 ACR annual meeting highlighted the research efforts of women rheumatologists from around the world. A global rheumatology summit at the meeting featured many women voices, including Dzifa Dey, MD, from Ghana, who received the ACR Distinguished International Rheumatology Professional Award. Ashira Blazer, MD, and Irene Blanco, MD, have spearheaded the ACR’s diversity, equity, and inclusion initiatives.
Women researchers have many opportunities to study rheumatologic diseases that disproportionately affect women, Dr. Alarcón said.
Lupus, for example, affects women in a much higher proportion than men (90% vs. 10%). This may be an attractive target for the best and brightest among future women researchers, Dr. Alarcón suggested. “It is a fact that publications related to lupus in leading internal medicine and rheumatology journals often include women either as first or senior authors. In that context, it can be said that several advances in the study of lupus worldwide can be attributed to women.”
This applies to disparities in social determinants of health that account for extremely complex outcomes in lupus among women of color, compared with White women, in addition to the costs associated with the disease and its impact on morbidity, mortality, and quality of life.
Women rheumatologists have advanced the work in reproductive management of rheumatic diseases, including a recent ACR-endorsed publication that provides formal guidance on managing reproductive health in women with rheumatic disease, Dr. Sandhu said. “One thing is clear: Without women, the work on reproductive diseases in rheumatology to date would not likely be where it is.”
Dr. Ramsey-Goldman added that “this critical work will not only set the stage for clinical care of both women and men regarding their reproductive health but will also inform education strategies for trainees and future research activities, and help direct policy regarding access to care, medication development, and costs of treatment.”
Obtaining grant funding to support salaries and researcher endeavors remains a challenge, Dr. Liew said. “It takes working evenings, weekends, and holidays to meet those goals within a set time frame. So you can see why a female faculty member with children might be disadvantaged, compared to a male counterpart without children.”
Competition for grant funding remains fierce as budgets become tighter, she added.
“We will lose a lot more brilliant and compassionate rheumatologists (clinicians, physician-scientists, and scientists alike) if we do not think of ways to make things more equitable or do not acknowledge the privileges that support some to continued career successes and leave others behind,” Dr. Liew said.
Women who choose a research field should seek out mentor and financial support that will allow them enough protected time to balance out research with other clinical activities, such as teaching and patient care, Dr. Alarcón said.
Training directors, mentors, and faculty should prioritize the needs of current and future women researchers, she said. “The guidance provided to young female trainees toward a successful research career is a formidable challenge that may provide, in turn, enormous satisfaction. There are established avenues to seek funding as new investigators.”
Progress in diversity
Rheumatology as a field is attracting more candidates and all races and genders, Dr. Bose said. “I think in the coming years we will see more and more women from minorities being incorporated into the rheumatology workforce.”
Others would like to see further improvements in diversity and attracting women from historically excluded backgrounds. Patients will benefit from rheumatologists who are able to connect with them through shared languages, cultures, and other life experiences, Dr. Liew said. “It is imperative that we work on recruitment, mentorship, and retention in this regard.”
While the representation of women of color is still inadequate, there has been some progress, Dr. Sandhu said. The number of female Hispanic, Latinx, and Black or African American graduates from medical school has seen a steady rise since 2017. And, AAMC has established task forces such as the Women of Color Initiative to identify strategies for furthering the careers of women of color in academic medicine.
“There’s still a lot of room to grow. I am, however, proud to say we will finally have a woman of color as the president of ACR in 2023,” said Dr. Sandhu, referring to Deborah Dyett Desir, MD.
Dr. Desir discussed the importance of diversifying the ACR in a recent interview.
All rheumatologists know that there is a place for them in the ACR, she stressed. “The demographics of our membership should reflect that of our population.”
As growth in diverse representation occurs, so will recruitment, retention, and a greater awareness and distribution of knowledge and means to address implicit biases and microaggressions, Dr. Sandhu said. “We will see a greater quality of health care, where patients may feel more connected to someone they can identify with.”
Looking ahead
Dr. Alarcón expects women to continue to play a major role in rheumatology, not just in research, education, and patient care but in leadership of academic societies and professional organizations.
“Women in rheumatology have come a long way – a piece of history that I have been fortunate to witness from my beginnings in the early 1970s. We have, I think, paved the way for the next generations of leaders in our beloved specialty field.”
Dr. Bolster is a member of the ACR board of directors and board liaison of the ACR Workforce Solutions Committee. Dr. Ramsey-Goldman has been a GlaxoSmithKline consultant for lupus studies, a consultant and site investigator with Exagen Diagnostics for lupus biomarker studies, and a site investigator for Xencor and Horizon Pharma lupus trials. Dr. Sandhu serves on the ACR’s Committee on Rheumatology Training and Workforce Issues.
Related article
Pioneer days of rheumatology: One veteran looks back
Patricia Woo, CBE, FMedSci, FRCP, has seen it all.
As a member of the British Rheumatology Society and fellow of the Royal College of Physicians, she presented the case for and obtained official training approval for pediatric rheumatology in the 1990s. She also set the wheels in motion to form the Paediatric Rheumatology International Trials Organisation and the Paediatric Rheumatology European Society.
Now 74, Dr. Woo remembers the discrimination she faced in the 1970s. “I was told I couldn’t become an investigator or consultant if I were to marry or have children.” Around the same time, she found out a male clinician researcher didn’t want to work with her, not because of her qualifications, but because she was a woman.
That wouldn’t happen now with all the antidiscrimination laws in place, noted Dr. Woo, an emeritus professor of pediatric rheumatology and previous head of the Centre for Paediatric and Adolescent Rheumatology at UCL, London. Looking at the advances made by women in rheumatology, “there’s a major difference between 3 decades ago and today. If anyone discriminates today, they are called out.”
As the founding president of the Paediatric Rheumatology European Society, Dr. Woo is one of many early trailblazers who weathered many changes and made gains in the profession.
It’s important to recognize the work of Barbara Ansell, MD, the founder of pediatric rheumatology in the Canadian Red Cross Memorial Hospital, said Dr. Woo. Back in the 1960s, this wasn’t even a subspecialty. “Sick kids in general were taken either to pediatricians who didn’t know much about undescribed rheumatological conditions, and rheumatologists who didn’t know or have facilities for pediatric care.”
Dr. Ansell started this work, and Dr. Woo took over when she retired. With her colleagues, she set up a syllabus for pediatric rheumatology to formalize training for all junior doctors. This established a model of multidisciplinary clinical care and research. “Over the years, more women doctors have been attracted to pediatric rheumatology and have done well,” she said.
The rise of female leaders in rheumatology over the past few decades has been exponential, she continued. Women have become presidents of rheumatologic societies. Some established themselves as leaders in specific disciplines.
Carol Black, MD, from the United Kingdom is renowned for her international collaborative work in scleroderma research and clinical care. Patience White, MD in Washington, D.C., started research on the process of transitioning from childhood to adolescent to adult clinical care, a discipline that now has a strong international presence, Dr. Woo said.
The European Alliance of Associations for Rheumatology, which created a task force on gender equity in academic rheumatology, is evolving, she continued. The Academy of Medical Sciences in the United Kingdom also has active gender equality and mentoring programs, including a program to boost the careers of all researchers.
It’s also much easier now for women to become lead authors on papers since many are heads of lab or clinical services, Dr. Woo continued. “I don’t think there’s much discrimination if you’re a good clinician, and/or a good scientist. If women do their work well, they get the appropriate acknowledgment.”
Jean Liew, MD, recalls the long list of women mentors who have guided her career in rheumatology.
It started during her residency, when Jennifer Barton, MD, at Oregon Health & Science University, Portland, exposed her to new ways of conducting clinical research on patient outcomes.
In fellowship, she met Lianne Gensler, MD, a leader in axial spondyloarthritis, at the annual meeting of the American College of Rheumatology. Through Dr. Gensler’s mentorship and sponsorship, she was introduced to Maureen Dubreuil, MD, at Boston University, whose research focuses on pharmacoepidemiologic approaches using large databases.
Dr. Liew currently practices rheumatology under the leadership of Tuhina Neogi, MD, a world-renowned expert in osteoarthritis and gout. “She’s my research mentor,” Dr. Liew, an assistant professor of medicine at Boston University, said in an interview.
Her academic timeline reflects the powerful network and influence of women rheumatologists, who represent half of the adult rheumatology workforce in the United States. “In the research arena, many experts are women and they serve as role models and mentors to many,” Dr. Liew said.
But there’s more work to do, she and others acknowledged.
Rheumatology faces ongoing workforce shortages while struggling with a gender gap that’s closing but not as quickly as many women rheumatologists would like to see.
The gap persists, despite overall gains in the field of medicine, Vaneet Sandhu, MD, a rheumatologist with Loma Linda (Calif.) University, said in an interview. Women have exceeded men as enrollees in medical colleges, reported the Association of American Medical Colleges. And yet, “our colleagues reported last year that, in academic rheumatology, women are less likely to be full or associate professors than men,” she said.
The odds of being a fellowship program director or division director is similar in both males and females. “So, we’ve had some gains, but there’s always room for more,” Dr. Sandhu said.
Too few physicians
The next 10 years forecasts a dearth in American physicians.
AAMC projects a shortage of 124,000 doctors in the United States by 2034. Following on a similar trajectory, the ACR in 2015 anticipated a 25% drop in the supply of rheumatology clinical providers by 2030, with demand exceeding supply by more than 4,100 clinical employees.
The ACR’s workforce study projected that more women would come into rheumatology, noted Marcy Bolster, MD, director of the rheumatology fellowship training program at Massachusetts General Hospital, Boston. Women make up at least 50% of the workforce and 66% of fellows If these numbers hold, “we’ll definitely see an increase in the percent of women in the workforce” moving forward, Dr. Bolster said in an interview.
Women have helped the shortage to a great extent, said Nilanjana Bose, MD, a rheumatologist at Lonestar Rheumatology, Houston.
The work-life balance that rheumatology offers, combined with its focus on the cognitive part of internal medicine, explains why the field has attracted so many women. Rheumatology provides flexible work options. Women “get to teach or do rounds in the hospital or have a private practice where you’re mostly outpatient with some hospital work,” Dr. Bose said in an interview.
With anticipated shortages looming over the next decade, the profession needs to be cognizant of the different demands women face in their careers and how it can accommodate the workforce to meet the needs of its providers and maintain access for patients, Dr. Bolster said.
There are many innovative ways to match the demand for access. One thought is to create shared positions. Instead of employing four full-time physicians and one person part time, have two people who are working part time, Dr. Bolster suggested. “It is also important to not only expand our workforce with advanced practice providers, but to ensure their retention in the rheumatology workforce, to improve access to care for those with rheumatic diseases.”
Increasing the number of residency positions is another step toward addressing the shortage, Dr. Sandhu offered.
Women rheumatologists should make their voices heard by contacting members of Congress to support legislation that advocates for workforce shortage solutions, “in addition to generally supporting women’s rights and growth in the workplace,” she said.
The gender divide continues
Rosalind Ramsey-Goldman, MD, DrPH, remembers being the only woman in a group of five during her fellowship in the mid-1980s. Few women role models existed within the ACR, especially those in academic careers. “Now, most fellowships have more than 50% women, reflecting the number of women going to medical school,” said Dr. Ramsey-Goldman, Gallagher Research Professor in Rheumatology at Northwestern University and Northwestern Medicine, Chicago.
As more women enter the profession, women rheumatologists in academic rheumatology have started to outpace men in recent years. Some research suggests they’ve made headway in gaining leadership spots at institutions.
One recent paper, a cross-sectional national study of more than 6,100 rheumatologists, found that women had similar odds of attaining fellowship program or division director positions as men. As directors of training programs, women in rheumatology “instill this collaborative and growth mindset that encourages learners to self-reflect and work as a team,” Dr. Sandhu said.
Women bring a different perspective to training, and how curriculum works, Dr. Bose said. Studies have shown that women tend to be more empathic. They ask more questions. “That’s not to say men aren’t good. Women just have an inborn ability for connecting,” and this perspective helps to enrich the educational experience for trainees.
Women who lead training programs are also attuned to realities that female trainees confront, such as dealing with the challenges of achieving the best possible education while also raising a family, noted Graciela S. Alarcón, MD, MPH, who holds emeritus positions at the University of Alabama at Birmingham and the Universidad Peruana Cayetano Heredia in Lima, Peru.
“These program directors cultivate the ability to relate to women trainees in a very personal manner, supporting them in their efforts to achieve a balance between their training demands and their family/personal responsibilities,” she said.
Other research suggests the gender gap hasn’t gone away. Women continue to have lower odds of holding a higher-level professorship, receiving a federal grant, or speaking at academic conferences. They are also less likely to serve as first authors on rheumatology guidelines or recommendations.
Some studies suggest that women see fewer patients and earn less than their male counterparts. At peak difference, men can earn up to $100,000+ more than women. “My own impression is that it takes more efforts for women to reach the same level of recognition than men, and although overt discrimination is rare nowadays, subtle discrimination still occurs,” according to Dr. Alarcón.
Over a lifetime, female physicians can expect to earn less than their male counterparts, with clear implications for different retirement income levels, she said.
Fixing a leaky academic pipeline
The reality is the academic pipeline, and especially the physician-scientist pipeline, “continues to be leaky,” Dr. Liew said. “We know that caregivers to young children have larger barriers to surmount in academics and in research, and that there is a gender disparity present.” The toll of academic medicine on early career women who are parents is especially pronounced. While the pandemic has intensified this problem, it was around pre-COVID, she added.
Women who start in academia as academic clinicians or clinician researchers aren’t always able to meet their goals for promotion within the appropriate time frame. This is because of inequities in the system and lack of support related to maternity leave, childcare, and other issues. As a result, they leave academia and go into private practice or industry, Dr. Liew said.
The ACR in its 2015 survey projected that more women would be seeking part-time positions.
The good news is many academic institutions are taking a more equitable view about different career paths, offering equal parental leave to both men and women, Dr. Bolster noted. “It is essential that workforce planning encompasses the changing responsibilities within families and account for more parental leave by both men and women.” If certain projections come true, with 50% of the profession retiring between 2015 and 2030, combined with more men and women working part time, “it is requisite that workforce strategies plan for this.”
When Dr. Ramsey-Goldman was a trainee and junior faculty, there were no formal maternity leave policies.
Now, this benefit is available, she said. In another critical change, the ACR has made childcare services and a lactation room available for young mothers during its annual meeting. “Virtual meetings afford further ways to interact with colleagues,” she added.
Whether women choose to stay in academia or go into clinical practice is a very personal decision. “But it is also fair that, in some programs, training directors and faculty members can encourage trainees toward academia and its fascinating research possibilities,” Dr. Alarcón offered.
Making gains in research
Women are increasingly driving groundbreaking rheumatology research at all levels, Dr. Sandhu said. “And women empower women. Not infrequently, our female leaders, veterans in rheumatology research, seek younger female rheumatologists to help them grow in their niches. This has been one of the most beautiful things of the sisterhood in rheumatology that I have been blessed to be part of.”
In pediatric rheumatology, young female researchers are leading global research efforts. Some standouts include Kate Webb, MD, a pediatric rheumatologist in Cape Town, South Africa, and scientist who has worked on multisystem inflammatory syndrome during the pandemic. Sheila Angeles-Han, MD, who works on uveitis in juvenile idiopathic arthritis, had a role in recent ACR guidelines. Laura Lewandowski, MD, has also contributed to global rheumatology efforts, especially in low- and middle-income countries, Dr. Liew said.
The 2021 ACR annual meeting highlighted the research efforts of women rheumatologists from around the world. A global rheumatology summit at the meeting featured many women voices, including Dzifa Dey, MD, from Ghana, who received the ACR Distinguished International Rheumatology Professional Award. Ashira Blazer, MD, and Irene Blanco, MD, have spearheaded the ACR’s diversity, equity, and inclusion initiatives.
Women researchers have many opportunities to study rheumatologic diseases that disproportionately affect women, Dr. Alarcón said.
Lupus, for example, affects women in a much higher proportion than men (90% vs. 10%). This may be an attractive target for the best and brightest among future women researchers, Dr. Alarcón suggested. “It is a fact that publications related to lupus in leading internal medicine and rheumatology journals often include women either as first or senior authors. In that context, it can be said that several advances in the study of lupus worldwide can be attributed to women.”
This applies to disparities in social determinants of health that account for extremely complex outcomes in lupus among women of color, compared with White women, in addition to the costs associated with the disease and its impact on morbidity, mortality, and quality of life.
Women rheumatologists have advanced the work in reproductive management of rheumatic diseases, including a recent ACR-endorsed publication that provides formal guidance on managing reproductive health in women with rheumatic disease, Dr. Sandhu said. “One thing is clear: Without women, the work on reproductive diseases in rheumatology to date would not likely be where it is.”
Dr. Ramsey-Goldman added that “this critical work will not only set the stage for clinical care of both women and men regarding their reproductive health but will also inform education strategies for trainees and future research activities, and help direct policy regarding access to care, medication development, and costs of treatment.”
Obtaining grant funding to support salaries and researcher endeavors remains a challenge, Dr. Liew said. “It takes working evenings, weekends, and holidays to meet those goals within a set time frame. So you can see why a female faculty member with children might be disadvantaged, compared to a male counterpart without children.”
Competition for grant funding remains fierce as budgets become tighter, she added.
“We will lose a lot more brilliant and compassionate rheumatologists (clinicians, physician-scientists, and scientists alike) if we do not think of ways to make things more equitable or do not acknowledge the privileges that support some to continued career successes and leave others behind,” Dr. Liew said.
Women who choose a research field should seek out mentor and financial support that will allow them enough protected time to balance out research with other clinical activities, such as teaching and patient care, Dr. Alarcón said.
Training directors, mentors, and faculty should prioritize the needs of current and future women researchers, she said. “The guidance provided to young female trainees toward a successful research career is a formidable challenge that may provide, in turn, enormous satisfaction. There are established avenues to seek funding as new investigators.”
Progress in diversity
Rheumatology as a field is attracting more candidates and all races and genders, Dr. Bose said. “I think in the coming years we will see more and more women from minorities being incorporated into the rheumatology workforce.”
Others would like to see further improvements in diversity and attracting women from historically excluded backgrounds. Patients will benefit from rheumatologists who are able to connect with them through shared languages, cultures, and other life experiences, Dr. Liew said. “It is imperative that we work on recruitment, mentorship, and retention in this regard.”
While the representation of women of color is still inadequate, there has been some progress, Dr. Sandhu said. The number of female Hispanic, Latinx, and Black or African American graduates from medical school has seen a steady rise since 2017. And, AAMC has established task forces such as the Women of Color Initiative to identify strategies for furthering the careers of women of color in academic medicine.
“There’s still a lot of room to grow. I am, however, proud to say we will finally have a woman of color as the president of ACR in 2023,” said Dr. Sandhu, referring to Deborah Dyett Desir, MD.
Dr. Desir discussed the importance of diversifying the ACR in a recent interview.
All rheumatologists know that there is a place for them in the ACR, she stressed. “The demographics of our membership should reflect that of our population.”
As growth in diverse representation occurs, so will recruitment, retention, and a greater awareness and distribution of knowledge and means to address implicit biases and microaggressions, Dr. Sandhu said. “We will see a greater quality of health care, where patients may feel more connected to someone they can identify with.”
Looking ahead
Dr. Alarcón expects women to continue to play a major role in rheumatology, not just in research, education, and patient care but in leadership of academic societies and professional organizations.
“Women in rheumatology have come a long way – a piece of history that I have been fortunate to witness from my beginnings in the early 1970s. We have, I think, paved the way for the next generations of leaders in our beloved specialty field.”
Dr. Bolster is a member of the ACR board of directors and board liaison of the ACR Workforce Solutions Committee. Dr. Ramsey-Goldman has been a GlaxoSmithKline consultant for lupus studies, a consultant and site investigator with Exagen Diagnostics for lupus biomarker studies, and a site investigator for Xencor and Horizon Pharma lupus trials. Dr. Sandhu serves on the ACR’s Committee on Rheumatology Training and Workforce Issues.
Related article
Pioneer days of rheumatology: One veteran looks back
Patricia Woo, CBE, FMedSci, FRCP, has seen it all.
As a member of the British Rheumatology Society and fellow of the Royal College of Physicians, she presented the case for and obtained official training approval for pediatric rheumatology in the 1990s. She also set the wheels in motion to form the Paediatric Rheumatology International Trials Organisation and the Paediatric Rheumatology European Society.
Now 74, Dr. Woo remembers the discrimination she faced in the 1970s. “I was told I couldn’t become an investigator or consultant if I were to marry or have children.” Around the same time, she found out a male clinician researcher didn’t want to work with her, not because of her qualifications, but because she was a woman.
That wouldn’t happen now with all the antidiscrimination laws in place, noted Dr. Woo, an emeritus professor of pediatric rheumatology and previous head of the Centre for Paediatric and Adolescent Rheumatology at UCL, London. Looking at the advances made by women in rheumatology, “there’s a major difference between 3 decades ago and today. If anyone discriminates today, they are called out.”
As the founding president of the Paediatric Rheumatology European Society, Dr. Woo is one of many early trailblazers who weathered many changes and made gains in the profession.
It’s important to recognize the work of Barbara Ansell, MD, the founder of pediatric rheumatology in the Canadian Red Cross Memorial Hospital, said Dr. Woo. Back in the 1960s, this wasn’t even a subspecialty. “Sick kids in general were taken either to pediatricians who didn’t know much about undescribed rheumatological conditions, and rheumatologists who didn’t know or have facilities for pediatric care.”
Dr. Ansell started this work, and Dr. Woo took over when she retired. With her colleagues, she set up a syllabus for pediatric rheumatology to formalize training for all junior doctors. This established a model of multidisciplinary clinical care and research. “Over the years, more women doctors have been attracted to pediatric rheumatology and have done well,” she said.
The rise of female leaders in rheumatology over the past few decades has been exponential, she continued. Women have become presidents of rheumatologic societies. Some established themselves as leaders in specific disciplines.
Carol Black, MD, from the United Kingdom is renowned for her international collaborative work in scleroderma research and clinical care. Patience White, MD in Washington, D.C., started research on the process of transitioning from childhood to adolescent to adult clinical care, a discipline that now has a strong international presence, Dr. Woo said.
The European Alliance of Associations for Rheumatology, which created a task force on gender equity in academic rheumatology, is evolving, she continued. The Academy of Medical Sciences in the United Kingdom also has active gender equality and mentoring programs, including a program to boost the careers of all researchers.
It’s also much easier now for women to become lead authors on papers since many are heads of lab or clinical services, Dr. Woo continued. “I don’t think there’s much discrimination if you’re a good clinician, and/or a good scientist. If women do their work well, they get the appropriate acknowledgment.”
Jean Liew, MD, recalls the long list of women mentors who have guided her career in rheumatology.
It started during her residency, when Jennifer Barton, MD, at Oregon Health & Science University, Portland, exposed her to new ways of conducting clinical research on patient outcomes.
In fellowship, she met Lianne Gensler, MD, a leader in axial spondyloarthritis, at the annual meeting of the American College of Rheumatology. Through Dr. Gensler’s mentorship and sponsorship, she was introduced to Maureen Dubreuil, MD, at Boston University, whose research focuses on pharmacoepidemiologic approaches using large databases.
Dr. Liew currently practices rheumatology under the leadership of Tuhina Neogi, MD, a world-renowned expert in osteoarthritis and gout. “She’s my research mentor,” Dr. Liew, an assistant professor of medicine at Boston University, said in an interview.
Her academic timeline reflects the powerful network and influence of women rheumatologists, who represent half of the adult rheumatology workforce in the United States. “In the research arena, many experts are women and they serve as role models and mentors to many,” Dr. Liew said.
But there’s more work to do, she and others acknowledged.
Rheumatology faces ongoing workforce shortages while struggling with a gender gap that’s closing but not as quickly as many women rheumatologists would like to see.
The gap persists, despite overall gains in the field of medicine, Vaneet Sandhu, MD, a rheumatologist with Loma Linda (Calif.) University, said in an interview. Women have exceeded men as enrollees in medical colleges, reported the Association of American Medical Colleges. And yet, “our colleagues reported last year that, in academic rheumatology, women are less likely to be full or associate professors than men,” she said.
The odds of being a fellowship program director or division director is similar in both males and females. “So, we’ve had some gains, but there’s always room for more,” Dr. Sandhu said.
Too few physicians
The next 10 years forecasts a dearth in American physicians.
AAMC projects a shortage of 124,000 doctors in the United States by 2034. Following on a similar trajectory, the ACR in 2015 anticipated a 25% drop in the supply of rheumatology clinical providers by 2030, with demand exceeding supply by more than 4,100 clinical employees.
The ACR’s workforce study projected that more women would come into rheumatology, noted Marcy Bolster, MD, director of the rheumatology fellowship training program at Massachusetts General Hospital, Boston. Women make up at least 50% of the workforce and 66% of fellows If these numbers hold, “we’ll definitely see an increase in the percent of women in the workforce” moving forward, Dr. Bolster said in an interview.
Women have helped the shortage to a great extent, said Nilanjana Bose, MD, a rheumatologist at Lonestar Rheumatology, Houston.
The work-life balance that rheumatology offers, combined with its focus on the cognitive part of internal medicine, explains why the field has attracted so many women. Rheumatology provides flexible work options. Women “get to teach or do rounds in the hospital or have a private practice where you’re mostly outpatient with some hospital work,” Dr. Bose said in an interview.
With anticipated shortages looming over the next decade, the profession needs to be cognizant of the different demands women face in their careers and how it can accommodate the workforce to meet the needs of its providers and maintain access for patients, Dr. Bolster said.
There are many innovative ways to match the demand for access. One thought is to create shared positions. Instead of employing four full-time physicians and one person part time, have two people who are working part time, Dr. Bolster suggested. “It is also important to not only expand our workforce with advanced practice providers, but to ensure their retention in the rheumatology workforce, to improve access to care for those with rheumatic diseases.”
Increasing the number of residency positions is another step toward addressing the shortage, Dr. Sandhu offered.
Women rheumatologists should make their voices heard by contacting members of Congress to support legislation that advocates for workforce shortage solutions, “in addition to generally supporting women’s rights and growth in the workplace,” she said.
The gender divide continues
Rosalind Ramsey-Goldman, MD, DrPH, remembers being the only woman in a group of five during her fellowship in the mid-1980s. Few women role models existed within the ACR, especially those in academic careers. “Now, most fellowships have more than 50% women, reflecting the number of women going to medical school,” said Dr. Ramsey-Goldman, Gallagher Research Professor in Rheumatology at Northwestern University and Northwestern Medicine, Chicago.
As more women enter the profession, women rheumatologists in academic rheumatology have started to outpace men in recent years. Some research suggests they’ve made headway in gaining leadership spots at institutions.
One recent paper, a cross-sectional national study of more than 6,100 rheumatologists, found that women had similar odds of attaining fellowship program or division director positions as men. As directors of training programs, women in rheumatology “instill this collaborative and growth mindset that encourages learners to self-reflect and work as a team,” Dr. Sandhu said.
Women bring a different perspective to training, and how curriculum works, Dr. Bose said. Studies have shown that women tend to be more empathic. They ask more questions. “That’s not to say men aren’t good. Women just have an inborn ability for connecting,” and this perspective helps to enrich the educational experience for trainees.
Women who lead training programs are also attuned to realities that female trainees confront, such as dealing with the challenges of achieving the best possible education while also raising a family, noted Graciela S. Alarcón, MD, MPH, who holds emeritus positions at the University of Alabama at Birmingham and the Universidad Peruana Cayetano Heredia in Lima, Peru.
“These program directors cultivate the ability to relate to women trainees in a very personal manner, supporting them in their efforts to achieve a balance between their training demands and their family/personal responsibilities,” she said.
Other research suggests the gender gap hasn’t gone away. Women continue to have lower odds of holding a higher-level professorship, receiving a federal grant, or speaking at academic conferences. They are also less likely to serve as first authors on rheumatology guidelines or recommendations.
Some studies suggest that women see fewer patients and earn less than their male counterparts. At peak difference, men can earn up to $100,000+ more than women. “My own impression is that it takes more efforts for women to reach the same level of recognition than men, and although overt discrimination is rare nowadays, subtle discrimination still occurs,” according to Dr. Alarcón.
Over a lifetime, female physicians can expect to earn less than their male counterparts, with clear implications for different retirement income levels, she said.
Fixing a leaky academic pipeline
The reality is the academic pipeline, and especially the physician-scientist pipeline, “continues to be leaky,” Dr. Liew said. “We know that caregivers to young children have larger barriers to surmount in academics and in research, and that there is a gender disparity present.” The toll of academic medicine on early career women who are parents is especially pronounced. While the pandemic has intensified this problem, it was around pre-COVID, she added.
Women who start in academia as academic clinicians or clinician researchers aren’t always able to meet their goals for promotion within the appropriate time frame. This is because of inequities in the system and lack of support related to maternity leave, childcare, and other issues. As a result, they leave academia and go into private practice or industry, Dr. Liew said.
The ACR in its 2015 survey projected that more women would be seeking part-time positions.
The good news is many academic institutions are taking a more equitable view about different career paths, offering equal parental leave to both men and women, Dr. Bolster noted. “It is essential that workforce planning encompasses the changing responsibilities within families and account for more parental leave by both men and women.” If certain projections come true, with 50% of the profession retiring between 2015 and 2030, combined with more men and women working part time, “it is requisite that workforce strategies plan for this.”
When Dr. Ramsey-Goldman was a trainee and junior faculty, there were no formal maternity leave policies.
Now, this benefit is available, she said. In another critical change, the ACR has made childcare services and a lactation room available for young mothers during its annual meeting. “Virtual meetings afford further ways to interact with colleagues,” she added.
Whether women choose to stay in academia or go into clinical practice is a very personal decision. “But it is also fair that, in some programs, training directors and faculty members can encourage trainees toward academia and its fascinating research possibilities,” Dr. Alarcón offered.
Making gains in research
Women are increasingly driving groundbreaking rheumatology research at all levels, Dr. Sandhu said. “And women empower women. Not infrequently, our female leaders, veterans in rheumatology research, seek younger female rheumatologists to help them grow in their niches. This has been one of the most beautiful things of the sisterhood in rheumatology that I have been blessed to be part of.”
In pediatric rheumatology, young female researchers are leading global research efforts. Some standouts include Kate Webb, MD, a pediatric rheumatologist in Cape Town, South Africa, and scientist who has worked on multisystem inflammatory syndrome during the pandemic. Sheila Angeles-Han, MD, who works on uveitis in juvenile idiopathic arthritis, had a role in recent ACR guidelines. Laura Lewandowski, MD, has also contributed to global rheumatology efforts, especially in low- and middle-income countries, Dr. Liew said.
The 2021 ACR annual meeting highlighted the research efforts of women rheumatologists from around the world. A global rheumatology summit at the meeting featured many women voices, including Dzifa Dey, MD, from Ghana, who received the ACR Distinguished International Rheumatology Professional Award. Ashira Blazer, MD, and Irene Blanco, MD, have spearheaded the ACR’s diversity, equity, and inclusion initiatives.
Women researchers have many opportunities to study rheumatologic diseases that disproportionately affect women, Dr. Alarcón said.
Lupus, for example, affects women in a much higher proportion than men (90% vs. 10%). This may be an attractive target for the best and brightest among future women researchers, Dr. Alarcón suggested. “It is a fact that publications related to lupus in leading internal medicine and rheumatology journals often include women either as first or senior authors. In that context, it can be said that several advances in the study of lupus worldwide can be attributed to women.”
This applies to disparities in social determinants of health that account for extremely complex outcomes in lupus among women of color, compared with White women, in addition to the costs associated with the disease and its impact on morbidity, mortality, and quality of life.
Women rheumatologists have advanced the work in reproductive management of rheumatic diseases, including a recent ACR-endorsed publication that provides formal guidance on managing reproductive health in women with rheumatic disease, Dr. Sandhu said. “One thing is clear: Without women, the work on reproductive diseases in rheumatology to date would not likely be where it is.”
Dr. Ramsey-Goldman added that “this critical work will not only set the stage for clinical care of both women and men regarding their reproductive health but will also inform education strategies for trainees and future research activities, and help direct policy regarding access to care, medication development, and costs of treatment.”
Obtaining grant funding to support salaries and researcher endeavors remains a challenge, Dr. Liew said. “It takes working evenings, weekends, and holidays to meet those goals within a set time frame. So you can see why a female faculty member with children might be disadvantaged, compared to a male counterpart without children.”
Competition for grant funding remains fierce as budgets become tighter, she added.
“We will lose a lot more brilliant and compassionate rheumatologists (clinicians, physician-scientists, and scientists alike) if we do not think of ways to make things more equitable or do not acknowledge the privileges that support some to continued career successes and leave others behind,” Dr. Liew said.
Women who choose a research field should seek out mentor and financial support that will allow them enough protected time to balance out research with other clinical activities, such as teaching and patient care, Dr. Alarcón said.
Training directors, mentors, and faculty should prioritize the needs of current and future women researchers, she said. “The guidance provided to young female trainees toward a successful research career is a formidable challenge that may provide, in turn, enormous satisfaction. There are established avenues to seek funding as new investigators.”
Progress in diversity
Rheumatology as a field is attracting more candidates and all races and genders, Dr. Bose said. “I think in the coming years we will see more and more women from minorities being incorporated into the rheumatology workforce.”
Others would like to see further improvements in diversity and attracting women from historically excluded backgrounds. Patients will benefit from rheumatologists who are able to connect with them through shared languages, cultures, and other life experiences, Dr. Liew said. “It is imperative that we work on recruitment, mentorship, and retention in this regard.”
While the representation of women of color is still inadequate, there has been some progress, Dr. Sandhu said. The number of female Hispanic, Latinx, and Black or African American graduates from medical school has seen a steady rise since 2017. And, AAMC has established task forces such as the Women of Color Initiative to identify strategies for furthering the careers of women of color in academic medicine.
“There’s still a lot of room to grow. I am, however, proud to say we will finally have a woman of color as the president of ACR in 2023,” said Dr. Sandhu, referring to Deborah Dyett Desir, MD.
Dr. Desir discussed the importance of diversifying the ACR in a recent interview.
All rheumatologists know that there is a place for them in the ACR, she stressed. “The demographics of our membership should reflect that of our population.”
As growth in diverse representation occurs, so will recruitment, retention, and a greater awareness and distribution of knowledge and means to address implicit biases and microaggressions, Dr. Sandhu said. “We will see a greater quality of health care, where patients may feel more connected to someone they can identify with.”
Looking ahead
Dr. Alarcón expects women to continue to play a major role in rheumatology, not just in research, education, and patient care but in leadership of academic societies and professional organizations.
“Women in rheumatology have come a long way – a piece of history that I have been fortunate to witness from my beginnings in the early 1970s. We have, I think, paved the way for the next generations of leaders in our beloved specialty field.”
Dr. Bolster is a member of the ACR board of directors and board liaison of the ACR Workforce Solutions Committee. Dr. Ramsey-Goldman has been a GlaxoSmithKline consultant for lupus studies, a consultant and site investigator with Exagen Diagnostics for lupus biomarker studies, and a site investigator for Xencor and Horizon Pharma lupus trials. Dr. Sandhu serves on the ACR’s Committee on Rheumatology Training and Workforce Issues.
Related article
Pioneer days of rheumatology: One veteran looks back
Patricia Woo, CBE, FMedSci, FRCP, has seen it all.
As a member of the British Rheumatology Society and fellow of the Royal College of Physicians, she presented the case for and obtained official training approval for pediatric rheumatology in the 1990s. She also set the wheels in motion to form the Paediatric Rheumatology International Trials Organisation and the Paediatric Rheumatology European Society.
Now 74, Dr. Woo remembers the discrimination she faced in the 1970s. “I was told I couldn’t become an investigator or consultant if I were to marry or have children.” Around the same time, she found out a male clinician researcher didn’t want to work with her, not because of her qualifications, but because she was a woman.
That wouldn’t happen now with all the antidiscrimination laws in place, noted Dr. Woo, an emeritus professor of pediatric rheumatology and previous head of the Centre for Paediatric and Adolescent Rheumatology at UCL, London. Looking at the advances made by women in rheumatology, “there’s a major difference between 3 decades ago and today. If anyone discriminates today, they are called out.”
As the founding president of the Paediatric Rheumatology European Society, Dr. Woo is one of many early trailblazers who weathered many changes and made gains in the profession.
It’s important to recognize the work of Barbara Ansell, MD, the founder of pediatric rheumatology in the Canadian Red Cross Memorial Hospital, said Dr. Woo. Back in the 1960s, this wasn’t even a subspecialty. “Sick kids in general were taken either to pediatricians who didn’t know much about undescribed rheumatological conditions, and rheumatologists who didn’t know or have facilities for pediatric care.”
Dr. Ansell started this work, and Dr. Woo took over when she retired. With her colleagues, she set up a syllabus for pediatric rheumatology to formalize training for all junior doctors. This established a model of multidisciplinary clinical care and research. “Over the years, more women doctors have been attracted to pediatric rheumatology and have done well,” she said.
The rise of female leaders in rheumatology over the past few decades has been exponential, she continued. Women have become presidents of rheumatologic societies. Some established themselves as leaders in specific disciplines.
Carol Black, MD, from the United Kingdom is renowned for her international collaborative work in scleroderma research and clinical care. Patience White, MD in Washington, D.C., started research on the process of transitioning from childhood to adolescent to adult clinical care, a discipline that now has a strong international presence, Dr. Woo said.
The European Alliance of Associations for Rheumatology, which created a task force on gender equity in academic rheumatology, is evolving, she continued. The Academy of Medical Sciences in the United Kingdom also has active gender equality and mentoring programs, including a program to boost the careers of all researchers.
It’s also much easier now for women to become lead authors on papers since many are heads of lab or clinical services, Dr. Woo continued. “I don’t think there’s much discrimination if you’re a good clinician, and/or a good scientist. If women do their work well, they get the appropriate acknowledgment.”
More medical schools build training in transgender care
Klay Noto wants to be the kind of doctor he never had when he began to question his gender identity.
A second-year student at Tulane University in New Orleans, he wants to listen compassionately to patients’ concerns and recognize the hurt when they question who they are. He will be the kind of doctor who knows that a breast exam can be traumatizing if someone has been breast binding or that instructing a patient to take everything off and put on a gown can be triggering for someone with gender dysphoria.
Being in the room for hard conversations is part of why he pursued med school. “There aren’t many LGBT people in medicine and as I started to understand all the dynamics that go into it, I started to see that I could do it and I could be that different kind of doctor,” he told this news organization.
Mr. Noto, who transitioned after college, wants to see more transgender people like himself teaching gender medicine, and for all medical students to be trained in what it means to be transgender and how to give compassionate and comprehensive care to all patients.
Gains have been made in providing curriculum in transgender care that trains medical students in such concepts as how to approach gender identity with sensitivity and how to manage hormone therapy and surgery for transitioning patients who request that, according to those interviewed for this story.
But they agree there’s a long way to go to having widespread medical school integration of the health care needs of about 1.4 million transgender people in the United States.
According to the Association of American Medical Colleges (AAMC) Curriculum Inventory data collected from 131 U.S. medical schools, more than 65% offered some form of transgender-related education in 2018, and more than 80% of those provided such curriculum in required courses.
Lack of transgender, nonbinary faculty
Jason Klein, MD, is a pediatric endocrinologist and medical director of the Transgender Youth Health Program at New York (N.Y.) University.
He said in an interview that the number of programs nationally that have gender medicine as a structured part of their curriculum has increased over the last 5-10 years, but that education is not standardized from program to program.
The program at NYU includes lecture-style learning, case presentations, real-world conversations with people in the community, group discussions, and patient care, Dr. Klein said. There are formal lectures as part of adolescent medicine where students learn the differences between gender and sexual identity, and education on medical treatment of transgender and nonbinary adolescents, starting with puberty blockers and moving into affirming hormones.
Doctors also learn to know their limits and decide when to refer patients to a specialist.
“The focus is really about empathic and supportive care,” said Dr. Klein, assistant professor in the department of pediatrics at Hassenfeld Children’s Hospital at NYU Langone Health. “It’s about communication and understanding and the language we use and how to deliver affirming care in a health care setting in general.”
Imagine the potential stressors, he said, of a transgender person entering a typical health care setting. The electronic health record may only have room for the legal name of a person and not the name a person may currently be using. The intake form typically asks patients to check either male or female. The bathrooms give the same two choices.
“Every physician should know how to speak with, treat, emote with, and empathize with care for the trans and nonbinary individual,” Dr. Klein said.
Dr. Klein noted there is a glaring shortage of trans and nonbinary physicians to lead efforts to expand education on integrating the medical, psychological, and psychosocial care that patients will receive.
Currently, gender medicine is not included on board exams for adolescent medicine or endocrinology, he said.
“Adding formal training in gender medicine to board exams would really help solidify the importance of this arena of medicine,” he noted.
First AAMC standards
In 2014, the AAMC released the first standards to guide curricula across medical school and residency to support training doctors to be competent in caring for transgender patients.
The standards include recommending that all doctors be able to communicate with patients related to their gender identity and understand how to deliver high-quality care to transgender and gender-diverse patients within their specialty, Kristen L. Eckstrand, MD, a coauthor of the guidelines, told this news organization.
“Many medical schools have developed their own curricula to meet these standards,” said Dr. Eckstrand, medical director for LGBTQIA+ Health at the University of Pittsburgh Medical Center.
Norma Poll-Hunter, PhD, AAMC’s senior director for workforce diversity, noted that the organization recently released its diversity, equity, and inclusion competencies that guide the medical education of students, residents, and faculty.
Dr. Poll-Hunter told this news organization that AAMC partners with the Building the Next Generation of Academic Physicians LGBT Health Workforce Conference “to support safe spaces for scholarly efforts and mentorship to advance this area of work.”
Team approach at Rutgers
Among the medical schools that incorporate comprehensive transgender care into the curriculum is Rutgers University’s Robert Wood Johnson Medical School in New Brunswick, N.J.
Gloria Bachmann, MD, is professor of obstetrics and gynecology at the school and medical director of its partner, the PROUD Gender Center of New Jersey. PROUD stands for “Promoting Respect, Outreach, Understanding, and Dignity,” and the center provides comprehensive care for transgender and nonbinary patients in one location.
Dr. Bachmann said Rutgers takes a team approach with both instructors and learners teaching medical students about transgender care. The teachers are not only professors in traditional classroom lectures, but patient navigators and nurses at the PROUD center, established as part of the medical school in 2020. Students learn from the navigators, for instance, how to help patients through the spectrum of inpatient and outpatient care.
“All of our learners do get to care for individuals who identify as transgender,” said Dr. Bachmann.
Among the improvements in educating students on transgender care over the years, she said, is the emphasis on social determinants of health. In the transgender population, initial questions may include whether the person is able to access care through insurance as laws vary widely on what care and procedures are covered.
As another example, Dr. Bachmann cites: “If they are seen on an emergency basis and are sent home with medication and follow-up, can they afford it?”
Another consideration is whether there is a home to which they can return.
“Many individuals who are transgender may not have a home. Their family may not be accepting of them. Therefore, it’s the social determinants of health as well as their transgender identity that have to be put into the equation of best care,” she said.
Giving back to the trans community
Mr. Noto doesn’t know whether he will specialize in gender medicine, but he is committed to serving the transgender community in whatever physician path he chooses.
He said he realizes he is fortunate to have strong family support and good insurance and that he can afford fees, such as the copay to see transgender care specialists. Many in the community do not have those resources and are likely to get care “only if they have to.”
At Tulane, training in transgender care starts during orientation week and continues on different levels, with different options, throughout medical school and residency, he added.
Mr. Noto said he would like to see more mandatory learning such as a “queer-centered exam, where you have to give an organ inventory and you have to ask patients if it’s OK to talk about X, Y, and Z.” He’d also like more opportunities for clinical interaction with transgender patients, such as queer-centered rotations.
When physicians aren’t well trained in transgender care, you have patients educating the doctors, which, Mr. Noto said, should not be acceptable.
“People come to you on their worst day. And to not be informed about them in my mind is negligent. In what other population can you choose not to learn about someone just because you don’t want to?” he said.
A version of this article first appeared on Medscape.com.
Klay Noto wants to be the kind of doctor he never had when he began to question his gender identity.
A second-year student at Tulane University in New Orleans, he wants to listen compassionately to patients’ concerns and recognize the hurt when they question who they are. He will be the kind of doctor who knows that a breast exam can be traumatizing if someone has been breast binding or that instructing a patient to take everything off and put on a gown can be triggering for someone with gender dysphoria.
Being in the room for hard conversations is part of why he pursued med school. “There aren’t many LGBT people in medicine and as I started to understand all the dynamics that go into it, I started to see that I could do it and I could be that different kind of doctor,” he told this news organization.
Mr. Noto, who transitioned after college, wants to see more transgender people like himself teaching gender medicine, and for all medical students to be trained in what it means to be transgender and how to give compassionate and comprehensive care to all patients.
Gains have been made in providing curriculum in transgender care that trains medical students in such concepts as how to approach gender identity with sensitivity and how to manage hormone therapy and surgery for transitioning patients who request that, according to those interviewed for this story.
But they agree there’s a long way to go to having widespread medical school integration of the health care needs of about 1.4 million transgender people in the United States.
According to the Association of American Medical Colleges (AAMC) Curriculum Inventory data collected from 131 U.S. medical schools, more than 65% offered some form of transgender-related education in 2018, and more than 80% of those provided such curriculum in required courses.
Lack of transgender, nonbinary faculty
Jason Klein, MD, is a pediatric endocrinologist and medical director of the Transgender Youth Health Program at New York (N.Y.) University.
He said in an interview that the number of programs nationally that have gender medicine as a structured part of their curriculum has increased over the last 5-10 years, but that education is not standardized from program to program.
The program at NYU includes lecture-style learning, case presentations, real-world conversations with people in the community, group discussions, and patient care, Dr. Klein said. There are formal lectures as part of adolescent medicine where students learn the differences between gender and sexual identity, and education on medical treatment of transgender and nonbinary adolescents, starting with puberty blockers and moving into affirming hormones.
Doctors also learn to know their limits and decide when to refer patients to a specialist.
“The focus is really about empathic and supportive care,” said Dr. Klein, assistant professor in the department of pediatrics at Hassenfeld Children’s Hospital at NYU Langone Health. “It’s about communication and understanding and the language we use and how to deliver affirming care in a health care setting in general.”
Imagine the potential stressors, he said, of a transgender person entering a typical health care setting. The electronic health record may only have room for the legal name of a person and not the name a person may currently be using. The intake form typically asks patients to check either male or female. The bathrooms give the same two choices.
“Every physician should know how to speak with, treat, emote with, and empathize with care for the trans and nonbinary individual,” Dr. Klein said.
Dr. Klein noted there is a glaring shortage of trans and nonbinary physicians to lead efforts to expand education on integrating the medical, psychological, and psychosocial care that patients will receive.
Currently, gender medicine is not included on board exams for adolescent medicine or endocrinology, he said.
“Adding formal training in gender medicine to board exams would really help solidify the importance of this arena of medicine,” he noted.
First AAMC standards
In 2014, the AAMC released the first standards to guide curricula across medical school and residency to support training doctors to be competent in caring for transgender patients.
The standards include recommending that all doctors be able to communicate with patients related to their gender identity and understand how to deliver high-quality care to transgender and gender-diverse patients within their specialty, Kristen L. Eckstrand, MD, a coauthor of the guidelines, told this news organization.
“Many medical schools have developed their own curricula to meet these standards,” said Dr. Eckstrand, medical director for LGBTQIA+ Health at the University of Pittsburgh Medical Center.
Norma Poll-Hunter, PhD, AAMC’s senior director for workforce diversity, noted that the organization recently released its diversity, equity, and inclusion competencies that guide the medical education of students, residents, and faculty.
Dr. Poll-Hunter told this news organization that AAMC partners with the Building the Next Generation of Academic Physicians LGBT Health Workforce Conference “to support safe spaces for scholarly efforts and mentorship to advance this area of work.”
Team approach at Rutgers
Among the medical schools that incorporate comprehensive transgender care into the curriculum is Rutgers University’s Robert Wood Johnson Medical School in New Brunswick, N.J.
Gloria Bachmann, MD, is professor of obstetrics and gynecology at the school and medical director of its partner, the PROUD Gender Center of New Jersey. PROUD stands for “Promoting Respect, Outreach, Understanding, and Dignity,” and the center provides comprehensive care for transgender and nonbinary patients in one location.
Dr. Bachmann said Rutgers takes a team approach with both instructors and learners teaching medical students about transgender care. The teachers are not only professors in traditional classroom lectures, but patient navigators and nurses at the PROUD center, established as part of the medical school in 2020. Students learn from the navigators, for instance, how to help patients through the spectrum of inpatient and outpatient care.
“All of our learners do get to care for individuals who identify as transgender,” said Dr. Bachmann.
Among the improvements in educating students on transgender care over the years, she said, is the emphasis on social determinants of health. In the transgender population, initial questions may include whether the person is able to access care through insurance as laws vary widely on what care and procedures are covered.
As another example, Dr. Bachmann cites: “If they are seen on an emergency basis and are sent home with medication and follow-up, can they afford it?”
Another consideration is whether there is a home to which they can return.
“Many individuals who are transgender may not have a home. Their family may not be accepting of them. Therefore, it’s the social determinants of health as well as their transgender identity that have to be put into the equation of best care,” she said.
Giving back to the trans community
Mr. Noto doesn’t know whether he will specialize in gender medicine, but he is committed to serving the transgender community in whatever physician path he chooses.
He said he realizes he is fortunate to have strong family support and good insurance and that he can afford fees, such as the copay to see transgender care specialists. Many in the community do not have those resources and are likely to get care “only if they have to.”
At Tulane, training in transgender care starts during orientation week and continues on different levels, with different options, throughout medical school and residency, he added.
Mr. Noto said he would like to see more mandatory learning such as a “queer-centered exam, where you have to give an organ inventory and you have to ask patients if it’s OK to talk about X, Y, and Z.” He’d also like more opportunities for clinical interaction with transgender patients, such as queer-centered rotations.
When physicians aren’t well trained in transgender care, you have patients educating the doctors, which, Mr. Noto said, should not be acceptable.
“People come to you on their worst day. And to not be informed about them in my mind is negligent. In what other population can you choose not to learn about someone just because you don’t want to?” he said.
A version of this article first appeared on Medscape.com.
Klay Noto wants to be the kind of doctor he never had when he began to question his gender identity.
A second-year student at Tulane University in New Orleans, he wants to listen compassionately to patients’ concerns and recognize the hurt when they question who they are. He will be the kind of doctor who knows that a breast exam can be traumatizing if someone has been breast binding or that instructing a patient to take everything off and put on a gown can be triggering for someone with gender dysphoria.
Being in the room for hard conversations is part of why he pursued med school. “There aren’t many LGBT people in medicine and as I started to understand all the dynamics that go into it, I started to see that I could do it and I could be that different kind of doctor,” he told this news organization.
Mr. Noto, who transitioned after college, wants to see more transgender people like himself teaching gender medicine, and for all medical students to be trained in what it means to be transgender and how to give compassionate and comprehensive care to all patients.
Gains have been made in providing curriculum in transgender care that trains medical students in such concepts as how to approach gender identity with sensitivity and how to manage hormone therapy and surgery for transitioning patients who request that, according to those interviewed for this story.
But they agree there’s a long way to go to having widespread medical school integration of the health care needs of about 1.4 million transgender people in the United States.
According to the Association of American Medical Colleges (AAMC) Curriculum Inventory data collected from 131 U.S. medical schools, more than 65% offered some form of transgender-related education in 2018, and more than 80% of those provided such curriculum in required courses.
Lack of transgender, nonbinary faculty
Jason Klein, MD, is a pediatric endocrinologist and medical director of the Transgender Youth Health Program at New York (N.Y.) University.
He said in an interview that the number of programs nationally that have gender medicine as a structured part of their curriculum has increased over the last 5-10 years, but that education is not standardized from program to program.
The program at NYU includes lecture-style learning, case presentations, real-world conversations with people in the community, group discussions, and patient care, Dr. Klein said. There are formal lectures as part of adolescent medicine where students learn the differences between gender and sexual identity, and education on medical treatment of transgender and nonbinary adolescents, starting with puberty blockers and moving into affirming hormones.
Doctors also learn to know their limits and decide when to refer patients to a specialist.
“The focus is really about empathic and supportive care,” said Dr. Klein, assistant professor in the department of pediatrics at Hassenfeld Children’s Hospital at NYU Langone Health. “It’s about communication and understanding and the language we use and how to deliver affirming care in a health care setting in general.”
Imagine the potential stressors, he said, of a transgender person entering a typical health care setting. The electronic health record may only have room for the legal name of a person and not the name a person may currently be using. The intake form typically asks patients to check either male or female. The bathrooms give the same two choices.
“Every physician should know how to speak with, treat, emote with, and empathize with care for the trans and nonbinary individual,” Dr. Klein said.
Dr. Klein noted there is a glaring shortage of trans and nonbinary physicians to lead efforts to expand education on integrating the medical, psychological, and psychosocial care that patients will receive.
Currently, gender medicine is not included on board exams for adolescent medicine or endocrinology, he said.
“Adding formal training in gender medicine to board exams would really help solidify the importance of this arena of medicine,” he noted.
First AAMC standards
In 2014, the AAMC released the first standards to guide curricula across medical school and residency to support training doctors to be competent in caring for transgender patients.
The standards include recommending that all doctors be able to communicate with patients related to their gender identity and understand how to deliver high-quality care to transgender and gender-diverse patients within their specialty, Kristen L. Eckstrand, MD, a coauthor of the guidelines, told this news organization.
“Many medical schools have developed their own curricula to meet these standards,” said Dr. Eckstrand, medical director for LGBTQIA+ Health at the University of Pittsburgh Medical Center.
Norma Poll-Hunter, PhD, AAMC’s senior director for workforce diversity, noted that the organization recently released its diversity, equity, and inclusion competencies that guide the medical education of students, residents, and faculty.
Dr. Poll-Hunter told this news organization that AAMC partners with the Building the Next Generation of Academic Physicians LGBT Health Workforce Conference “to support safe spaces for scholarly efforts and mentorship to advance this area of work.”
Team approach at Rutgers
Among the medical schools that incorporate comprehensive transgender care into the curriculum is Rutgers University’s Robert Wood Johnson Medical School in New Brunswick, N.J.
Gloria Bachmann, MD, is professor of obstetrics and gynecology at the school and medical director of its partner, the PROUD Gender Center of New Jersey. PROUD stands for “Promoting Respect, Outreach, Understanding, and Dignity,” and the center provides comprehensive care for transgender and nonbinary patients in one location.
Dr. Bachmann said Rutgers takes a team approach with both instructors and learners teaching medical students about transgender care. The teachers are not only professors in traditional classroom lectures, but patient navigators and nurses at the PROUD center, established as part of the medical school in 2020. Students learn from the navigators, for instance, how to help patients through the spectrum of inpatient and outpatient care.
“All of our learners do get to care for individuals who identify as transgender,” said Dr. Bachmann.
Among the improvements in educating students on transgender care over the years, she said, is the emphasis on social determinants of health. In the transgender population, initial questions may include whether the person is able to access care through insurance as laws vary widely on what care and procedures are covered.
As another example, Dr. Bachmann cites: “If they are seen on an emergency basis and are sent home with medication and follow-up, can they afford it?”
Another consideration is whether there is a home to which they can return.
“Many individuals who are transgender may not have a home. Their family may not be accepting of them. Therefore, it’s the social determinants of health as well as their transgender identity that have to be put into the equation of best care,” she said.
Giving back to the trans community
Mr. Noto doesn’t know whether he will specialize in gender medicine, but he is committed to serving the transgender community in whatever physician path he chooses.
He said he realizes he is fortunate to have strong family support and good insurance and that he can afford fees, such as the copay to see transgender care specialists. Many in the community do not have those resources and are likely to get care “only if they have to.”
At Tulane, training in transgender care starts during orientation week and continues on different levels, with different options, throughout medical school and residency, he added.
Mr. Noto said he would like to see more mandatory learning such as a “queer-centered exam, where you have to give an organ inventory and you have to ask patients if it’s OK to talk about X, Y, and Z.” He’d also like more opportunities for clinical interaction with transgender patients, such as queer-centered rotations.
When physicians aren’t well trained in transgender care, you have patients educating the doctors, which, Mr. Noto said, should not be acceptable.
“People come to you on their worst day. And to not be informed about them in my mind is negligent. In what other population can you choose not to learn about someone just because you don’t want to?” he said.
A version of this article first appeared on Medscape.com.
Central centrifugal cicatricial alopecia
THE PRESENTATION
A Early central centrifugal cicatricial alopecia with a small central patch of hair loss in a 45-year-old Black woman.
B Late central centrifugal cicatricial alopecia with a large central patch of hair loss in a 43-year-old Black woman.
Scarring alopecia is a collection of hair loss disorders including chronic cutaneous lupus erythematosus (discoid lupus), lichen planopilaris, dissecting cellulitis, acne keloidalis, and central centrifugal cicatricial alopecia.1 CCCA (formerly hot comb alopecia or follicular degeneration syndrome) is a progressive, scarring, inflammatory alopecia and represents the most common form of scarring alopecia in women of African descent. It results in permanent destruction of hair follicles.
Epidemiology
CCCA predominantly affects women of African descent but also may affect men. The prevalence of CCCA in those of African descent has varied in the literature. Khumalo2 reported a prevalence of 1.2% for women younger than 50 years and 6.7% in women older than 50 years. CCCA has been reported in other ethnic groups, such as those of Asian descent.3
Historically, hair care practices that are more common in those of African descent, such as high-tension hairstyles as well as heat and chemical hair relaxers, were implicated in the development of CCCA. However, the causes of CCCA are most likely multifactorial, including family history, genetic mutations, and hair care practices.4-7 PADI3 mutations likely predispose some women to CCCA. Mutations in PADI3, which encodes peptidyl arginine deiminase 3 (an enzyme that modifies proteins crucial for the formation of hair shafts), were found in some patients with CCCA.8 Moreover, other genetic defects also likely play a role.7
Key clinical features
Early recognition is key for patients with CCCA.
- CCCA begins in the central scalp (crown area, vertex) and spreads centrifugally.
- Scalp symptoms such as tenderness, pain, a tingling or crawling sensation, and itching may occur.9 Some patients may not have any symptoms at all, and hair loss may progress painlessly.
- Central hair breakage—forme fruste CCCA—may be a presenting sign of CCCA.9
- Loss of follicular ostia and mottled hypopigmented and hyperpigmented macules are common findings.6
- CCCA can be diagnosed clinically and by histopathology.
Worth noting
Patients may experience hair loss and scalp symptoms for years before seeking medical evaluation. In some cultures, hair breakage or itching on the top of the scalp may be viewed as a normal occurrence in life.
It is important to set patient expectations that CCCA is a scarring alopecia, and the initial goal often is to maintain the patient's existing hair. However, hair and areas responding to treatment should still be treated. Without any intervention, the resulting scarring from CCCA may permanently scar follicles on the entire scalp.
Continue to: Due to the inflammatory...
Due to the inflammatory nature of CCCA, potent topical corticosteroids (eg, clobetasol propionate), intralesional corticosteroids (eg, triamcinolone acetonide), and oral antiinflammatory agents (eg, doxycycline) are utilized in the treatment of CCCA. Minoxidil is another treatment option. Adjuvant therapies such as topical metformin also have been tried.10 Importantly, treatment of CCCA may halt further permanent destruction of hair follicles, but scalp symptoms may reappear periodically and require re-treatment with anti-inflammatory agents.
Health care highlight
Thorough scalp examination and awareness of clinical features of CCCA may prompt earlier diagnosis and prevent future severe permanent alopecia. Clinicians should encourage patients with suggestive signs or symptoms of CCCA to seek care from a dermatologist.
1. Sperling LC. Scarring alopecia and the dermatopathologist. J Cutan Pathol. 2001;28:333-342. doi:10.1034/ j.1600-0560.2001.280701.x
2. Khumalo NP. Prevalence of central centrifugal cicatricial alopecia. Arch Dermatol. 2011;147:1453-1454. doi:10.1001/ archderm.147.12.1453
3. Su HJ, Cheng AY, Liu CH, et al. Primary scarring alopecia: a retrospective study of 89 patients in Taiwan [published online January 16, 2018]. J Dermatol. 2018;45:450-455. doi:10.1111/ 1346-8138.14217
4. Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006;25:41-50
5. Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012;51(supp 1):17-20, 20-23.
6. Ogunleye TA, Quinn CR, McMichael A. Alopecia. In: Taylor SC, Kelly AP, Lim HW, et al, eds. Dermatology for Skin of Color. McGraw Hill; 2016:253-264.
7. Uitto J. Genetic susceptibility to alopecia [published online February 13, 2019]. N Engl J Med. 2019;380:873-876. doi:10.1056/ NEJMe1900042
8. Malki L, Sarig O, Romano MT, et al. Variant PADI3 in central centrifugal cicatricial alopecia. N Engl J Med. 2019;380:833-841.
9. Callender VD, Wright DR, Davis EC, et al. Hair breakage as a presenting sign of early or occult central centrifugal cicatricial alopecia: clinicopathologic findings in 9 patients. Arch Dermatol. 2012;148:1047-1052.
10. Araoye EF, Thomas JAL, Aguh CU. Hair regrowth in 2 patients with recalcitrant central centrifugal cicatricial alopecia after use of topical metformin. JAAD Case Rep. 2020;6:106-108. doi:10.1016/ j.jdcr.2019.12.008.
THE PRESENTATION
A Early central centrifugal cicatricial alopecia with a small central patch of hair loss in a 45-year-old Black woman.
B Late central centrifugal cicatricial alopecia with a large central patch of hair loss in a 43-year-old Black woman.
Scarring alopecia is a collection of hair loss disorders including chronic cutaneous lupus erythematosus (discoid lupus), lichen planopilaris, dissecting cellulitis, acne keloidalis, and central centrifugal cicatricial alopecia.1 CCCA (formerly hot comb alopecia or follicular degeneration syndrome) is a progressive, scarring, inflammatory alopecia and represents the most common form of scarring alopecia in women of African descent. It results in permanent destruction of hair follicles.
Epidemiology
CCCA predominantly affects women of African descent but also may affect men. The prevalence of CCCA in those of African descent has varied in the literature. Khumalo2 reported a prevalence of 1.2% for women younger than 50 years and 6.7% in women older than 50 years. CCCA has been reported in other ethnic groups, such as those of Asian descent.3
Historically, hair care practices that are more common in those of African descent, such as high-tension hairstyles as well as heat and chemical hair relaxers, were implicated in the development of CCCA. However, the causes of CCCA are most likely multifactorial, including family history, genetic mutations, and hair care practices.4-7 PADI3 mutations likely predispose some women to CCCA. Mutations in PADI3, which encodes peptidyl arginine deiminase 3 (an enzyme that modifies proteins crucial for the formation of hair shafts), were found in some patients with CCCA.8 Moreover, other genetic defects also likely play a role.7
Key clinical features
Early recognition is key for patients with CCCA.
- CCCA begins in the central scalp (crown area, vertex) and spreads centrifugally.
- Scalp symptoms such as tenderness, pain, a tingling or crawling sensation, and itching may occur.9 Some patients may not have any symptoms at all, and hair loss may progress painlessly.
- Central hair breakage—forme fruste CCCA—may be a presenting sign of CCCA.9
- Loss of follicular ostia and mottled hypopigmented and hyperpigmented macules are common findings.6
- CCCA can be diagnosed clinically and by histopathology.
Worth noting
Patients may experience hair loss and scalp symptoms for years before seeking medical evaluation. In some cultures, hair breakage or itching on the top of the scalp may be viewed as a normal occurrence in life.
It is important to set patient expectations that CCCA is a scarring alopecia, and the initial goal often is to maintain the patient's existing hair. However, hair and areas responding to treatment should still be treated. Without any intervention, the resulting scarring from CCCA may permanently scar follicles on the entire scalp.
Continue to: Due to the inflammatory...
Due to the inflammatory nature of CCCA, potent topical corticosteroids (eg, clobetasol propionate), intralesional corticosteroids (eg, triamcinolone acetonide), and oral antiinflammatory agents (eg, doxycycline) are utilized in the treatment of CCCA. Minoxidil is another treatment option. Adjuvant therapies such as topical metformin also have been tried.10 Importantly, treatment of CCCA may halt further permanent destruction of hair follicles, but scalp symptoms may reappear periodically and require re-treatment with anti-inflammatory agents.
Health care highlight
Thorough scalp examination and awareness of clinical features of CCCA may prompt earlier diagnosis and prevent future severe permanent alopecia. Clinicians should encourage patients with suggestive signs or symptoms of CCCA to seek care from a dermatologist.
THE PRESENTATION
A Early central centrifugal cicatricial alopecia with a small central patch of hair loss in a 45-year-old Black woman.
B Late central centrifugal cicatricial alopecia with a large central patch of hair loss in a 43-year-old Black woman.
Scarring alopecia is a collection of hair loss disorders including chronic cutaneous lupus erythematosus (discoid lupus), lichen planopilaris, dissecting cellulitis, acne keloidalis, and central centrifugal cicatricial alopecia.1 CCCA (formerly hot comb alopecia or follicular degeneration syndrome) is a progressive, scarring, inflammatory alopecia and represents the most common form of scarring alopecia in women of African descent. It results in permanent destruction of hair follicles.
Epidemiology
CCCA predominantly affects women of African descent but also may affect men. The prevalence of CCCA in those of African descent has varied in the literature. Khumalo2 reported a prevalence of 1.2% for women younger than 50 years and 6.7% in women older than 50 years. CCCA has been reported in other ethnic groups, such as those of Asian descent.3
Historically, hair care practices that are more common in those of African descent, such as high-tension hairstyles as well as heat and chemical hair relaxers, were implicated in the development of CCCA. However, the causes of CCCA are most likely multifactorial, including family history, genetic mutations, and hair care practices.4-7 PADI3 mutations likely predispose some women to CCCA. Mutations in PADI3, which encodes peptidyl arginine deiminase 3 (an enzyme that modifies proteins crucial for the formation of hair shafts), were found in some patients with CCCA.8 Moreover, other genetic defects also likely play a role.7
Key clinical features
Early recognition is key for patients with CCCA.
- CCCA begins in the central scalp (crown area, vertex) and spreads centrifugally.
- Scalp symptoms such as tenderness, pain, a tingling or crawling sensation, and itching may occur.9 Some patients may not have any symptoms at all, and hair loss may progress painlessly.
- Central hair breakage—forme fruste CCCA—may be a presenting sign of CCCA.9
- Loss of follicular ostia and mottled hypopigmented and hyperpigmented macules are common findings.6
- CCCA can be diagnosed clinically and by histopathology.
Worth noting
Patients may experience hair loss and scalp symptoms for years before seeking medical evaluation. In some cultures, hair breakage or itching on the top of the scalp may be viewed as a normal occurrence in life.
It is important to set patient expectations that CCCA is a scarring alopecia, and the initial goal often is to maintain the patient's existing hair. However, hair and areas responding to treatment should still be treated. Without any intervention, the resulting scarring from CCCA may permanently scar follicles on the entire scalp.
Continue to: Due to the inflammatory...
Due to the inflammatory nature of CCCA, potent topical corticosteroids (eg, clobetasol propionate), intralesional corticosteroids (eg, triamcinolone acetonide), and oral antiinflammatory agents (eg, doxycycline) are utilized in the treatment of CCCA. Minoxidil is another treatment option. Adjuvant therapies such as topical metformin also have been tried.10 Importantly, treatment of CCCA may halt further permanent destruction of hair follicles, but scalp symptoms may reappear periodically and require re-treatment with anti-inflammatory agents.
Health care highlight
Thorough scalp examination and awareness of clinical features of CCCA may prompt earlier diagnosis and prevent future severe permanent alopecia. Clinicians should encourage patients with suggestive signs or symptoms of CCCA to seek care from a dermatologist.
1. Sperling LC. Scarring alopecia and the dermatopathologist. J Cutan Pathol. 2001;28:333-342. doi:10.1034/ j.1600-0560.2001.280701.x
2. Khumalo NP. Prevalence of central centrifugal cicatricial alopecia. Arch Dermatol. 2011;147:1453-1454. doi:10.1001/ archderm.147.12.1453
3. Su HJ, Cheng AY, Liu CH, et al. Primary scarring alopecia: a retrospective study of 89 patients in Taiwan [published online January 16, 2018]. J Dermatol. 2018;45:450-455. doi:10.1111/ 1346-8138.14217
4. Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006;25:41-50
5. Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012;51(supp 1):17-20, 20-23.
6. Ogunleye TA, Quinn CR, McMichael A. Alopecia. In: Taylor SC, Kelly AP, Lim HW, et al, eds. Dermatology for Skin of Color. McGraw Hill; 2016:253-264.
7. Uitto J. Genetic susceptibility to alopecia [published online February 13, 2019]. N Engl J Med. 2019;380:873-876. doi:10.1056/ NEJMe1900042
8. Malki L, Sarig O, Romano MT, et al. Variant PADI3 in central centrifugal cicatricial alopecia. N Engl J Med. 2019;380:833-841.
9. Callender VD, Wright DR, Davis EC, et al. Hair breakage as a presenting sign of early or occult central centrifugal cicatricial alopecia: clinicopathologic findings in 9 patients. Arch Dermatol. 2012;148:1047-1052.
10. Araoye EF, Thomas JAL, Aguh CU. Hair regrowth in 2 patients with recalcitrant central centrifugal cicatricial alopecia after use of topical metformin. JAAD Case Rep. 2020;6:106-108. doi:10.1016/ j.jdcr.2019.12.008.
1. Sperling LC. Scarring alopecia and the dermatopathologist. J Cutan Pathol. 2001;28:333-342. doi:10.1034/ j.1600-0560.2001.280701.x
2. Khumalo NP. Prevalence of central centrifugal cicatricial alopecia. Arch Dermatol. 2011;147:1453-1454. doi:10.1001/ archderm.147.12.1453
3. Su HJ, Cheng AY, Liu CH, et al. Primary scarring alopecia: a retrospective study of 89 patients in Taiwan [published online January 16, 2018]. J Dermatol. 2018;45:450-455. doi:10.1111/ 1346-8138.14217
4. Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006;25:41-50
5. Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012;51(supp 1):17-20, 20-23.
6. Ogunleye TA, Quinn CR, McMichael A. Alopecia. In: Taylor SC, Kelly AP, Lim HW, et al, eds. Dermatology for Skin of Color. McGraw Hill; 2016:253-264.
7. Uitto J. Genetic susceptibility to alopecia [published online February 13, 2019]. N Engl J Med. 2019;380:873-876. doi:10.1056/ NEJMe1900042
8. Malki L, Sarig O, Romano MT, et al. Variant PADI3 in central centrifugal cicatricial alopecia. N Engl J Med. 2019;380:833-841.
9. Callender VD, Wright DR, Davis EC, et al. Hair breakage as a presenting sign of early or occult central centrifugal cicatricial alopecia: clinicopathologic findings in 9 patients. Arch Dermatol. 2012;148:1047-1052.
10. Araoye EF, Thomas JAL, Aguh CU. Hair regrowth in 2 patients with recalcitrant central centrifugal cicatricial alopecia after use of topical metformin. JAAD Case Rep. 2020;6:106-108. doi:10.1016/ j.jdcr.2019.12.008.
Sex differences in COPD slow to be recognized, treated
When Sigmund Freud claimed that “anatomy is destiny” he was referring to anatomical sex as a determinant of personality traits. Expert consensus statements have previously offered some recommendations for managing these syndromes, but clinical data are scarce, so the present review “is intended to establish a starting point for future research,”
That notion has been widely discredited, but Freud appears to be inadvertently right in one respect: When it comes to chronic obstructive pulmonary disease (COPD), anatomy really is destiny, and sex may be as well, pulmonary researchers say.
There is a growing body of evidence to indicate that COPD affects men and women differently, and that men and women patients with COPD require different clinical management. Yet women are often underdiagnosed or misdiagnosed, partly because of poorly understood sex differences, but also because of cultural biases.
But plunging any farther into the weeds, it’s important to define terms. Although various investigators have used the terms “sex” and “gender” interchangeably, sex is the preferred term when referring to biological attributes of individual patients, while gender refers to personal identity.
These distinctions are important, contended Amik Sodhi, MBBS, MPH, from the division of allergy, pulmonology, and critical care medicine at the University of Wisconsin–Madison.
“Sex is essentially a biologic construct, so it’s got to do with the sex chromosomes, the genetics of that person, and it refers to the anatomic variations that can change susceptibility to different diseases,” she said in an interview.
An example of sex differences or “sexual dimorphism” can be found in a recent meta-analysis of sex-based genetic associations by Megan Hardin, MD, MPH from Brigham & Women’s Hospital in Boston and colleagues.
They reported that CELSR1, a gene involved in fetal lung development, was expressed more among women than among men and that a single nucleotide polymorphism in the gene was associated with COPD among women smokers, but not among men smokers.
The finding points to a potential risk locus for COPD in women, and could help shed light on sexual dimorphism in COPD, Dr. Hardin and colleagues said.
In contrast to sex, “gender is more of a psychosocial construct which can impact how diseases manifest themselves, how they are potentially managed, and what outcomes might occur for that particular disease,” Dr. Sodhi said.
She and her colleagues recently published a review of sex and gender in common lung disorders and sleep in the journal CHEST, where they wrote that the “influence of sex and gender is portrayed in epidemiological data, disease pathogenesis and pathophysiology, clinical manifestations, response to treatment, access to care, and health outcomes. Hence, sex and gender should be considered in all types of research, clinical practice and educational curricula.”
For example, as previously reported at the 2021 annual meeting of the American Thoracic Society, sex-specific differences in the severity of symptoms and prevalence of comorbidities in patients with COPD may point to different criteria for diagnosing cardiac comorbidities in women and men.
Those conclusions came from a retrospective analysis of data on 795 women and 1,251 men with GOLD (Global Initiative for Chronic Obstructive Lung Disease) class 1-3 disease.
The investigators looked at the patients’ clinical history, comorbidities, lung function, COPD Assessment Test scores, and modified Medical Research Council (mMRC) dyspnea score, and found significant differences between men and women for most functional parameters and comorbidities, and for CAT items of cough, phlegm, and energy.
In logistic regression analysis, predictors for cardiac disease in men were energy, mMRC score, smoking status, body mass index, age, and spirometric lung function, but in women only age was significantly predictive for cardiac disease.
An example of gender effects on COPD differences in men and women is the increase in cigarette advertising aimed at women in the 1960s and the advent of women-targeted brands such as Virginia Slims, which in turn lead to increased smoking rates among women. In addition, in the developing world, where the sex/gender gap in COPD is narrowing, women tend to have greater exposure to wood smoke and cooking fuels in unventilated or poorly ventilated spaces, compared with men.
Increasing incidence among women
According to the Centers for Disease Control and Prevention, chronic lower respiratory diseases, primarily COPD, were the fourth-leading cause of death in women in the United States in 2018, following only heart disease, cancer, and accidents/injuries.
And as a CDC analysis of data from the 2013 Behavioral Risk Factor Surveillance System showed, women were more likely to report being told by a physician that they had COPD than did men (6.6%, compared with 5.4%).
Dr. Sodhi and colleagues noted that, at all time points examined from 2005 to 2014, women had a higher proportion than men of COPD hospitalizations and in-hospital deaths. They also noted that female sex is associated with a threefold risk for severe early-onset COPD, and that women with COPD have lower diffusion capacity of lungs for carbon monoxide, despite having higher predicted forced expiratory volume in 1 second, compared with men.
“Historically, COPD wasn’t a disease that was so prevalent in women. It’s been in the past 20 years that the trends have changed,” said Patricia Silveyra, MSc, PhD, ATSF, associate professor of environmental and occupational health at Indiana University, Bloomington.
The increasing prevalence of COPD among women cannot be explained by smoking alone, she said in an interview.
“It used to be thought that it was because more women smoked, but actually a lot of women who don’t smoke can develop COPD, so it appears to be probably something environmental, but because it used to be a disease of older men, in the clinic there was also a bias to diagnose men with COPD, and women with asthma, so a lot of women went underdiagnosed,” Dr. Silveyra said.
In their review, Dr. Sodhi and colleagues noted that women with COPD “may be underdiagnosed as a result of having different symptoms from those classically recognized. Reasons for underdiagnosis or a delay in diagnosis may also be due to lack of a formal evaluation with spirometry, women seeking care later in the course of disease, physician bias, or associated fatigue or depression misdirecting diagnostic strategies. Underdiagnosis may be associated with psychological distress and worse health-related quality of life.”
Although the evidence is mixed, women tend to present more frequently with the chronic bronchitis phenotype of COPD, compared with the emphysema phenotype, and women tend to have greater degrees of pulmonary function impairment when exposed to tobacco smoke, even after controlling for differences in height and weight.
“For the same amount of exposure to tobacco smoke, females are likely to develop more severe airflow limitation at an earlier age than males, and have more exacerbation,” Dr. Sodhi and colleagues wrote.
Both Dr. Silveyra and Dr. Sodhi said that reason why men and women differ in their physiological reactions to smoke are still unknown.
Sex differences in drug responses
There is only limited evidence to indicate that women and men respond differently to various therapeutic agents, but what is clear is that more research into this area is needed, Dr. Sodhi and Dr. Silveyra said.
For example, among the few studies that have documented sex differences, one showed no sex differences in the efficacy of salmeterol/fluticasone combination therapy for reducing exacerbations or improving quality of life, whereas another showed that women were more likely than men to experience COPD symptoms or exacerbations after stopping inhaled corticosteroids, Dr. Sodhi and colleagues noted.
Both Dr. Sodhi and Dr. Silveyra emphasized the need for clinical trials that study the effects of sex on treatment outcomes in COPD, which could lead to better, more personalized therapeutic regimens that take sex and gender into account.
Dr. Sodhi and colleagues offered the following advice to clinicians: “Interaction with female patients should take into account that their symptoms may not conform to traditionally accepted presentations. Challenges exist for female patients at all levels of health care interaction and as clinicians we need to acknowledge the bias and willfully work toward recognition and elimination of unconscious and conscious bias. Empowering our patients to have frank discussions with their health care team when they perceive bias is another step to help promote equity.”
The review by Dr. Sodhi and colleagues was supported by grants from the National Institutes of Health. Dr. Sodhi and Dr. Silveyra reported having no conflicts of interest to disclose.
When Sigmund Freud claimed that “anatomy is destiny” he was referring to anatomical sex as a determinant of personality traits. Expert consensus statements have previously offered some recommendations for managing these syndromes, but clinical data are scarce, so the present review “is intended to establish a starting point for future research,”
That notion has been widely discredited, but Freud appears to be inadvertently right in one respect: When it comes to chronic obstructive pulmonary disease (COPD), anatomy really is destiny, and sex may be as well, pulmonary researchers say.
There is a growing body of evidence to indicate that COPD affects men and women differently, and that men and women patients with COPD require different clinical management. Yet women are often underdiagnosed or misdiagnosed, partly because of poorly understood sex differences, but also because of cultural biases.
But plunging any farther into the weeds, it’s important to define terms. Although various investigators have used the terms “sex” and “gender” interchangeably, sex is the preferred term when referring to biological attributes of individual patients, while gender refers to personal identity.
These distinctions are important, contended Amik Sodhi, MBBS, MPH, from the division of allergy, pulmonology, and critical care medicine at the University of Wisconsin–Madison.
“Sex is essentially a biologic construct, so it’s got to do with the sex chromosomes, the genetics of that person, and it refers to the anatomic variations that can change susceptibility to different diseases,” she said in an interview.
An example of sex differences or “sexual dimorphism” can be found in a recent meta-analysis of sex-based genetic associations by Megan Hardin, MD, MPH from Brigham & Women’s Hospital in Boston and colleagues.
They reported that CELSR1, a gene involved in fetal lung development, was expressed more among women than among men and that a single nucleotide polymorphism in the gene was associated with COPD among women smokers, but not among men smokers.
The finding points to a potential risk locus for COPD in women, and could help shed light on sexual dimorphism in COPD, Dr. Hardin and colleagues said.
In contrast to sex, “gender is more of a psychosocial construct which can impact how diseases manifest themselves, how they are potentially managed, and what outcomes might occur for that particular disease,” Dr. Sodhi said.
She and her colleagues recently published a review of sex and gender in common lung disorders and sleep in the journal CHEST, where they wrote that the “influence of sex and gender is portrayed in epidemiological data, disease pathogenesis and pathophysiology, clinical manifestations, response to treatment, access to care, and health outcomes. Hence, sex and gender should be considered in all types of research, clinical practice and educational curricula.”
For example, as previously reported at the 2021 annual meeting of the American Thoracic Society, sex-specific differences in the severity of symptoms and prevalence of comorbidities in patients with COPD may point to different criteria for diagnosing cardiac comorbidities in women and men.
Those conclusions came from a retrospective analysis of data on 795 women and 1,251 men with GOLD (Global Initiative for Chronic Obstructive Lung Disease) class 1-3 disease.
The investigators looked at the patients’ clinical history, comorbidities, lung function, COPD Assessment Test scores, and modified Medical Research Council (mMRC) dyspnea score, and found significant differences between men and women for most functional parameters and comorbidities, and for CAT items of cough, phlegm, and energy.
In logistic regression analysis, predictors for cardiac disease in men were energy, mMRC score, smoking status, body mass index, age, and spirometric lung function, but in women only age was significantly predictive for cardiac disease.
An example of gender effects on COPD differences in men and women is the increase in cigarette advertising aimed at women in the 1960s and the advent of women-targeted brands such as Virginia Slims, which in turn lead to increased smoking rates among women. In addition, in the developing world, where the sex/gender gap in COPD is narrowing, women tend to have greater exposure to wood smoke and cooking fuels in unventilated or poorly ventilated spaces, compared with men.
Increasing incidence among women
According to the Centers for Disease Control and Prevention, chronic lower respiratory diseases, primarily COPD, were the fourth-leading cause of death in women in the United States in 2018, following only heart disease, cancer, and accidents/injuries.
And as a CDC analysis of data from the 2013 Behavioral Risk Factor Surveillance System showed, women were more likely to report being told by a physician that they had COPD than did men (6.6%, compared with 5.4%).
Dr. Sodhi and colleagues noted that, at all time points examined from 2005 to 2014, women had a higher proportion than men of COPD hospitalizations and in-hospital deaths. They also noted that female sex is associated with a threefold risk for severe early-onset COPD, and that women with COPD have lower diffusion capacity of lungs for carbon monoxide, despite having higher predicted forced expiratory volume in 1 second, compared with men.
“Historically, COPD wasn’t a disease that was so prevalent in women. It’s been in the past 20 years that the trends have changed,” said Patricia Silveyra, MSc, PhD, ATSF, associate professor of environmental and occupational health at Indiana University, Bloomington.
The increasing prevalence of COPD among women cannot be explained by smoking alone, she said in an interview.
“It used to be thought that it was because more women smoked, but actually a lot of women who don’t smoke can develop COPD, so it appears to be probably something environmental, but because it used to be a disease of older men, in the clinic there was also a bias to diagnose men with COPD, and women with asthma, so a lot of women went underdiagnosed,” Dr. Silveyra said.
In their review, Dr. Sodhi and colleagues noted that women with COPD “may be underdiagnosed as a result of having different symptoms from those classically recognized. Reasons for underdiagnosis or a delay in diagnosis may also be due to lack of a formal evaluation with spirometry, women seeking care later in the course of disease, physician bias, or associated fatigue or depression misdirecting diagnostic strategies. Underdiagnosis may be associated with psychological distress and worse health-related quality of life.”
Although the evidence is mixed, women tend to present more frequently with the chronic bronchitis phenotype of COPD, compared with the emphysema phenotype, and women tend to have greater degrees of pulmonary function impairment when exposed to tobacco smoke, even after controlling for differences in height and weight.
“For the same amount of exposure to tobacco smoke, females are likely to develop more severe airflow limitation at an earlier age than males, and have more exacerbation,” Dr. Sodhi and colleagues wrote.
Both Dr. Silveyra and Dr. Sodhi said that reason why men and women differ in their physiological reactions to smoke are still unknown.
Sex differences in drug responses
There is only limited evidence to indicate that women and men respond differently to various therapeutic agents, but what is clear is that more research into this area is needed, Dr. Sodhi and Dr. Silveyra said.
For example, among the few studies that have documented sex differences, one showed no sex differences in the efficacy of salmeterol/fluticasone combination therapy for reducing exacerbations or improving quality of life, whereas another showed that women were more likely than men to experience COPD symptoms or exacerbations after stopping inhaled corticosteroids, Dr. Sodhi and colleagues noted.
Both Dr. Sodhi and Dr. Silveyra emphasized the need for clinical trials that study the effects of sex on treatment outcomes in COPD, which could lead to better, more personalized therapeutic regimens that take sex and gender into account.
Dr. Sodhi and colleagues offered the following advice to clinicians: “Interaction with female patients should take into account that their symptoms may not conform to traditionally accepted presentations. Challenges exist for female patients at all levels of health care interaction and as clinicians we need to acknowledge the bias and willfully work toward recognition and elimination of unconscious and conscious bias. Empowering our patients to have frank discussions with their health care team when they perceive bias is another step to help promote equity.”
The review by Dr. Sodhi and colleagues was supported by grants from the National Institutes of Health. Dr. Sodhi and Dr. Silveyra reported having no conflicts of interest to disclose.
When Sigmund Freud claimed that “anatomy is destiny” he was referring to anatomical sex as a determinant of personality traits. Expert consensus statements have previously offered some recommendations for managing these syndromes, but clinical data are scarce, so the present review “is intended to establish a starting point for future research,”
That notion has been widely discredited, but Freud appears to be inadvertently right in one respect: When it comes to chronic obstructive pulmonary disease (COPD), anatomy really is destiny, and sex may be as well, pulmonary researchers say.
There is a growing body of evidence to indicate that COPD affects men and women differently, and that men and women patients with COPD require different clinical management. Yet women are often underdiagnosed or misdiagnosed, partly because of poorly understood sex differences, but also because of cultural biases.
But plunging any farther into the weeds, it’s important to define terms. Although various investigators have used the terms “sex” and “gender” interchangeably, sex is the preferred term when referring to biological attributes of individual patients, while gender refers to personal identity.
These distinctions are important, contended Amik Sodhi, MBBS, MPH, from the division of allergy, pulmonology, and critical care medicine at the University of Wisconsin–Madison.
“Sex is essentially a biologic construct, so it’s got to do with the sex chromosomes, the genetics of that person, and it refers to the anatomic variations that can change susceptibility to different diseases,” she said in an interview.
An example of sex differences or “sexual dimorphism” can be found in a recent meta-analysis of sex-based genetic associations by Megan Hardin, MD, MPH from Brigham & Women’s Hospital in Boston and colleagues.
They reported that CELSR1, a gene involved in fetal lung development, was expressed more among women than among men and that a single nucleotide polymorphism in the gene was associated with COPD among women smokers, but not among men smokers.
The finding points to a potential risk locus for COPD in women, and could help shed light on sexual dimorphism in COPD, Dr. Hardin and colleagues said.
In contrast to sex, “gender is more of a psychosocial construct which can impact how diseases manifest themselves, how they are potentially managed, and what outcomes might occur for that particular disease,” Dr. Sodhi said.
She and her colleagues recently published a review of sex and gender in common lung disorders and sleep in the journal CHEST, where they wrote that the “influence of sex and gender is portrayed in epidemiological data, disease pathogenesis and pathophysiology, clinical manifestations, response to treatment, access to care, and health outcomes. Hence, sex and gender should be considered in all types of research, clinical practice and educational curricula.”
For example, as previously reported at the 2021 annual meeting of the American Thoracic Society, sex-specific differences in the severity of symptoms and prevalence of comorbidities in patients with COPD may point to different criteria for diagnosing cardiac comorbidities in women and men.
Those conclusions came from a retrospective analysis of data on 795 women and 1,251 men with GOLD (Global Initiative for Chronic Obstructive Lung Disease) class 1-3 disease.
The investigators looked at the patients’ clinical history, comorbidities, lung function, COPD Assessment Test scores, and modified Medical Research Council (mMRC) dyspnea score, and found significant differences between men and women for most functional parameters and comorbidities, and for CAT items of cough, phlegm, and energy.
In logistic regression analysis, predictors for cardiac disease in men were energy, mMRC score, smoking status, body mass index, age, and spirometric lung function, but in women only age was significantly predictive for cardiac disease.
An example of gender effects on COPD differences in men and women is the increase in cigarette advertising aimed at women in the 1960s and the advent of women-targeted brands such as Virginia Slims, which in turn lead to increased smoking rates among women. In addition, in the developing world, where the sex/gender gap in COPD is narrowing, women tend to have greater exposure to wood smoke and cooking fuels in unventilated or poorly ventilated spaces, compared with men.
Increasing incidence among women
According to the Centers for Disease Control and Prevention, chronic lower respiratory diseases, primarily COPD, were the fourth-leading cause of death in women in the United States in 2018, following only heart disease, cancer, and accidents/injuries.
And as a CDC analysis of data from the 2013 Behavioral Risk Factor Surveillance System showed, women were more likely to report being told by a physician that they had COPD than did men (6.6%, compared with 5.4%).
Dr. Sodhi and colleagues noted that, at all time points examined from 2005 to 2014, women had a higher proportion than men of COPD hospitalizations and in-hospital deaths. They also noted that female sex is associated with a threefold risk for severe early-onset COPD, and that women with COPD have lower diffusion capacity of lungs for carbon monoxide, despite having higher predicted forced expiratory volume in 1 second, compared with men.
“Historically, COPD wasn’t a disease that was so prevalent in women. It’s been in the past 20 years that the trends have changed,” said Patricia Silveyra, MSc, PhD, ATSF, associate professor of environmental and occupational health at Indiana University, Bloomington.
The increasing prevalence of COPD among women cannot be explained by smoking alone, she said in an interview.
“It used to be thought that it was because more women smoked, but actually a lot of women who don’t smoke can develop COPD, so it appears to be probably something environmental, but because it used to be a disease of older men, in the clinic there was also a bias to diagnose men with COPD, and women with asthma, so a lot of women went underdiagnosed,” Dr. Silveyra said.
In their review, Dr. Sodhi and colleagues noted that women with COPD “may be underdiagnosed as a result of having different symptoms from those classically recognized. Reasons for underdiagnosis or a delay in diagnosis may also be due to lack of a formal evaluation with spirometry, women seeking care later in the course of disease, physician bias, or associated fatigue or depression misdirecting diagnostic strategies. Underdiagnosis may be associated with psychological distress and worse health-related quality of life.”
Although the evidence is mixed, women tend to present more frequently with the chronic bronchitis phenotype of COPD, compared with the emphysema phenotype, and women tend to have greater degrees of pulmonary function impairment when exposed to tobacco smoke, even after controlling for differences in height and weight.
“For the same amount of exposure to tobacco smoke, females are likely to develop more severe airflow limitation at an earlier age than males, and have more exacerbation,” Dr. Sodhi and colleagues wrote.
Both Dr. Silveyra and Dr. Sodhi said that reason why men and women differ in their physiological reactions to smoke are still unknown.
Sex differences in drug responses
There is only limited evidence to indicate that women and men respond differently to various therapeutic agents, but what is clear is that more research into this area is needed, Dr. Sodhi and Dr. Silveyra said.
For example, among the few studies that have documented sex differences, one showed no sex differences in the efficacy of salmeterol/fluticasone combination therapy for reducing exacerbations or improving quality of life, whereas another showed that women were more likely than men to experience COPD symptoms or exacerbations after stopping inhaled corticosteroids, Dr. Sodhi and colleagues noted.
Both Dr. Sodhi and Dr. Silveyra emphasized the need for clinical trials that study the effects of sex on treatment outcomes in COPD, which could lead to better, more personalized therapeutic regimens that take sex and gender into account.
Dr. Sodhi and colleagues offered the following advice to clinicians: “Interaction with female patients should take into account that their symptoms may not conform to traditionally accepted presentations. Challenges exist for female patients at all levels of health care interaction and as clinicians we need to acknowledge the bias and willfully work toward recognition and elimination of unconscious and conscious bias. Empowering our patients to have frank discussions with their health care team when they perceive bias is another step to help promote equity.”
The review by Dr. Sodhi and colleagues was supported by grants from the National Institutes of Health. Dr. Sodhi and Dr. Silveyra reported having no conflicts of interest to disclose.
What can be new about developmental milestones?
The American Academy of Pediatrics, with funding from the Centers for Disease Control and Prevention, studied the CDC’s “Learn the Signs. Act Early” developmental surveillance milestones for children 0-5 years to update the milestones based on published studies. The goal was to improve this tool for developmental surveillance and use by the public. Developmental surveillance is not just observing a child at a check-up but rather “is a longitudinal process that involves eliciting concerns, taking a developmental history based on milestone attainment, observing milestones and other behaviors, examining the child, and applying clinical judgment during health supervision visits (HSVs).”1
While the milestones we were trained on were a good start and highlighted the developmental progression central to pediatrics, they were not based on norms or cut scores indicating significant developmental risk unless taught from a validated tool. The CDC was concerned that their public handouts and apps were based on median ages (middle number of the entire range) of attainment not the mode (most common) or even average ages. That means that about half of all typically developing children would “not have attained” that skill at the age noted, potentially evoking unnecessary concern for parents and a “wait-and-see” message from a knowledgeable provider who realized the statistical meaning and the broad range of normal. Another potential problem with using milestones set at the median age is that parents, especially those with several children or experienced friends, may see the provider as an alarmist when they have seen great variation in children who later were normal. This reaction can dampen provider willingness to discuss development or even to screen with validated tools. We have learned the hard way from COVID-19 that it is difficult to convey concepts of risk effectively both balancing fear and stimulating action.
The AAP experts reviewed the English literature for data-based milestones, finding 34 articles, 10 of which had an opinion for at least one milestone. If this sounds like a very small number, you are correct. You may not realize that almost all screening and diagnostic tools have been based on data collected by Gesell in 1928!2 While most of health care has changed since then, which milestones are measured in infants has not.
The biggest change from this review was deciding to use as milestones skills reported for 75% of children at each age of typical HSVs, adding ones for 15 and 30 months. The implication is that children not attaining these milestones are all at risk and deserving of more careful history, examination, and administration of a validated screening tool; not true when based on median data. Of the 94 existing CDC milestones retained after the review, one-third were moved to a different age with 21 of 31 assigned to an older age. Domains of functioning for the milestones were consolidated into social emotional, cognitive, language/communication, and motor, to help parents learn to distinguish these areas, and, although many milestones reflect several domains, each was included only once to reduce confusion.
Psychosocial assessment is recommended by the AAP and Bright Futures at every HSV but the fewest milestones with normative data were identified for this domain, often self-help rather than social engagement or emotion regulation skills. The cross-cultural study cited for many of the new milestones was reassuring overall in that the median ages for 67%-88% of milestones in most domains were equivalent across the four countries sampled, but only 22% of self-help skills were equivalent.3 This should remind us that parenting has more influence over psychosocial skills than other domains. Psychosocial and behavioral functioning, especially emotional regulation, also deserve “surveillance” as they have enormous impact on life outcomes but need to be measured and supported differently. Routine use of validated tools such as the Early Childhood Screening Assessment or the Ages & Stages Questionnaires: Social-Emotional for these domains are also needed.
Normal variations in temperament and patterns of attachment can affect many milestones including courage for walking, exploration, social engagement, and prosocial behaviors or self-control for social situations, attention, range of affect, and cooperation. All of these skills are among the 42 total (14 new) social-emotional milestones for 0- to 5-year-olds. Variations in these functions are at the root of the most common “challenging behaviors” in our studies in primary care. They are also the most vulnerable to suboptimal parent-child relationships, adverse childhood experiences, and social determinants of health.
As primary care providers, we not only need to detect children at risk for developmental problems but also promote and celebrate developmental progress. I hope that changing the threshold for concern to 75% will allow for a more positive review with the family (as fewer will be flagged as at risk) and chance to congratulate parents on all that is going well. But I also hope the change will not make us overlook parenting challenges, often from the psychosocial milestones most amenable to our guidance and support.
Early identification is mainly important to obtain the early intervention shown to improve outcomes. However, less than 25% of children with delays or disabilities receive early intervention before age 3 and most with emotional, behavioral, and developmental conditions, other than autism spectrum disorder, not before age 5. Since early intervention services are freely available in all states, we also need to do better at getting children to this care.
Let’s reconsider the process of developmental surveillance in this light of delayed referral: “Eliciting concerns” is key as parents have been shown to be usually correct in their worries. Listening to how they express the concerns can help you connect their specific issues when discussing reasons for referral. While most parent “recall of past milestones” is not accurate, current milestones reported are; thus, the need to have the new more accurate norms for all ages for comparison. When we make observations of a child’s abilities and behaviors ourselves we may not only pick up on issues missed by the parent, but will be more convincing in conveying the need for referral when indicated. When we “examine” the child we can use our professional skills to determine the very important risk factor of the quality of how a skill is performed, not just that it is. The recommended “use of validated screening tools” when the new milestones are not met give us an objective tool to share with parents, more confidence in when referral is warranted, which we will convey to parents (and perhaps skeptical relatives), and baseline documentation from which we can “track” referrals, progress, and, hopefully, better outcomes.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
1. Zubler JM et al. Pediatrics. 2022;149(3):e2021052138.
2. Gessell A et al. Macmillan: New York, 1928.
3. Ertem IO et al. Lancet Glob Health. 2018 Mar;6(3):e279-91.
The American Academy of Pediatrics, with funding from the Centers for Disease Control and Prevention, studied the CDC’s “Learn the Signs. Act Early” developmental surveillance milestones for children 0-5 years to update the milestones based on published studies. The goal was to improve this tool for developmental surveillance and use by the public. Developmental surveillance is not just observing a child at a check-up but rather “is a longitudinal process that involves eliciting concerns, taking a developmental history based on milestone attainment, observing milestones and other behaviors, examining the child, and applying clinical judgment during health supervision visits (HSVs).”1
While the milestones we were trained on were a good start and highlighted the developmental progression central to pediatrics, they were not based on norms or cut scores indicating significant developmental risk unless taught from a validated tool. The CDC was concerned that their public handouts and apps were based on median ages (middle number of the entire range) of attainment not the mode (most common) or even average ages. That means that about half of all typically developing children would “not have attained” that skill at the age noted, potentially evoking unnecessary concern for parents and a “wait-and-see” message from a knowledgeable provider who realized the statistical meaning and the broad range of normal. Another potential problem with using milestones set at the median age is that parents, especially those with several children or experienced friends, may see the provider as an alarmist when they have seen great variation in children who later were normal. This reaction can dampen provider willingness to discuss development or even to screen with validated tools. We have learned the hard way from COVID-19 that it is difficult to convey concepts of risk effectively both balancing fear and stimulating action.
The AAP experts reviewed the English literature for data-based milestones, finding 34 articles, 10 of which had an opinion for at least one milestone. If this sounds like a very small number, you are correct. You may not realize that almost all screening and diagnostic tools have been based on data collected by Gesell in 1928!2 While most of health care has changed since then, which milestones are measured in infants has not.
The biggest change from this review was deciding to use as milestones skills reported for 75% of children at each age of typical HSVs, adding ones for 15 and 30 months. The implication is that children not attaining these milestones are all at risk and deserving of more careful history, examination, and administration of a validated screening tool; not true when based on median data. Of the 94 existing CDC milestones retained after the review, one-third were moved to a different age with 21 of 31 assigned to an older age. Domains of functioning for the milestones were consolidated into social emotional, cognitive, language/communication, and motor, to help parents learn to distinguish these areas, and, although many milestones reflect several domains, each was included only once to reduce confusion.
Psychosocial assessment is recommended by the AAP and Bright Futures at every HSV but the fewest milestones with normative data were identified for this domain, often self-help rather than social engagement or emotion regulation skills. The cross-cultural study cited for many of the new milestones was reassuring overall in that the median ages for 67%-88% of milestones in most domains were equivalent across the four countries sampled, but only 22% of self-help skills were equivalent.3 This should remind us that parenting has more influence over psychosocial skills than other domains. Psychosocial and behavioral functioning, especially emotional regulation, also deserve “surveillance” as they have enormous impact on life outcomes but need to be measured and supported differently. Routine use of validated tools such as the Early Childhood Screening Assessment or the Ages & Stages Questionnaires: Social-Emotional for these domains are also needed.
Normal variations in temperament and patterns of attachment can affect many milestones including courage for walking, exploration, social engagement, and prosocial behaviors or self-control for social situations, attention, range of affect, and cooperation. All of these skills are among the 42 total (14 new) social-emotional milestones for 0- to 5-year-olds. Variations in these functions are at the root of the most common “challenging behaviors” in our studies in primary care. They are also the most vulnerable to suboptimal parent-child relationships, adverse childhood experiences, and social determinants of health.
As primary care providers, we not only need to detect children at risk for developmental problems but also promote and celebrate developmental progress. I hope that changing the threshold for concern to 75% will allow for a more positive review with the family (as fewer will be flagged as at risk) and chance to congratulate parents on all that is going well. But I also hope the change will not make us overlook parenting challenges, often from the psychosocial milestones most amenable to our guidance and support.
Early identification is mainly important to obtain the early intervention shown to improve outcomes. However, less than 25% of children with delays or disabilities receive early intervention before age 3 and most with emotional, behavioral, and developmental conditions, other than autism spectrum disorder, not before age 5. Since early intervention services are freely available in all states, we also need to do better at getting children to this care.
Let’s reconsider the process of developmental surveillance in this light of delayed referral: “Eliciting concerns” is key as parents have been shown to be usually correct in their worries. Listening to how they express the concerns can help you connect their specific issues when discussing reasons for referral. While most parent “recall of past milestones” is not accurate, current milestones reported are; thus, the need to have the new more accurate norms for all ages for comparison. When we make observations of a child’s abilities and behaviors ourselves we may not only pick up on issues missed by the parent, but will be more convincing in conveying the need for referral when indicated. When we “examine” the child we can use our professional skills to determine the very important risk factor of the quality of how a skill is performed, not just that it is. The recommended “use of validated screening tools” when the new milestones are not met give us an objective tool to share with parents, more confidence in when referral is warranted, which we will convey to parents (and perhaps skeptical relatives), and baseline documentation from which we can “track” referrals, progress, and, hopefully, better outcomes.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
1. Zubler JM et al. Pediatrics. 2022;149(3):e2021052138.
2. Gessell A et al. Macmillan: New York, 1928.
3. Ertem IO et al. Lancet Glob Health. 2018 Mar;6(3):e279-91.
The American Academy of Pediatrics, with funding from the Centers for Disease Control and Prevention, studied the CDC’s “Learn the Signs. Act Early” developmental surveillance milestones for children 0-5 years to update the milestones based on published studies. The goal was to improve this tool for developmental surveillance and use by the public. Developmental surveillance is not just observing a child at a check-up but rather “is a longitudinal process that involves eliciting concerns, taking a developmental history based on milestone attainment, observing milestones and other behaviors, examining the child, and applying clinical judgment during health supervision visits (HSVs).”1
While the milestones we were trained on were a good start and highlighted the developmental progression central to pediatrics, they were not based on norms or cut scores indicating significant developmental risk unless taught from a validated tool. The CDC was concerned that their public handouts and apps were based on median ages (middle number of the entire range) of attainment not the mode (most common) or even average ages. That means that about half of all typically developing children would “not have attained” that skill at the age noted, potentially evoking unnecessary concern for parents and a “wait-and-see” message from a knowledgeable provider who realized the statistical meaning and the broad range of normal. Another potential problem with using milestones set at the median age is that parents, especially those with several children or experienced friends, may see the provider as an alarmist when they have seen great variation in children who later were normal. This reaction can dampen provider willingness to discuss development or even to screen with validated tools. We have learned the hard way from COVID-19 that it is difficult to convey concepts of risk effectively both balancing fear and stimulating action.
The AAP experts reviewed the English literature for data-based milestones, finding 34 articles, 10 of which had an opinion for at least one milestone. If this sounds like a very small number, you are correct. You may not realize that almost all screening and diagnostic tools have been based on data collected by Gesell in 1928!2 While most of health care has changed since then, which milestones are measured in infants has not.
The biggest change from this review was deciding to use as milestones skills reported for 75% of children at each age of typical HSVs, adding ones for 15 and 30 months. The implication is that children not attaining these milestones are all at risk and deserving of more careful history, examination, and administration of a validated screening tool; not true when based on median data. Of the 94 existing CDC milestones retained after the review, one-third were moved to a different age with 21 of 31 assigned to an older age. Domains of functioning for the milestones were consolidated into social emotional, cognitive, language/communication, and motor, to help parents learn to distinguish these areas, and, although many milestones reflect several domains, each was included only once to reduce confusion.
Psychosocial assessment is recommended by the AAP and Bright Futures at every HSV but the fewest milestones with normative data were identified for this domain, often self-help rather than social engagement or emotion regulation skills. The cross-cultural study cited for many of the new milestones was reassuring overall in that the median ages for 67%-88% of milestones in most domains were equivalent across the four countries sampled, but only 22% of self-help skills were equivalent.3 This should remind us that parenting has more influence over psychosocial skills than other domains. Psychosocial and behavioral functioning, especially emotional regulation, also deserve “surveillance” as they have enormous impact on life outcomes but need to be measured and supported differently. Routine use of validated tools such as the Early Childhood Screening Assessment or the Ages & Stages Questionnaires: Social-Emotional for these domains are also needed.
Normal variations in temperament and patterns of attachment can affect many milestones including courage for walking, exploration, social engagement, and prosocial behaviors or self-control for social situations, attention, range of affect, and cooperation. All of these skills are among the 42 total (14 new) social-emotional milestones for 0- to 5-year-olds. Variations in these functions are at the root of the most common “challenging behaviors” in our studies in primary care. They are also the most vulnerable to suboptimal parent-child relationships, adverse childhood experiences, and social determinants of health.
As primary care providers, we not only need to detect children at risk for developmental problems but also promote and celebrate developmental progress. I hope that changing the threshold for concern to 75% will allow for a more positive review with the family (as fewer will be flagged as at risk) and chance to congratulate parents on all that is going well. But I also hope the change will not make us overlook parenting challenges, often from the psychosocial milestones most amenable to our guidance and support.
Early identification is mainly important to obtain the early intervention shown to improve outcomes. However, less than 25% of children with delays or disabilities receive early intervention before age 3 and most with emotional, behavioral, and developmental conditions, other than autism spectrum disorder, not before age 5. Since early intervention services are freely available in all states, we also need to do better at getting children to this care.
Let’s reconsider the process of developmental surveillance in this light of delayed referral: “Eliciting concerns” is key as parents have been shown to be usually correct in their worries. Listening to how they express the concerns can help you connect their specific issues when discussing reasons for referral. While most parent “recall of past milestones” is not accurate, current milestones reported are; thus, the need to have the new more accurate norms for all ages for comparison. When we make observations of a child’s abilities and behaviors ourselves we may not only pick up on issues missed by the parent, but will be more convincing in conveying the need for referral when indicated. When we “examine” the child we can use our professional skills to determine the very important risk factor of the quality of how a skill is performed, not just that it is. The recommended “use of validated screening tools” when the new milestones are not met give us an objective tool to share with parents, more confidence in when referral is warranted, which we will convey to parents (and perhaps skeptical relatives), and baseline documentation from which we can “track” referrals, progress, and, hopefully, better outcomes.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.
References
1. Zubler JM et al. Pediatrics. 2022;149(3):e2021052138.
2. Gessell A et al. Macmillan: New York, 1928.
3. Ertem IO et al. Lancet Glob Health. 2018 Mar;6(3):e279-91.
Central Centrifugal Cicatricial Alopecia
THE PRESENTATION
A Early central centrifugal cicatricial alopecia with a small central patch of hair loss in a 45-year-old Black woman.
B Late central centrifugal cicatricial alopecia with a large central patch of hair loss in a 43-year-old Black woman.
Scarring alopecia is a collection of hair loss disorders including chronic cutaneous lupus erythematosus (discoid lupus), lichen planopilaris, dissecting cellulitis, acne keloidalis, and central centrifugal cicatricial alopecia (CCCA).1 Central centrifugal cicatricial alopecia (formerly hot comb alopecia or follicular degeneration syndrome) is a progressive, scarring, inflammatory alopecia and represents the most common form of scarring alopecia in women of African descent. It results in permanent destruction of hair follicles.
Epidemiology
Central centrifugal cicatricial alopecia predominantly affects women of African descent but also may affect men. The prevalence of CCCA in those of African descent has varied in the literature. Khumalo2 reported a prevalence of 1.2% for women younger than 50 years and 6.7% in women older than 50 years. Central centrifugal cicatricial alopecia has been reported in other ethnic groups, such as those of Asian descent.3
Historically, hair care practices that are more common in those of African descent, such as high-tension hairstyles as well as heat and chemical hair relaxers, were implicated in the development of CCCA. However, the causes of CCCA are most likely multifactorial, including family history, genetic mutations, and hair care practices.4-7 PADI3 mutations likely predispose some women to CCCA. Mutations in PADI3, which encodes peptidyl arginine deiminase 3 (an enzyme that modifies proteins crucial for the formation of hair shafts), were found in some patients with CCCA.8 Moreover, other genetic defects also likely play a role.7
Key clinical features
Early recognition is key for patients with CCCA.
• Central centrifugal cicatricial alopecia begins in the central scalp (crown area, vertex) and spreads centrifugally.
• Scalp symptoms such as tenderness, pain, a tingling or crawling sensation, and itching may occur.9 Some patients may not have any symptoms at all, and hair loss may progress painlessly.
• Central hair breakage—forme fruste CCCA—may be a presenting sign of CCCA.9
• Loss of follicular ostia and mottled hypopigmented and hyperpigmented macules are common findings.6
• Central centrifugal cicatricial alopecia can be diagnosed clinically and by histopathology.
Worth noting
Patients may experience hair loss and scalp symptoms for years before seeking medical evaluation. In some cultures, hair breakage or itching on the top of the scalp may be viewed as a normal occurrence in life.
It is important to set patient expectations that CCCA is a scarring alopecia, and the initial goal often is to maintain the patient's existing hair. However, hair and areas responding to treatment should still be treated. Without any intervention, the resulting scarring from CCCA may permanently scar follicles on the entire scalp.
Due to the inflammatory nature of CCCA, potent topical corticosteroids (eg, clobetasol propionate), intralesional corticosteroids (eg, triamcinolone acetonide), and oral anti-inflammatory agents (eg, doxycycline) are utilized in the treatment of CCCA. Minoxidil is another treatment option. Adjuvant therapies such as topical metformin also have been tried.10 Importantly, treatment of CCCA may halt further permanent destruction of hair follicles, but scalp symptoms may reappear periodically and require re-treatment with anti-inflammatory agents.
Health care highlight
Thorough scalp examination and awareness of clinical features of CCCA may prompt earlier diagnosis and prevent future severe permanent alopecia. Clinicians should encourage patients with suggestive signs or symptoms of CCCA to seek care from a dermatologist.
- Sperling LC. Scarring alopecia and the dermatopathologist. J Cutan Pathol. 2001;28:333-342. doi:10.1034/j.1600-0560.2001 .280701.x
- Khumalo NP. Prevalence of central centrifugal cicatricial alopecia. Arch Dermatol. 2011;147:1453-1454. doi:10.1001/archderm.147.12.1453
- Su HJ, Cheng AY, Liu CH, et al. Primary scarring alopecia: a retrospective study of 89 patients in Taiwan [published online January 16, 2018]. J Dermatol. 2018;45:450-455. doi:10.1111 /1346-8138.14217
- Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006;25:41-50
- Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012;51(supp 1):17-20, 20-23.
- Ogunleye TA, Quinn CR, McMichael A. Alopecia. In: Taylor SC, Kelly AP, Lim HW, et al, eds. Dermatology for Skin of Color. McGraw Hill; 2016:253-264.
- Uitto J. Genetic susceptibility to alopecia [published online February 13, 2019]. N Engl J Med. 2019;380:873-876. doi:10.1056 /NEJMe1900042
- Malki L, Sarig O, Romano MT, et al. Variant PADI3 in central centrifugal cicatricial alopecia. N Engl J Med. 2019;380:833-841.
- Callender VD, Wright DR, Davis EC, et al. Hair breakage as a presenting sign of early or occult central centrifugal cicatricial alopecia: clinicopathologic findings in 9 patients. Arch Dermatol. 2012;148:1047-1052.
- Araoye EF, Thomas JAL, Aguh CU. Hair regrowth in 2 patients with recalcitrant central centrifugal cicatricial alopecia after use of topical metformin. JAAD Case Rep. 2020;6:106-108. doi:10.1016/j .jdcr.2019.12.008
THE PRESENTATION
A Early central centrifugal cicatricial alopecia with a small central patch of hair loss in a 45-year-old Black woman.
B Late central centrifugal cicatricial alopecia with a large central patch of hair loss in a 43-year-old Black woman.
Scarring alopecia is a collection of hair loss disorders including chronic cutaneous lupus erythematosus (discoid lupus), lichen planopilaris, dissecting cellulitis, acne keloidalis, and central centrifugal cicatricial alopecia (CCCA).1 Central centrifugal cicatricial alopecia (formerly hot comb alopecia or follicular degeneration syndrome) is a progressive, scarring, inflammatory alopecia and represents the most common form of scarring alopecia in women of African descent. It results in permanent destruction of hair follicles.
Epidemiology
Central centrifugal cicatricial alopecia predominantly affects women of African descent but also may affect men. The prevalence of CCCA in those of African descent has varied in the literature. Khumalo2 reported a prevalence of 1.2% for women younger than 50 years and 6.7% in women older than 50 years. Central centrifugal cicatricial alopecia has been reported in other ethnic groups, such as those of Asian descent.3
Historically, hair care practices that are more common in those of African descent, such as high-tension hairstyles as well as heat and chemical hair relaxers, were implicated in the development of CCCA. However, the causes of CCCA are most likely multifactorial, including family history, genetic mutations, and hair care practices.4-7 PADI3 mutations likely predispose some women to CCCA. Mutations in PADI3, which encodes peptidyl arginine deiminase 3 (an enzyme that modifies proteins crucial for the formation of hair shafts), were found in some patients with CCCA.8 Moreover, other genetic defects also likely play a role.7
Key clinical features
Early recognition is key for patients with CCCA.
• Central centrifugal cicatricial alopecia begins in the central scalp (crown area, vertex) and spreads centrifugally.
• Scalp symptoms such as tenderness, pain, a tingling or crawling sensation, and itching may occur.9 Some patients may not have any symptoms at all, and hair loss may progress painlessly.
• Central hair breakage—forme fruste CCCA—may be a presenting sign of CCCA.9
• Loss of follicular ostia and mottled hypopigmented and hyperpigmented macules are common findings.6
• Central centrifugal cicatricial alopecia can be diagnosed clinically and by histopathology.
Worth noting
Patients may experience hair loss and scalp symptoms for years before seeking medical evaluation. In some cultures, hair breakage or itching on the top of the scalp may be viewed as a normal occurrence in life.
It is important to set patient expectations that CCCA is a scarring alopecia, and the initial goal often is to maintain the patient's existing hair. However, hair and areas responding to treatment should still be treated. Without any intervention, the resulting scarring from CCCA may permanently scar follicles on the entire scalp.
Due to the inflammatory nature of CCCA, potent topical corticosteroids (eg, clobetasol propionate), intralesional corticosteroids (eg, triamcinolone acetonide), and oral anti-inflammatory agents (eg, doxycycline) are utilized in the treatment of CCCA. Minoxidil is another treatment option. Adjuvant therapies such as topical metformin also have been tried.10 Importantly, treatment of CCCA may halt further permanent destruction of hair follicles, but scalp symptoms may reappear periodically and require re-treatment with anti-inflammatory agents.
Health care highlight
Thorough scalp examination and awareness of clinical features of CCCA may prompt earlier diagnosis and prevent future severe permanent alopecia. Clinicians should encourage patients with suggestive signs or symptoms of CCCA to seek care from a dermatologist.
THE PRESENTATION
A Early central centrifugal cicatricial alopecia with a small central patch of hair loss in a 45-year-old Black woman.
B Late central centrifugal cicatricial alopecia with a large central patch of hair loss in a 43-year-old Black woman.
Scarring alopecia is a collection of hair loss disorders including chronic cutaneous lupus erythematosus (discoid lupus), lichen planopilaris, dissecting cellulitis, acne keloidalis, and central centrifugal cicatricial alopecia (CCCA).1 Central centrifugal cicatricial alopecia (formerly hot comb alopecia or follicular degeneration syndrome) is a progressive, scarring, inflammatory alopecia and represents the most common form of scarring alopecia in women of African descent. It results in permanent destruction of hair follicles.
Epidemiology
Central centrifugal cicatricial alopecia predominantly affects women of African descent but also may affect men. The prevalence of CCCA in those of African descent has varied in the literature. Khumalo2 reported a prevalence of 1.2% for women younger than 50 years and 6.7% in women older than 50 years. Central centrifugal cicatricial alopecia has been reported in other ethnic groups, such as those of Asian descent.3
Historically, hair care practices that are more common in those of African descent, such as high-tension hairstyles as well as heat and chemical hair relaxers, were implicated in the development of CCCA. However, the causes of CCCA are most likely multifactorial, including family history, genetic mutations, and hair care practices.4-7 PADI3 mutations likely predispose some women to CCCA. Mutations in PADI3, which encodes peptidyl arginine deiminase 3 (an enzyme that modifies proteins crucial for the formation of hair shafts), were found in some patients with CCCA.8 Moreover, other genetic defects also likely play a role.7
Key clinical features
Early recognition is key for patients with CCCA.
• Central centrifugal cicatricial alopecia begins in the central scalp (crown area, vertex) and spreads centrifugally.
• Scalp symptoms such as tenderness, pain, a tingling or crawling sensation, and itching may occur.9 Some patients may not have any symptoms at all, and hair loss may progress painlessly.
• Central hair breakage—forme fruste CCCA—may be a presenting sign of CCCA.9
• Loss of follicular ostia and mottled hypopigmented and hyperpigmented macules are common findings.6
• Central centrifugal cicatricial alopecia can be diagnosed clinically and by histopathology.
Worth noting
Patients may experience hair loss and scalp symptoms for years before seeking medical evaluation. In some cultures, hair breakage or itching on the top of the scalp may be viewed as a normal occurrence in life.
It is important to set patient expectations that CCCA is a scarring alopecia, and the initial goal often is to maintain the patient's existing hair. However, hair and areas responding to treatment should still be treated. Without any intervention, the resulting scarring from CCCA may permanently scar follicles on the entire scalp.
Due to the inflammatory nature of CCCA, potent topical corticosteroids (eg, clobetasol propionate), intralesional corticosteroids (eg, triamcinolone acetonide), and oral anti-inflammatory agents (eg, doxycycline) are utilized in the treatment of CCCA. Minoxidil is another treatment option. Adjuvant therapies such as topical metformin also have been tried.10 Importantly, treatment of CCCA may halt further permanent destruction of hair follicles, but scalp symptoms may reappear periodically and require re-treatment with anti-inflammatory agents.
Health care highlight
Thorough scalp examination and awareness of clinical features of CCCA may prompt earlier diagnosis and prevent future severe permanent alopecia. Clinicians should encourage patients with suggestive signs or symptoms of CCCA to seek care from a dermatologist.
- Sperling LC. Scarring alopecia and the dermatopathologist. J Cutan Pathol. 2001;28:333-342. doi:10.1034/j.1600-0560.2001 .280701.x
- Khumalo NP. Prevalence of central centrifugal cicatricial alopecia. Arch Dermatol. 2011;147:1453-1454. doi:10.1001/archderm.147.12.1453
- Su HJ, Cheng AY, Liu CH, et al. Primary scarring alopecia: a retrospective study of 89 patients in Taiwan [published online January 16, 2018]. J Dermatol. 2018;45:450-455. doi:10.1111 /1346-8138.14217
- Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006;25:41-50
- Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012;51(supp 1):17-20, 20-23.
- Ogunleye TA, Quinn CR, McMichael A. Alopecia. In: Taylor SC, Kelly AP, Lim HW, et al, eds. Dermatology for Skin of Color. McGraw Hill; 2016:253-264.
- Uitto J. Genetic susceptibility to alopecia [published online February 13, 2019]. N Engl J Med. 2019;380:873-876. doi:10.1056 /NEJMe1900042
- Malki L, Sarig O, Romano MT, et al. Variant PADI3 in central centrifugal cicatricial alopecia. N Engl J Med. 2019;380:833-841.
- Callender VD, Wright DR, Davis EC, et al. Hair breakage as a presenting sign of early or occult central centrifugal cicatricial alopecia: clinicopathologic findings in 9 patients. Arch Dermatol. 2012;148:1047-1052.
- Araoye EF, Thomas JAL, Aguh CU. Hair regrowth in 2 patients with recalcitrant central centrifugal cicatricial alopecia after use of topical metformin. JAAD Case Rep. 2020;6:106-108. doi:10.1016/j .jdcr.2019.12.008
- Sperling LC. Scarring alopecia and the dermatopathologist. J Cutan Pathol. 2001;28:333-342. doi:10.1034/j.1600-0560.2001 .280701.x
- Khumalo NP. Prevalence of central centrifugal cicatricial alopecia. Arch Dermatol. 2011;147:1453-1454. doi:10.1001/archderm.147.12.1453
- Su HJ, Cheng AY, Liu CH, et al. Primary scarring alopecia: a retrospective study of 89 patients in Taiwan [published online January 16, 2018]. J Dermatol. 2018;45:450-455. doi:10.1111 /1346-8138.14217
- Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006;25:41-50
- Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012;51(supp 1):17-20, 20-23.
- Ogunleye TA, Quinn CR, McMichael A. Alopecia. In: Taylor SC, Kelly AP, Lim HW, et al, eds. Dermatology for Skin of Color. McGraw Hill; 2016:253-264.
- Uitto J. Genetic susceptibility to alopecia [published online February 13, 2019]. N Engl J Med. 2019;380:873-876. doi:10.1056 /NEJMe1900042
- Malki L, Sarig O, Romano MT, et al. Variant PADI3 in central centrifugal cicatricial alopecia. N Engl J Med. 2019;380:833-841.
- Callender VD, Wright DR, Davis EC, et al. Hair breakage as a presenting sign of early or occult central centrifugal cicatricial alopecia: clinicopathologic findings in 9 patients. Arch Dermatol. 2012;148:1047-1052.
- Araoye EF, Thomas JAL, Aguh CU. Hair regrowth in 2 patients with recalcitrant central centrifugal cicatricial alopecia after use of topical metformin. JAAD Case Rep. 2020;6:106-108. doi:10.1016/j .jdcr.2019.12.008
Study finds discrepancies in biopsy decisions, diagnoses based on skin type
BOSTON – compared with White patients, new research shows.
“Our findings suggest diagnostic biases based on skin color exist in dermatology practice,” lead author Loren Krueger, MD, assistant professor in the department of dermatology, Emory University School of Medicine, Atlanta, said at the Annual Skin of Color Society Scientific Symposium. “A lower likelihood of biopsy of malignancy in darker skin types could contribute to disparities in cutaneous malignancies,” she added.
Disparities in dermatologic care among Black patients, compared with White patients, have been well documented. Recent evidence includes a 2020 study that showed significant shortcomings among medical students in correctly diagnosing squamous cell carcinoma, urticaria, and atopic dermatitis for patients with skin of color.
“It’s no secret that our images do not accurately or in the right quantity include skin of color,” Dr. Krueger said. “Yet few papers talk about how these biases actually impact our care. Importantly, this study demonstrates that diagnostic bias develops as early as the medical student level.”
To further investigate the role of skin color in the assessment of neoplastic and inflammatory skin conditions and decisions to perform biopsy, Dr. Krueger and her colleagues surveyed 144 dermatology residents and attending dermatologists to evaluate their clinical decisionmaking skills in assessing skin conditions for patients with lighter skin and those with darker skin. Almost 80% (113) provided complete responses and were included in the study.
For the survey, participants were shown photos of 10 neoplastic and 10 inflammatory skin conditions. Each image was matched in lighter (skin types I-II) and darker (skin types IV-VI) skinned patients in random order. Participants were asked to identify the suspected underlying etiology (neoplastic–benign, neoplastic–malignant, papulosquamous, lichenoid, infectious, bullous, or no suspected etiology) and whether they would choose to perform biopsy for the pictured condition.
Overall, their responses showed a slightly higher probability of recommending a biopsy for patients with skin types IV-V (odds ratio, 1.18; P = .054).
However, respondents were more than twice as likely to recommend a biopsy for benign neoplasms for patients with skin of color, compared with those with lighter skin types (OR, 2.57; P < .0001). They were significantly less likely to recommend a biopsy for a malignant neoplasm for patients with skin of color (OR, 0.42; P < .0001).
In addition, the correct etiology was much more commonly missed in diagnosing patients with skin of color, even after adjusting for years in dermatology practice (OR, 0.569; P < .0001).
Conversely, respondents were significantly less likely to recommend a biopsy for benign neoplasms and were more likely to recommend a biopsy for malignant neoplasms among White patients. Etiology was more commonly correct.
The findings underscore that “for skin of color patients, you’re more likely to have a benign neoplasm biopsied, you’re less likely to have a malignant neoplasm biopsied, and more often, your etiology may be missed,” Dr. Krueger said at the meeting.
Of note, while 45% of respondents were dermatology residents or fellows, 20.4% had 1-5 years of experience, and about 28% had 10 to more than 25 years of experience.
And while 75% of the dermatology residents, fellows, and attendings were White, there was no difference in the probability of correctly identifying the underlying etiology in dark or light skin types based on the provider’s self-identified race.
Importantly, the patterns in the study of diagnostic discrepancies are reflected in broader dermatologic outcomes. The 5-year melanoma survival rate is 74.1% among Black patients and 92.9% among White patients. Dr. Krueger referred to data showing that only 52.6% of Black patients have stage I melanoma at diagnosis, whereas among White patients, the rate is much higher, at 75.9%.
“We know skin malignancy can be more aggressive and late-stage in skin of color populations, leading to increased morbidity and later stage at initial diagnosis,” Dr. Krueger told this news organization. “We routinely attribute this to limited access to care and lack of awareness on skin malignancy. However, we have no evidence on how we, as dermatologists, may be playing a role.”
Furthermore, the decision to perform biopsy or not can affect the size and stage at diagnosis of a cutaneous malignancy, she noted.
Key changes needed to prevent the disparities – and their implications – should start at the training level, she emphasized. “I would love to see increased photo representation in training materials – this is a great place to start,” Dr. Krueger said.
In addition, “encouraging medical students, residents, and dermatologists to learn from skin of color experts is vital,” she said. “We should also provide hands-on experience and training with diverse patient populations.”
The first step to addressing biases “is to acknowledge they exist,” Dr. Krueger added. “I am hopeful this inspires others to continue to investigate these biases, as well as how we can eliminate them.”
The study was funded by the Rudin Resident Research Award. The authors have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
BOSTON – compared with White patients, new research shows.
“Our findings suggest diagnostic biases based on skin color exist in dermatology practice,” lead author Loren Krueger, MD, assistant professor in the department of dermatology, Emory University School of Medicine, Atlanta, said at the Annual Skin of Color Society Scientific Symposium. “A lower likelihood of biopsy of malignancy in darker skin types could contribute to disparities in cutaneous malignancies,” she added.
Disparities in dermatologic care among Black patients, compared with White patients, have been well documented. Recent evidence includes a 2020 study that showed significant shortcomings among medical students in correctly diagnosing squamous cell carcinoma, urticaria, and atopic dermatitis for patients with skin of color.
“It’s no secret that our images do not accurately or in the right quantity include skin of color,” Dr. Krueger said. “Yet few papers talk about how these biases actually impact our care. Importantly, this study demonstrates that diagnostic bias develops as early as the medical student level.”
To further investigate the role of skin color in the assessment of neoplastic and inflammatory skin conditions and decisions to perform biopsy, Dr. Krueger and her colleagues surveyed 144 dermatology residents and attending dermatologists to evaluate their clinical decisionmaking skills in assessing skin conditions for patients with lighter skin and those with darker skin. Almost 80% (113) provided complete responses and were included in the study.
For the survey, participants were shown photos of 10 neoplastic and 10 inflammatory skin conditions. Each image was matched in lighter (skin types I-II) and darker (skin types IV-VI) skinned patients in random order. Participants were asked to identify the suspected underlying etiology (neoplastic–benign, neoplastic–malignant, papulosquamous, lichenoid, infectious, bullous, or no suspected etiology) and whether they would choose to perform biopsy for the pictured condition.
Overall, their responses showed a slightly higher probability of recommending a biopsy for patients with skin types IV-V (odds ratio, 1.18; P = .054).
However, respondents were more than twice as likely to recommend a biopsy for benign neoplasms for patients with skin of color, compared with those with lighter skin types (OR, 2.57; P < .0001). They were significantly less likely to recommend a biopsy for a malignant neoplasm for patients with skin of color (OR, 0.42; P < .0001).
In addition, the correct etiology was much more commonly missed in diagnosing patients with skin of color, even after adjusting for years in dermatology practice (OR, 0.569; P < .0001).
Conversely, respondents were significantly less likely to recommend a biopsy for benign neoplasms and were more likely to recommend a biopsy for malignant neoplasms among White patients. Etiology was more commonly correct.
The findings underscore that “for skin of color patients, you’re more likely to have a benign neoplasm biopsied, you’re less likely to have a malignant neoplasm biopsied, and more often, your etiology may be missed,” Dr. Krueger said at the meeting.
Of note, while 45% of respondents were dermatology residents or fellows, 20.4% had 1-5 years of experience, and about 28% had 10 to more than 25 years of experience.
And while 75% of the dermatology residents, fellows, and attendings were White, there was no difference in the probability of correctly identifying the underlying etiology in dark or light skin types based on the provider’s self-identified race.
Importantly, the patterns in the study of diagnostic discrepancies are reflected in broader dermatologic outcomes. The 5-year melanoma survival rate is 74.1% among Black patients and 92.9% among White patients. Dr. Krueger referred to data showing that only 52.6% of Black patients have stage I melanoma at diagnosis, whereas among White patients, the rate is much higher, at 75.9%.
“We know skin malignancy can be more aggressive and late-stage in skin of color populations, leading to increased morbidity and later stage at initial diagnosis,” Dr. Krueger told this news organization. “We routinely attribute this to limited access to care and lack of awareness on skin malignancy. However, we have no evidence on how we, as dermatologists, may be playing a role.”
Furthermore, the decision to perform biopsy or not can affect the size and stage at diagnosis of a cutaneous malignancy, she noted.
Key changes needed to prevent the disparities – and their implications – should start at the training level, she emphasized. “I would love to see increased photo representation in training materials – this is a great place to start,” Dr. Krueger said.
In addition, “encouraging medical students, residents, and dermatologists to learn from skin of color experts is vital,” she said. “We should also provide hands-on experience and training with diverse patient populations.”
The first step to addressing biases “is to acknowledge they exist,” Dr. Krueger added. “I am hopeful this inspires others to continue to investigate these biases, as well as how we can eliminate them.”
The study was funded by the Rudin Resident Research Award. The authors have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
BOSTON – compared with White patients, new research shows.
“Our findings suggest diagnostic biases based on skin color exist in dermatology practice,” lead author Loren Krueger, MD, assistant professor in the department of dermatology, Emory University School of Medicine, Atlanta, said at the Annual Skin of Color Society Scientific Symposium. “A lower likelihood of biopsy of malignancy in darker skin types could contribute to disparities in cutaneous malignancies,” she added.
Disparities in dermatologic care among Black patients, compared with White patients, have been well documented. Recent evidence includes a 2020 study that showed significant shortcomings among medical students in correctly diagnosing squamous cell carcinoma, urticaria, and atopic dermatitis for patients with skin of color.
“It’s no secret that our images do not accurately or in the right quantity include skin of color,” Dr. Krueger said. “Yet few papers talk about how these biases actually impact our care. Importantly, this study demonstrates that diagnostic bias develops as early as the medical student level.”
To further investigate the role of skin color in the assessment of neoplastic and inflammatory skin conditions and decisions to perform biopsy, Dr. Krueger and her colleagues surveyed 144 dermatology residents and attending dermatologists to evaluate their clinical decisionmaking skills in assessing skin conditions for patients with lighter skin and those with darker skin. Almost 80% (113) provided complete responses and were included in the study.
For the survey, participants were shown photos of 10 neoplastic and 10 inflammatory skin conditions. Each image was matched in lighter (skin types I-II) and darker (skin types IV-VI) skinned patients in random order. Participants were asked to identify the suspected underlying etiology (neoplastic–benign, neoplastic–malignant, papulosquamous, lichenoid, infectious, bullous, or no suspected etiology) and whether they would choose to perform biopsy for the pictured condition.
Overall, their responses showed a slightly higher probability of recommending a biopsy for patients with skin types IV-V (odds ratio, 1.18; P = .054).
However, respondents were more than twice as likely to recommend a biopsy for benign neoplasms for patients with skin of color, compared with those with lighter skin types (OR, 2.57; P < .0001). They were significantly less likely to recommend a biopsy for a malignant neoplasm for patients with skin of color (OR, 0.42; P < .0001).
In addition, the correct etiology was much more commonly missed in diagnosing patients with skin of color, even after adjusting for years in dermatology practice (OR, 0.569; P < .0001).
Conversely, respondents were significantly less likely to recommend a biopsy for benign neoplasms and were more likely to recommend a biopsy for malignant neoplasms among White patients. Etiology was more commonly correct.
The findings underscore that “for skin of color patients, you’re more likely to have a benign neoplasm biopsied, you’re less likely to have a malignant neoplasm biopsied, and more often, your etiology may be missed,” Dr. Krueger said at the meeting.
Of note, while 45% of respondents were dermatology residents or fellows, 20.4% had 1-5 years of experience, and about 28% had 10 to more than 25 years of experience.
And while 75% of the dermatology residents, fellows, and attendings were White, there was no difference in the probability of correctly identifying the underlying etiology in dark or light skin types based on the provider’s self-identified race.
Importantly, the patterns in the study of diagnostic discrepancies are reflected in broader dermatologic outcomes. The 5-year melanoma survival rate is 74.1% among Black patients and 92.9% among White patients. Dr. Krueger referred to data showing that only 52.6% of Black patients have stage I melanoma at diagnosis, whereas among White patients, the rate is much higher, at 75.9%.
“We know skin malignancy can be more aggressive and late-stage in skin of color populations, leading to increased morbidity and later stage at initial diagnosis,” Dr. Krueger told this news organization. “We routinely attribute this to limited access to care and lack of awareness on skin malignancy. However, we have no evidence on how we, as dermatologists, may be playing a role.”
Furthermore, the decision to perform biopsy or not can affect the size and stage at diagnosis of a cutaneous malignancy, she noted.
Key changes needed to prevent the disparities – and their implications – should start at the training level, she emphasized. “I would love to see increased photo representation in training materials – this is a great place to start,” Dr. Krueger said.
In addition, “encouraging medical students, residents, and dermatologists to learn from skin of color experts is vital,” she said. “We should also provide hands-on experience and training with diverse patient populations.”
The first step to addressing biases “is to acknowledge they exist,” Dr. Krueger added. “I am hopeful this inspires others to continue to investigate these biases, as well as how we can eliminate them.”
The study was funded by the Rudin Resident Research Award. The authors have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Transgender youth: Bringing evidence to the political debates
In 2021, state lawmakers introduced a record number of bills that would affect transgender and gender-diverse people. The vast majority were focused on transgender and gender-diverse youth in particular. We’ve seen bills that would take away gender-affirming medical care for minors, ones that would force trans kids to play on sports teams that don’t match their gender identity, and others that would ban trans kids from public facilities like bathrooms that match their gender identities.
These bills aren’t particularly new, but state lawmakers are putting more energy into them than ever. In response, some public figures have started pushing back. Ariana Grande just pledged to match up to 1.5 million dollars in donations to combat anti–trans youth legislative initiatives. However, doctors have been underrepresented in the political discourse.
Sadly, much of the discussion in this area has been driven by wild speculation and emotional rhetoric. It’s rare that we see actual data brought to the table. As clinicians and scientists, we have a responsibility to highlight the data relevant to these legislative debates, and to share them with our representatives. I’m going to break down what we know quantitatively about each of these issues, so that you’ll feel empowered to bring that information to these debates. My hope is that we can move toward evidence-based public policy instead of rhetoric-based public policy, so that we can ensure the best health possible for young people around the country.
Bathroom bills
Though they’ve been less of a focus recently, politicians for years have argued that trans people should be forced to use bathrooms and other public facilities that match their sex assigned at birth, not their gender identity. Their central argument is that trans-inclusive public facility policies will result in higher rates of assault. Published peer-review data show this isn’t true. A 2019 study in Sexuality Research and Social Policy examined the impacts of trans-inclusive public facility policies and found they resulted in no increase in assaults among the general (mostly cisgender) population. Another 2019 study in Pediatrics found that trans-inclusive facility policies were associated with lower odds of sexual assault victimization against transgender youth. The myth that trans-inclusive public facilities increase assault risk is simply that: a myth. All existing data indicate that trans-inclusive policies will improve public safety.
Sports bills
One of the hottest debates recently involves whether transgender girls should be allowed to participate in girls’ sports teams. Those in favor of these bills argue that transgender girls have an innate biological sports advantage over cisgender girls, and if allowed to compete in girls’ sports leagues, they will dominate the events, and cisgender girls will no longer win sports titles. The bills feed into longstanding assumptions – those who were assigned male at birth are strong, and those who were assigned female at birth are weak.
But evidence doesn’t show that trans women dominate female sports leagues. It turns out, there are shockingly few transgender athletes competing in sports leagues around the United States, and even fewer winning major titles. When the Associated Press conducted an investigation asking lawmakers introducing such sports bills to name trans athletes in their states, most couldn’t point to a single one. After Utah state legislators passed a trans sports ban, Governor Spencer Cox vetoed it, pointing out that, of 75,000 high school kids participating in sports in Utah, there was only a single transgender girl (the state legislature overrode the veto anyway).
California has explicitly protected the rights of trans athletes to compete on sports teams that match their gender identity since 2013. There’s still an underrepresentation of trans athletes in sports participation and titles. This is likely because the deck is stacked against these young people in so many other ways that are unrelated to testosterone levels. Trans youth suffer from high rates of harassment, discrimination, and subsequent anxiety and depression that make it difficult to compete in and excel in sports.
Medical bills
State legislators have introduced bills around the country that would criminalize the provision of gender-affirming medical care for transgender youth. Though such bills are opposed by all major medical organizations (including the American Medical Association, the American Academy of Pediatrics, the American Academy of Child & Adolescent Psychiatry, and the American Psychiatric Association), misinformation continues to spread, and in some instances the bills have become law (though none are currently active due to legal challenges).
Clinicians should be aware that there have been sixteen studies to date, each with unique study designs, that have overall linked gender-affirming medical care for transgender youth to better mental health outcomes. While these interventions do (as with all medications) carry some risks (like delayed bone mineralization with pubertal suppression), the risks must be weighed against potential benefits. Unfortunately, these risks and benefits have not been accurately portrayed in state legislative debates. Politicians have spread a great deal of misinformation about gender-affirming medical care for transgender youth, including false assertions that puberty blockers cause infertility and that most transgender adolescents will grow up to identify as cisgender and regret gender-affirming medical interventions.
Minority stress
These bills have direct consequences for pediatric patients. For example, trans-inclusive bathroom policies are associated with lower rates of sexual assault. However, there are also important indirect effects to consider. The gender minority stress framework explains the ways in which stigmatizing national discourse drives higher rates of anxiety, depression, and suicidality among transgender youth. Under this model, so-called “distal factors” like the recent conversations at the national level that marginalize trans young people, are expected to drive higher rates of adverse mental health outcomes. As transgender youth hear high-profile politicians argue that they’re dangerous to their peers in bathrooms and on sports teams, it’s difficult to imagine their mental health would not worsen. Over time, such “distal factors” also lead to “proximal factors” like internalized transphobia in which youth begin to believe the negative things that are said about them. These dangerous processes can have dramatic negative impacts on self-esteem and emotional development. There is strong precedence that public policies have strong indirect mental health effects on LGBTQ youth.
We’ve entered a dangerous era in which politicians are legislating medical care and other aspects of public policy with the potential to hurt the mental health of our young patients. It’s imperative that clinicians and scientists contact their legislators to make sure they are voting for public policy based on data and fact, not misinformation and political rhetoric. The health of American children depends on it.
Dr. Turban (twitter.com/jack_turban) is a chief fellow in child and adolescent psychiatry at Stanford (Calif.) University.
In 2021, state lawmakers introduced a record number of bills that would affect transgender and gender-diverse people. The vast majority were focused on transgender and gender-diverse youth in particular. We’ve seen bills that would take away gender-affirming medical care for minors, ones that would force trans kids to play on sports teams that don’t match their gender identity, and others that would ban trans kids from public facilities like bathrooms that match their gender identities.
These bills aren’t particularly new, but state lawmakers are putting more energy into them than ever. In response, some public figures have started pushing back. Ariana Grande just pledged to match up to 1.5 million dollars in donations to combat anti–trans youth legislative initiatives. However, doctors have been underrepresented in the political discourse.
Sadly, much of the discussion in this area has been driven by wild speculation and emotional rhetoric. It’s rare that we see actual data brought to the table. As clinicians and scientists, we have a responsibility to highlight the data relevant to these legislative debates, and to share them with our representatives. I’m going to break down what we know quantitatively about each of these issues, so that you’ll feel empowered to bring that information to these debates. My hope is that we can move toward evidence-based public policy instead of rhetoric-based public policy, so that we can ensure the best health possible for young people around the country.
Bathroom bills
Though they’ve been less of a focus recently, politicians for years have argued that trans people should be forced to use bathrooms and other public facilities that match their sex assigned at birth, not their gender identity. Their central argument is that trans-inclusive public facility policies will result in higher rates of assault. Published peer-review data show this isn’t true. A 2019 study in Sexuality Research and Social Policy examined the impacts of trans-inclusive public facility policies and found they resulted in no increase in assaults among the general (mostly cisgender) population. Another 2019 study in Pediatrics found that trans-inclusive facility policies were associated with lower odds of sexual assault victimization against transgender youth. The myth that trans-inclusive public facilities increase assault risk is simply that: a myth. All existing data indicate that trans-inclusive policies will improve public safety.
Sports bills
One of the hottest debates recently involves whether transgender girls should be allowed to participate in girls’ sports teams. Those in favor of these bills argue that transgender girls have an innate biological sports advantage over cisgender girls, and if allowed to compete in girls’ sports leagues, they will dominate the events, and cisgender girls will no longer win sports titles. The bills feed into longstanding assumptions – those who were assigned male at birth are strong, and those who were assigned female at birth are weak.
But evidence doesn’t show that trans women dominate female sports leagues. It turns out, there are shockingly few transgender athletes competing in sports leagues around the United States, and even fewer winning major titles. When the Associated Press conducted an investigation asking lawmakers introducing such sports bills to name trans athletes in their states, most couldn’t point to a single one. After Utah state legislators passed a trans sports ban, Governor Spencer Cox vetoed it, pointing out that, of 75,000 high school kids participating in sports in Utah, there was only a single transgender girl (the state legislature overrode the veto anyway).
California has explicitly protected the rights of trans athletes to compete on sports teams that match their gender identity since 2013. There’s still an underrepresentation of trans athletes in sports participation and titles. This is likely because the deck is stacked against these young people in so many other ways that are unrelated to testosterone levels. Trans youth suffer from high rates of harassment, discrimination, and subsequent anxiety and depression that make it difficult to compete in and excel in sports.
Medical bills
State legislators have introduced bills around the country that would criminalize the provision of gender-affirming medical care for transgender youth. Though such bills are opposed by all major medical organizations (including the American Medical Association, the American Academy of Pediatrics, the American Academy of Child & Adolescent Psychiatry, and the American Psychiatric Association), misinformation continues to spread, and in some instances the bills have become law (though none are currently active due to legal challenges).
Clinicians should be aware that there have been sixteen studies to date, each with unique study designs, that have overall linked gender-affirming medical care for transgender youth to better mental health outcomes. While these interventions do (as with all medications) carry some risks (like delayed bone mineralization with pubertal suppression), the risks must be weighed against potential benefits. Unfortunately, these risks and benefits have not been accurately portrayed in state legislative debates. Politicians have spread a great deal of misinformation about gender-affirming medical care for transgender youth, including false assertions that puberty blockers cause infertility and that most transgender adolescents will grow up to identify as cisgender and regret gender-affirming medical interventions.
Minority stress
These bills have direct consequences for pediatric patients. For example, trans-inclusive bathroom policies are associated with lower rates of sexual assault. However, there are also important indirect effects to consider. The gender minority stress framework explains the ways in which stigmatizing national discourse drives higher rates of anxiety, depression, and suicidality among transgender youth. Under this model, so-called “distal factors” like the recent conversations at the national level that marginalize trans young people, are expected to drive higher rates of adverse mental health outcomes. As transgender youth hear high-profile politicians argue that they’re dangerous to their peers in bathrooms and on sports teams, it’s difficult to imagine their mental health would not worsen. Over time, such “distal factors” also lead to “proximal factors” like internalized transphobia in which youth begin to believe the negative things that are said about them. These dangerous processes can have dramatic negative impacts on self-esteem and emotional development. There is strong precedence that public policies have strong indirect mental health effects on LGBTQ youth.
We’ve entered a dangerous era in which politicians are legislating medical care and other aspects of public policy with the potential to hurt the mental health of our young patients. It’s imperative that clinicians and scientists contact their legislators to make sure they are voting for public policy based on data and fact, not misinformation and political rhetoric. The health of American children depends on it.
Dr. Turban (twitter.com/jack_turban) is a chief fellow in child and adolescent psychiatry at Stanford (Calif.) University.
In 2021, state lawmakers introduced a record number of bills that would affect transgender and gender-diverse people. The vast majority were focused on transgender and gender-diverse youth in particular. We’ve seen bills that would take away gender-affirming medical care for minors, ones that would force trans kids to play on sports teams that don’t match their gender identity, and others that would ban trans kids from public facilities like bathrooms that match their gender identities.
These bills aren’t particularly new, but state lawmakers are putting more energy into them than ever. In response, some public figures have started pushing back. Ariana Grande just pledged to match up to 1.5 million dollars in donations to combat anti–trans youth legislative initiatives. However, doctors have been underrepresented in the political discourse.
Sadly, much of the discussion in this area has been driven by wild speculation and emotional rhetoric. It’s rare that we see actual data brought to the table. As clinicians and scientists, we have a responsibility to highlight the data relevant to these legislative debates, and to share them with our representatives. I’m going to break down what we know quantitatively about each of these issues, so that you’ll feel empowered to bring that information to these debates. My hope is that we can move toward evidence-based public policy instead of rhetoric-based public policy, so that we can ensure the best health possible for young people around the country.
Bathroom bills
Though they’ve been less of a focus recently, politicians for years have argued that trans people should be forced to use bathrooms and other public facilities that match their sex assigned at birth, not their gender identity. Their central argument is that trans-inclusive public facility policies will result in higher rates of assault. Published peer-review data show this isn’t true. A 2019 study in Sexuality Research and Social Policy examined the impacts of trans-inclusive public facility policies and found they resulted in no increase in assaults among the general (mostly cisgender) population. Another 2019 study in Pediatrics found that trans-inclusive facility policies were associated with lower odds of sexual assault victimization against transgender youth. The myth that trans-inclusive public facilities increase assault risk is simply that: a myth. All existing data indicate that trans-inclusive policies will improve public safety.
Sports bills
One of the hottest debates recently involves whether transgender girls should be allowed to participate in girls’ sports teams. Those in favor of these bills argue that transgender girls have an innate biological sports advantage over cisgender girls, and if allowed to compete in girls’ sports leagues, they will dominate the events, and cisgender girls will no longer win sports titles. The bills feed into longstanding assumptions – those who were assigned male at birth are strong, and those who were assigned female at birth are weak.
But evidence doesn’t show that trans women dominate female sports leagues. It turns out, there are shockingly few transgender athletes competing in sports leagues around the United States, and even fewer winning major titles. When the Associated Press conducted an investigation asking lawmakers introducing such sports bills to name trans athletes in their states, most couldn’t point to a single one. After Utah state legislators passed a trans sports ban, Governor Spencer Cox vetoed it, pointing out that, of 75,000 high school kids participating in sports in Utah, there was only a single transgender girl (the state legislature overrode the veto anyway).
California has explicitly protected the rights of trans athletes to compete on sports teams that match their gender identity since 2013. There’s still an underrepresentation of trans athletes in sports participation and titles. This is likely because the deck is stacked against these young people in so many other ways that are unrelated to testosterone levels. Trans youth suffer from high rates of harassment, discrimination, and subsequent anxiety and depression that make it difficult to compete in and excel in sports.
Medical bills
State legislators have introduced bills around the country that would criminalize the provision of gender-affirming medical care for transgender youth. Though such bills are opposed by all major medical organizations (including the American Medical Association, the American Academy of Pediatrics, the American Academy of Child & Adolescent Psychiatry, and the American Psychiatric Association), misinformation continues to spread, and in some instances the bills have become law (though none are currently active due to legal challenges).
Clinicians should be aware that there have been sixteen studies to date, each with unique study designs, that have overall linked gender-affirming medical care for transgender youth to better mental health outcomes. While these interventions do (as with all medications) carry some risks (like delayed bone mineralization with pubertal suppression), the risks must be weighed against potential benefits. Unfortunately, these risks and benefits have not been accurately portrayed in state legislative debates. Politicians have spread a great deal of misinformation about gender-affirming medical care for transgender youth, including false assertions that puberty blockers cause infertility and that most transgender adolescents will grow up to identify as cisgender and regret gender-affirming medical interventions.
Minority stress
These bills have direct consequences for pediatric patients. For example, trans-inclusive bathroom policies are associated with lower rates of sexual assault. However, there are also important indirect effects to consider. The gender minority stress framework explains the ways in which stigmatizing national discourse drives higher rates of anxiety, depression, and suicidality among transgender youth. Under this model, so-called “distal factors” like the recent conversations at the national level that marginalize trans young people, are expected to drive higher rates of adverse mental health outcomes. As transgender youth hear high-profile politicians argue that they’re dangerous to their peers in bathrooms and on sports teams, it’s difficult to imagine their mental health would not worsen. Over time, such “distal factors” also lead to “proximal factors” like internalized transphobia in which youth begin to believe the negative things that are said about them. These dangerous processes can have dramatic negative impacts on self-esteem and emotional development. There is strong precedence that public policies have strong indirect mental health effects on LGBTQ youth.
We’ve entered a dangerous era in which politicians are legislating medical care and other aspects of public policy with the potential to hurt the mental health of our young patients. It’s imperative that clinicians and scientists contact their legislators to make sure they are voting for public policy based on data and fact, not misinformation and political rhetoric. The health of American children depends on it.
Dr. Turban (twitter.com/jack_turban) is a chief fellow in child and adolescent psychiatry at Stanford (Calif.) University.
Review of Ethnoracial Representation in Clinical Trials (Phases 1 Through 4) of Atopic Dermatitis Therapies
To the Editor:
Atopic dermatitis (AD) affects an estimated 7.2% of adults and 10.7% of children in the United States; however, AD might affect different races at a varying rate.1 Compared to their European American counterparts, Asian/Pacific Islanders and African Americans are 7 and 3 times more likely, respectively, to be given a diagnosis of AD.2
Despite being disproportionately affected by AD, minority groups might be underrepresented in clinical trials of AD treatments.3 One explanation for this imbalance might be that ethnoracial representation differs across regions in the United States, perhaps in regions where clinical trials are conducted. Price et al3 investigated racial representation in clinical trials of AD globally and found that patients of color are consistently underrepresented.
Research on racial representation in clinical trials within the United States—on national and regional scales—is lacking from the current AD literature. We conducted a study to compare racial and ethnic disparities in AD clinical trials across regions of the United States.
Using the ClinicalTrials.gov database (www.clinicaltrials.gov) of the National Library of Medicine, we identified clinical trials of AD treatments (encompassing phases 1 through 4) in the United States that were completed before March 14, 2021, with the earliest data from 2013. Search terms included atopic dermatitis, with an advanced search for interventional (clinical trials) and with results.
In total, 95 completed clinical trials were identified, of which 26 (27.4%) reported ethnoracial demographic data. One trial was excluded due to misrepresentation regarding the classification of individuals who identified as more than 1 racial category. Clinical trials for systemic treatments (7 [28%]) and topical treatments (18 [72%]) were identified.
All ethnoracial data were self-reported by trial participants based on US Food and Drug Administration guidelines for racial and ethnic categorization.4 Trial participants who identified ethnically as Hispanic or Latino might have been a part of any racial group. Only 7 of the 25 included clinical trials (28%) provided ethnic demographic data (Hispanic [Latino] or non-Hispanic); 72% of trials failed to report ethnicity. Ethnic data included in our analysis came from only the 7 clinical trials that included these data. International multicenter trials that included a US site were excluded.
Ultimately, the number of trials included in our analysis was 25, comprised of 2443 participants. Data were further organized by US geographic region (Northeast, Midwest, South, West, and multiregion trials [ie, conducted in ≥2 regions]). No AD clinical trials were conducted solely in the Midwest; it was only included within multiregion trials.
Compared to their representation in the 2019 US Census, most minority groups were overrepresented in clinical trials, while White individuals were underrepresented (eTable). The percentages of our findings on representation for race are as follows (US Census data are listed in parentheses for comparison5):
- White: 56.8% (72.5%)
- Black/African American: 28.3% (12.7%)
- Asian: 10.3% (5.5%)
- Multiracial: 1.1% (3.3%)
- Native Hawaiian or other Pacific Islander: 0.3% (0.2%)
- American Indian or Alaska Native: 0.2% (0.8%)
- Other: 0.5% (4.9%).
Our findings on representation for ethnicity are as follows (US Census data is listed in parentheses for comparison5):
- Hispanic or Latino: 21.4% (18.0%)
Although representation of Black/African American and Asian participants in clinical trials was higher than their representation in US Census data and representation of White participants was lower in clinical trials than their representation in census data, equal representation among all racial and ethnic groups is still lacking. A potential explanation for this finding might be that requirements for trial inclusion selected for more minority patients, given the propensity for greater severity of AD among those racial groups.2 Another explanation might be that efforts to include minority patients in clinical trials are improving.
There were great differences in ethnoracial representation in clinical trials when regions within the United States were compared. Based on census population data by region, the West had the highest percentage (29.9%) of Hispanic or Latino residents; however, this group represented only 11.7% of participants in AD clinical trials in that region.5
The South had the greatest number of participants in AD clinical trials of any region, which was consistent with research findings on an association between severity of AD and heat.6 With a warmer climate correlating with an increased incidence of AD, it is possible that more people are willing to participate in clinical trials in the South.
The Midwest was the only region in which region-specific clinical trials were not conducted. Recent studies have shown that individuals with AD who live in the Midwest have comparatively less access to health care associated with AD treatment and are more likely to visit an emergency department because of AD than individuals in any other US region.7 This discrepancy highlights the need for increased access to resources and clinical trials focused on the treatment of AD in the Midwest.
In 1993, the National Institutes of Health Revitalization Act established a federal legislative mandate to encourage inclusion of women and people of color in clinical trials.8 During the last 2 decades, there have been improvements in ethnoracial reporting. A 2020 global study found that 81.1% of randomized controlled trials (phases 2 and 3) of AD treatments reported ethnoracial data.3
Equal representation in clinical trials allows for further investigation of the connection between race, AD severity, and treatment efficacy. Clinical trials need to have equal representation of ethnoracial categories across all regions of the United States. If one group is notably overrepresented, ethnoracial associations related to the treatment of AD might go undetected.9 Similarly, if representation is unequal, relationships of treatment efficacy within ethnoracial groups also might go undetected. None of the clinical trials that we analyzed investigated treatment efficacy by race, suggesting that there is a need for future research in this area.
It also is important to note that broad classifications of race and ethnicity are limiting and therefore overlook differences within ethnoracial categories. Although representation of minority patients in clinical trials for AD treatments is improving, we conclude that there remains a need for greater and equal representation of minority groups in clinical trials of AD treatments in the United States.
- Avena-Woods C. Overview of atopic dermatitis. Am J Manag Care. 2017;23(8 suppl):S115-S123.
- Kaufman BP, Guttman‐Yassky E, Alexis AF. Atopic dermatitis in diverse racial and ethnic groups—variations in epidemiology, genetics, clinical presentation and treatment. Exp Dermatol. 2018;27:340-357. doi:10.1111/exd.13514
- Price KN, Krase JM, Loh TY, et al. Racial and ethnic disparities in global atopic dermatitis clinical trials. Br J Dermatol. 2020;183:378-380. doi:10.1111/bjd.18938
- Collection of race and ethnicity data in clinical trials: guidance for industry and Food and Drug Administration staff. US Food and Drug Administration; October 26, 2016. Accessed February 20, 2022. https://www.fda.gov/media/75453/download
- United States Census Bureau. 2019 Population estimates by age, sex, race and Hispanic origin. Published June 25, 2020. Accessed March 22, 2022. https://www.census.gov/newsroom/press-kits/2020/population-estimates-detailed.html
- Fleischer AB Jr. Atopic dermatitis: the relationship to temperature and seasonality in the United States. Int J Dermatol. 2019;58:465-471. doi:10.1111/ijd.14289
- Wu KK, Nguyen KB, Sandhu JK, et al. Does location matter? geographic variations in healthcare resource use for atopic dermatitis in the United States. J Dermatolog Treat. 2021;32:314-320. doi:10.1080/09546634.2019.1656796
- National Institutes of Health Revitalization Act of 1993, 42 USC 201 (1993). Accessed February 20, 2022. https://www.govinfo.gov/content/pkg/STATUTE-107/pdf/STATUTE-107-Pg122.pdf
- Hirano SA, Murray SB, Harvey VM. Reporting, representation, and subgroup analysis of race and ethnicity in published clinical trials of atopic dermatitis in the United States between 2000 and 2009. Pediatr Dermatol. 2012;29:749-755. doi:10.1111/j.1525-1470.2012.01797.x
To the Editor:
Atopic dermatitis (AD) affects an estimated 7.2% of adults and 10.7% of children in the United States; however, AD might affect different races at a varying rate.1 Compared to their European American counterparts, Asian/Pacific Islanders and African Americans are 7 and 3 times more likely, respectively, to be given a diagnosis of AD.2
Despite being disproportionately affected by AD, minority groups might be underrepresented in clinical trials of AD treatments.3 One explanation for this imbalance might be that ethnoracial representation differs across regions in the United States, perhaps in regions where clinical trials are conducted. Price et al3 investigated racial representation in clinical trials of AD globally and found that patients of color are consistently underrepresented.
Research on racial representation in clinical trials within the United States—on national and regional scales—is lacking from the current AD literature. We conducted a study to compare racial and ethnic disparities in AD clinical trials across regions of the United States.
Using the ClinicalTrials.gov database (www.clinicaltrials.gov) of the National Library of Medicine, we identified clinical trials of AD treatments (encompassing phases 1 through 4) in the United States that were completed before March 14, 2021, with the earliest data from 2013. Search terms included atopic dermatitis, with an advanced search for interventional (clinical trials) and with results.
In total, 95 completed clinical trials were identified, of which 26 (27.4%) reported ethnoracial demographic data. One trial was excluded due to misrepresentation regarding the classification of individuals who identified as more than 1 racial category. Clinical trials for systemic treatments (7 [28%]) and topical treatments (18 [72%]) were identified.
All ethnoracial data were self-reported by trial participants based on US Food and Drug Administration guidelines for racial and ethnic categorization.4 Trial participants who identified ethnically as Hispanic or Latino might have been a part of any racial group. Only 7 of the 25 included clinical trials (28%) provided ethnic demographic data (Hispanic [Latino] or non-Hispanic); 72% of trials failed to report ethnicity. Ethnic data included in our analysis came from only the 7 clinical trials that included these data. International multicenter trials that included a US site were excluded.
Ultimately, the number of trials included in our analysis was 25, comprised of 2443 participants. Data were further organized by US geographic region (Northeast, Midwest, South, West, and multiregion trials [ie, conducted in ≥2 regions]). No AD clinical trials were conducted solely in the Midwest; it was only included within multiregion trials.
Compared to their representation in the 2019 US Census, most minority groups were overrepresented in clinical trials, while White individuals were underrepresented (eTable). The percentages of our findings on representation for race are as follows (US Census data are listed in parentheses for comparison5):
- White: 56.8% (72.5%)
- Black/African American: 28.3% (12.7%)
- Asian: 10.3% (5.5%)
- Multiracial: 1.1% (3.3%)
- Native Hawaiian or other Pacific Islander: 0.3% (0.2%)
- American Indian or Alaska Native: 0.2% (0.8%)
- Other: 0.5% (4.9%).
Our findings on representation for ethnicity are as follows (US Census data is listed in parentheses for comparison5):
- Hispanic or Latino: 21.4% (18.0%)
Although representation of Black/African American and Asian participants in clinical trials was higher than their representation in US Census data and representation of White participants was lower in clinical trials than their representation in census data, equal representation among all racial and ethnic groups is still lacking. A potential explanation for this finding might be that requirements for trial inclusion selected for more minority patients, given the propensity for greater severity of AD among those racial groups.2 Another explanation might be that efforts to include minority patients in clinical trials are improving.
There were great differences in ethnoracial representation in clinical trials when regions within the United States were compared. Based on census population data by region, the West had the highest percentage (29.9%) of Hispanic or Latino residents; however, this group represented only 11.7% of participants in AD clinical trials in that region.5
The South had the greatest number of participants in AD clinical trials of any region, which was consistent with research findings on an association between severity of AD and heat.6 With a warmer climate correlating with an increased incidence of AD, it is possible that more people are willing to participate in clinical trials in the South.
The Midwest was the only region in which region-specific clinical trials were not conducted. Recent studies have shown that individuals with AD who live in the Midwest have comparatively less access to health care associated with AD treatment and are more likely to visit an emergency department because of AD than individuals in any other US region.7 This discrepancy highlights the need for increased access to resources and clinical trials focused on the treatment of AD in the Midwest.
In 1993, the National Institutes of Health Revitalization Act established a federal legislative mandate to encourage inclusion of women and people of color in clinical trials.8 During the last 2 decades, there have been improvements in ethnoracial reporting. A 2020 global study found that 81.1% of randomized controlled trials (phases 2 and 3) of AD treatments reported ethnoracial data.3
Equal representation in clinical trials allows for further investigation of the connection between race, AD severity, and treatment efficacy. Clinical trials need to have equal representation of ethnoracial categories across all regions of the United States. If one group is notably overrepresented, ethnoracial associations related to the treatment of AD might go undetected.9 Similarly, if representation is unequal, relationships of treatment efficacy within ethnoracial groups also might go undetected. None of the clinical trials that we analyzed investigated treatment efficacy by race, suggesting that there is a need for future research in this area.
It also is important to note that broad classifications of race and ethnicity are limiting and therefore overlook differences within ethnoracial categories. Although representation of minority patients in clinical trials for AD treatments is improving, we conclude that there remains a need for greater and equal representation of minority groups in clinical trials of AD treatments in the United States.
To the Editor:
Atopic dermatitis (AD) affects an estimated 7.2% of adults and 10.7% of children in the United States; however, AD might affect different races at a varying rate.1 Compared to their European American counterparts, Asian/Pacific Islanders and African Americans are 7 and 3 times more likely, respectively, to be given a diagnosis of AD.2
Despite being disproportionately affected by AD, minority groups might be underrepresented in clinical trials of AD treatments.3 One explanation for this imbalance might be that ethnoracial representation differs across regions in the United States, perhaps in regions where clinical trials are conducted. Price et al3 investigated racial representation in clinical trials of AD globally and found that patients of color are consistently underrepresented.
Research on racial representation in clinical trials within the United States—on national and regional scales—is lacking from the current AD literature. We conducted a study to compare racial and ethnic disparities in AD clinical trials across regions of the United States.
Using the ClinicalTrials.gov database (www.clinicaltrials.gov) of the National Library of Medicine, we identified clinical trials of AD treatments (encompassing phases 1 through 4) in the United States that were completed before March 14, 2021, with the earliest data from 2013. Search terms included atopic dermatitis, with an advanced search for interventional (clinical trials) and with results.
In total, 95 completed clinical trials were identified, of which 26 (27.4%) reported ethnoracial demographic data. One trial was excluded due to misrepresentation regarding the classification of individuals who identified as more than 1 racial category. Clinical trials for systemic treatments (7 [28%]) and topical treatments (18 [72%]) were identified.
All ethnoracial data were self-reported by trial participants based on US Food and Drug Administration guidelines for racial and ethnic categorization.4 Trial participants who identified ethnically as Hispanic or Latino might have been a part of any racial group. Only 7 of the 25 included clinical trials (28%) provided ethnic demographic data (Hispanic [Latino] or non-Hispanic); 72% of trials failed to report ethnicity. Ethnic data included in our analysis came from only the 7 clinical trials that included these data. International multicenter trials that included a US site were excluded.
Ultimately, the number of trials included in our analysis was 25, comprised of 2443 participants. Data were further organized by US geographic region (Northeast, Midwest, South, West, and multiregion trials [ie, conducted in ≥2 regions]). No AD clinical trials were conducted solely in the Midwest; it was only included within multiregion trials.
Compared to their representation in the 2019 US Census, most minority groups were overrepresented in clinical trials, while White individuals were underrepresented (eTable). The percentages of our findings on representation for race are as follows (US Census data are listed in parentheses for comparison5):
- White: 56.8% (72.5%)
- Black/African American: 28.3% (12.7%)
- Asian: 10.3% (5.5%)
- Multiracial: 1.1% (3.3%)
- Native Hawaiian or other Pacific Islander: 0.3% (0.2%)
- American Indian or Alaska Native: 0.2% (0.8%)
- Other: 0.5% (4.9%).
Our findings on representation for ethnicity are as follows (US Census data is listed in parentheses for comparison5):
- Hispanic or Latino: 21.4% (18.0%)
Although representation of Black/African American and Asian participants in clinical trials was higher than their representation in US Census data and representation of White participants was lower in clinical trials than their representation in census data, equal representation among all racial and ethnic groups is still lacking. A potential explanation for this finding might be that requirements for trial inclusion selected for more minority patients, given the propensity for greater severity of AD among those racial groups.2 Another explanation might be that efforts to include minority patients in clinical trials are improving.
There were great differences in ethnoracial representation in clinical trials when regions within the United States were compared. Based on census population data by region, the West had the highest percentage (29.9%) of Hispanic or Latino residents; however, this group represented only 11.7% of participants in AD clinical trials in that region.5
The South had the greatest number of participants in AD clinical trials of any region, which was consistent with research findings on an association between severity of AD and heat.6 With a warmer climate correlating with an increased incidence of AD, it is possible that more people are willing to participate in clinical trials in the South.
The Midwest was the only region in which region-specific clinical trials were not conducted. Recent studies have shown that individuals with AD who live in the Midwest have comparatively less access to health care associated with AD treatment and are more likely to visit an emergency department because of AD than individuals in any other US region.7 This discrepancy highlights the need for increased access to resources and clinical trials focused on the treatment of AD in the Midwest.
In 1993, the National Institutes of Health Revitalization Act established a federal legislative mandate to encourage inclusion of women and people of color in clinical trials.8 During the last 2 decades, there have been improvements in ethnoracial reporting. A 2020 global study found that 81.1% of randomized controlled trials (phases 2 and 3) of AD treatments reported ethnoracial data.3
Equal representation in clinical trials allows for further investigation of the connection between race, AD severity, and treatment efficacy. Clinical trials need to have equal representation of ethnoracial categories across all regions of the United States. If one group is notably overrepresented, ethnoracial associations related to the treatment of AD might go undetected.9 Similarly, if representation is unequal, relationships of treatment efficacy within ethnoracial groups also might go undetected. None of the clinical trials that we analyzed investigated treatment efficacy by race, suggesting that there is a need for future research in this area.
It also is important to note that broad classifications of race and ethnicity are limiting and therefore overlook differences within ethnoracial categories. Although representation of minority patients in clinical trials for AD treatments is improving, we conclude that there remains a need for greater and equal representation of minority groups in clinical trials of AD treatments in the United States.
- Avena-Woods C. Overview of atopic dermatitis. Am J Manag Care. 2017;23(8 suppl):S115-S123.
- Kaufman BP, Guttman‐Yassky E, Alexis AF. Atopic dermatitis in diverse racial and ethnic groups—variations in epidemiology, genetics, clinical presentation and treatment. Exp Dermatol. 2018;27:340-357. doi:10.1111/exd.13514
- Price KN, Krase JM, Loh TY, et al. Racial and ethnic disparities in global atopic dermatitis clinical trials. Br J Dermatol. 2020;183:378-380. doi:10.1111/bjd.18938
- Collection of race and ethnicity data in clinical trials: guidance for industry and Food and Drug Administration staff. US Food and Drug Administration; October 26, 2016. Accessed February 20, 2022. https://www.fda.gov/media/75453/download
- United States Census Bureau. 2019 Population estimates by age, sex, race and Hispanic origin. Published June 25, 2020. Accessed March 22, 2022. https://www.census.gov/newsroom/press-kits/2020/population-estimates-detailed.html
- Fleischer AB Jr. Atopic dermatitis: the relationship to temperature and seasonality in the United States. Int J Dermatol. 2019;58:465-471. doi:10.1111/ijd.14289
- Wu KK, Nguyen KB, Sandhu JK, et al. Does location matter? geographic variations in healthcare resource use for atopic dermatitis in the United States. J Dermatolog Treat. 2021;32:314-320. doi:10.1080/09546634.2019.1656796
- National Institutes of Health Revitalization Act of 1993, 42 USC 201 (1993). Accessed February 20, 2022. https://www.govinfo.gov/content/pkg/STATUTE-107/pdf/STATUTE-107-Pg122.pdf
- Hirano SA, Murray SB, Harvey VM. Reporting, representation, and subgroup analysis of race and ethnicity in published clinical trials of atopic dermatitis in the United States between 2000 and 2009. Pediatr Dermatol. 2012;29:749-755. doi:10.1111/j.1525-1470.2012.01797.x
- Avena-Woods C. Overview of atopic dermatitis. Am J Manag Care. 2017;23(8 suppl):S115-S123.
- Kaufman BP, Guttman‐Yassky E, Alexis AF. Atopic dermatitis in diverse racial and ethnic groups—variations in epidemiology, genetics, clinical presentation and treatment. Exp Dermatol. 2018;27:340-357. doi:10.1111/exd.13514
- Price KN, Krase JM, Loh TY, et al. Racial and ethnic disparities in global atopic dermatitis clinical trials. Br J Dermatol. 2020;183:378-380. doi:10.1111/bjd.18938
- Collection of race and ethnicity data in clinical trials: guidance for industry and Food and Drug Administration staff. US Food and Drug Administration; October 26, 2016. Accessed February 20, 2022. https://www.fda.gov/media/75453/download
- United States Census Bureau. 2019 Population estimates by age, sex, race and Hispanic origin. Published June 25, 2020. Accessed March 22, 2022. https://www.census.gov/newsroom/press-kits/2020/population-estimates-detailed.html
- Fleischer AB Jr. Atopic dermatitis: the relationship to temperature and seasonality in the United States. Int J Dermatol. 2019;58:465-471. doi:10.1111/ijd.14289
- Wu KK, Nguyen KB, Sandhu JK, et al. Does location matter? geographic variations in healthcare resource use for atopic dermatitis in the United States. J Dermatolog Treat. 2021;32:314-320. doi:10.1080/09546634.2019.1656796
- National Institutes of Health Revitalization Act of 1993, 42 USC 201 (1993). Accessed February 20, 2022. https://www.govinfo.gov/content/pkg/STATUTE-107/pdf/STATUTE-107-Pg122.pdf
- Hirano SA, Murray SB, Harvey VM. Reporting, representation, and subgroup analysis of race and ethnicity in published clinical trials of atopic dermatitis in the United States between 2000 and 2009. Pediatr Dermatol. 2012;29:749-755. doi:10.1111/j.1525-1470.2012.01797.x
Practice Points
- Although minority groups are disproportionally affected by atopic dermatitis (AD), they may be underrepresented in clinical trials for AD in the United States.
- Equal representation among ethnoracial groups in clinical trials is important to allow for a more thorough investigation of the efficacy of treatments for AD.
Tinted Sunscreens: Consumer Preferences Based on Light, Medium, and Dark Skin Tones
Sunscreen formulations typically protect from UV radiation (290–400 nm), as this is a well-established cause of photodamage, photoaging, and skin cancer.1 However, sunlight also consists of visible (400–700 nm) and infrared (>700 nm) radiation.2 In fact, UV radiation only comprises 5% to 7% of the solar radiation that reaches the surface of the earth, while visible and infrared lights comprise 44% and 53%, respectively.3 Visible light (VL) is the only portion of the solar spectrum visible to the human eye; it penetrates the skin to a depth range of 90 to 750 µm compared to 1.5 to 90 µm for UV radiation.4 Visible light also may come from artificial sources such as light bulbs and digital screens. The rapidly increasing use of smartphones, tablets, laptops, and other digital screens that emit high levels of short-wavelength VL has increased concerns about the safety of these devices. Although blue light exposure from screens is small compared with the amount of exposure from the sun, there is concern about the long-term effects of excessive screen time. Recent studies have demonstrated that exposure to light emitted from electronic devices, even for as little as 1 hour, may cause reactive oxygen species generation, apoptosis, collagen degradation, and necrosis of skin cells.5 Visible light increases tyrosinase activity and induces immediate erythema in light-skinned individuals and long-lasting pigmentation in dark-skinned individuals.4,6
Sunscreens consist of chemical and mineral active ingredients that contain UV filters designed to absorb, scatter, and reflect UV photons with wavelengths up to 380 nm. Historically, traditional options do not protect against the effects induced by VL, as these sunscreens use nanosized particles that help to reduce the white appearance and result in transparency of the product.7 To block VL, the topical agent must be visible. Tinted sunscreens (TSs) are products that combine UV and VL filters. They give a colored base coverage that is achieved by incorporating a blend of black, red, and yellow iron oxides (IOs) and/or pigmentary titanium dioxide (PTD)(ie, titanium dioxide [TD] that is not nanosized). Because TSs offer an instant glow and protect the skin from both sun and artificial light, they have become increasingly popular and have been incorporated into makeup and skin care products to facilitate daily convenient use.
The purpose of this analysis was to study current available options and product factors that may influence consumer preference when choosing a TS based on the reviewer characteristics.
Methods
The keyword sunscreen was searched in the broader category of skin care products on an online supplier of sunscreens (www.sephora.com). This supplier was chosen because, unlike other sources, specific reviewer characteristics regarding underlying skin tone also were available. The search produced 161 results. For the purpose of this analysis, only facial TSs containing IO and/or PTD were included. Each sunscreen was checked by the authors, and 58 sunscreens that met the inclusion criteria were identified and further reviewed. Descriptive data, including formulation, sun protection factor (SPF), ingredient type (chemical or physical), pigments used, shades available, additional benefits, price range, rating, and user reviews, were gathered. The authors extracted these data from the product information on the website, manufacturer claims, ratings, and reviewer comments on each of the listed sunscreens.
For each product, the content of the top 10 most helpful positive and negative reviews as voted by consumers (1160 total reviews, consisting of 1 or more comments) was analyzed. Two authors (H.D.L.G. and P.V.) coded consumer-reported comments for positive and negative descriptors into the categories of cosmetic elegance, performance, skin compatibility and tolerance, tone compatibility, and affordability. Cosmetic elegance was defined as any feature associated with skin sensation (eg, greasy), color (eg, white cast), scent, ability to blend, and overall appearance of the product on the skin. Product performance included SPF, effectiveness in preventing sunburn, coverage, and finish claims (ie, matte, glow, invisible). Skin compatibility and tolerance were represented in the reviewers’ comments and reflected how the product performed in association with underlying dermatologic conditions, skin type, and if there were any side effects such as irritation or allergic reactions. Tone compatibility referred to TS color similarity with users’ skin and shades available for individual products. Affordability reflected consumers’ perceptions of the product price. Comments may be included in multiple categories (eg, a product was noted to blend well on the skin but did not provide enough coverage). Of entries, 10% (116/1160 reviews) were coded by first author (H.D.L.G.) to ensure internal validity. Reviewer characteristics were consistently available and were used to determine the top 5 recommended products for light-, medium-, and dark-skinned individuals based on the number of 5-star ratings in each group. Porcelain, fair, and light were considered light skin tones. Medium, tan, and olive were considered medium skin tones. Deep, dark, and ebony were considered dark skin tones.
Results
Sunscreen Characteristics—Among the 161 screened products, 58 met the inclusion criteria. Four types of formulations were included: lotion, cream, liquid, and powder. Twenty-nine (50%) were creams, followed by lotions (19%), liquids (28%), and powders (3%). More than 79% (46/58) of products had a reported SPF of 30 or higher. Sunscreens with an active physical ingredient—the minerals TD and/or zinc oxide (ZO)—were most common (33/58 [57%]), followed by the chemical sunscreens avobenzone, octinoxate, oxybenzone, homosalate, octisalate, and/or octocrylene active ingredients (14/58 [24%]), and a combination of chemical and physical sunscreens (11/58 [19%]). Nearly all products (55/58 [95%]) contained pigmentary IO (red, CI 77491; yellow, CI 77492; black, CI 77499). Notably, only 38% (22/58) of products had more than 1 shade. All products had additional claims associated with being hydrating, having antiaging effects, smoothing texture, minimizing the appearance of pores, softening lines, and/or promoting even skin tone. Traditional physical sunscreens (those containing TD and/or ZO) were more expensive than chemical sunscreens, with a median price of $30. The median review rating was 4.5 of 5 stars, with a median of 2300 customer reviews per product. Findings are summarized in Table 1.
Positive Features of Sunscreens—Based on an analysis of total reviews (N=1160), cosmetic elegance was the most cited positive feature associated with TS products (31%), followed by product performance (10%). Skin compatibility and tolerance (7%), tone compatibility (7%), and affordability (7%) were cited less commonly as positive features. When negative features were cited, consumers mostly noted tone incompatibility (16%) and cosmetic elegance concerns (14%). Product performance (13%) was comparatively cited as a negative feature (Table 1). Exemplary positive comments categorized in cosmetic elegance included the subthemes of rubs in well and natural glow. Exemplary negative comments in cosmetic elegance and tone compatibility categories included the subthemes patchy/dry finish and color mismatch. Table 1 illustrates these findings.
Product Recommendations—The top 5 recommendations of the best TS for each skin tone are listed in Table 2. The mean price of the recommended products was $42 for 1 to 1.9 oz. Laura Mercier Tinted Moisturizer Oil Free Natural Skin Perfector broad spectrum SPF 20 (Laura Mercier) was the top product for all 3 groups. Similarly, of 58 products available, the same 5 products—Laura Mercier Tinted Moisturizer Oil Free Natural Skin Perfector broad spectrum SPF 20, IT Cosmetics CC+ Cream with SPF 50 (IT Cosmetics, LLC), Tarte Amazonian Clay BB Tinted Moisturizer Broad Spectrum SPF 20 (Tarte Cosmetics), NARS Pure Radiant Tinted Moisturizer Broad Spectrum SPF 30 (NARS Cosmetics), and Laura Mercier Tinted Moisturizer Natural Skin Perfector broad spectrum SPF 30—were considered the best among consumers of all skin tones, with the addition of 2 different products (bareMinerals Original Liquid Mineral Foundation Broad Spectrum SPF 20 [bareMinerals] and ILIA Super Serum Skin Tint SPF 40 Foundation [ILIA Beauty]) in the dark skin group. Notably, these products were the only ones on Sephora’s website that offered up to 30 (22 on average) different shades.
Comment
Tone Compatibility—Tinted sunscreens were created to extend the range of photoprotection into the VL spectrum. The goal of TSs is to incorporate pigments that blend in with the natural skin tone, produce a glow, and have an aesthetically pleasing appearance. To accommodate a variety of skin colors, different shades can be obtained by mixing different amounts of yellow, red, and black IO with or without PTD. The pigments and reflective compounds provide color, opacity, and a natural coverage. Our qualitative analysis provides information on the lack of diversity among shades available for TS, especially for darker skin tones. Of the 58 products evaluated, 62% (32/58) only had 1 shade. In our cohort, tone compatibility was the most commonly cited negative feature. Of note, 89% of these comments were from consumers with dark skin tones, and there was a disproportional number of reviews by darker-skinned individuals compared to users with light and medium skin tones. This is of particular importance, as TSs have been shown to protect against dermatoses that disproportionally affect individuals with skin of color. When comparing sunscreen formulations containing IO with regular mineral sunscreens, Dumbuya et al3 found that IO-containing formulations significantly protected against VL-induced pigmentation compared with untreated skin or mineral sunscreen with SPF 50 or higher in individuals with Fitzpatrick skin type IV (P<.001). Similarly, Bernstein et al8 found that exposing patients with Fitzpatrick skin types III and IV to blue-violet light resulted in marked hyperpigmentation that lasted up to 3 months. Visible light elicits immediate and persistent pigment darkening in individuals with Fitzpatrick skin phototype III and above via the photo-oxidation of pre-existing melanin and de novo melanogenesis.9 Tinted sunscreens formulated with IO have been shown to aid in the treatment of melasma and prevent hyperpigmentation in individuals with Fitzpatrick skin types IV to VI.10 Patients with darker skin tones with dermatoses aggravated or induced by VL, such as melasma and postinflammatory hyperpigmentation, may seek photoprotection provided by TS but find the lack of matching shades unappealing. The dearth of shade diversity that matches all skin tones can lead to inequities and disproportionally affect those with darker skin.
Performance—Tinted sunscreen formulations containing IO have been proven effective in protecting against high-energy VL, especially when combined synergistically with ZO.11 Kaye et al12 found that TSs containing IO and the inorganic filters TD or ZO reduced transmittance of VL more effectively than nontinted sunscreens containing TD or ZO alone or products containing organic filters. The decreased VL transmittance in the former is due to synergistic effects of the VL-scattering properties of the TD and the VL absorption properties of the IO. Similarly, Sayre et al13 demonstrated that IO was superior to TD and ZO in attenuating the transmission of VL. Bernstein et al14 found that darker shades containing higher percentages of IO increased the attenuation of VL to 98% compared with lighter shades attenuating 93%. This correlates with the results of prior studies highlighting the potential of TSs in protecting individuals with skin of color.3 In our cohort, comments regarding product performance and protection were mostly positive, claiming that consistent use reduced hyperpigmentation on the skin surface, giving the appearance of a more even skin tone.
Tolerability—Iron oxides are minerals known to be safe, gentle, and nontoxic on the surface of the skin.15 Two case reports of contact dermatitis due to IO have been reported.16,17 Within our cohort, only a few of the comments (6%) described negative product tolerance or compatibility with their skin type. However, it is more likely that these incompatibilities were due to other ingredients in the product or the individuals’ underlying dermatologic conditions.
Cosmetic Elegance—Most of the sunscreens available on the market today contain micronized forms of TD and ZO particles because they have better cosmetic acceptability.18 However, their reduced size compromises the protection provided against VL whereby the addition of IO is of vital importance. According to the RealSelf Sun Safety Report, only 11% of Americans wear sunscreen daily, and 46% never wear sunscreen.19 The most common reasons consumers reported for not wearing sunscreen included not liking how it looks on the skin, forgetting to apply it, and/or believing that application is inconvenient and time-consuming. Currently, TSs have been incorporated into daily-life products such as makeup, moisturizers, and serums, making application for users easy and convenient, decreasing the necessity of using multiple products, and offering the opportunity to choose from different presentations to make decisions for convenience and/or diverse occasions. Products containing IO blend in with the natural skin tone and have an aesthetically pleasing cosmetic appearance. In our cohort, comments regarding cosmetic elegance were highly valued and were present in multiple reviews (45%), with 69% being positive.
Affordability—In our cohort, product price was not predominantly mentioned in consumers’ reviews. However, negative comments regarding affordability were slightly higher than the positive (56% vs 44%). Notably, the mean price of our top recommendations was $42. Higher price was associated with products with a wider range of shades available. Prior studies have found similar results demonstrating that websites with recommendations on sunscreens for patients with skin of color compared with sunscreens for white or fair skin were more likely to recommend more expensive products (median, $14/oz vs $11.3/oz) despite the lower SPF level.20 According to Schneider,21 daily use of the cheapest sunscreen on the head/neck region recommended for white/pale skin ($2/oz) would lead to an annual cost of $61 compared to $182 for darker skin ($6/oz). This showcases the considerable variation in sunscreen prices for both populations that could potentiate disparities and vulnerability in the latter group.
Conclusion
Tinted sunscreens provide both functional and cosmetic benefits and are a safe, effective, and convenient way to protect against high-energy VL. This study suggests that patients with skin of color encounter difficulties in finding matching shades in TS products. These difficulties may stem from the lack of knowledge regarding dark complexions and undertones and the lack of representation of black and brown skin that has persisted in dermatology research journals and textbooks for decades.22 Our study provides important insights to help dermatologists improve their familiarity with the brands and characteristics of TSs geared to patients with all skin tones, including skin of color. Limitations include single-retailer information and inclusion of both highly and poorly rated comments with subjective data, limiting generalizability. The limited selection of shades for darker skin poses a roadblock to proper treatment and prevention. These data represent an area for improvement within the beauty industry and the dermatologic field to deliver culturally sensitive care by being knowledgeable about darker skin tones and TS formulations tailored to people with skin of color.
- McDaniel D, Farris P, Valacchi G. Atmospheric skin aging-contributors and inhibitors. J Cosmet Dermatol. 2018;17:124-137.
- Duteil L, Cardot-Leccia N, Queille-Roussel C, et al. Differences in visible light-induced pigmentation according to wavelengths: a clinical and histological study in comparison with UVB exposure. Pigment Cell Melanoma Res. 2014;27:822-826.
- Dumbuya H, Grimes PE, Lynch S, et al. Impact of iron-oxide containing formulations against visible light-induced skin pigmentation in skin of color individuals. J Drugs Dermatol. 2020;19:712-717.
- Lyons AB, Trullas C, Kohli I, et al. Photoprotection beyond ultraviolet radiation: a review of tinted sunscreens. J Am Acad Dermatol. 2021;84:1393-1397.
- Austin E, Huang A, Adar T, et al. Electronic device generated light increases reactive oxygen species in human fibroblasts [published online February 5, 2018]. Lasers Surg Med. doi:10.1002/lsm.22794
- Randhawa M, Seo I, Liebel F, et al. Visible light induces melanogenesis in human skin through a photoadaptive response. PLoS One. 2015;10:e0130949.
- Yeager DG, Lim HW. What’s new in photoprotection: a review of new concepts and controversies. Dermatol Clin. 2019;37:149-157.
- Bernstein EF, Sarkas HW, Boland P. Iron oxides in novel skin care formulations attenuate blue light for enhanced protection against skin damage. J Cosmet Dermatol. 2021;20:532-537.
- Duteil L, Cardot-Leccia N, Queille-Roussel C, et al. Differences in visible light-induced pigmentation according to wavelengths: a clinical and histological study in comparison with UVB exposure. Pigment Cell Melanoma Res. 2014;27:822-826.
- Ruvolo E, Fair M, Hutson A, et al. Photoprotection against visible light-induced pigmentation. Int J Cosmet Sci. 2018;40:589-595.
- Cohen L, Brodsky MA, Zubair R, et al. Cutaneous interaction with visible light: what do we know. J Am Acad Dermatol. 2020;S0190-9622(20)30551-X.
- Kaye ET, Levin JA, Blank IH, et al. Efficiency of opaque photoprotective agents in the visible light range. Arch Dermatol. 1991;127:351-355.
- Sayre RM, Kollias N, Roberts RL, et al. Physical sunscreens. J Soc Cosmet Chem. 1990;41:103-109.
- Bernstein EF, Sarkas HW, Boland P, et al. Beyond sun protection factor: an approach to environmental protection with novel mineral coatings in a vehicle containing a blend of skincare ingredients. J Cosmet Dermatol. 2020;19:407-415.
- MacLeman E. Why are iron oxides used? Deep Science website. February 10, 2022. Accessed March 22, 2022. https://thedermreview.com/iron-oxides-ci-77491-ci-77492-ci-77499/
- Zugerman C. Contact dermatitis to yellow iron oxide. Contact Dermatitis. 1985;13:107-109.
- Saxena M, Warshaw E, Ahmed DD. Eyelid allergic contact dermatitis to black iron oxide. Am J Contact Dermat. 2001;12:38-39.
- Smijs TG, Pavel S. Titanium dioxide and zinc oxide nanoparticles in sunscreens: focus on their safety and effectiveness. Nanotechnol Sci Appl. 2011;4:95-112.
- 2020 RealSelf Sun Safety Report: majority of Americans don’t use sunscreen daily. Practical Dermatology. May 6, 2020. Accessed March 22, 2022. https://practicaldermatology.com/news/realself-sun-safety-report-majority-of-americans-dont-use-sunscreen-daily
- Song H, Beckles A, Salian P, et al. Sunscreen recommendations for patients with skin of color in the popular press and in the dermatology clinic. Int J Womens Dermatol. 2020;7:165-170.
- Schneider J. The teaspoon rule of applying sunscreen. Arch Dermatol. 2002;138:838-839.
- Nelson B. How dermatology is failing melanoma patients with skin of color: unanswered questions on risk and eye-opening disparities in outcomes are weighing heavily on melanoma patients with darker skin. in this article, part 1 of a 2-part series, we explore the deadly consequences of racism and inequality in cancer care. Cancer Cytopathol. 2020;128:7-8.
Sunscreen formulations typically protect from UV radiation (290–400 nm), as this is a well-established cause of photodamage, photoaging, and skin cancer.1 However, sunlight also consists of visible (400–700 nm) and infrared (>700 nm) radiation.2 In fact, UV radiation only comprises 5% to 7% of the solar radiation that reaches the surface of the earth, while visible and infrared lights comprise 44% and 53%, respectively.3 Visible light (VL) is the only portion of the solar spectrum visible to the human eye; it penetrates the skin to a depth range of 90 to 750 µm compared to 1.5 to 90 µm for UV radiation.4 Visible light also may come from artificial sources such as light bulbs and digital screens. The rapidly increasing use of smartphones, tablets, laptops, and other digital screens that emit high levels of short-wavelength VL has increased concerns about the safety of these devices. Although blue light exposure from screens is small compared with the amount of exposure from the sun, there is concern about the long-term effects of excessive screen time. Recent studies have demonstrated that exposure to light emitted from electronic devices, even for as little as 1 hour, may cause reactive oxygen species generation, apoptosis, collagen degradation, and necrosis of skin cells.5 Visible light increases tyrosinase activity and induces immediate erythema in light-skinned individuals and long-lasting pigmentation in dark-skinned individuals.4,6
Sunscreens consist of chemical and mineral active ingredients that contain UV filters designed to absorb, scatter, and reflect UV photons with wavelengths up to 380 nm. Historically, traditional options do not protect against the effects induced by VL, as these sunscreens use nanosized particles that help to reduce the white appearance and result in transparency of the product.7 To block VL, the topical agent must be visible. Tinted sunscreens (TSs) are products that combine UV and VL filters. They give a colored base coverage that is achieved by incorporating a blend of black, red, and yellow iron oxides (IOs) and/or pigmentary titanium dioxide (PTD)(ie, titanium dioxide [TD] that is not nanosized). Because TSs offer an instant glow and protect the skin from both sun and artificial light, they have become increasingly popular and have been incorporated into makeup and skin care products to facilitate daily convenient use.
The purpose of this analysis was to study current available options and product factors that may influence consumer preference when choosing a TS based on the reviewer characteristics.
Methods
The keyword sunscreen was searched in the broader category of skin care products on an online supplier of sunscreens (www.sephora.com). This supplier was chosen because, unlike other sources, specific reviewer characteristics regarding underlying skin tone also were available. The search produced 161 results. For the purpose of this analysis, only facial TSs containing IO and/or PTD were included. Each sunscreen was checked by the authors, and 58 sunscreens that met the inclusion criteria were identified and further reviewed. Descriptive data, including formulation, sun protection factor (SPF), ingredient type (chemical or physical), pigments used, shades available, additional benefits, price range, rating, and user reviews, were gathered. The authors extracted these data from the product information on the website, manufacturer claims, ratings, and reviewer comments on each of the listed sunscreens.
For each product, the content of the top 10 most helpful positive and negative reviews as voted by consumers (1160 total reviews, consisting of 1 or more comments) was analyzed. Two authors (H.D.L.G. and P.V.) coded consumer-reported comments for positive and negative descriptors into the categories of cosmetic elegance, performance, skin compatibility and tolerance, tone compatibility, and affordability. Cosmetic elegance was defined as any feature associated with skin sensation (eg, greasy), color (eg, white cast), scent, ability to blend, and overall appearance of the product on the skin. Product performance included SPF, effectiveness in preventing sunburn, coverage, and finish claims (ie, matte, glow, invisible). Skin compatibility and tolerance were represented in the reviewers’ comments and reflected how the product performed in association with underlying dermatologic conditions, skin type, and if there were any side effects such as irritation or allergic reactions. Tone compatibility referred to TS color similarity with users’ skin and shades available for individual products. Affordability reflected consumers’ perceptions of the product price. Comments may be included in multiple categories (eg, a product was noted to blend well on the skin but did not provide enough coverage). Of entries, 10% (116/1160 reviews) were coded by first author (H.D.L.G.) to ensure internal validity. Reviewer characteristics were consistently available and were used to determine the top 5 recommended products for light-, medium-, and dark-skinned individuals based on the number of 5-star ratings in each group. Porcelain, fair, and light were considered light skin tones. Medium, tan, and olive were considered medium skin tones. Deep, dark, and ebony were considered dark skin tones.
Results
Sunscreen Characteristics—Among the 161 screened products, 58 met the inclusion criteria. Four types of formulations were included: lotion, cream, liquid, and powder. Twenty-nine (50%) were creams, followed by lotions (19%), liquids (28%), and powders (3%). More than 79% (46/58) of products had a reported SPF of 30 or higher. Sunscreens with an active physical ingredient—the minerals TD and/or zinc oxide (ZO)—were most common (33/58 [57%]), followed by the chemical sunscreens avobenzone, octinoxate, oxybenzone, homosalate, octisalate, and/or octocrylene active ingredients (14/58 [24%]), and a combination of chemical and physical sunscreens (11/58 [19%]). Nearly all products (55/58 [95%]) contained pigmentary IO (red, CI 77491; yellow, CI 77492; black, CI 77499). Notably, only 38% (22/58) of products had more than 1 shade. All products had additional claims associated with being hydrating, having antiaging effects, smoothing texture, minimizing the appearance of pores, softening lines, and/or promoting even skin tone. Traditional physical sunscreens (those containing TD and/or ZO) were more expensive than chemical sunscreens, with a median price of $30. The median review rating was 4.5 of 5 stars, with a median of 2300 customer reviews per product. Findings are summarized in Table 1.
Positive Features of Sunscreens—Based on an analysis of total reviews (N=1160), cosmetic elegance was the most cited positive feature associated with TS products (31%), followed by product performance (10%). Skin compatibility and tolerance (7%), tone compatibility (7%), and affordability (7%) were cited less commonly as positive features. When negative features were cited, consumers mostly noted tone incompatibility (16%) and cosmetic elegance concerns (14%). Product performance (13%) was comparatively cited as a negative feature (Table 1). Exemplary positive comments categorized in cosmetic elegance included the subthemes of rubs in well and natural glow. Exemplary negative comments in cosmetic elegance and tone compatibility categories included the subthemes patchy/dry finish and color mismatch. Table 1 illustrates these findings.
Product Recommendations—The top 5 recommendations of the best TS for each skin tone are listed in Table 2. The mean price of the recommended products was $42 for 1 to 1.9 oz. Laura Mercier Tinted Moisturizer Oil Free Natural Skin Perfector broad spectrum SPF 20 (Laura Mercier) was the top product for all 3 groups. Similarly, of 58 products available, the same 5 products—Laura Mercier Tinted Moisturizer Oil Free Natural Skin Perfector broad spectrum SPF 20, IT Cosmetics CC+ Cream with SPF 50 (IT Cosmetics, LLC), Tarte Amazonian Clay BB Tinted Moisturizer Broad Spectrum SPF 20 (Tarte Cosmetics), NARS Pure Radiant Tinted Moisturizer Broad Spectrum SPF 30 (NARS Cosmetics), and Laura Mercier Tinted Moisturizer Natural Skin Perfector broad spectrum SPF 30—were considered the best among consumers of all skin tones, with the addition of 2 different products (bareMinerals Original Liquid Mineral Foundation Broad Spectrum SPF 20 [bareMinerals] and ILIA Super Serum Skin Tint SPF 40 Foundation [ILIA Beauty]) in the dark skin group. Notably, these products were the only ones on Sephora’s website that offered up to 30 (22 on average) different shades.
Comment
Tone Compatibility—Tinted sunscreens were created to extend the range of photoprotection into the VL spectrum. The goal of TSs is to incorporate pigments that blend in with the natural skin tone, produce a glow, and have an aesthetically pleasing appearance. To accommodate a variety of skin colors, different shades can be obtained by mixing different amounts of yellow, red, and black IO with or without PTD. The pigments and reflective compounds provide color, opacity, and a natural coverage. Our qualitative analysis provides information on the lack of diversity among shades available for TS, especially for darker skin tones. Of the 58 products evaluated, 62% (32/58) only had 1 shade. In our cohort, tone compatibility was the most commonly cited negative feature. Of note, 89% of these comments were from consumers with dark skin tones, and there was a disproportional number of reviews by darker-skinned individuals compared to users with light and medium skin tones. This is of particular importance, as TSs have been shown to protect against dermatoses that disproportionally affect individuals with skin of color. When comparing sunscreen formulations containing IO with regular mineral sunscreens, Dumbuya et al3 found that IO-containing formulations significantly protected against VL-induced pigmentation compared with untreated skin or mineral sunscreen with SPF 50 or higher in individuals with Fitzpatrick skin type IV (P<.001). Similarly, Bernstein et al8 found that exposing patients with Fitzpatrick skin types III and IV to blue-violet light resulted in marked hyperpigmentation that lasted up to 3 months. Visible light elicits immediate and persistent pigment darkening in individuals with Fitzpatrick skin phototype III and above via the photo-oxidation of pre-existing melanin and de novo melanogenesis.9 Tinted sunscreens formulated with IO have been shown to aid in the treatment of melasma and prevent hyperpigmentation in individuals with Fitzpatrick skin types IV to VI.10 Patients with darker skin tones with dermatoses aggravated or induced by VL, such as melasma and postinflammatory hyperpigmentation, may seek photoprotection provided by TS but find the lack of matching shades unappealing. The dearth of shade diversity that matches all skin tones can lead to inequities and disproportionally affect those with darker skin.
Performance—Tinted sunscreen formulations containing IO have been proven effective in protecting against high-energy VL, especially when combined synergistically with ZO.11 Kaye et al12 found that TSs containing IO and the inorganic filters TD or ZO reduced transmittance of VL more effectively than nontinted sunscreens containing TD or ZO alone or products containing organic filters. The decreased VL transmittance in the former is due to synergistic effects of the VL-scattering properties of the TD and the VL absorption properties of the IO. Similarly, Sayre et al13 demonstrated that IO was superior to TD and ZO in attenuating the transmission of VL. Bernstein et al14 found that darker shades containing higher percentages of IO increased the attenuation of VL to 98% compared with lighter shades attenuating 93%. This correlates with the results of prior studies highlighting the potential of TSs in protecting individuals with skin of color.3 In our cohort, comments regarding product performance and protection were mostly positive, claiming that consistent use reduced hyperpigmentation on the skin surface, giving the appearance of a more even skin tone.
Tolerability—Iron oxides are minerals known to be safe, gentle, and nontoxic on the surface of the skin.15 Two case reports of contact dermatitis due to IO have been reported.16,17 Within our cohort, only a few of the comments (6%) described negative product tolerance or compatibility with their skin type. However, it is more likely that these incompatibilities were due to other ingredients in the product or the individuals’ underlying dermatologic conditions.
Cosmetic Elegance—Most of the sunscreens available on the market today contain micronized forms of TD and ZO particles because they have better cosmetic acceptability.18 However, their reduced size compromises the protection provided against VL whereby the addition of IO is of vital importance. According to the RealSelf Sun Safety Report, only 11% of Americans wear sunscreen daily, and 46% never wear sunscreen.19 The most common reasons consumers reported for not wearing sunscreen included not liking how it looks on the skin, forgetting to apply it, and/or believing that application is inconvenient and time-consuming. Currently, TSs have been incorporated into daily-life products such as makeup, moisturizers, and serums, making application for users easy and convenient, decreasing the necessity of using multiple products, and offering the opportunity to choose from different presentations to make decisions for convenience and/or diverse occasions. Products containing IO blend in with the natural skin tone and have an aesthetically pleasing cosmetic appearance. In our cohort, comments regarding cosmetic elegance were highly valued and were present in multiple reviews (45%), with 69% being positive.
Affordability—In our cohort, product price was not predominantly mentioned in consumers’ reviews. However, negative comments regarding affordability were slightly higher than the positive (56% vs 44%). Notably, the mean price of our top recommendations was $42. Higher price was associated with products with a wider range of shades available. Prior studies have found similar results demonstrating that websites with recommendations on sunscreens for patients with skin of color compared with sunscreens for white or fair skin were more likely to recommend more expensive products (median, $14/oz vs $11.3/oz) despite the lower SPF level.20 According to Schneider,21 daily use of the cheapest sunscreen on the head/neck region recommended for white/pale skin ($2/oz) would lead to an annual cost of $61 compared to $182 for darker skin ($6/oz). This showcases the considerable variation in sunscreen prices for both populations that could potentiate disparities and vulnerability in the latter group.
Conclusion
Tinted sunscreens provide both functional and cosmetic benefits and are a safe, effective, and convenient way to protect against high-energy VL. This study suggests that patients with skin of color encounter difficulties in finding matching shades in TS products. These difficulties may stem from the lack of knowledge regarding dark complexions and undertones and the lack of representation of black and brown skin that has persisted in dermatology research journals and textbooks for decades.22 Our study provides important insights to help dermatologists improve their familiarity with the brands and characteristics of TSs geared to patients with all skin tones, including skin of color. Limitations include single-retailer information and inclusion of both highly and poorly rated comments with subjective data, limiting generalizability. The limited selection of shades for darker skin poses a roadblock to proper treatment and prevention. These data represent an area for improvement within the beauty industry and the dermatologic field to deliver culturally sensitive care by being knowledgeable about darker skin tones and TS formulations tailored to people with skin of color.
Sunscreen formulations typically protect from UV radiation (290–400 nm), as this is a well-established cause of photodamage, photoaging, and skin cancer.1 However, sunlight also consists of visible (400–700 nm) and infrared (>700 nm) radiation.2 In fact, UV radiation only comprises 5% to 7% of the solar radiation that reaches the surface of the earth, while visible and infrared lights comprise 44% and 53%, respectively.3 Visible light (VL) is the only portion of the solar spectrum visible to the human eye; it penetrates the skin to a depth range of 90 to 750 µm compared to 1.5 to 90 µm for UV radiation.4 Visible light also may come from artificial sources such as light bulbs and digital screens. The rapidly increasing use of smartphones, tablets, laptops, and other digital screens that emit high levels of short-wavelength VL has increased concerns about the safety of these devices. Although blue light exposure from screens is small compared with the amount of exposure from the sun, there is concern about the long-term effects of excessive screen time. Recent studies have demonstrated that exposure to light emitted from electronic devices, even for as little as 1 hour, may cause reactive oxygen species generation, apoptosis, collagen degradation, and necrosis of skin cells.5 Visible light increases tyrosinase activity and induces immediate erythema in light-skinned individuals and long-lasting pigmentation in dark-skinned individuals.4,6
Sunscreens consist of chemical and mineral active ingredients that contain UV filters designed to absorb, scatter, and reflect UV photons with wavelengths up to 380 nm. Historically, traditional options do not protect against the effects induced by VL, as these sunscreens use nanosized particles that help to reduce the white appearance and result in transparency of the product.7 To block VL, the topical agent must be visible. Tinted sunscreens (TSs) are products that combine UV and VL filters. They give a colored base coverage that is achieved by incorporating a blend of black, red, and yellow iron oxides (IOs) and/or pigmentary titanium dioxide (PTD)(ie, titanium dioxide [TD] that is not nanosized). Because TSs offer an instant glow and protect the skin from both sun and artificial light, they have become increasingly popular and have been incorporated into makeup and skin care products to facilitate daily convenient use.
The purpose of this analysis was to study current available options and product factors that may influence consumer preference when choosing a TS based on the reviewer characteristics.
Methods
The keyword sunscreen was searched in the broader category of skin care products on an online supplier of sunscreens (www.sephora.com). This supplier was chosen because, unlike other sources, specific reviewer characteristics regarding underlying skin tone also were available. The search produced 161 results. For the purpose of this analysis, only facial TSs containing IO and/or PTD were included. Each sunscreen was checked by the authors, and 58 sunscreens that met the inclusion criteria were identified and further reviewed. Descriptive data, including formulation, sun protection factor (SPF), ingredient type (chemical or physical), pigments used, shades available, additional benefits, price range, rating, and user reviews, were gathered. The authors extracted these data from the product information on the website, manufacturer claims, ratings, and reviewer comments on each of the listed sunscreens.
For each product, the content of the top 10 most helpful positive and negative reviews as voted by consumers (1160 total reviews, consisting of 1 or more comments) was analyzed. Two authors (H.D.L.G. and P.V.) coded consumer-reported comments for positive and negative descriptors into the categories of cosmetic elegance, performance, skin compatibility and tolerance, tone compatibility, and affordability. Cosmetic elegance was defined as any feature associated with skin sensation (eg, greasy), color (eg, white cast), scent, ability to blend, and overall appearance of the product on the skin. Product performance included SPF, effectiveness in preventing sunburn, coverage, and finish claims (ie, matte, glow, invisible). Skin compatibility and tolerance were represented in the reviewers’ comments and reflected how the product performed in association with underlying dermatologic conditions, skin type, and if there were any side effects such as irritation or allergic reactions. Tone compatibility referred to TS color similarity with users’ skin and shades available for individual products. Affordability reflected consumers’ perceptions of the product price. Comments may be included in multiple categories (eg, a product was noted to blend well on the skin but did not provide enough coverage). Of entries, 10% (116/1160 reviews) were coded by first author (H.D.L.G.) to ensure internal validity. Reviewer characteristics were consistently available and were used to determine the top 5 recommended products for light-, medium-, and dark-skinned individuals based on the number of 5-star ratings in each group. Porcelain, fair, and light were considered light skin tones. Medium, tan, and olive were considered medium skin tones. Deep, dark, and ebony were considered dark skin tones.
Results
Sunscreen Characteristics—Among the 161 screened products, 58 met the inclusion criteria. Four types of formulations were included: lotion, cream, liquid, and powder. Twenty-nine (50%) were creams, followed by lotions (19%), liquids (28%), and powders (3%). More than 79% (46/58) of products had a reported SPF of 30 or higher. Sunscreens with an active physical ingredient—the minerals TD and/or zinc oxide (ZO)—were most common (33/58 [57%]), followed by the chemical sunscreens avobenzone, octinoxate, oxybenzone, homosalate, octisalate, and/or octocrylene active ingredients (14/58 [24%]), and a combination of chemical and physical sunscreens (11/58 [19%]). Nearly all products (55/58 [95%]) contained pigmentary IO (red, CI 77491; yellow, CI 77492; black, CI 77499). Notably, only 38% (22/58) of products had more than 1 shade. All products had additional claims associated with being hydrating, having antiaging effects, smoothing texture, minimizing the appearance of pores, softening lines, and/or promoting even skin tone. Traditional physical sunscreens (those containing TD and/or ZO) were more expensive than chemical sunscreens, with a median price of $30. The median review rating was 4.5 of 5 stars, with a median of 2300 customer reviews per product. Findings are summarized in Table 1.
Positive Features of Sunscreens—Based on an analysis of total reviews (N=1160), cosmetic elegance was the most cited positive feature associated with TS products (31%), followed by product performance (10%). Skin compatibility and tolerance (7%), tone compatibility (7%), and affordability (7%) were cited less commonly as positive features. When negative features were cited, consumers mostly noted tone incompatibility (16%) and cosmetic elegance concerns (14%). Product performance (13%) was comparatively cited as a negative feature (Table 1). Exemplary positive comments categorized in cosmetic elegance included the subthemes of rubs in well and natural glow. Exemplary negative comments in cosmetic elegance and tone compatibility categories included the subthemes patchy/dry finish and color mismatch. Table 1 illustrates these findings.
Product Recommendations—The top 5 recommendations of the best TS for each skin tone are listed in Table 2. The mean price of the recommended products was $42 for 1 to 1.9 oz. Laura Mercier Tinted Moisturizer Oil Free Natural Skin Perfector broad spectrum SPF 20 (Laura Mercier) was the top product for all 3 groups. Similarly, of 58 products available, the same 5 products—Laura Mercier Tinted Moisturizer Oil Free Natural Skin Perfector broad spectrum SPF 20, IT Cosmetics CC+ Cream with SPF 50 (IT Cosmetics, LLC), Tarte Amazonian Clay BB Tinted Moisturizer Broad Spectrum SPF 20 (Tarte Cosmetics), NARS Pure Radiant Tinted Moisturizer Broad Spectrum SPF 30 (NARS Cosmetics), and Laura Mercier Tinted Moisturizer Natural Skin Perfector broad spectrum SPF 30—were considered the best among consumers of all skin tones, with the addition of 2 different products (bareMinerals Original Liquid Mineral Foundation Broad Spectrum SPF 20 [bareMinerals] and ILIA Super Serum Skin Tint SPF 40 Foundation [ILIA Beauty]) in the dark skin group. Notably, these products were the only ones on Sephora’s website that offered up to 30 (22 on average) different shades.
Comment
Tone Compatibility—Tinted sunscreens were created to extend the range of photoprotection into the VL spectrum. The goal of TSs is to incorporate pigments that blend in with the natural skin tone, produce a glow, and have an aesthetically pleasing appearance. To accommodate a variety of skin colors, different shades can be obtained by mixing different amounts of yellow, red, and black IO with or without PTD. The pigments and reflective compounds provide color, opacity, and a natural coverage. Our qualitative analysis provides information on the lack of diversity among shades available for TS, especially for darker skin tones. Of the 58 products evaluated, 62% (32/58) only had 1 shade. In our cohort, tone compatibility was the most commonly cited negative feature. Of note, 89% of these comments were from consumers with dark skin tones, and there was a disproportional number of reviews by darker-skinned individuals compared to users with light and medium skin tones. This is of particular importance, as TSs have been shown to protect against dermatoses that disproportionally affect individuals with skin of color. When comparing sunscreen formulations containing IO with regular mineral sunscreens, Dumbuya et al3 found that IO-containing formulations significantly protected against VL-induced pigmentation compared with untreated skin or mineral sunscreen with SPF 50 or higher in individuals with Fitzpatrick skin type IV (P<.001). Similarly, Bernstein et al8 found that exposing patients with Fitzpatrick skin types III and IV to blue-violet light resulted in marked hyperpigmentation that lasted up to 3 months. Visible light elicits immediate and persistent pigment darkening in individuals with Fitzpatrick skin phototype III and above via the photo-oxidation of pre-existing melanin and de novo melanogenesis.9 Tinted sunscreens formulated with IO have been shown to aid in the treatment of melasma and prevent hyperpigmentation in individuals with Fitzpatrick skin types IV to VI.10 Patients with darker skin tones with dermatoses aggravated or induced by VL, such as melasma and postinflammatory hyperpigmentation, may seek photoprotection provided by TS but find the lack of matching shades unappealing. The dearth of shade diversity that matches all skin tones can lead to inequities and disproportionally affect those with darker skin.
Performance—Tinted sunscreen formulations containing IO have been proven effective in protecting against high-energy VL, especially when combined synergistically with ZO.11 Kaye et al12 found that TSs containing IO and the inorganic filters TD or ZO reduced transmittance of VL more effectively than nontinted sunscreens containing TD or ZO alone or products containing organic filters. The decreased VL transmittance in the former is due to synergistic effects of the VL-scattering properties of the TD and the VL absorption properties of the IO. Similarly, Sayre et al13 demonstrated that IO was superior to TD and ZO in attenuating the transmission of VL. Bernstein et al14 found that darker shades containing higher percentages of IO increased the attenuation of VL to 98% compared with lighter shades attenuating 93%. This correlates with the results of prior studies highlighting the potential of TSs in protecting individuals with skin of color.3 In our cohort, comments regarding product performance and protection were mostly positive, claiming that consistent use reduced hyperpigmentation on the skin surface, giving the appearance of a more even skin tone.
Tolerability—Iron oxides are minerals known to be safe, gentle, and nontoxic on the surface of the skin.15 Two case reports of contact dermatitis due to IO have been reported.16,17 Within our cohort, only a few of the comments (6%) described negative product tolerance or compatibility with their skin type. However, it is more likely that these incompatibilities were due to other ingredients in the product or the individuals’ underlying dermatologic conditions.
Cosmetic Elegance—Most of the sunscreens available on the market today contain micronized forms of TD and ZO particles because they have better cosmetic acceptability.18 However, their reduced size compromises the protection provided against VL whereby the addition of IO is of vital importance. According to the RealSelf Sun Safety Report, only 11% of Americans wear sunscreen daily, and 46% never wear sunscreen.19 The most common reasons consumers reported for not wearing sunscreen included not liking how it looks on the skin, forgetting to apply it, and/or believing that application is inconvenient and time-consuming. Currently, TSs have been incorporated into daily-life products such as makeup, moisturizers, and serums, making application for users easy and convenient, decreasing the necessity of using multiple products, and offering the opportunity to choose from different presentations to make decisions for convenience and/or diverse occasions. Products containing IO blend in with the natural skin tone and have an aesthetically pleasing cosmetic appearance. In our cohort, comments regarding cosmetic elegance were highly valued and were present in multiple reviews (45%), with 69% being positive.
Affordability—In our cohort, product price was not predominantly mentioned in consumers’ reviews. However, negative comments regarding affordability were slightly higher than the positive (56% vs 44%). Notably, the mean price of our top recommendations was $42. Higher price was associated with products with a wider range of shades available. Prior studies have found similar results demonstrating that websites with recommendations on sunscreens for patients with skin of color compared with sunscreens for white or fair skin were more likely to recommend more expensive products (median, $14/oz vs $11.3/oz) despite the lower SPF level.20 According to Schneider,21 daily use of the cheapest sunscreen on the head/neck region recommended for white/pale skin ($2/oz) would lead to an annual cost of $61 compared to $182 for darker skin ($6/oz). This showcases the considerable variation in sunscreen prices for both populations that could potentiate disparities and vulnerability in the latter group.
Conclusion
Tinted sunscreens provide both functional and cosmetic benefits and are a safe, effective, and convenient way to protect against high-energy VL. This study suggests that patients with skin of color encounter difficulties in finding matching shades in TS products. These difficulties may stem from the lack of knowledge regarding dark complexions and undertones and the lack of representation of black and brown skin that has persisted in dermatology research journals and textbooks for decades.22 Our study provides important insights to help dermatologists improve their familiarity with the brands and characteristics of TSs geared to patients with all skin tones, including skin of color. Limitations include single-retailer information and inclusion of both highly and poorly rated comments with subjective data, limiting generalizability. The limited selection of shades for darker skin poses a roadblock to proper treatment and prevention. These data represent an area for improvement within the beauty industry and the dermatologic field to deliver culturally sensitive care by being knowledgeable about darker skin tones and TS formulations tailored to people with skin of color.
- McDaniel D, Farris P, Valacchi G. Atmospheric skin aging-contributors and inhibitors. J Cosmet Dermatol. 2018;17:124-137.
- Duteil L, Cardot-Leccia N, Queille-Roussel C, et al. Differences in visible light-induced pigmentation according to wavelengths: a clinical and histological study in comparison with UVB exposure. Pigment Cell Melanoma Res. 2014;27:822-826.
- Dumbuya H, Grimes PE, Lynch S, et al. Impact of iron-oxide containing formulations against visible light-induced skin pigmentation in skin of color individuals. J Drugs Dermatol. 2020;19:712-717.
- Lyons AB, Trullas C, Kohli I, et al. Photoprotection beyond ultraviolet radiation: a review of tinted sunscreens. J Am Acad Dermatol. 2021;84:1393-1397.
- Austin E, Huang A, Adar T, et al. Electronic device generated light increases reactive oxygen species in human fibroblasts [published online February 5, 2018]. Lasers Surg Med. doi:10.1002/lsm.22794
- Randhawa M, Seo I, Liebel F, et al. Visible light induces melanogenesis in human skin through a photoadaptive response. PLoS One. 2015;10:e0130949.
- Yeager DG, Lim HW. What’s new in photoprotection: a review of new concepts and controversies. Dermatol Clin. 2019;37:149-157.
- Bernstein EF, Sarkas HW, Boland P. Iron oxides in novel skin care formulations attenuate blue light for enhanced protection against skin damage. J Cosmet Dermatol. 2021;20:532-537.
- Duteil L, Cardot-Leccia N, Queille-Roussel C, et al. Differences in visible light-induced pigmentation according to wavelengths: a clinical and histological study in comparison with UVB exposure. Pigment Cell Melanoma Res. 2014;27:822-826.
- Ruvolo E, Fair M, Hutson A, et al. Photoprotection against visible light-induced pigmentation. Int J Cosmet Sci. 2018;40:589-595.
- Cohen L, Brodsky MA, Zubair R, et al. Cutaneous interaction with visible light: what do we know. J Am Acad Dermatol. 2020;S0190-9622(20)30551-X.
- Kaye ET, Levin JA, Blank IH, et al. Efficiency of opaque photoprotective agents in the visible light range. Arch Dermatol. 1991;127:351-355.
- Sayre RM, Kollias N, Roberts RL, et al. Physical sunscreens. J Soc Cosmet Chem. 1990;41:103-109.
- Bernstein EF, Sarkas HW, Boland P, et al. Beyond sun protection factor: an approach to environmental protection with novel mineral coatings in a vehicle containing a blend of skincare ingredients. J Cosmet Dermatol. 2020;19:407-415.
- MacLeman E. Why are iron oxides used? Deep Science website. February 10, 2022. Accessed March 22, 2022. https://thedermreview.com/iron-oxides-ci-77491-ci-77492-ci-77499/
- Zugerman C. Contact dermatitis to yellow iron oxide. Contact Dermatitis. 1985;13:107-109.
- Saxena M, Warshaw E, Ahmed DD. Eyelid allergic contact dermatitis to black iron oxide. Am J Contact Dermat. 2001;12:38-39.
- Smijs TG, Pavel S. Titanium dioxide and zinc oxide nanoparticles in sunscreens: focus on their safety and effectiveness. Nanotechnol Sci Appl. 2011;4:95-112.
- 2020 RealSelf Sun Safety Report: majority of Americans don’t use sunscreen daily. Practical Dermatology. May 6, 2020. Accessed March 22, 2022. https://practicaldermatology.com/news/realself-sun-safety-report-majority-of-americans-dont-use-sunscreen-daily
- Song H, Beckles A, Salian P, et al. Sunscreen recommendations for patients with skin of color in the popular press and in the dermatology clinic. Int J Womens Dermatol. 2020;7:165-170.
- Schneider J. The teaspoon rule of applying sunscreen. Arch Dermatol. 2002;138:838-839.
- Nelson B. How dermatology is failing melanoma patients with skin of color: unanswered questions on risk and eye-opening disparities in outcomes are weighing heavily on melanoma patients with darker skin. in this article, part 1 of a 2-part series, we explore the deadly consequences of racism and inequality in cancer care. Cancer Cytopathol. 2020;128:7-8.
- McDaniel D, Farris P, Valacchi G. Atmospheric skin aging-contributors and inhibitors. J Cosmet Dermatol. 2018;17:124-137.
- Duteil L, Cardot-Leccia N, Queille-Roussel C, et al. Differences in visible light-induced pigmentation according to wavelengths: a clinical and histological study in comparison with UVB exposure. Pigment Cell Melanoma Res. 2014;27:822-826.
- Dumbuya H, Grimes PE, Lynch S, et al. Impact of iron-oxide containing formulations against visible light-induced skin pigmentation in skin of color individuals. J Drugs Dermatol. 2020;19:712-717.
- Lyons AB, Trullas C, Kohli I, et al. Photoprotection beyond ultraviolet radiation: a review of tinted sunscreens. J Am Acad Dermatol. 2021;84:1393-1397.
- Austin E, Huang A, Adar T, et al. Electronic device generated light increases reactive oxygen species in human fibroblasts [published online February 5, 2018]. Lasers Surg Med. doi:10.1002/lsm.22794
- Randhawa M, Seo I, Liebel F, et al. Visible light induces melanogenesis in human skin through a photoadaptive response. PLoS One. 2015;10:e0130949.
- Yeager DG, Lim HW. What’s new in photoprotection: a review of new concepts and controversies. Dermatol Clin. 2019;37:149-157.
- Bernstein EF, Sarkas HW, Boland P. Iron oxides in novel skin care formulations attenuate blue light for enhanced protection against skin damage. J Cosmet Dermatol. 2021;20:532-537.
- Duteil L, Cardot-Leccia N, Queille-Roussel C, et al. Differences in visible light-induced pigmentation according to wavelengths: a clinical and histological study in comparison with UVB exposure. Pigment Cell Melanoma Res. 2014;27:822-826.
- Ruvolo E, Fair M, Hutson A, et al. Photoprotection against visible light-induced pigmentation. Int J Cosmet Sci. 2018;40:589-595.
- Cohen L, Brodsky MA, Zubair R, et al. Cutaneous interaction with visible light: what do we know. J Am Acad Dermatol. 2020;S0190-9622(20)30551-X.
- Kaye ET, Levin JA, Blank IH, et al. Efficiency of opaque photoprotective agents in the visible light range. Arch Dermatol. 1991;127:351-355.
- Sayre RM, Kollias N, Roberts RL, et al. Physical sunscreens. J Soc Cosmet Chem. 1990;41:103-109.
- Bernstein EF, Sarkas HW, Boland P, et al. Beyond sun protection factor: an approach to environmental protection with novel mineral coatings in a vehicle containing a blend of skincare ingredients. J Cosmet Dermatol. 2020;19:407-415.
- MacLeman E. Why are iron oxides used? Deep Science website. February 10, 2022. Accessed March 22, 2022. https://thedermreview.com/iron-oxides-ci-77491-ci-77492-ci-77499/
- Zugerman C. Contact dermatitis to yellow iron oxide. Contact Dermatitis. 1985;13:107-109.
- Saxena M, Warshaw E, Ahmed DD. Eyelid allergic contact dermatitis to black iron oxide. Am J Contact Dermat. 2001;12:38-39.
- Smijs TG, Pavel S. Titanium dioxide and zinc oxide nanoparticles in sunscreens: focus on their safety and effectiveness. Nanotechnol Sci Appl. 2011;4:95-112.
- 2020 RealSelf Sun Safety Report: majority of Americans don’t use sunscreen daily. Practical Dermatology. May 6, 2020. Accessed March 22, 2022. https://practicaldermatology.com/news/realself-sun-safety-report-majority-of-americans-dont-use-sunscreen-daily
- Song H, Beckles A, Salian P, et al. Sunscreen recommendations for patients with skin of color in the popular press and in the dermatology clinic. Int J Womens Dermatol. 2020;7:165-170.
- Schneider J. The teaspoon rule of applying sunscreen. Arch Dermatol. 2002;138:838-839.
- Nelson B. How dermatology is failing melanoma patients with skin of color: unanswered questions on risk and eye-opening disparities in outcomes are weighing heavily on melanoma patients with darker skin. in this article, part 1 of a 2-part series, we explore the deadly consequences of racism and inequality in cancer care. Cancer Cytopathol. 2020;128:7-8.
Practice Points
- Visible light has been shown to increase tyrosinase activity and induce immediate erythema in light-skinned individuals and long-lasting pigmentation in dark-skinned individuals.
- The formulation of sunscreens with iron oxides and pigmentary titanium dioxide are a safe and effective way to protect against high-energy visible light, especially when combined with zinc oxide.
- Physicians should be aware of sunscreen characteristics that patients like and dislike to tailor recommendations that are appropriate for each individual to enhance adherence.
- Cosmetic elegance and tone compatibility are the most important criteria for individuals seeking tinted sunscreens.