Commentary

Clinicians in pediatrics have noticed a troubling pattern emerge during the pandemic, something that is darkly referred to as “the COVID 19,” or the 19 or more pounds that many of our patients have gained in the past year. This phenomenon has underscored many maxims in pediatric weight management: Mainly that frequent snacking, decreased physical activity, and less parental supervision lead to increased weight gain. But could we be missing another lesson this trend is teaching us? What about the relationship between catastrophe and childhood obesity?

Beyond the increased weight gain with lockdowns, I have observed other evidence in my own practice that childhood trauma or adverse experiences increase obesity. Our electronic medical record system gives an alert when a chart with sensitive information is accessed. One example might be if the patient had been seen at a clinic for children who have been abused. I am heartbroken at how often this happens. Academically, I understand the dire statistics about the incidence of child abuse, but the frequency at which I see this pattern is jarring.

Over the years, one striking correlation became clear among my patient population: Children with obesity were more likely to have been seen in the child abuse clinic than normal-weight peers.

I am far from the only one to have observed this relationship. Television shows focusing on severe obesity, such as “My 600-Pound Life,” often show trauma as both a cause and effect of severe obesity. This theme also became apparent on the show “The Biggest Loser,” which highlighted the difficulty of achieving and maintaining substantial weight loss. If even Hollywood has noticed this association, shouldn’t we be much farther ahead?
 

Pathways to obesity

Adverse childhood experiences (ACE) encompass various causes of child trauma, including abuse or neglect; poverty; household or neighborhood violence; and death, illness, or incarceration of a parent. A pivotal report in 1998 formalized the suspicion that many of us could plainly see: People who suffered ACE have higher incidence of heart disease, COPD, liver disease, incarceration, and drug abuse. For those with six or more ACE, life expectancy averaged 20 years less than those who had none. More recently, a meta-analysis found an odds ratio of 1.46 for adult obesity with known history of childhood trauma.

As a pediatric endocrinologist living in the poorest state of the country, I have clearly observed the correlation between childhood obesity and poverty. While prior generations may have associated child poverty with malnutrition and starvation, we are seeing in modern times that obesity has become a disease of lack. Calorie-dense and processed foods tend to be less expensive, more shelf-stable, and more accessible to people living in both urban and rural food deserts.

I am also a foster mother and have received extensive training in parenting children who have lived through trauma and neglect. For children who have endured food scarcity and deprivation, hoarding food and overeating are expected responses.

But the pathways to abnormal weight gain are myriad and expand beyond binge eating or numbing with food. ACE are particularly troubling because they affect developing brains and the neuroendocrine system; they alter epigenetics and cause heritable changes. Structural brain differences have been evident in the frontopolar cortex, which is linked to centers in the hypothalamus that control appetite. And increased stress raises cortisol release, increases insulin resistance, and alters satiety.
 

Shifting our approach to treatment

The significant cost of ACE is enormous and affects us all. Health professionals in pediatrics must understand these connections to effectively counsel children and their families dealing with obesity. Handing someone a diet plan and lecturing them about weight loss is never effective, but this common tactic is especially cruel if we do not assess for and address underlying pain. Obviously, blame and shame are ineffective motivators for lifestyle change in any circumstance, but these tactics may be especially harmful in the light of childhood trauma.

Screening for ACE is important in every aspect of pediatric care. The presence of obesity, however, should remind us to be more sensitive to the possibility of causative trauma. Clinicians for adults are not off the hook either. Fully 60% of adults suffered ACE and are dealing with the aftermath.

To improve health outcomes across the board, we must screen for trauma and become educated on trauma-informed care. Perhaps the most important first referral for a child suffering ACE and obesity is to a trained counselor or a social worker. Shepherding children through trauma will be more effective for attaining healthy weight than any remedy I can prescribe as an endocrinologist. Furthermore, this is our necessary role as healers. More than ever, we need to approach chronic diseases, including obesity, with the utmost compassion.

A version of this article first appeared on Medscape.com.

Clinicians in pediatrics have noticed a troubling pattern emerge during the pandemic, something that is darkly referred to as “the COVID 19,” or the 19 or more pounds that many of our patients have gained in the past year. This phenomenon has underscored many maxims in pediatric weight management: Mainly that frequent snacking, decreased physical activity, and less parental supervision lead to increased weight gain. But could we be missing another lesson this trend is teaching us? What about the relationship between catastrophe and childhood obesity?

Beyond the increased weight gain with lockdowns, I have observed other evidence in my own practice that childhood trauma or adverse experiences increase obesity. Our electronic medical record system gives an alert when a chart with sensitive information is accessed. One example might be if the patient had been seen at a clinic for children who have been abused. I am heartbroken at how often this happens. Academically, I understand the dire statistics about the incidence of child abuse, but the frequency at which I see this pattern is jarring.

Over the years, one striking correlation became clear among my patient population: Children with obesity were more likely to have been seen in the child abuse clinic than normal-weight peers.

I am far from the only one to have observed this relationship. Television shows focusing on severe obesity, such as “My 600-Pound Life,” often show trauma as both a cause and effect of severe obesity. This theme also became apparent on the show “The Biggest Loser,” which highlighted the difficulty of achieving and maintaining substantial weight loss. If even Hollywood has noticed this association, shouldn’t we be much farther ahead?
 

Pathways to obesity

Adverse childhood experiences (ACE) encompass various causes of child trauma, including abuse or neglect; poverty; household or neighborhood violence; and death, illness, or incarceration of a parent. A pivotal report in 1998 formalized the suspicion that many of us could plainly see: People who suffered ACE have higher incidence of heart disease, COPD, liver disease, incarceration, and drug abuse. For those with six or more ACE, life expectancy averaged 20 years less than those who had none. More recently, a meta-analysis found an odds ratio of 1.46 for adult obesity with known history of childhood trauma.

As a pediatric endocrinologist living in the poorest state of the country, I have clearly observed the correlation between childhood obesity and poverty. While prior generations may have associated child poverty with malnutrition and starvation, we are seeing in modern times that obesity has become a disease of lack. Calorie-dense and processed foods tend to be less expensive, more shelf-stable, and more accessible to people living in both urban and rural food deserts.

I am also a foster mother and have received extensive training in parenting children who have lived through trauma and neglect. For children who have endured food scarcity and deprivation, hoarding food and overeating are expected responses.

But the pathways to abnormal weight gain are myriad and expand beyond binge eating or numbing with food. ACE are particularly troubling because they affect developing brains and the neuroendocrine system; they alter epigenetics and cause heritable changes. Structural brain differences have been evident in the frontopolar cortex, which is linked to centers in the hypothalamus that control appetite. And increased stress raises cortisol release, increases insulin resistance, and alters satiety.
 

Shifting our approach to treatment

The significant cost of ACE is enormous and affects us all. Health professionals in pediatrics must understand these connections to effectively counsel children and their families dealing with obesity. Handing someone a diet plan and lecturing them about weight loss is never effective, but this common tactic is especially cruel if we do not assess for and address underlying pain. Obviously, blame and shame are ineffective motivators for lifestyle change in any circumstance, but these tactics may be especially harmful in the light of childhood trauma.

Screening for ACE is important in every aspect of pediatric care. The presence of obesity, however, should remind us to be more sensitive to the possibility of causative trauma. Clinicians for adults are not off the hook either. Fully 60% of adults suffered ACE and are dealing with the aftermath.

To improve health outcomes across the board, we must screen for trauma and become educated on trauma-informed care. Perhaps the most important first referral for a child suffering ACE and obesity is to a trained counselor or a social worker. Shepherding children through trauma will be more effective for attaining healthy weight than any remedy I can prescribe as an endocrinologist. Furthermore, this is our necessary role as healers. More than ever, we need to approach chronic diseases, including obesity, with the utmost compassion.

A version of this article first appeared on Medscape.com.

Clinicians in pediatrics have noticed a troubling pattern emerge during the pandemic, something that is darkly referred to as “the COVID 19,” or the 19 or more pounds that many of our patients have gained in the past year. This phenomenon has underscored many maxims in pediatric weight management: Mainly that frequent snacking, decreased physical activity, and less parental supervision lead to increased weight gain. But could we be missing another lesson this trend is teaching us? What about the relationship between catastrophe and childhood obesity?

Beyond the increased weight gain with lockdowns, I have observed other evidence in my own practice that childhood trauma or adverse experiences increase obesity. Our electronic medical record system gives an alert when a chart with sensitive information is accessed. One example might be if the patient had been seen at a clinic for children who have been abused. I am heartbroken at how often this happens. Academically, I understand the dire statistics about the incidence of child abuse, but the frequency at which I see this pattern is jarring.

Over the years, one striking correlation became clear among my patient population: Children with obesity were more likely to have been seen in the child abuse clinic than normal-weight peers.

I am far from the only one to have observed this relationship. Television shows focusing on severe obesity, such as “My 600-Pound Life,” often show trauma as both a cause and effect of severe obesity. This theme also became apparent on the show “The Biggest Loser,” which highlighted the difficulty of achieving and maintaining substantial weight loss. If even Hollywood has noticed this association, shouldn’t we be much farther ahead?
 

Pathways to obesity

Adverse childhood experiences (ACE) encompass various causes of child trauma, including abuse or neglect; poverty; household or neighborhood violence; and death, illness, or incarceration of a parent. A pivotal report in 1998 formalized the suspicion that many of us could plainly see: People who suffered ACE have higher incidence of heart disease, COPD, liver disease, incarceration, and drug abuse. For those with six or more ACE, life expectancy averaged 20 years less than those who had none. More recently, a meta-analysis found an odds ratio of 1.46 for adult obesity with known history of childhood trauma.

As a pediatric endocrinologist living in the poorest state of the country, I have clearly observed the correlation between childhood obesity and poverty. While prior generations may have associated child poverty with malnutrition and starvation, we are seeing in modern times that obesity has become a disease of lack. Calorie-dense and processed foods tend to be less expensive, more shelf-stable, and more accessible to people living in both urban and rural food deserts.

I am also a foster mother and have received extensive training in parenting children who have lived through trauma and neglect. For children who have endured food scarcity and deprivation, hoarding food and overeating are expected responses.

But the pathways to abnormal weight gain are myriad and expand beyond binge eating or numbing with food. ACE are particularly troubling because they affect developing brains and the neuroendocrine system; they alter epigenetics and cause heritable changes. Structural brain differences have been evident in the frontopolar cortex, which is linked to centers in the hypothalamus that control appetite. And increased stress raises cortisol release, increases insulin resistance, and alters satiety.
 

Shifting our approach to treatment

The significant cost of ACE is enormous and affects us all. Health professionals in pediatrics must understand these connections to effectively counsel children and their families dealing with obesity. Handing someone a diet plan and lecturing them about weight loss is never effective, but this common tactic is especially cruel if we do not assess for and address underlying pain. Obviously, blame and shame are ineffective motivators for lifestyle change in any circumstance, but these tactics may be especially harmful in the light of childhood trauma.

Screening for ACE is important in every aspect of pediatric care. The presence of obesity, however, should remind us to be more sensitive to the possibility of causative trauma. Clinicians for adults are not off the hook either. Fully 60% of adults suffered ACE and are dealing with the aftermath.

To improve health outcomes across the board, we must screen for trauma and become educated on trauma-informed care. Perhaps the most important first referral for a child suffering ACE and obesity is to a trained counselor or a social worker. Shepherding children through trauma will be more effective for attaining healthy weight than any remedy I can prescribe as an endocrinologist. Furthermore, this is our necessary role as healers. More than ever, we need to approach chronic diseases, including obesity, with the utmost compassion.

A version of this article first appeared on Medscape.com.

It’s been more than a year since we came face to face with an unprecedented, unrelenting pandemic. Determined to overcome, determined to forge ahead, we worked tirelessly.

Drazen Zigic/Getty Images

Hours upon hours, days upon days, months upon months. Hoping for recovery while facing the devastation of death. We were praised, and lauded as heroes as we pleaded for essential protective gear and urged our communities to think critically, act responsibly, and distance safely. From the cities to small towns, we answered the call. Leaving long-practiced specialties, reassigned from our practices and training, we worked together uncertain of the future, but committed to safeguarding our present. Through sacrifice we toiled, leaving our families to protect against contagion, wading through halls of the sick and fighting against the threat of death.

Beginning at the beginning

Addressing these issues starts with training. As a new cohort of eager students enters medical/osteopathic school, the focus should lie not only on foundations of medicine and brute memorization of copious information but also on self-care, wellness checks, and group morale. The same emphasis placed upon patient care and advocacy must also be extended toward ensuring that the next generation of physicians will understand the importance of caring for themselves as much as they care for others.

In the same manner, past stereotypes of ruthless, cut-throat, competition must also evolve. Although the spirit of hard work and perseverance is essential, the manner it propagates is just as important. Aggressive questioning, myriad testing, rigid hierarchies, blind obedience, and ego inflation may separate the pack, but it also reinforces individualism and isolation. Students may shield their internal turmoil behind a mask. The mask of the Super Doctor.

However, as the pandemic has shown, even the most durable of masks will eventually fail. So how do we recognize and accept that help is needed? How do we access support? First, it is vital to acknowledge that there is no shame in asking for help. It is both surprising and reassuring that many of us have been there, an unspoken band of brothers and sisters. Second, remember the acronym for depressive symptoms SIGECAPS (sleep, interest, guilt, energy, concentration, appetite, psychomotor, suicide). Remember that these symptoms may develop gradually or feel sudden and overwhelming. Know that mood lability, tearfulness, and isolation may also be present but confused and disregarded as normal consequences of school, residency, or life as a physician. Third, recognize common behavioral changes associated with anxiety, such as irritability, avoidance, and physical symptoms, including headache, muscle aches, joint pain, GI discomfort, palpitations, and insomnia. Last, reach out to colleagues who have suddenly or gradually withdrawn. Schedule frequent check-ins for one another and do not be afraid to admit that you are human. There is no shame in vulnerability but there is bravery and strength.

If you are in school or residency training, reach out to health centers, training directors, supervisors, family and/or friends. Whether you are an early career physician or amid a decades-long career, connect with your peers, reach out to junior members, offer and accept support. Anonymous hotlines, listservs, email groups, virtual meetings, texts, and phone calls also provide opportunities for wellness checks, pep talks, or venting sessions. All are important. In the case where more specialized help is needed, contact your primary care physician, reach out to colleagues in mental health, contact the Suicide Prevention Lifeline at 1-800 273-8255. Know there is help; you are not alone.

In these unprecedented and uncertain times, remember the African proverb “It takes a village.” To ask for help reveals strength and fortitude. The more we advocate for ourselves and one another, the more we will prevail and shed the myth of infallibility.

Dr. Thomas is a board-certified adult psychiatrist with an interest in chronic illness, women’s behavioral health, and minority mental health. She currently practices in North Kingstown and East Providence, R.I. She has no conflicts of interest.

It’s been more than a year since we came face to face with an unprecedented, unrelenting pandemic. Determined to overcome, determined to forge ahead, we worked tirelessly.

Drazen Zigic/Getty Images

Hours upon hours, days upon days, months upon months. Hoping for recovery while facing the devastation of death. We were praised, and lauded as heroes as we pleaded for essential protective gear and urged our communities to think critically, act responsibly, and distance safely. From the cities to small towns, we answered the call. Leaving long-practiced specialties, reassigned from our practices and training, we worked together uncertain of the future, but committed to safeguarding our present. Through sacrifice we toiled, leaving our families to protect against contagion, wading through halls of the sick and fighting against the threat of death.

Beginning at the beginning

Addressing these issues starts with training. As a new cohort of eager students enters medical/osteopathic school, the focus should lie not only on foundations of medicine and brute memorization of copious information but also on self-care, wellness checks, and group morale. The same emphasis placed upon patient care and advocacy must also be extended toward ensuring that the next generation of physicians will understand the importance of caring for themselves as much as they care for others.

In the same manner, past stereotypes of ruthless, cut-throat, competition must also evolve. Although the spirit of hard work and perseverance is essential, the manner it propagates is just as important. Aggressive questioning, myriad testing, rigid hierarchies, blind obedience, and ego inflation may separate the pack, but it also reinforces individualism and isolation. Students may shield their internal turmoil behind a mask. The mask of the Super Doctor.

However, as the pandemic has shown, even the most durable of masks will eventually fail. So how do we recognize and accept that help is needed? How do we access support? First, it is vital to acknowledge that there is no shame in asking for help. It is both surprising and reassuring that many of us have been there, an unspoken band of brothers and sisters. Second, remember the acronym for depressive symptoms SIGECAPS (sleep, interest, guilt, energy, concentration, appetite, psychomotor, suicide). Remember that these symptoms may develop gradually or feel sudden and overwhelming. Know that mood lability, tearfulness, and isolation may also be present but confused and disregarded as normal consequences of school, residency, or life as a physician. Third, recognize common behavioral changes associated with anxiety, such as irritability, avoidance, and physical symptoms, including headache, muscle aches, joint pain, GI discomfort, palpitations, and insomnia. Last, reach out to colleagues who have suddenly or gradually withdrawn. Schedule frequent check-ins for one another and do not be afraid to admit that you are human. There is no shame in vulnerability but there is bravery and strength.

If you are in school or residency training, reach out to health centers, training directors, supervisors, family and/or friends. Whether you are an early career physician or amid a decades-long career, connect with your peers, reach out to junior members, offer and accept support. Anonymous hotlines, listservs, email groups, virtual meetings, texts, and phone calls also provide opportunities for wellness checks, pep talks, or venting sessions. All are important. In the case where more specialized help is needed, contact your primary care physician, reach out to colleagues in mental health, contact the Suicide Prevention Lifeline at 1-800 273-8255. Know there is help; you are not alone.

In these unprecedented and uncertain times, remember the African proverb “It takes a village.” To ask for help reveals strength and fortitude. The more we advocate for ourselves and one another, the more we will prevail and shed the myth of infallibility.

Dr. Thomas is a board-certified adult psychiatrist with an interest in chronic illness, women’s behavioral health, and minority mental health. She currently practices in North Kingstown and East Providence, R.I. She has no conflicts of interest.

It’s been more than a year since we came face to face with an unprecedented, unrelenting pandemic. Determined to overcome, determined to forge ahead, we worked tirelessly.

Drazen Zigic/Getty Images

Hours upon hours, days upon days, months upon months. Hoping for recovery while facing the devastation of death. We were praised, and lauded as heroes as we pleaded for essential protective gear and urged our communities to think critically, act responsibly, and distance safely. From the cities to small towns, we answered the call. Leaving long-practiced specialties, reassigned from our practices and training, we worked together uncertain of the future, but committed to safeguarding our present. Through sacrifice we toiled, leaving our families to protect against contagion, wading through halls of the sick and fighting against the threat of death.

Beginning at the beginning

Addressing these issues starts with training. As a new cohort of eager students enters medical/osteopathic school, the focus should lie not only on foundations of medicine and brute memorization of copious information but also on self-care, wellness checks, and group morale. The same emphasis placed upon patient care and advocacy must also be extended toward ensuring that the next generation of physicians will understand the importance of caring for themselves as much as they care for others.

In the same manner, past stereotypes of ruthless, cut-throat, competition must also evolve. Although the spirit of hard work and perseverance is essential, the manner it propagates is just as important. Aggressive questioning, myriad testing, rigid hierarchies, blind obedience, and ego inflation may separate the pack, but it also reinforces individualism and isolation. Students may shield their internal turmoil behind a mask. The mask of the Super Doctor.

However, as the pandemic has shown, even the most durable of masks will eventually fail. So how do we recognize and accept that help is needed? How do we access support? First, it is vital to acknowledge that there is no shame in asking for help. It is both surprising and reassuring that many of us have been there, an unspoken band of brothers and sisters. Second, remember the acronym for depressive symptoms SIGECAPS (sleep, interest, guilt, energy, concentration, appetite, psychomotor, suicide). Remember that these symptoms may develop gradually or feel sudden and overwhelming. Know that mood lability, tearfulness, and isolation may also be present but confused and disregarded as normal consequences of school, residency, or life as a physician. Third, recognize common behavioral changes associated with anxiety, such as irritability, avoidance, and physical symptoms, including headache, muscle aches, joint pain, GI discomfort, palpitations, and insomnia. Last, reach out to colleagues who have suddenly or gradually withdrawn. Schedule frequent check-ins for one another and do not be afraid to admit that you are human. There is no shame in vulnerability but there is bravery and strength.

If you are in school or residency training, reach out to health centers, training directors, supervisors, family and/or friends. Whether you are an early career physician or amid a decades-long career, connect with your peers, reach out to junior members, offer and accept support. Anonymous hotlines, listservs, email groups, virtual meetings, texts, and phone calls also provide opportunities for wellness checks, pep talks, or venting sessions. All are important. In the case where more specialized help is needed, contact your primary care physician, reach out to colleagues in mental health, contact the Suicide Prevention Lifeline at 1-800 273-8255. Know there is help; you are not alone.

In these unprecedented and uncertain times, remember the African proverb “It takes a village.” To ask for help reveals strength and fortitude. The more we advocate for ourselves and one another, the more we will prevail and shed the myth of infallibility.

Dr. Thomas is a board-certified adult psychiatrist with an interest in chronic illness, women’s behavioral health, and minority mental health. She currently practices in North Kingstown and East Providence, R.I. She has no conflicts of interest.

“Mom, Dad: I’m gay.” Saying these words can be difficult for anyone but especially for adolescents and young adults. The process of coming out is one filled with anticipation, angst, and hopefully relief. However, this process is not a one-time event but rather something that LGBTQ adolescents and young adults have to face every time they meet someone new or are placed in a new situation. They have to decide if that new person can be trusted with their very personal information.

Coming out is a process that begins months to years before the adolescent or young adult utters the words above. The first step in the coming out process is accepting one’s sexual orientation and/or gender identity. This period of time can be somewhat tumultuous, filled with a mix of emotions ranging from fear to excitement. The adolescent or young adult may need support in coming to terms with who they are as their authentic self. This can take the role of a therapist, a trusted friend, or a trusted family member. There may even be times that the adolescent or young adult’s physician is the only person that they are out to besides their friends. Therefore, you can play a very important role in helping your adolescent and young adult patients as they navigate the journey of coming out.

One of the most important ways that physicians can help adolescents and young adults is to spend time alone with them at as many visits as you can. This gives the patient the time to discuss confidential matters with you, including their sexual orientation and/or gender identity. It is possible that the chronic abdominal pain that your adolescent patient is experiencing may not represent an organic abdominal problem but could represent a manifestation of anxiety because that patient is afraid of his/her parent(s) finding out that he/she identifies as LGBTQ. If one of your patients comes out to you, it is important that you validate for your patient that they are normal as who they are. In addition, you can thank your patient for trusting you with that information and let them know that you are there to support them in whatever way they feel appropriate. Just as important is that you work with the adolescent on a plan for their other concerns that respects their right to privacy in regard to their gender identity and/or sexual orientation.

The adolescent or young adult should always be in control of who knows about their gender identity and/or sexual orientation. Ideally, they should also always be the one who shares that information with others. Many times, parents may react positively to finding out that their child identifies as LGBTQ and want to share that information with their friends or family members. Alternatively, the parent could use the patient’s sexual orientation or gender identity negatively against them to their family and/or friends. As the physician, you can help counsel the family that it should always be their child who gets to share that information and when it is shared.

So how can you support your LGBTQ patients as they navigate the coming out process? First, when you find out from your patient that they identify as LGBTQ, ensure that you ask them who knows about their identity. This prevents inadvertent disclosures to the parent/guardian when the patient is not ready for them to know. Second, discuss with the patient if he/she needs any resources related to their sexual orientation and/or gender identity. This includes things such as the names of local LGBTQ youth organizations or the phone number for the Trevor Project suicide hotline, for example. Third, ensure that your office and staff are a welcoming and affirmative environment for your patients. A 2017 survey by the Human Rights Campaign found that only 8% of transgender or gender-diverse adolescents and young adults were out to all of their physicians and only 5% of LGB adolescents and young adults were out to all of their physicians.¹ This is likely because of past negative experiences these patients have had with previous physicians. A 2017 study from the Center for American Progress found that 8% of LGB patients and 29% of transgender or gender-diverse patients said that a doctor or health care provider had refused to see them because of their actual or perceived identity.² Lastly, you could offer to help facilitate a discussion between the patient and his/her parents in relation to his/her sexual orientation and/or gender identity.

In summary, pediatricians can play an important role in the coming out process of their LGBTQ patients. Your office is an important source of support for the physical and mental health of these patients as they navigate this journey. You can also be a strong advocate for these patients to their parents and families. I think that we all can agree that our patients deserve better than only feeling comfortable to be out to 5%-8% of their physicians.

Dr. Cooper is assistant professor of pediatrics at the University of Texas, Dallas, and an adolescent medicine specialist at Children’s Medical Center Dallas. Contact him at pdnews@mdedge.com.
 

References

1. Human Rights Campaign 2018 LGBTQ Youth Report.

2. Mirza SA and Rooney C. “Discrimination prevents LGBTQ people from accessing health care.” Center for American Progress. 2018 Jan 18.

“Mom, Dad: I’m gay.” Saying these words can be difficult for anyone but especially for adolescents and young adults. The process of coming out is one filled with anticipation, angst, and hopefully relief. However, this process is not a one-time event but rather something that LGBTQ adolescents and young adults have to face every time they meet someone new or are placed in a new situation. They have to decide if that new person can be trusted with their very personal information.

Coming out is a process that begins months to years before the adolescent or young adult utters the words above. The first step in the coming out process is accepting one’s sexual orientation and/or gender identity. This period of time can be somewhat tumultuous, filled with a mix of emotions ranging from fear to excitement. The adolescent or young adult may need support in coming to terms with who they are as their authentic self. This can take the role of a therapist, a trusted friend, or a trusted family member. There may even be times that the adolescent or young adult’s physician is the only person that they are out to besides their friends. Therefore, you can play a very important role in helping your adolescent and young adult patients as they navigate the journey of coming out.

One of the most important ways that physicians can help adolescents and young adults is to spend time alone with them at as many visits as you can. This gives the patient the time to discuss confidential matters with you, including their sexual orientation and/or gender identity. It is possible that the chronic abdominal pain that your adolescent patient is experiencing may not represent an organic abdominal problem but could represent a manifestation of anxiety because that patient is afraid of his/her parent(s) finding out that he/she identifies as LGBTQ. If one of your patients comes out to you, it is important that you validate for your patient that they are normal as who they are. In addition, you can thank your patient for trusting you with that information and let them know that you are there to support them in whatever way they feel appropriate. Just as important is that you work with the adolescent on a plan for their other concerns that respects their right to privacy in regard to their gender identity and/or sexual orientation.

The adolescent or young adult should always be in control of who knows about their gender identity and/or sexual orientation. Ideally, they should also always be the one who shares that information with others. Many times, parents may react positively to finding out that their child identifies as LGBTQ and want to share that information with their friends or family members. Alternatively, the parent could use the patient’s sexual orientation or gender identity negatively against them to their family and/or friends. As the physician, you can help counsel the family that it should always be their child who gets to share that information and when it is shared.

So how can you support your LGBTQ patients as they navigate the coming out process? First, when you find out from your patient that they identify as LGBTQ, ensure that you ask them who knows about their identity. This prevents inadvertent disclosures to the parent/guardian when the patient is not ready for them to know. Second, discuss with the patient if he/she needs any resources related to their sexual orientation and/or gender identity. This includes things such as the names of local LGBTQ youth organizations or the phone number for the Trevor Project suicide hotline, for example. Third, ensure that your office and staff are a welcoming and affirmative environment for your patients. A 2017 survey by the Human Rights Campaign found that only 8% of transgender or gender-diverse adolescents and young adults were out to all of their physicians and only 5% of LGB adolescents and young adults were out to all of their physicians.¹ This is likely because of past negative experiences these patients have had with previous physicians. A 2017 study from the Center for American Progress found that 8% of LGB patients and 29% of transgender or gender-diverse patients said that a doctor or health care provider had refused to see them because of their actual or perceived identity.² Lastly, you could offer to help facilitate a discussion between the patient and his/her parents in relation to his/her sexual orientation and/or gender identity.

In summary, pediatricians can play an important role in the coming out process of their LGBTQ patients. Your office is an important source of support for the physical and mental health of these patients as they navigate this journey. You can also be a strong advocate for these patients to their parents and families. I think that we all can agree that our patients deserve better than only feeling comfortable to be out to 5%-8% of their physicians.

Dr. Cooper is assistant professor of pediatrics at the University of Texas, Dallas, and an adolescent medicine specialist at Children’s Medical Center Dallas. Contact him at pdnews@mdedge.com.
 

References

1. Human Rights Campaign 2018 LGBTQ Youth Report.

2. Mirza SA and Rooney C. “Discrimination prevents LGBTQ people from accessing health care.” Center for American Progress. 2018 Jan 18.

“Mom, Dad: I’m gay.” Saying these words can be difficult for anyone but especially for adolescents and young adults. The process of coming out is one filled with anticipation, angst, and hopefully relief. However, this process is not a one-time event but rather something that LGBTQ adolescents and young adults have to face every time they meet someone new or are placed in a new situation. They have to decide if that new person can be trusted with their very personal information.

Coming out is a process that begins months to years before the adolescent or young adult utters the words above. The first step in the coming out process is accepting one’s sexual orientation and/or gender identity. This period of time can be somewhat tumultuous, filled with a mix of emotions ranging from fear to excitement. The adolescent or young adult may need support in coming to terms with who they are as their authentic self. This can take the role of a therapist, a trusted friend, or a trusted family member. There may even be times that the adolescent or young adult’s physician is the only person that they are out to besides their friends. Therefore, you can play a very important role in helping your adolescent and young adult patients as they navigate the journey of coming out.

One of the most important ways that physicians can help adolescents and young adults is to spend time alone with them at as many visits as you can. This gives the patient the time to discuss confidential matters with you, including their sexual orientation and/or gender identity. It is possible that the chronic abdominal pain that your adolescent patient is experiencing may not represent an organic abdominal problem but could represent a manifestation of anxiety because that patient is afraid of his/her parent(s) finding out that he/she identifies as LGBTQ. If one of your patients comes out to you, it is important that you validate for your patient that they are normal as who they are. In addition, you can thank your patient for trusting you with that information and let them know that you are there to support them in whatever way they feel appropriate. Just as important is that you work with the adolescent on a plan for their other concerns that respects their right to privacy in regard to their gender identity and/or sexual orientation.

The adolescent or young adult should always be in control of who knows about their gender identity and/or sexual orientation. Ideally, they should also always be the one who shares that information with others. Many times, parents may react positively to finding out that their child identifies as LGBTQ and want to share that information with their friends or family members. Alternatively, the parent could use the patient’s sexual orientation or gender identity negatively against them to their family and/or friends. As the physician, you can help counsel the family that it should always be their child who gets to share that information and when it is shared.

So how can you support your LGBTQ patients as they navigate the coming out process? First, when you find out from your patient that they identify as LGBTQ, ensure that you ask them who knows about their identity. This prevents inadvertent disclosures to the parent/guardian when the patient is not ready for them to know. Second, discuss with the patient if he/she needs any resources related to their sexual orientation and/or gender identity. This includes things such as the names of local LGBTQ youth organizations or the phone number for the Trevor Project suicide hotline, for example. Third, ensure that your office and staff are a welcoming and affirmative environment for your patients. A 2017 survey by the Human Rights Campaign found that only 8% of transgender or gender-diverse adolescents and young adults were out to all of their physicians and only 5% of LGB adolescents and young adults were out to all of their physicians.¹ This is likely because of past negative experiences these patients have had with previous physicians. A 2017 study from the Center for American Progress found that 8% of LGB patients and 29% of transgender or gender-diverse patients said that a doctor or health care provider had refused to see them because of their actual or perceived identity.² Lastly, you could offer to help facilitate a discussion between the patient and his/her parents in relation to his/her sexual orientation and/or gender identity.

In summary, pediatricians can play an important role in the coming out process of their LGBTQ patients. Your office is an important source of support for the physical and mental health of these patients as they navigate this journey. You can also be a strong advocate for these patients to their parents and families. I think that we all can agree that our patients deserve better than only feeling comfortable to be out to 5%-8% of their physicians.

Dr. Cooper is assistant professor of pediatrics at the University of Texas, Dallas, and an adolescent medicine specialist at Children’s Medical Center Dallas. Contact him at pdnews@mdedge.com.
 

References

1. Human Rights Campaign 2018 LGBTQ Youth Report.

2. Mirza SA and Rooney C. “Discrimination prevents LGBTQ people from accessing health care.” Center for American Progress. 2018 Jan 18.

Dr. Margaret G. Klitzke is a board-certified child and adolescent psychiatrist who has worked across all settings of the Center for Autism and Developmental Disabilities at Bradley Hospital in East Providence, R.I.

Courtesy Dr. Margaret G. Klitzke

I spoke with Dr. Klitzke recently about her work as an outpatient psychiatrist at the center and about the important role of families in the treatment it provides. The center offers highly specialized clinical services for children and adolescents between the ages of 2 and 18 who show signs of serious emotional and behavioral problems in addition to a developmental disability, such as autism, Asperger’s, or intellectual disability.

ALISON M. HERU, MD: Hello, Dr. Klitzke and thank you for agreeing to this interview.

MARGARET G. KLITZKE, DO: My pleasure.

AMH: I admire your dedication to this population of children and adolescents. To me, it seems very hard to work with patients and families where there is significant disability and there is little hope of the patient “getting better.”

MGK: When parents come to us, they have great hopes their children can be helped. They often express understanding and acceptance of the child’s disability, and seek to understand the psychiatric or behavioral issues. These parents are often very dedicated to their children, giving up careers to care for them. But as professionals, we must be sensitive to the role each parent can play and how they can support each other and the family.

AMH: So much of your work focuses on family inclusion and family psychoeducation?

MGK: Yes. An example that stands out is a couple where the mother had become the voice for the family in dealing with professionals, but she was overwhelmed in this role. So, we invited the father in. He explained that medical professionals and school personnel would address their remarks to his wife and that he felt marginalized. We worked with the couple, now always including the father, and he has gone on to become a vocal advocate for children with disabilities. It is inspiring to watch families become advocates – to insist that others see the child’s strengths – not just weaknesses.

AMH: Do you feel that the families ever come to you with too high expectations of what you can do to help their child?

MGK: As a child psychiatrist, one must put oneself in the parents’ shoes. Charlie Zeanah Jr., MD, and others have done wonderful work in attachment. They have identified that parents have fantasies and beliefs about what the child will be like before the child is born. We all have fantasies about our babies before they come to us! For many families, they quickly come to understand that their child is not like other children. This new world of parenting is not what they expected. A mother once gave me a short piece called “Welcome to Holland,” written by a mother whose child has Down syndrome.

AMH: How do you begin to work with these families? There must be such a sense of loss and tragedy in their lives.

MGK: My first goal is to understand what it is like to have a child with developmental disability, not just for the parents but for the siblings, too. I strive to understand what the parents want for their child and how they see themselves as a family. I see us, the health care team, as agents to help the child and the family be the very best they can be.

AMH: How do you deal with parents who are not be on the same page?

MGK: It is important that parents are consistent and are able to work together. Even if they are divorced, I have seen families able to unite around the care of their child with a disability. This is quite an achievement given the high rates of divorce – although most of the families that I have worked with are intact. As in all families, each member has a role in helping the family function well. It means using the strength of each parent to help them become a parenting team.

AMH: What if the parents have unrealistic expectations of their child?

MGK: Yes, there are parents who come to us with unrealistic expectations, such as believing their nonverbal child will talk some day. In such a case, we must be certain that we have exhausted all methods to help this child communicate, and once we have done all we can, then we must accept where that child is; to accept and help the family accept, the child’s weaknesses and acknowledge their strengths. Change what you can and be a support for everything else.

AMH: I find it hard to imagine caring for a severely disabled child. How do these parents do this?

MGK: These are children who are nonverbal, and children who can be very fragile, even medically. What I see are parents who want to connect, who want to find that something inside that child, that special place where there is connection. That place of reciprocity. That is important to us all, helping the family find that place of reciprocal connection.

AMH: What language do you use to discuss this with families?

MGK: I say, “This is the child’s strength and this is the child’s weakness; capitalize on the strengths and let’s shore up their weaknesses.”

AMH: How do you approach the families? Where do you start?

MGK: I meet the family where they are. One cannot with these families or any families stand rigidly 10 feet away, and demand that they change. This never works, and we will be of no help to them. We must understand the family system and how they have arrived at their current place of functioning.

AMH: Can you give an example?

MGK: Yes, for example if a parent is drinking excessively, I help them understand why they are coping that way and see if they are willing to change.

AMH: What keeps you going ?

MGK: I think it comes back to the family work. For me, I believe the families are doing the very best they can. If the family is really impaired in some way, I see it as my job to figure out why that is their pattern of behavior, and I do what I can to help them facilitate change.

AMH: What inspires you about these families?

MGK: These families are able to recognize the strengths and beauty that their children bring them – the strength of these children, their personalities and their wills of steel! They are able to communicate what they need. Siblings, too, make life decisions based on their experiences. They often end up going down the path of caring for such children as professionals.

AMH: Do you have any recommendations for a young child psychiatrist who might be considering working with this population?

MGK: Developmental disabilities in child psychiatry is where medicine, neurology, and child development meet. The advances in genetics and neurology are major gifts to the field. It used to be that I would have to sell the field to medical students and residents. Now they are coming to me saying that they want to work in this area. It is an intellectually rich field in which to work. There is a real change happening. But the place where it becomes really magical is in working with the families.

AMH: What other changes have you seen?

MGK: With the closure of big institutions, it is less of an option for families to walk away. The families now feel that they need to take care of the child.

AMH: What has your career taught you?

MGK: These children and their families made us better people. It has taught me patience, to enter every situation without preconceived notions, and that there is something new to learn every day.

References

J Child Adolesc Psychiatry. 1975 Jun 1;14(3):387-421.

Evaluation and Treating Families: The McMaster Approach. Routledge/Taylor & Francis Group, 2005.

Movies to watch

Lorenzo’s Oil, 1992.

My Left Foot, 1989.

Dr. Heru is professor of psychiatry at the University of Colorado at Denver, Aurora. She is editor of “Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals” (Routledge, 2013). She has no conflicts of interest.

Dr. Klitkze is a 1983 graduate of the Texas College of Osteopathic Medicine, and completed her residency and fellowship training at Brown University, Providence, R.I. She is a member of the American Psychiatric Association, the American Academy of Child and Adolescent Psychiatry, and the Rhode Island Medical Society, where she serves on the Physicians’ Health Committee. She is actively involved in teaching medical students, residents, and fellows, and has received several teaching awards from the department of psychiatry and human behavior at Brown.

Dr. Margaret G. Klitzke is a board-certified child and adolescent psychiatrist who has worked across all settings of the Center for Autism and Developmental Disabilities at Bradley Hospital in East Providence, R.I.

Courtesy Dr. Margaret G. Klitzke

I spoke with Dr. Klitzke recently about her work as an outpatient psychiatrist at the center and about the important role of families in the treatment it provides. The center offers highly specialized clinical services for children and adolescents between the ages of 2 and 18 who show signs of serious emotional and behavioral problems in addition to a developmental disability, such as autism, Asperger’s, or intellectual disability.

ALISON M. HERU, MD: Hello, Dr. Klitzke and thank you for agreeing to this interview.

MARGARET G. KLITZKE, DO: My pleasure.

AMH: I admire your dedication to this population of children and adolescents. To me, it seems very hard to work with patients and families where there is significant disability and there is little hope of the patient “getting better.”

MGK: When parents come to us, they have great hopes their children can be helped. They often express understanding and acceptance of the child’s disability, and seek to understand the psychiatric or behavioral issues. These parents are often very dedicated to their children, giving up careers to care for them. But as professionals, we must be sensitive to the role each parent can play and how they can support each other and the family.

AMH: So much of your work focuses on family inclusion and family psychoeducation?

MGK: Yes. An example that stands out is a couple where the mother had become the voice for the family in dealing with professionals, but she was overwhelmed in this role. So, we invited the father in. He explained that medical professionals and school personnel would address their remarks to his wife and that he felt marginalized. We worked with the couple, now always including the father, and he has gone on to become a vocal advocate for children with disabilities. It is inspiring to watch families become advocates – to insist that others see the child’s strengths – not just weaknesses.

AMH: Do you feel that the families ever come to you with too high expectations of what you can do to help their child?

MGK: As a child psychiatrist, one must put oneself in the parents’ shoes. Charlie Zeanah Jr., MD, and others have done wonderful work in attachment. They have identified that parents have fantasies and beliefs about what the child will be like before the child is born. We all have fantasies about our babies before they come to us! For many families, they quickly come to understand that their child is not like other children. This new world of parenting is not what they expected. A mother once gave me a short piece called “Welcome to Holland,” written by a mother whose child has Down syndrome.

AMH: How do you begin to work with these families? There must be such a sense of loss and tragedy in their lives.

MGK: My first goal is to understand what it is like to have a child with developmental disability, not just for the parents but for the siblings, too. I strive to understand what the parents want for their child and how they see themselves as a family. I see us, the health care team, as agents to help the child and the family be the very best they can be.

AMH: How do you deal with parents who are not be on the same page?

MGK: It is important that parents are consistent and are able to work together. Even if they are divorced, I have seen families able to unite around the care of their child with a disability. This is quite an achievement given the high rates of divorce – although most of the families that I have worked with are intact. As in all families, each member has a role in helping the family function well. It means using the strength of each parent to help them become a parenting team.

AMH: What if the parents have unrealistic expectations of their child?

MGK: Yes, there are parents who come to us with unrealistic expectations, such as believing their nonverbal child will talk some day. In such a case, we must be certain that we have exhausted all methods to help this child communicate, and once we have done all we can, then we must accept where that child is; to accept and help the family accept, the child’s weaknesses and acknowledge their strengths. Change what you can and be a support for everything else.

AMH: I find it hard to imagine caring for a severely disabled child. How do these parents do this?

MGK: These are children who are nonverbal, and children who can be very fragile, even medically. What I see are parents who want to connect, who want to find that something inside that child, that special place where there is connection. That place of reciprocity. That is important to us all, helping the family find that place of reciprocal connection.

AMH: What language do you use to discuss this with families?

MGK: I say, “This is the child’s strength and this is the child’s weakness; capitalize on the strengths and let’s shore up their weaknesses.”

AMH: How do you approach the families? Where do you start?

MGK: I meet the family where they are. One cannot with these families or any families stand rigidly 10 feet away, and demand that they change. This never works, and we will be of no help to them. We must understand the family system and how they have arrived at their current place of functioning.

AMH: Can you give an example?

MGK: Yes, for example if a parent is drinking excessively, I help them understand why they are coping that way and see if they are willing to change.

AMH: What keeps you going ?

MGK: I think it comes back to the family work. For me, I believe the families are doing the very best they can. If the family is really impaired in some way, I see it as my job to figure out why that is their pattern of behavior, and I do what I can to help them facilitate change.

AMH: What inspires you about these families?

MGK: These families are able to recognize the strengths and beauty that their children bring them – the strength of these children, their personalities and their wills of steel! They are able to communicate what they need. Siblings, too, make life decisions based on their experiences. They often end up going down the path of caring for such children as professionals.

AMH: Do you have any recommendations for a young child psychiatrist who might be considering working with this population?

MGK: Developmental disabilities in child psychiatry is where medicine, neurology, and child development meet. The advances in genetics and neurology are major gifts to the field. It used to be that I would have to sell the field to medical students and residents. Now they are coming to me saying that they want to work in this area. It is an intellectually rich field in which to work. There is a real change happening. But the place where it becomes really magical is in working with the families.

AMH: What other changes have you seen?

MGK: With the closure of big institutions, it is less of an option for families to walk away. The families now feel that they need to take care of the child.

AMH: What has your career taught you?

MGK: These children and their families made us better people. It has taught me patience, to enter every situation without preconceived notions, and that there is something new to learn every day.

References

J Child Adolesc Psychiatry. 1975 Jun 1;14(3):387-421.

Evaluation and Treating Families: The McMaster Approach. Routledge/Taylor & Francis Group, 2005.

Movies to watch

Lorenzo’s Oil, 1992.

My Left Foot, 1989.

Dr. Heru is professor of psychiatry at the University of Colorado at Denver, Aurora. She is editor of “Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals” (Routledge, 2013). She has no conflicts of interest.

Dr. Klitkze is a 1983 graduate of the Texas College of Osteopathic Medicine, and completed her residency and fellowship training at Brown University, Providence, R.I. She is a member of the American Psychiatric Association, the American Academy of Child and Adolescent Psychiatry, and the Rhode Island Medical Society, where she serves on the Physicians’ Health Committee. She is actively involved in teaching medical students, residents, and fellows, and has received several teaching awards from the department of psychiatry and human behavior at Brown.

Dr. Margaret G. Klitzke is a board-certified child and adolescent psychiatrist who has worked across all settings of the Center for Autism and Developmental Disabilities at Bradley Hospital in East Providence, R.I.

Courtesy Dr. Margaret G. Klitzke

I spoke with Dr. Klitzke recently about her work as an outpatient psychiatrist at the center and about the important role of families in the treatment it provides. The center offers highly specialized clinical services for children and adolescents between the ages of 2 and 18 who show signs of serious emotional and behavioral problems in addition to a developmental disability, such as autism, Asperger’s, or intellectual disability.

ALISON M. HERU, MD: Hello, Dr. Klitzke and thank you for agreeing to this interview.

MARGARET G. KLITZKE, DO: My pleasure.

AMH: I admire your dedication to this population of children and adolescents. To me, it seems very hard to work with patients and families where there is significant disability and there is little hope of the patient “getting better.”

MGK: When parents come to us, they have great hopes their children can be helped. They often express understanding and acceptance of the child’s disability, and seek to understand the psychiatric or behavioral issues. These parents are often very dedicated to their children, giving up careers to care for them. But as professionals, we must be sensitive to the role each parent can play and how they can support each other and the family.

AMH: So much of your work focuses on family inclusion and family psychoeducation?

MGK: Yes. An example that stands out is a couple where the mother had become the voice for the family in dealing with professionals, but she was overwhelmed in this role. So, we invited the father in. He explained that medical professionals and school personnel would address their remarks to his wife and that he felt marginalized. We worked with the couple, now always including the father, and he has gone on to become a vocal advocate for children with disabilities. It is inspiring to watch families become advocates – to insist that others see the child’s strengths – not just weaknesses.

AMH: Do you feel that the families ever come to you with too high expectations of what you can do to help their child?

MGK: As a child psychiatrist, one must put oneself in the parents’ shoes. Charlie Zeanah Jr., MD, and others have done wonderful work in attachment. They have identified that parents have fantasies and beliefs about what the child will be like before the child is born. We all have fantasies about our babies before they come to us! For many families, they quickly come to understand that their child is not like other children. This new world of parenting is not what they expected. A mother once gave me a short piece called “Welcome to Holland,” written by a mother whose child has Down syndrome.

AMH: How do you begin to work with these families? There must be such a sense of loss and tragedy in their lives.

MGK: My first goal is to understand what it is like to have a child with developmental disability, not just for the parents but for the siblings, too. I strive to understand what the parents want for their child and how they see themselves as a family. I see us, the health care team, as agents to help the child and the family be the very best they can be.

AMH: How do you deal with parents who are not be on the same page?

MGK: It is important that parents are consistent and are able to work together. Even if they are divorced, I have seen families able to unite around the care of their child with a disability. This is quite an achievement given the high rates of divorce – although most of the families that I have worked with are intact. As in all families, each member has a role in helping the family function well. It means using the strength of each parent to help them become a parenting team.

AMH: What if the parents have unrealistic expectations of their child?

MGK: Yes, there are parents who come to us with unrealistic expectations, such as believing their nonverbal child will talk some day. In such a case, we must be certain that we have exhausted all methods to help this child communicate, and once we have done all we can, then we must accept where that child is; to accept and help the family accept, the child’s weaknesses and acknowledge their strengths. Change what you can and be a support for everything else.

AMH: I find it hard to imagine caring for a severely disabled child. How do these parents do this?

MGK: These are children who are nonverbal, and children who can be very fragile, even medically. What I see are parents who want to connect, who want to find that something inside that child, that special place where there is connection. That place of reciprocity. That is important to us all, helping the family find that place of reciprocal connection.

AMH: What language do you use to discuss this with families?

MGK: I say, “This is the child’s strength and this is the child’s weakness; capitalize on the strengths and let’s shore up their weaknesses.”

AMH: How do you approach the families? Where do you start?

MGK: I meet the family where they are. One cannot with these families or any families stand rigidly 10 feet away, and demand that they change. This never works, and we will be of no help to them. We must understand the family system and how they have arrived at their current place of functioning.

AMH: Can you give an example?

MGK: Yes, for example if a parent is drinking excessively, I help them understand why they are coping that way and see if they are willing to change.

AMH: What keeps you going ?

MGK: I think it comes back to the family work. For me, I believe the families are doing the very best they can. If the family is really impaired in some way, I see it as my job to figure out why that is their pattern of behavior, and I do what I can to help them facilitate change.

AMH: What inspires you about these families?

MGK: These families are able to recognize the strengths and beauty that their children bring them – the strength of these children, their personalities and their wills of steel! They are able to communicate what they need. Siblings, too, make life decisions based on their experiences. They often end up going down the path of caring for such children as professionals.

AMH: Do you have any recommendations for a young child psychiatrist who might be considering working with this population?

MGK: Developmental disabilities in child psychiatry is where medicine, neurology, and child development meet. The advances in genetics and neurology are major gifts to the field. It used to be that I would have to sell the field to medical students and residents. Now they are coming to me saying that they want to work in this area. It is an intellectually rich field in which to work. There is a real change happening. But the place where it becomes really magical is in working with the families.

AMH: What other changes have you seen?

MGK: With the closure of big institutions, it is less of an option for families to walk away. The families now feel that they need to take care of the child.

AMH: What has your career taught you?

MGK: These children and their families made us better people. It has taught me patience, to enter every situation without preconceived notions, and that there is something new to learn every day.

References

J Child Adolesc Psychiatry. 1975 Jun 1;14(3):387-421.

Evaluation and Treating Families: The McMaster Approach. Routledge/Taylor & Francis Group, 2005.

Movies to watch

Lorenzo’s Oil, 1992.

My Left Foot, 1989.

Dr. Heru is professor of psychiatry at the University of Colorado at Denver, Aurora. She is editor of “Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals” (Routledge, 2013). She has no conflicts of interest.

Dr. Klitkze is a 1983 graduate of the Texas College of Osteopathic Medicine, and completed her residency and fellowship training at Brown University, Providence, R.I. She is a member of the American Psychiatric Association, the American Academy of Child and Adolescent Psychiatry, and the Rhode Island Medical Society, where she serves on the Physicians’ Health Committee. She is actively involved in teaching medical students, residents, and fellows, and has received several teaching awards from the department of psychiatry and human behavior at Brown.

Dr. Crain’s excellent review, “Breaking the cycle of medication overuse headache” (J Fam Pract. 2021;70:20-28) provides an approach to the diagnosis and treatment of this common disorder that is consistent with most expert opinion and published guidelines. However, like most articles on this subject, it is missing a critical review of the evidence that supports the existence of this condition and the recommended treatments. 

The strong association between intractable headaches and quantity of medication used makes the diagnosis of medication overuse headache (MOH) attractive with plausible (if unproven) pathophysiological mechanisms. However, reversing the direction of causation (intractable headaches lead to more medication) seems just as likely. While MOH is taken as an article of faith by most headache experts, high-quality studies in support of this theory have not yet been performed.¹

On the other hand, fear of MOH often leads to rigid, arbitrary limitations of abortive medications, blaming of the patient for their symptoms, and the substitution of a host of pharmacologic and nonpharmacologic interventions that similarly lack evidence of efficacy. Patients with chronic migraine are told to take abortive medications early in the headache but not to take them more than twice per week. They hoard their medications while trying to decide if each daily headache is the “big one” that merits depleting their limited supply of medication.

Avoiding medication “overuse” and prescribing from our growing armamentarium of effective preventive medications remain important strategies. However, until we have better evidence, we need to be a little more flexible in prescribing abortive medications and avoid accepting the MOH paradigm as gospel.

David A. Silverstein, MD
Buffalo, NY

Dr. Crain’s excellent review, “Breaking the cycle of medication overuse headache” (J Fam Pract. 2021;70:20-28) provides an approach to the diagnosis and treatment of this common disorder that is consistent with most expert opinion and published guidelines. However, like most articles on this subject, it is missing a critical review of the evidence that supports the existence of this condition and the recommended treatments. 

The strong association between intractable headaches and quantity of medication used makes the diagnosis of medication overuse headache (MOH) attractive with plausible (if unproven) pathophysiological mechanisms. However, reversing the direction of causation (intractable headaches lead to more medication) seems just as likely. While MOH is taken as an article of faith by most headache experts, high-quality studies in support of this theory have not yet been performed.¹

On the other hand, fear of MOH often leads to rigid, arbitrary limitations of abortive medications, blaming of the patient for their symptoms, and the substitution of a host of pharmacologic and nonpharmacologic interventions that similarly lack evidence of efficacy. Patients with chronic migraine are told to take abortive medications early in the headache but not to take them more than twice per week. They hoard their medications while trying to decide if each daily headache is the “big one” that merits depleting their limited supply of medication.

Avoiding medication “overuse” and prescribing from our growing armamentarium of effective preventive medications remain important strategies. However, until we have better evidence, we need to be a little more flexible in prescribing abortive medications and avoid accepting the MOH paradigm as gospel.

David A. Silverstein, MD
Buffalo, NY

Dr. Crain’s excellent review, “Breaking the cycle of medication overuse headache” (J Fam Pract. 2021;70:20-28) provides an approach to the diagnosis and treatment of this common disorder that is consistent with most expert opinion and published guidelines. However, like most articles on this subject, it is missing a critical review of the evidence that supports the existence of this condition and the recommended treatments. 

The strong association between intractable headaches and quantity of medication used makes the diagnosis of medication overuse headache (MOH) attractive with plausible (if unproven) pathophysiological mechanisms. However, reversing the direction of causation (intractable headaches lead to more medication) seems just as likely. While MOH is taken as an article of faith by most headache experts, high-quality studies in support of this theory have not yet been performed.¹

On the other hand, fear of MOH often leads to rigid, arbitrary limitations of abortive medications, blaming of the patient for their symptoms, and the substitution of a host of pharmacologic and nonpharmacologic interventions that similarly lack evidence of efficacy. Patients with chronic migraine are told to take abortive medications early in the headache but not to take them more than twice per week. They hoard their medications while trying to decide if each daily headache is the “big one” that merits depleting their limited supply of medication.

Avoiding medication “overuse” and prescribing from our growing armamentarium of effective preventive medications remain important strategies. However, until we have better evidence, we need to be a little more flexible in prescribing abortive medications and avoid accepting the MOH paradigm as gospel.

David A. Silverstein, MD
Buffalo, NY

Mnemonics are often used to help remember complex groups of individual items related to a common theme. Studies have shown that college students studying with mnemonics outperform students using rote learning, suggesting that mnemonics are useful in retention of facts. ¹

In 1 study, researchers compared memory athletes and control subjects before and after mnemonic training. ² Findings showed that mnemonics created connectivity changes in the control group similar to memory athletes at baseline. These changes persisted for as long as 4 months after training, demonstrating that mnemonics have long-lasting effects on memory capacity. ²  

The most frequently used forms of medical mnemonics are acronyms or acrostics. Acronyms are words in which each letter in the word corresponds to a series of words to be remembered. ³ A familiar example of a medical acronym is “SLUDGE,” which represents the symptoms for cholinergic toxicity (salivation, lacrimation, urination, defecation, gastrointestinal upset, emesis). An acrostic involves a phrase in which the first letter of each word corresponds to the first letter of a word to be remembered. ³ A commonly used acrostic phrase for the memorization of the 12 cranial nerves is “On Old Olympus’ Towering Tops A Finn And German Viewed Some Hops”: olfactory, optic, oculomotor, trochlear, trigeminal, abducens, facial, auditory (vestibulocochlear), glossopharyngeal, vagus, spinal accessory, hypoglossal.

Mnemonics are an effective way for medical students, residents, and current practitioners to effortlessly recall information. For example, COVERABCD is an acronym that stands for circulation/capnograph/color, oxygen, ventilation, endotracheal tube, review of equipment, airway, breathing, circulation, and drugs. ⁴ Runciman et al showed that the use of the acronym COVERABCD could have prevented or mitigated 60% of 2000 anesthetic incidents. ⁴ Another mnemonic, FAST, used to assess for a stroke, reduced median hospital arrival times by more than an hour. ⁵    

There are hundreds of mnemonics related to medical practice. Collections of those that might be useful for family practitioners and medical residents can be found at the following links: 

https://epomedicine.com/medical-mnemonics/  

www.oxfordmedicaleducation.com/medical-mnemonics/  

Kristyn McKnight, PharmD candidate
Hannah Lutz, PharmD candidate
Tracy Mahvan, MBA, PharmD, BCGP
School of Pharmacy, University of Wyoming, Laramie

Mnemonics are often used to help remember complex groups of individual items related to a common theme. Studies have shown that college students studying with mnemonics outperform students using rote learning, suggesting that mnemonics are useful in retention of facts. ¹

In 1 study, researchers compared memory athletes and control subjects before and after mnemonic training. ² Findings showed that mnemonics created connectivity changes in the control group similar to memory athletes at baseline. These changes persisted for as long as 4 months after training, demonstrating that mnemonics have long-lasting effects on memory capacity. ²  

The most frequently used forms of medical mnemonics are acronyms or acrostics. Acronyms are words in which each letter in the word corresponds to a series of words to be remembered. ³ A familiar example of a medical acronym is “SLUDGE,” which represents the symptoms for cholinergic toxicity (salivation, lacrimation, urination, defecation, gastrointestinal upset, emesis). An acrostic involves a phrase in which the first letter of each word corresponds to the first letter of a word to be remembered. ³ A commonly used acrostic phrase for the memorization of the 12 cranial nerves is “On Old Olympus’ Towering Tops A Finn And German Viewed Some Hops”: olfactory, optic, oculomotor, trochlear, trigeminal, abducens, facial, auditory (vestibulocochlear), glossopharyngeal, vagus, spinal accessory, hypoglossal.

Mnemonics are an effective way for medical students, residents, and current practitioners to effortlessly recall information. For example, COVERABCD is an acronym that stands for circulation/capnograph/color, oxygen, ventilation, endotracheal tube, review of equipment, airway, breathing, circulation, and drugs. ⁴ Runciman et al showed that the use of the acronym COVERABCD could have prevented or mitigated 60% of 2000 anesthetic incidents. ⁴ Another mnemonic, FAST, used to assess for a stroke, reduced median hospital arrival times by more than an hour. ⁵    

There are hundreds of mnemonics related to medical practice. Collections of those that might be useful for family practitioners and medical residents can be found at the following links: 

https://epomedicine.com/medical-mnemonics/  

www.oxfordmedicaleducation.com/medical-mnemonics/  

Kristyn McKnight, PharmD candidate
Hannah Lutz, PharmD candidate
Tracy Mahvan, MBA, PharmD, BCGP
School of Pharmacy, University of Wyoming, Laramie

Mnemonics are often used to help remember complex groups of individual items related to a common theme. Studies have shown that college students studying with mnemonics outperform students using rote learning, suggesting that mnemonics are useful in retention of facts. ¹

In 1 study, researchers compared memory athletes and control subjects before and after mnemonic training. ² Findings showed that mnemonics created connectivity changes in the control group similar to memory athletes at baseline. These changes persisted for as long as 4 months after training, demonstrating that mnemonics have long-lasting effects on memory capacity. ²  

The most frequently used forms of medical mnemonics are acronyms or acrostics. Acronyms are words in which each letter in the word corresponds to a series of words to be remembered. ³ A familiar example of a medical acronym is “SLUDGE,” which represents the symptoms for cholinergic toxicity (salivation, lacrimation, urination, defecation, gastrointestinal upset, emesis). An acrostic involves a phrase in which the first letter of each word corresponds to the first letter of a word to be remembered. ³ A commonly used acrostic phrase for the memorization of the 12 cranial nerves is “On Old Olympus’ Towering Tops A Finn And German Viewed Some Hops”: olfactory, optic, oculomotor, trochlear, trigeminal, abducens, facial, auditory (vestibulocochlear), glossopharyngeal, vagus, spinal accessory, hypoglossal.

Mnemonics are an effective way for medical students, residents, and current practitioners to effortlessly recall information. For example, COVERABCD is an acronym that stands for circulation/capnograph/color, oxygen, ventilation, endotracheal tube, review of equipment, airway, breathing, circulation, and drugs. ⁴ Runciman et al showed that the use of the acronym COVERABCD could have prevented or mitigated 60% of 2000 anesthetic incidents. ⁴ Another mnemonic, FAST, used to assess for a stroke, reduced median hospital arrival times by more than an hour. ⁵    

There are hundreds of mnemonics related to medical practice. Collections of those that might be useful for family practitioners and medical residents can be found at the following links: 

https://epomedicine.com/medical-mnemonics/  

www.oxfordmedicaleducation.com/medical-mnemonics/  

Kristyn McKnight, PharmD candidate
Hannah Lutz, PharmD candidate
Tracy Mahvan, MBA, PharmD, BCGP
School of Pharmacy, University of Wyoming, Laramie

Women with endometriosis often present for medical care for one or more of the following health issues: pelvic pain, infertility, and/or an adnexal cyst (endometrioma). For women with moderate or severe pelvic pain and laparoscopically diagnosed endometriosis, hormone therapy is often necessary to achieve maximal long-term reduction in pain and optimize health. I focus on opportunities to optimize hormonal treatment of endometriosis in this editorial.

When plan A is not working, move expeditiously to plan B

Cyclic or continuous combination estrogen-progestin contraceptives are commonly prescribed to treat pelvic pain caused by endometriosis. Although endometriosis pain may initially improve with estrogen-progestin contraceptives, many women on this medication will eventually report that they have worsening pelvic pain that adversely impacts their daily activities. Surprisingly, clinicians often continue to prescribe estrogen-progestin contraceptives even after the patient reports that the treatment is not effective, and their pain continues to be bothersome.

Patients benefit when they have access to the full range of hormone treatments that have been approved by the FDA for the treatment of moderate to severe pelvic pain caused by endometriosis (TABLE). In the situation where an estrogen-progestin contraceptive is no longer effective at reducing the pelvic pain, I will often offer the patient the option of norethindrone acetate (NEA) or elagolix treatment. My experience is that stopping the estrogen-progestin contraceptive and starting NEA or elagolix will result in a significant decrease in pain symptoms and improvement in the patient’s quality of life.

Continue to: Norethindrone acetate...

 

 

Norethindrone acetate

NEA 5 mg daily is approved by the FDA to treat endometriosis.¹ NEA was approved at a time when large controlled clinical trials were not routinely required for a medicine to be approved. The data to support NEA treatment of pelvic pain caused by endometriosis is based on cohort studies. In a study of 194 women, median age 21 years with moderate to severe pelvic pain and surgically proven endometriosis, the effect of NEA on pelvic pain was explored.² The initial dose of NEA was 5 mg daily. If the patient did not achieve a reduction in pelvic pain and amenorrhea on the NEA dose of 5 mg daily, the dose was increased by 2.5 mg every 2 weeks, up to a maximum of 15 mg, until amenorrhea and/or a decrease in pelvic pain was achieved. Ninety-five percent of the women in this cohort had previously been treated with an estrogen-progestin contraceptive or a GnRH antagonist and had discontinued those medications because of inadequate control of pelvic pain or because of side effects of the medication.

In this large cohort, 65% of women reported significant improvement in pelvic pain, with a median pain score of 5 before treatment and 0 following NEA treatment. About 55% of the women reported no side effects. The most commonly reported side effects were weight gain (16%; mean weight gain, 3.1 kg), acne (10%), mood lability (9%), hot flashes (8%), depression (6%), scalp hair loss (4%), headache (4%), nausea (3%), and deepening of the voice (1%). (In this study women could report more than one side effect.)

In another cohort study of 52 women with pelvic pain and surgically confirmed endometriosis, NEA treatment resulted in pain relief in 94% of the women.³ Breakthrough bleeding was a common side effect, reported by 58% of participants. The investigators concluded that NEA treatment was a “cost-effective alternative with relatively mild side effects in the treatment of symptomatic endometriosis.” A conclusion which I endorse.

NEA has been reported to effectively treat ovarian endometriomas and rectovaginal endometriosis.^4,5 In a cohort of 18 women who had previously had the surgical resection of an ovarian endometriosis cyst and had postoperative recurrence of pelvic pain and ovarian endometriosis, treatment was initiated with an escalating NEA regimen.⁴ Treatment was initiated with NEA 5 mg daily, with the dosage increased every 2 weeks by 2.5 mg until amenorrhea was established. Most women achieved amenorrhea with NEA 5 mg daily, and 89% had reduced pelvic pain. The investigators reported complete regression of the endometriosis cyst(s) in 74% of the women. In my experience, NEA does not result in complete regression of endometriosis cysts, but it does cause a reduction in cyst diameter and total volume.

In a retrospective cohort study, 61 women with pelvic pain and rectovaginal endometriosis had 5 years of treatment with NEA 2.5 mg or 5.0 mg daily.⁵ NEA treatment resulted in a decrease in dysmenorrhea, deep dyspareunia, and dyschezia. The most common side effects attributed to NEA treatment were weight gain (30%), vaginal bleeding (23%), decreased libido (11%), headache (9%), bloating or swelling (8%), depression (7%), and acne (5%). In women who had sequential imaging studies, NEA treatment resulted in a decrease in rectovaginal lesion volume, stable disease volume, or an increase in lesion volume in 56%, 32%, and 12% of the women, respectively. The investigators concluded that for women with rectovaginal endometriosis, NEA treatment is a low-cost option for long-term treatment.

In my practice, I do not prescribe NEA at doses greater than 5 mg daily. There are case reports that NEA at a dose of ≥10 mg daily is associated with the development of a hepatic adenoma,⁶ elevated liver transaminase concentration,⁷ and jaundice.⁸ If NEA 5 mg daily is not effective in controlling pelvic pain caused by endometriosis, I stop the NEA and start a GnRH analogue, most often elagolix.

NEA 5 mg is not FDA approved as a contraceptive. However, norethindrone 0.35 mg daily, also known as the “mini-pill”, is approved as a progestin-only contraceptive.⁹ NEA is rapidly and completely deacetylated to norethindrone, and the disposition of oral NEA is indistinguishable from that of norethindrone.¹ Since norethindrone 0.35 mg daily is approved as a contraceptive, it is highly likely that NEA 5 mg has contraceptive properties if taken daily.

Continue to: Elagolix...

Elagolix

Elagolix is FDA approved for the treatment of pelvic pain caused by endometriosis. I reviewed the key studies resulting in FDA approval in the November 2018 issue of OBG Management.¹⁰

In the Elaris Endometriosis-I study, 872 women with endometriosis and pelvic pain were randomly assigned to treatment with 1 of 2 doses of elagolix (high-dose [200 mg twice daily] and low-dose [150 mg once daily]) or placebo.¹¹ After 3 months of therapy, a clinically meaningful reduction in dysmenorrhea pain was reported by 76%, 46%, and 20% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively (P<.001 for comparisons of elagolix to placebo). After 3 months of therapy, a clinically meaningful reduction in nonmenstrual pain or decreased or stable use of rescue analgesics was reported by 55%, 50%, and 37% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively (P<.01 low-dose elagolix vs placebo and P<.001 high-dose elagolix vs placebo).

Hot flashes that were severe enough to be reported as an adverse event by the study participants were reported by 42%, 24%, and 7% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups. Bone density was measured at baseline and after 6 months of treatment. Lumbar bone density changes were -2.61%, -0.32%, and +0.47% and hip femoral neck bone density changes were -1.89%, -0.39%, and +0.02% in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively.

Another large clinical trial of elagolix for the treatment of pelvic pain caused by endometriosis, Elaris EM-II, involving 817 women, produced results very similar to those reported in Elaris EM-I. The elagolix continuation studies, Elaris EM-III and -IV, demonstrated efficacy and safety of elagolix through 12 months of treatment.¹²

In my 2018 review,¹⁰ I noted that elagolix dose adjustment can be utilized to attempt to achieve maximal pain relief with minimal vasomotor symptoms. Elagolix at 200 mg twice daily produces a mean estradiol concentration of 12 pg/mL, whereas elagolix at 150 mg daily resulted in a mean estradiol concentration of 41 pg/mL.¹³ The estrogen threshold hypothesis posits that in women with endometriosis a stable estradiol concentration of 20 to 30 pg/mL is often associated with decreased pain and fewer vasomotor events.¹⁴ To achieve the target estradiol range of 20 to 30 pg/mL, I often initiate elagolix treatment with 200 mg twice daily. This enables a rapid onset of amenorrhea and a reduction in pelvic pain. Once amenorrhea has been achieved and a decrease in pelvic pain has occurred, I adjust the dose downward to 200 mg twice daily on even calendar days of each month and 200 mg once daily on odd calendar days each month. Some women will have continued pain relief and amenorrhea when the dose is further decreased to 200 mg once daily. If bothersome bleeding recurs and/or pain symptoms increase in severity, the dose can be increased to 200 mg twice daily or an alternating regimen of 200 mg twice daily and 200 mg once daily, every 2 days. An alternative to dose adjustment is to combine elagolix with NEA, which can reduce the severity of hot flashes and reduce bone loss caused by hypoestrogenism.^15,16

Health insurers and pharmacy benefits managers may require a prior authorization before approving and dispensing elagolix. The prior authorization process can be burdensome for clinicians, consuming limited healthcare resources, contributing to burnout and frustrating patients.¹⁷ Elagolix is less expensive than depot-leuprolide acetate and nafarelin nasal spray and somewhat more expensive than a goserelin implant.^18,19

Elagolix is not approved as a contraceptive. In the Elaris EM-I and -II trials women were advised to use 2 forms of contraception, although pregnancies did occur. There were 6 pregnancies among 475 women taking elagolix 150 mg daily and 2 pregnancies among 477 women taking elagolix 200 mg twice daily.²⁰ Women taking elagolix should be advised to use a contraceptive, but not an estrogen-progestin contraceptive.

Continue to: Do not use opioids to treat chronic pelvic pain caused by endometriosis...

Do not use opioids to treat chronic pelvic pain caused by endometriosis

One of the greatest public health tragedies of our era is the opioid misuse epidemic. Hundreds of thousands of deaths have been caused by opioid misuse. The Centers for Disease Control and Prevention reported that for the 12-month period ending in May 2020, there were 81,000 opioid-related deaths, the greatest number ever reported in a 12-month period.²¹ Many authorities believe that in the United States opioid medications have been over-prescribed, contributing to the opioid misuse epidemic. There is little evidence that chronic pelvic pain is optimally managed by chronic treatment with an opioid.^22,23 Prescribing opioids to vulnerable individuals to treat chronic pelvic pain may result in opioid dependency and adversely affect the patient’s health. It is best to pledge not to prescribe an opioid medication for a woman with chronic pelvic pain caused by endometriosis. In situations when pelvic pain is difficult to control with hormonal therapy and nonopioid pain medications, referral to a specialty pain practice may be warranted.

Post–conservative surgery hormone treatment reduces pelvic pain recurrence

In a meta-analysis of 14 studies that reported on endometriosis recurrence rates following conservative surgery, recurrence (defined as recurrent pelvic pain or an imaging study showing recurrent endometriosis) was significantly reduced with the use of hormone treatment compared with expectant management or placebo treatment.²⁴ The postoperative relative risk of endometriosis recurrence was reduced by 83% with progestin treatment, 64% with estrogen-progestin contraceptive treatment, and 38% with GnRH analogue treatment. Overall, the number of patients that needed to be treated to prevent one endometriosis recurrence was 10, assuming a recurrence rate of 25% in the placebo treatment or expectant management groups.

For women with pelvic pain caused by endometriosis who develop a recurrence of pelvic pain while on postoperative hormone treatment, it is important for the prescribing clinician to be flexible and consider changing the hormone regimen. For example, if a postoperative patient is treated with a continuous estrogen-progestin contraceptive and develops recurrent pain, I will stop the contraceptive and initiate treatment with either NEA or elagolix.

Capitalize on opportunities to improve the medical care of women with endometriosis

Early diagnosis of endometriosis can be facilitated by recognizing that the condition is a common cause of moderate to severe dysmenorrhea. In 5 studies involving 1,187 women, the mean length of time from onset of pelvic pain symptoms to diagnosis of endometriosis was 8.6 years.²⁵ If a woman with pelvic pain caused by endometriosis has not had sufficient pain relief with one brand of continuous estrogen-progestin contraceptive, it is best not to prescribe an alternative brand but rather to switch to a progestin-only treatment or a GnRH antagonist. If plan A is not working, move expeditiously to plan B. ●

Women with endometriosis often present for medical care for one or more of the following health issues: pelvic pain, infertility, and/or an adnexal cyst (endometrioma). For women with moderate or severe pelvic pain and laparoscopically diagnosed endometriosis, hormone therapy is often necessary to achieve maximal long-term reduction in pain and optimize health. I focus on opportunities to optimize hormonal treatment of endometriosis in this editorial.

When plan A is not working, move expeditiously to plan B

Cyclic or continuous combination estrogen-progestin contraceptives are commonly prescribed to treat pelvic pain caused by endometriosis. Although endometriosis pain may initially improve with estrogen-progestin contraceptives, many women on this medication will eventually report that they have worsening pelvic pain that adversely impacts their daily activities. Surprisingly, clinicians often continue to prescribe estrogen-progestin contraceptives even after the patient reports that the treatment is not effective, and their pain continues to be bothersome.

Patients benefit when they have access to the full range of hormone treatments that have been approved by the FDA for the treatment of moderate to severe pelvic pain caused by endometriosis (TABLE). In the situation where an estrogen-progestin contraceptive is no longer effective at reducing the pelvic pain, I will often offer the patient the option of norethindrone acetate (NEA) or elagolix treatment. My experience is that stopping the estrogen-progestin contraceptive and starting NEA or elagolix will result in a significant decrease in pain symptoms and improvement in the patient’s quality of life.

Continue to: Norethindrone acetate...

 

 

Norethindrone acetate

NEA 5 mg daily is approved by the FDA to treat endometriosis.¹ NEA was approved at a time when large controlled clinical trials were not routinely required for a medicine to be approved. The data to support NEA treatment of pelvic pain caused by endometriosis is based on cohort studies. In a study of 194 women, median age 21 years with moderate to severe pelvic pain and surgically proven endometriosis, the effect of NEA on pelvic pain was explored.² The initial dose of NEA was 5 mg daily. If the patient did not achieve a reduction in pelvic pain and amenorrhea on the NEA dose of 5 mg daily, the dose was increased by 2.5 mg every 2 weeks, up to a maximum of 15 mg, until amenorrhea and/or a decrease in pelvic pain was achieved. Ninety-five percent of the women in this cohort had previously been treated with an estrogen-progestin contraceptive or a GnRH antagonist and had discontinued those medications because of inadequate control of pelvic pain or because of side effects of the medication.

In this large cohort, 65% of women reported significant improvement in pelvic pain, with a median pain score of 5 before treatment and 0 following NEA treatment. About 55% of the women reported no side effects. The most commonly reported side effects were weight gain (16%; mean weight gain, 3.1 kg), acne (10%), mood lability (9%), hot flashes (8%), depression (6%), scalp hair loss (4%), headache (4%), nausea (3%), and deepening of the voice (1%). (In this study women could report more than one side effect.)

In another cohort study of 52 women with pelvic pain and surgically confirmed endometriosis, NEA treatment resulted in pain relief in 94% of the women.³ Breakthrough bleeding was a common side effect, reported by 58% of participants. The investigators concluded that NEA treatment was a “cost-effective alternative with relatively mild side effects in the treatment of symptomatic endometriosis.” A conclusion which I endorse.

NEA has been reported to effectively treat ovarian endometriomas and rectovaginal endometriosis.^4,5 In a cohort of 18 women who had previously had the surgical resection of an ovarian endometriosis cyst and had postoperative recurrence of pelvic pain and ovarian endometriosis, treatment was initiated with an escalating NEA regimen.⁴ Treatment was initiated with NEA 5 mg daily, with the dosage increased every 2 weeks by 2.5 mg until amenorrhea was established. Most women achieved amenorrhea with NEA 5 mg daily, and 89% had reduced pelvic pain. The investigators reported complete regression of the endometriosis cyst(s) in 74% of the women. In my experience, NEA does not result in complete regression of endometriosis cysts, but it does cause a reduction in cyst diameter and total volume.

In a retrospective cohort study, 61 women with pelvic pain and rectovaginal endometriosis had 5 years of treatment with NEA 2.5 mg or 5.0 mg daily.⁵ NEA treatment resulted in a decrease in dysmenorrhea, deep dyspareunia, and dyschezia. The most common side effects attributed to NEA treatment were weight gain (30%), vaginal bleeding (23%), decreased libido (11%), headache (9%), bloating or swelling (8%), depression (7%), and acne (5%). In women who had sequential imaging studies, NEA treatment resulted in a decrease in rectovaginal lesion volume, stable disease volume, or an increase in lesion volume in 56%, 32%, and 12% of the women, respectively. The investigators concluded that for women with rectovaginal endometriosis, NEA treatment is a low-cost option for long-term treatment.

In my practice, I do not prescribe NEA at doses greater than 5 mg daily. There are case reports that NEA at a dose of ≥10 mg daily is associated with the development of a hepatic adenoma,⁶ elevated liver transaminase concentration,⁷ and jaundice.⁸ If NEA 5 mg daily is not effective in controlling pelvic pain caused by endometriosis, I stop the NEA and start a GnRH analogue, most often elagolix.

NEA 5 mg is not FDA approved as a contraceptive. However, norethindrone 0.35 mg daily, also known as the “mini-pill”, is approved as a progestin-only contraceptive.⁹ NEA is rapidly and completely deacetylated to norethindrone, and the disposition of oral NEA is indistinguishable from that of norethindrone.¹ Since norethindrone 0.35 mg daily is approved as a contraceptive, it is highly likely that NEA 5 mg has contraceptive properties if taken daily.

Continue to: Elagolix...

Elagolix

Elagolix is FDA approved for the treatment of pelvic pain caused by endometriosis. I reviewed the key studies resulting in FDA approval in the November 2018 issue of OBG Management.¹⁰

In the Elaris Endometriosis-I study, 872 women with endometriosis and pelvic pain were randomly assigned to treatment with 1 of 2 doses of elagolix (high-dose [200 mg twice daily] and low-dose [150 mg once daily]) or placebo.¹¹ After 3 months of therapy, a clinically meaningful reduction in dysmenorrhea pain was reported by 76%, 46%, and 20% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively (P<.001 for comparisons of elagolix to placebo). After 3 months of therapy, a clinically meaningful reduction in nonmenstrual pain or decreased or stable use of rescue analgesics was reported by 55%, 50%, and 37% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively (P<.01 low-dose elagolix vs placebo and P<.001 high-dose elagolix vs placebo).

Hot flashes that were severe enough to be reported as an adverse event by the study participants were reported by 42%, 24%, and 7% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups. Bone density was measured at baseline and after 6 months of treatment. Lumbar bone density changes were -2.61%, -0.32%, and +0.47% and hip femoral neck bone density changes were -1.89%, -0.39%, and +0.02% in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively.

Another large clinical trial of elagolix for the treatment of pelvic pain caused by endometriosis, Elaris EM-II, involving 817 women, produced results very similar to those reported in Elaris EM-I. The elagolix continuation studies, Elaris EM-III and -IV, demonstrated efficacy and safety of elagolix through 12 months of treatment.¹²

In my 2018 review,¹⁰ I noted that elagolix dose adjustment can be utilized to attempt to achieve maximal pain relief with minimal vasomotor symptoms. Elagolix at 200 mg twice daily produces a mean estradiol concentration of 12 pg/mL, whereas elagolix at 150 mg daily resulted in a mean estradiol concentration of 41 pg/mL.¹³ The estrogen threshold hypothesis posits that in women with endometriosis a stable estradiol concentration of 20 to 30 pg/mL is often associated with decreased pain and fewer vasomotor events.¹⁴ To achieve the target estradiol range of 20 to 30 pg/mL, I often initiate elagolix treatment with 200 mg twice daily. This enables a rapid onset of amenorrhea and a reduction in pelvic pain. Once amenorrhea has been achieved and a decrease in pelvic pain has occurred, I adjust the dose downward to 200 mg twice daily on even calendar days of each month and 200 mg once daily on odd calendar days each month. Some women will have continued pain relief and amenorrhea when the dose is further decreased to 200 mg once daily. If bothersome bleeding recurs and/or pain symptoms increase in severity, the dose can be increased to 200 mg twice daily or an alternating regimen of 200 mg twice daily and 200 mg once daily, every 2 days. An alternative to dose adjustment is to combine elagolix with NEA, which can reduce the severity of hot flashes and reduce bone loss caused by hypoestrogenism.^15,16

Health insurers and pharmacy benefits managers may require a prior authorization before approving and dispensing elagolix. The prior authorization process can be burdensome for clinicians, consuming limited healthcare resources, contributing to burnout and frustrating patients.¹⁷ Elagolix is less expensive than depot-leuprolide acetate and nafarelin nasal spray and somewhat more expensive than a goserelin implant.^18,19

Elagolix is not approved as a contraceptive. In the Elaris EM-I and -II trials women were advised to use 2 forms of contraception, although pregnancies did occur. There were 6 pregnancies among 475 women taking elagolix 150 mg daily and 2 pregnancies among 477 women taking elagolix 200 mg twice daily.²⁰ Women taking elagolix should be advised to use a contraceptive, but not an estrogen-progestin contraceptive.

Continue to: Do not use opioids to treat chronic pelvic pain caused by endometriosis...

Do not use opioids to treat chronic pelvic pain caused by endometriosis

One of the greatest public health tragedies of our era is the opioid misuse epidemic. Hundreds of thousands of deaths have been caused by opioid misuse. The Centers for Disease Control and Prevention reported that for the 12-month period ending in May 2020, there were 81,000 opioid-related deaths, the greatest number ever reported in a 12-month period.²¹ Many authorities believe that in the United States opioid medications have been over-prescribed, contributing to the opioid misuse epidemic. There is little evidence that chronic pelvic pain is optimally managed by chronic treatment with an opioid.^22,23 Prescribing opioids to vulnerable individuals to treat chronic pelvic pain may result in opioid dependency and adversely affect the patient’s health. It is best to pledge not to prescribe an opioid medication for a woman with chronic pelvic pain caused by endometriosis. In situations when pelvic pain is difficult to control with hormonal therapy and nonopioid pain medications, referral to a specialty pain practice may be warranted.

Post–conservative surgery hormone treatment reduces pelvic pain recurrence

In a meta-analysis of 14 studies that reported on endometriosis recurrence rates following conservative surgery, recurrence (defined as recurrent pelvic pain or an imaging study showing recurrent endometriosis) was significantly reduced with the use of hormone treatment compared with expectant management or placebo treatment.²⁴ The postoperative relative risk of endometriosis recurrence was reduced by 83% with progestin treatment, 64% with estrogen-progestin contraceptive treatment, and 38% with GnRH analogue treatment. Overall, the number of patients that needed to be treated to prevent one endometriosis recurrence was 10, assuming a recurrence rate of 25% in the placebo treatment or expectant management groups.

For women with pelvic pain caused by endometriosis who develop a recurrence of pelvic pain while on postoperative hormone treatment, it is important for the prescribing clinician to be flexible and consider changing the hormone regimen. For example, if a postoperative patient is treated with a continuous estrogen-progestin contraceptive and develops recurrent pain, I will stop the contraceptive and initiate treatment with either NEA or elagolix.

Capitalize on opportunities to improve the medical care of women with endometriosis

Early diagnosis of endometriosis can be facilitated by recognizing that the condition is a common cause of moderate to severe dysmenorrhea. In 5 studies involving 1,187 women, the mean length of time from onset of pelvic pain symptoms to diagnosis of endometriosis was 8.6 years.²⁵ If a woman with pelvic pain caused by endometriosis has not had sufficient pain relief with one brand of continuous estrogen-progestin contraceptive, it is best not to prescribe an alternative brand but rather to switch to a progestin-only treatment or a GnRH antagonist. If plan A is not working, move expeditiously to plan B. ●

Women with endometriosis often present for medical care for one or more of the following health issues: pelvic pain, infertility, and/or an adnexal cyst (endometrioma). For women with moderate or severe pelvic pain and laparoscopically diagnosed endometriosis, hormone therapy is often necessary to achieve maximal long-term reduction in pain and optimize health. I focus on opportunities to optimize hormonal treatment of endometriosis in this editorial.

When plan A is not working, move expeditiously to plan B

Cyclic or continuous combination estrogen-progestin contraceptives are commonly prescribed to treat pelvic pain caused by endometriosis. Although endometriosis pain may initially improve with estrogen-progestin contraceptives, many women on this medication will eventually report that they have worsening pelvic pain that adversely impacts their daily activities. Surprisingly, clinicians often continue to prescribe estrogen-progestin contraceptives even after the patient reports that the treatment is not effective, and their pain continues to be bothersome.

Patients benefit when they have access to the full range of hormone treatments that have been approved by the FDA for the treatment of moderate to severe pelvic pain caused by endometriosis (TABLE). In the situation where an estrogen-progestin contraceptive is no longer effective at reducing the pelvic pain, I will often offer the patient the option of norethindrone acetate (NEA) or elagolix treatment. My experience is that stopping the estrogen-progestin contraceptive and starting NEA or elagolix will result in a significant decrease in pain symptoms and improvement in the patient’s quality of life.

Continue to: Norethindrone acetate...

 

 

Norethindrone acetate

NEA 5 mg daily is approved by the FDA to treat endometriosis.¹ NEA was approved at a time when large controlled clinical trials were not routinely required for a medicine to be approved. The data to support NEA treatment of pelvic pain caused by endometriosis is based on cohort studies. In a study of 194 women, median age 21 years with moderate to severe pelvic pain and surgically proven endometriosis, the effect of NEA on pelvic pain was explored.² The initial dose of NEA was 5 mg daily. If the patient did not achieve a reduction in pelvic pain and amenorrhea on the NEA dose of 5 mg daily, the dose was increased by 2.5 mg every 2 weeks, up to a maximum of 15 mg, until amenorrhea and/or a decrease in pelvic pain was achieved. Ninety-five percent of the women in this cohort had previously been treated with an estrogen-progestin contraceptive or a GnRH antagonist and had discontinued those medications because of inadequate control of pelvic pain or because of side effects of the medication.

In this large cohort, 65% of women reported significant improvement in pelvic pain, with a median pain score of 5 before treatment and 0 following NEA treatment. About 55% of the women reported no side effects. The most commonly reported side effects were weight gain (16%; mean weight gain, 3.1 kg), acne (10%), mood lability (9%), hot flashes (8%), depression (6%), scalp hair loss (4%), headache (4%), nausea (3%), and deepening of the voice (1%). (In this study women could report more than one side effect.)

In another cohort study of 52 women with pelvic pain and surgically confirmed endometriosis, NEA treatment resulted in pain relief in 94% of the women.³ Breakthrough bleeding was a common side effect, reported by 58% of participants. The investigators concluded that NEA treatment was a “cost-effective alternative with relatively mild side effects in the treatment of symptomatic endometriosis.” A conclusion which I endorse.

NEA has been reported to effectively treat ovarian endometriomas and rectovaginal endometriosis.^4,5 In a cohort of 18 women who had previously had the surgical resection of an ovarian endometriosis cyst and had postoperative recurrence of pelvic pain and ovarian endometriosis, treatment was initiated with an escalating NEA regimen.⁴ Treatment was initiated with NEA 5 mg daily, with the dosage increased every 2 weeks by 2.5 mg until amenorrhea was established. Most women achieved amenorrhea with NEA 5 mg daily, and 89% had reduced pelvic pain. The investigators reported complete regression of the endometriosis cyst(s) in 74% of the women. In my experience, NEA does not result in complete regression of endometriosis cysts, but it does cause a reduction in cyst diameter and total volume.

In a retrospective cohort study, 61 women with pelvic pain and rectovaginal endometriosis had 5 years of treatment with NEA 2.5 mg or 5.0 mg daily.⁵ NEA treatment resulted in a decrease in dysmenorrhea, deep dyspareunia, and dyschezia. The most common side effects attributed to NEA treatment were weight gain (30%), vaginal bleeding (23%), decreased libido (11%), headache (9%), bloating or swelling (8%), depression (7%), and acne (5%). In women who had sequential imaging studies, NEA treatment resulted in a decrease in rectovaginal lesion volume, stable disease volume, or an increase in lesion volume in 56%, 32%, and 12% of the women, respectively. The investigators concluded that for women with rectovaginal endometriosis, NEA treatment is a low-cost option for long-term treatment.

In my practice, I do not prescribe NEA at doses greater than 5 mg daily. There are case reports that NEA at a dose of ≥10 mg daily is associated with the development of a hepatic adenoma,⁶ elevated liver transaminase concentration,⁷ and jaundice.⁸ If NEA 5 mg daily is not effective in controlling pelvic pain caused by endometriosis, I stop the NEA and start a GnRH analogue, most often elagolix.

NEA 5 mg is not FDA approved as a contraceptive. However, norethindrone 0.35 mg daily, also known as the “mini-pill”, is approved as a progestin-only contraceptive.⁹ NEA is rapidly and completely deacetylated to norethindrone, and the disposition of oral NEA is indistinguishable from that of norethindrone.¹ Since norethindrone 0.35 mg daily is approved as a contraceptive, it is highly likely that NEA 5 mg has contraceptive properties if taken daily.

Continue to: Elagolix...

Elagolix

Elagolix is FDA approved for the treatment of pelvic pain caused by endometriosis. I reviewed the key studies resulting in FDA approval in the November 2018 issue of OBG Management.¹⁰

In the Elaris Endometriosis-I study, 872 women with endometriosis and pelvic pain were randomly assigned to treatment with 1 of 2 doses of elagolix (high-dose [200 mg twice daily] and low-dose [150 mg once daily]) or placebo.¹¹ After 3 months of therapy, a clinically meaningful reduction in dysmenorrhea pain was reported by 76%, 46%, and 20% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively (P<.001 for comparisons of elagolix to placebo). After 3 months of therapy, a clinically meaningful reduction in nonmenstrual pain or decreased or stable use of rescue analgesics was reported by 55%, 50%, and 37% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively (P<.01 low-dose elagolix vs placebo and P<.001 high-dose elagolix vs placebo).

Hot flashes that were severe enough to be reported as an adverse event by the study participants were reported by 42%, 24%, and 7% of the women in the high-dose elagolix, low-dose elagolix, and placebo groups. Bone density was measured at baseline and after 6 months of treatment. Lumbar bone density changes were -2.61%, -0.32%, and +0.47% and hip femoral neck bone density changes were -1.89%, -0.39%, and +0.02% in the high-dose elagolix, low-dose elagolix, and placebo groups, respectively.

Another large clinical trial of elagolix for the treatment of pelvic pain caused by endometriosis, Elaris EM-II, involving 817 women, produced results very similar to those reported in Elaris EM-I. The elagolix continuation studies, Elaris EM-III and -IV, demonstrated efficacy and safety of elagolix through 12 months of treatment.¹²

In my 2018 review,¹⁰ I noted that elagolix dose adjustment can be utilized to attempt to achieve maximal pain relief with minimal vasomotor symptoms. Elagolix at 200 mg twice daily produces a mean estradiol concentration of 12 pg/mL, whereas elagolix at 150 mg daily resulted in a mean estradiol concentration of 41 pg/mL.¹³ The estrogen threshold hypothesis posits that in women with endometriosis a stable estradiol concentration of 20 to 30 pg/mL is often associated with decreased pain and fewer vasomotor events.¹⁴ To achieve the target estradiol range of 20 to 30 pg/mL, I often initiate elagolix treatment with 200 mg twice daily. This enables a rapid onset of amenorrhea and a reduction in pelvic pain. Once amenorrhea has been achieved and a decrease in pelvic pain has occurred, I adjust the dose downward to 200 mg twice daily on even calendar days of each month and 200 mg once daily on odd calendar days each month. Some women will have continued pain relief and amenorrhea when the dose is further decreased to 200 mg once daily. If bothersome bleeding recurs and/or pain symptoms increase in severity, the dose can be increased to 200 mg twice daily or an alternating regimen of 200 mg twice daily and 200 mg once daily, every 2 days. An alternative to dose adjustment is to combine elagolix with NEA, which can reduce the severity of hot flashes and reduce bone loss caused by hypoestrogenism.^15,16

Health insurers and pharmacy benefits managers may require a prior authorization before approving and dispensing elagolix. The prior authorization process can be burdensome for clinicians, consuming limited healthcare resources, contributing to burnout and frustrating patients.¹⁷ Elagolix is less expensive than depot-leuprolide acetate and nafarelin nasal spray and somewhat more expensive than a goserelin implant.^18,19

Elagolix is not approved as a contraceptive. In the Elaris EM-I and -II trials women were advised to use 2 forms of contraception, although pregnancies did occur. There were 6 pregnancies among 475 women taking elagolix 150 mg daily and 2 pregnancies among 477 women taking elagolix 200 mg twice daily.²⁰ Women taking elagolix should be advised to use a contraceptive, but not an estrogen-progestin contraceptive.

Continue to: Do not use opioids to treat chronic pelvic pain caused by endometriosis...

Do not use opioids to treat chronic pelvic pain caused by endometriosis

One of the greatest public health tragedies of our era is the opioid misuse epidemic. Hundreds of thousands of deaths have been caused by opioid misuse. The Centers for Disease Control and Prevention reported that for the 12-month period ending in May 2020, there were 81,000 opioid-related deaths, the greatest number ever reported in a 12-month period.²¹ Many authorities believe that in the United States opioid medications have been over-prescribed, contributing to the opioid misuse epidemic. There is little evidence that chronic pelvic pain is optimally managed by chronic treatment with an opioid.^22,23 Prescribing opioids to vulnerable individuals to treat chronic pelvic pain may result in opioid dependency and adversely affect the patient’s health. It is best to pledge not to prescribe an opioid medication for a woman with chronic pelvic pain caused by endometriosis. In situations when pelvic pain is difficult to control with hormonal therapy and nonopioid pain medications, referral to a specialty pain practice may be warranted.

Post–conservative surgery hormone treatment reduces pelvic pain recurrence

In a meta-analysis of 14 studies that reported on endometriosis recurrence rates following conservative surgery, recurrence (defined as recurrent pelvic pain or an imaging study showing recurrent endometriosis) was significantly reduced with the use of hormone treatment compared with expectant management or placebo treatment.²⁴ The postoperative relative risk of endometriosis recurrence was reduced by 83% with progestin treatment, 64% with estrogen-progestin contraceptive treatment, and 38% with GnRH analogue treatment. Overall, the number of patients that needed to be treated to prevent one endometriosis recurrence was 10, assuming a recurrence rate of 25% in the placebo treatment or expectant management groups.

For women with pelvic pain caused by endometriosis who develop a recurrence of pelvic pain while on postoperative hormone treatment, it is important for the prescribing clinician to be flexible and consider changing the hormone regimen. For example, if a postoperative patient is treated with a continuous estrogen-progestin contraceptive and develops recurrent pain, I will stop the contraceptive and initiate treatment with either NEA or elagolix.

Capitalize on opportunities to improve the medical care of women with endometriosis

Early diagnosis of endometriosis can be facilitated by recognizing that the condition is a common cause of moderate to severe dysmenorrhea. In 5 studies involving 1,187 women, the mean length of time from onset of pelvic pain symptoms to diagnosis of endometriosis was 8.6 years.²⁵ If a woman with pelvic pain caused by endometriosis has not had sufficient pain relief with one brand of continuous estrogen-progestin contraceptive, it is best not to prescribe an alternative brand but rather to switch to a progestin-only treatment or a GnRH antagonist. If plan A is not working, move expeditiously to plan B. ●

Darier disease (DD)(also known as dyskeratosis follicularis) is a rare, autosomal-dominant genodermatosis characterized by greasy, rough, keratotic papules; typical nail abnormalities; mucosal changes; and characteristic dyskeratotic acantholysis that is called corps ronds and grains on histopathologic analysis. Darier disease is caused by mutations of the ATP2A2 gene on chromosome 12q23-24.^1,2

Because of the autosomal-dominant pattern of inheritance in DD, if either parent is affected by DD, approximately 50% of their offspring will have the disorder. Therefore, couples need to be offered genetic counseling at a preconception visit or early in pregnancy. Although penetrance of DD is complete, spontaneous mutations are frequent and expressivity is variable¹; prenatal diagnosis, though available since the 1980s, is therefore unreliable in DD, given the considerable variation in phenotypic expressivity. Differing phenotypes underscore the importance of proper counseling by the treating dermatologist or other provider. Females with a mild or nearly undetectable phenotype can give birth to a child with severe disease.

Lack of clear understanding about the variable phenotypic expressivity of DD can cause considerable anger, anxiety, guilt, psychological trauma, and fear in parents, should their child later develop a severe phenotype. They may feel that they were not properly prepared for the outcome. The physician-parent or physician-patient relationship can be negatively impacted if ongoing counseling is inadequate.

Clinically, DD presents in early adolescence (age range, 6–20 years) in most patients, which means that the disease and female reproductive years are contemporaneous. However, gynecologic and obstetric issues and complications of DD rarely have been addressed.³ Oromucosal involvement in DD is reported in 13% to 50% of cases, yet vaginal and cervical mucosal involvement rarely has been described,^4,5 likely due to underreporting. Therefore, in this rare disease, it is important to address these aspects so that the patients are provided with appropriate management options.

Implications for Cervical Screening and Papanicolaou Tests

Cytopathologic findings of a Papanicolaou test taken from a patient with DD can lead to erroneous diagnosis of a low-grade squamous intraepithelial lesion due to cervical involvement by the disease process; therefore, correct interpretation of a smear may be inappropriate and erroneous. The cytopathologist needs to be informed of the patient’s diagnosis of DD in advance for appropriate reporting.^5,6

Obstetric Implications

Fertility is normal in DD patients, and pregnancy usually has a normal course; however, exacerbation and remission of disease have been reported. de la Rosa Carrillo⁷ reported a case of vegetating DD during pregnancy. He described it as an exacerbation with concurrent bacterial infection and bilateral external otitis.⁷ Spouge et al⁸ reported a case of a 58-year-old woman who was the mother of 4 DD patients. She experienced an exacerbation of DD during all 6 pregnancies but improved immediately postpartum.⁸ Espy et al⁹ evaluated 8 cases of women with DD and described spontaneous improvement of the disorder during pregnancy (1 case) or while taking an oral contraceptive (3 cases).

Prenatal Counseling

Women with DD should be encouraged to talk to their dermatologist, obstetrician, or other provider of prenatal care regarding plans for pregnancy, labor, and delivery, as these events might be affected by the disorder. During pregnancy, careful monitoring and self-care remain essential. Simple measures to reduce the impact of irritants on DD during pregnancy include keeping the skin cool, using a soothing moisturizer, applying photoprotection, and using sunscreen. Treatment with systemic retinoids must be avoided if pregnancy is planned.

Warty plaques and papules of DD can involve flexures (groin, vulva, and perineum), with resultant malodor and pruritus¹⁰ as well as the potential for (drug resistant) secondary infection (eg, Staphylococcus aureus, group B Streptococcus, viruses [eg, Kaposi varicelliform eruption]). Skin swabs should be taken for culture and susceptibility testing, and infection should be treated at the earliest sign.

Management Concerns During Pregnancy and Delivery

Because the benefits of treating DD might outweigh risk in certain cases, thorough discussion with the patient about options is recommended, including the following concerns:

• Because mucocutaneous elasticity of the birth canal, including the vulva, perineum, and groin, is essential for nontraumatic vaginal delivery, it might be necessary to schedule an elective cesarean delivery in DD patients in whom these regions are involved.¹¹

• In females with lower abdominal lesions, using a Pfannenstiel-Kerr incision for cesarean delivery might be problematic.¹¹

• A single case report has described successful anesthetic management of labor, delivery, and postpartum care in a DD patient.¹² Involvement of the skin of the back might preclude safe administration of regional anesthesia; however, because DD lesions are considered noninfectious, the authors operatively administered a subarachnoid block at the L3-L4 interspace through a lesion-free area. Postpartum, the patient was observed in the intensive care unit. She and the baby remained stable; she did not develop infectious complications, including a central nervous system infection.¹²

•Mucosal involvement is relatively rare in DD and has not been reported to compromise airway management.⁸

Postnatal Considerations

Breastfeeding might have to be stopped early or withheld altogether if there is widespread involvement of the skin of the breast or the nipple.¹¹ Darier disease has been associated with neuropsychiatric manifestations, including major depression (30%), suicide attempts (13%), suicidal thoughts (31%), cyclothymia, bipolar disorder (4%), and epilepsy (3%).^13,14 Therefore, patients should be screened for postpartum psychiatric manifestations at an early follow-up visit.

Final Thoughts

Although the etiology of DD is well known, the gynelogic and obstretric implications of this genodermatosis have rarely been described. This brief commentary is an attempt to provide the important information to a practicing dermatologist for appropriate management of female DD patients.

Darier disease (DD)(also known as dyskeratosis follicularis) is a rare, autosomal-dominant genodermatosis characterized by greasy, rough, keratotic papules; typical nail abnormalities; mucosal changes; and characteristic dyskeratotic acantholysis that is called corps ronds and grains on histopathologic analysis. Darier disease is caused by mutations of the ATP2A2 gene on chromosome 12q23-24.^1,2

Because of the autosomal-dominant pattern of inheritance in DD, if either parent is affected by DD, approximately 50% of their offspring will have the disorder. Therefore, couples need to be offered genetic counseling at a preconception visit or early in pregnancy. Although penetrance of DD is complete, spontaneous mutations are frequent and expressivity is variable¹; prenatal diagnosis, though available since the 1980s, is therefore unreliable in DD, given the considerable variation in phenotypic expressivity. Differing phenotypes underscore the importance of proper counseling by the treating dermatologist or other provider. Females with a mild or nearly undetectable phenotype can give birth to a child with severe disease.

Lack of clear understanding about the variable phenotypic expressivity of DD can cause considerable anger, anxiety, guilt, psychological trauma, and fear in parents, should their child later develop a severe phenotype. They may feel that they were not properly prepared for the outcome. The physician-parent or physician-patient relationship can be negatively impacted if ongoing counseling is inadequate.

Clinically, DD presents in early adolescence (age range, 6–20 years) in most patients, which means that the disease and female reproductive years are contemporaneous. However, gynecologic and obstetric issues and complications of DD rarely have been addressed.³ Oromucosal involvement in DD is reported in 13% to 50% of cases, yet vaginal and cervical mucosal involvement rarely has been described,^4,5 likely due to underreporting. Therefore, in this rare disease, it is important to address these aspects so that the patients are provided with appropriate management options.

Implications for Cervical Screening and Papanicolaou Tests

Cytopathologic findings of a Papanicolaou test taken from a patient with DD can lead to erroneous diagnosis of a low-grade squamous intraepithelial lesion due to cervical involvement by the disease process; therefore, correct interpretation of a smear may be inappropriate and erroneous. The cytopathologist needs to be informed of the patient’s diagnosis of DD in advance for appropriate reporting.^5,6

Obstetric Implications

Fertility is normal in DD patients, and pregnancy usually has a normal course; however, exacerbation and remission of disease have been reported. de la Rosa Carrillo⁷ reported a case of vegetating DD during pregnancy. He described it as an exacerbation with concurrent bacterial infection and bilateral external otitis.⁷ Spouge et al⁸ reported a case of a 58-year-old woman who was the mother of 4 DD patients. She experienced an exacerbation of DD during all 6 pregnancies but improved immediately postpartum.⁸ Espy et al⁹ evaluated 8 cases of women with DD and described spontaneous improvement of the disorder during pregnancy (1 case) or while taking an oral contraceptive (3 cases).

Prenatal Counseling

Women with DD should be encouraged to talk to their dermatologist, obstetrician, or other provider of prenatal care regarding plans for pregnancy, labor, and delivery, as these events might be affected by the disorder. During pregnancy, careful monitoring and self-care remain essential. Simple measures to reduce the impact of irritants on DD during pregnancy include keeping the skin cool, using a soothing moisturizer, applying photoprotection, and using sunscreen. Treatment with systemic retinoids must be avoided if pregnancy is planned.

Warty plaques and papules of DD can involve flexures (groin, vulva, and perineum), with resultant malodor and pruritus¹⁰ as well as the potential for (drug resistant) secondary infection (eg, Staphylococcus aureus, group B Streptococcus, viruses [eg, Kaposi varicelliform eruption]). Skin swabs should be taken for culture and susceptibility testing, and infection should be treated at the earliest sign.

Management Concerns During Pregnancy and Delivery

Because the benefits of treating DD might outweigh risk in certain cases, thorough discussion with the patient about options is recommended, including the following concerns:

• Because mucocutaneous elasticity of the birth canal, including the vulva, perineum, and groin, is essential for nontraumatic vaginal delivery, it might be necessary to schedule an elective cesarean delivery in DD patients in whom these regions are involved.¹¹

• In females with lower abdominal lesions, using a Pfannenstiel-Kerr incision for cesarean delivery might be problematic.¹¹

• A single case report has described successful anesthetic management of labor, delivery, and postpartum care in a DD patient.¹² Involvement of the skin of the back might preclude safe administration of regional anesthesia; however, because DD lesions are considered noninfectious, the authors operatively administered a subarachnoid block at the L3-L4 interspace through a lesion-free area. Postpartum, the patient was observed in the intensive care unit. She and the baby remained stable; she did not develop infectious complications, including a central nervous system infection.¹²

•Mucosal involvement is relatively rare in DD and has not been reported to compromise airway management.⁸

Postnatal Considerations

Breastfeeding might have to be stopped early or withheld altogether if there is widespread involvement of the skin of the breast or the nipple.¹¹ Darier disease has been associated with neuropsychiatric manifestations, including major depression (30%), suicide attempts (13%), suicidal thoughts (31%), cyclothymia, bipolar disorder (4%), and epilepsy (3%).^13,14 Therefore, patients should be screened for postpartum psychiatric manifestations at an early follow-up visit.

Final Thoughts

Although the etiology of DD is well known, the gynelogic and obstretric implications of this genodermatosis have rarely been described. This brief commentary is an attempt to provide the important information to a practicing dermatologist for appropriate management of female DD patients.

Darier disease (DD)(also known as dyskeratosis follicularis) is a rare, autosomal-dominant genodermatosis characterized by greasy, rough, keratotic papules; typical nail abnormalities; mucosal changes; and characteristic dyskeratotic acantholysis that is called corps ronds and grains on histopathologic analysis. Darier disease is caused by mutations of the ATP2A2 gene on chromosome 12q23-24.^1,2

Because of the autosomal-dominant pattern of inheritance in DD, if either parent is affected by DD, approximately 50% of their offspring will have the disorder. Therefore, couples need to be offered genetic counseling at a preconception visit or early in pregnancy. Although penetrance of DD is complete, spontaneous mutations are frequent and expressivity is variable¹; prenatal diagnosis, though available since the 1980s, is therefore unreliable in DD, given the considerable variation in phenotypic expressivity. Differing phenotypes underscore the importance of proper counseling by the treating dermatologist or other provider. Females with a mild or nearly undetectable phenotype can give birth to a child with severe disease.

Lack of clear understanding about the variable phenotypic expressivity of DD can cause considerable anger, anxiety, guilt, psychological trauma, and fear in parents, should their child later develop a severe phenotype. They may feel that they were not properly prepared for the outcome. The physician-parent or physician-patient relationship can be negatively impacted if ongoing counseling is inadequate.

Clinically, DD presents in early adolescence (age range, 6–20 years) in most patients, which means that the disease and female reproductive years are contemporaneous. However, gynecologic and obstetric issues and complications of DD rarely have been addressed.³ Oromucosal involvement in DD is reported in 13% to 50% of cases, yet vaginal and cervical mucosal involvement rarely has been described,^4,5 likely due to underreporting. Therefore, in this rare disease, it is important to address these aspects so that the patients are provided with appropriate management options.

Implications for Cervical Screening and Papanicolaou Tests

Cytopathologic findings of a Papanicolaou test taken from a patient with DD can lead to erroneous diagnosis of a low-grade squamous intraepithelial lesion due to cervical involvement by the disease process; therefore, correct interpretation of a smear may be inappropriate and erroneous. The cytopathologist needs to be informed of the patient’s diagnosis of DD in advance for appropriate reporting.^5,6

Obstetric Implications

Fertility is normal in DD patients, and pregnancy usually has a normal course; however, exacerbation and remission of disease have been reported. de la Rosa Carrillo⁷ reported a case of vegetating DD during pregnancy. He described it as an exacerbation with concurrent bacterial infection and bilateral external otitis.⁷ Spouge et al⁸ reported a case of a 58-year-old woman who was the mother of 4 DD patients. She experienced an exacerbation of DD during all 6 pregnancies but improved immediately postpartum.⁸ Espy et al⁹ evaluated 8 cases of women with DD and described spontaneous improvement of the disorder during pregnancy (1 case) or while taking an oral contraceptive (3 cases).

Prenatal Counseling

Women with DD should be encouraged to talk to their dermatologist, obstetrician, or other provider of prenatal care regarding plans for pregnancy, labor, and delivery, as these events might be affected by the disorder. During pregnancy, careful monitoring and self-care remain essential. Simple measures to reduce the impact of irritants on DD during pregnancy include keeping the skin cool, using a soothing moisturizer, applying photoprotection, and using sunscreen. Treatment with systemic retinoids must be avoided if pregnancy is planned.

Warty plaques and papules of DD can involve flexures (groin, vulva, and perineum), with resultant malodor and pruritus¹⁰ as well as the potential for (drug resistant) secondary infection (eg, Staphylococcus aureus, group B Streptococcus, viruses [eg, Kaposi varicelliform eruption]). Skin swabs should be taken for culture and susceptibility testing, and infection should be treated at the earliest sign.

Management Concerns During Pregnancy and Delivery

Because the benefits of treating DD might outweigh risk in certain cases, thorough discussion with the patient about options is recommended, including the following concerns:

• Because mucocutaneous elasticity of the birth canal, including the vulva, perineum, and groin, is essential for nontraumatic vaginal delivery, it might be necessary to schedule an elective cesarean delivery in DD patients in whom these regions are involved.¹¹

• In females with lower abdominal lesions, using a Pfannenstiel-Kerr incision for cesarean delivery might be problematic.¹¹

• A single case report has described successful anesthetic management of labor, delivery, and postpartum care in a DD patient.¹² Involvement of the skin of the back might preclude safe administration of regional anesthesia; however, because DD lesions are considered noninfectious, the authors operatively administered a subarachnoid block at the L3-L4 interspace through a lesion-free area. Postpartum, the patient was observed in the intensive care unit. She and the baby remained stable; she did not develop infectious complications, including a central nervous system infection.¹²

•Mucosal involvement is relatively rare in DD and has not been reported to compromise airway management.⁸

Postnatal Considerations

Breastfeeding might have to be stopped early or withheld altogether if there is widespread involvement of the skin of the breast or the nipple.¹¹ Darier disease has been associated with neuropsychiatric manifestations, including major depression (30%), suicide attempts (13%), suicidal thoughts (31%), cyclothymia, bipolar disorder (4%), and epilepsy (3%).^13,14 Therefore, patients should be screened for postpartum psychiatric manifestations at an early follow-up visit.

Final Thoughts

Although the etiology of DD is well known, the gynelogic and obstretric implications of this genodermatosis have rarely been described. This brief commentary is an attempt to provide the important information to a practicing dermatologist for appropriate management of female DD patients.

Reading the excellent article on urine drug screening by Drs. Hayes and Fox reminds me of 2 important aspects of primary care: (1) Diagnosing and treating patients with drug addiction is an important service we provide, and (2) interpreting laboratory tests requires training, skill, and clinical judgment.

Drs. Hayes and Fox describe the proper use of urine drug testing in the management of patients for whom we prescribe opioids, whether for chronic pain or for addiction treatment. Combining a review of the literature with their own professional experience treating these patients, Drs. Hayes and Fox highlight the potential pitfalls in interpreting urine drug screening results and admonish us to use good clinical judgment in applying those results to patient care. They emphasize the need to avoid racial bias and blaming the patient.

Use of cheap street fentanyl, rather than prescription drugs, accounts for nearly all of the increase in opioid overdose deaths.

This article is very timely because, amidst the COVID-19 pandemic, the opioid epidemic has continued unabated. The most recent data from the National Center for Health Statistics shows that the estimated number of opioid overdose deaths increased by a whopping 32%, from 47,772 for the 1-year period ending August 2019 to 62,972 for the 1-year period ending August 2020.¹ Although this increase began in fall 2019, there can be little doubt that the COVID-19 pandemic is partly responsible. A positive sign, however, is that opioid prescribing in the United States is trending downward, reaching its lowest level in 14 years in 2019.² In fact, use of cheap street fentanyl, rather than prescription drugs, accounts for nearly all of the increase in opioid overdose deaths.¹

Despite this positive news, the number of deaths associated with opioid use remains sobering. The statistics continue to underscore the fact that there simply are not enough addiction treatment centers to manage all of those who need and want help. All primary care physicians are eligible to prescribe suboxone to treat patients with opioid addiction—a treatment that can be highly effective in reducing the use of street opioids and, therefore, reducing deaths from overdose. Fewer than 10% of primary care physicians prescribed suboxone in 2017.³ I hope that more of you will take the required training and become involved in assisting your patients who struggle with opioid addiction.

Reading the excellent article on urine drug screening by Drs. Hayes and Fox reminds me of 2 important aspects of primary care: (1) Diagnosing and treating patients with drug addiction is an important service we provide, and (2) interpreting laboratory tests requires training, skill, and clinical judgment.

Drs. Hayes and Fox describe the proper use of urine drug testing in the management of patients for whom we prescribe opioids, whether for chronic pain or for addiction treatment. Combining a review of the literature with their own professional experience treating these patients, Drs. Hayes and Fox highlight the potential pitfalls in interpreting urine drug screening results and admonish us to use good clinical judgment in applying those results to patient care. They emphasize the need to avoid racial bias and blaming the patient.

Use of cheap street fentanyl, rather than prescription drugs, accounts for nearly all of the increase in opioid overdose deaths.

This article is very timely because, amidst the COVID-19 pandemic, the opioid epidemic has continued unabated. The most recent data from the National Center for Health Statistics shows that the estimated number of opioid overdose deaths increased by a whopping 32%, from 47,772 for the 1-year period ending August 2019 to 62,972 for the 1-year period ending August 2020.¹ Although this increase began in fall 2019, there can be little doubt that the COVID-19 pandemic is partly responsible. A positive sign, however, is that opioid prescribing in the United States is trending downward, reaching its lowest level in 14 years in 2019.² In fact, use of cheap street fentanyl, rather than prescription drugs, accounts for nearly all of the increase in opioid overdose deaths.¹

Despite this positive news, the number of deaths associated with opioid use remains sobering. The statistics continue to underscore the fact that there simply are not enough addiction treatment centers to manage all of those who need and want help. All primary care physicians are eligible to prescribe suboxone to treat patients with opioid addiction—a treatment that can be highly effective in reducing the use of street opioids and, therefore, reducing deaths from overdose. Fewer than 10% of primary care physicians prescribed suboxone in 2017.³ I hope that more of you will take the required training and become involved in assisting your patients who struggle with opioid addiction.

Reading the excellent article on urine drug screening by Drs. Hayes and Fox reminds me of 2 important aspects of primary care: (1) Diagnosing and treating patients with drug addiction is an important service we provide, and (2) interpreting laboratory tests requires training, skill, and clinical judgment.

Drs. Hayes and Fox describe the proper use of urine drug testing in the management of patients for whom we prescribe opioids, whether for chronic pain or for addiction treatment. Combining a review of the literature with their own professional experience treating these patients, Drs. Hayes and Fox highlight the potential pitfalls in interpreting urine drug screening results and admonish us to use good clinical judgment in applying those results to patient care. They emphasize the need to avoid racial bias and blaming the patient.

Use of cheap street fentanyl, rather than prescription drugs, accounts for nearly all of the increase in opioid overdose deaths.

This article is very timely because, amidst the COVID-19 pandemic, the opioid epidemic has continued unabated. The most recent data from the National Center for Health Statistics shows that the estimated number of opioid overdose deaths increased by a whopping 32%, from 47,772 for the 1-year period ending August 2019 to 62,972 for the 1-year period ending August 2020.¹ Although this increase began in fall 2019, there can be little doubt that the COVID-19 pandemic is partly responsible. A positive sign, however, is that opioid prescribing in the United States is trending downward, reaching its lowest level in 14 years in 2019.² In fact, use of cheap street fentanyl, rather than prescription drugs, accounts for nearly all of the increase in opioid overdose deaths.¹

Despite this positive news, the number of deaths associated with opioid use remains sobering. The statistics continue to underscore the fact that there simply are not enough addiction treatment centers to manage all of those who need and want help. All primary care physicians are eligible to prescribe suboxone to treat patients with opioid addiction—a treatment that can be highly effective in reducing the use of street opioids and, therefore, reducing deaths from overdose. Fewer than 10% of primary care physicians prescribed suboxone in 2017.³ I hope that more of you will take the required training and become involved in assisting your patients who struggle with opioid addiction.

People who identify as transgender experience many health disparities, in addition to lack of access to quality care. The most commonly cited barrier is the lack of providers who are knowledgeable about transgender health care, according to past surveys.

Even those who do seek care often have unpleasant experiences. A 2015 survey conducted by the National Center for Transgender Equality found that 33% of those who saw a health care provider reported at least one  unfavorable experience related to being transgender, such as being verbally harassed or refused treatment because of their gender identity. In fact, 23% of those surveyed say they did not seek health care they needed in the past year because of fear of being mistreated as a transgender person.

To find out how physicians can provide more compassionate, effective care for this group, this news organization spoke with K. Ashley Brandt, DO, gender-affirming surgeon and obstetrician/gynecologist in West Reading, Penn. This interview has been edited for length and clarity.

Question: Surveys have shown that many people who identify as transgender will seek only transition care, not primary or preventive care. Why is that?

Dr. Brandt: My answer is multifactorial. Transgender patients do seek primary care – just not as readily. There’s a lot of misconceptions about health care needs for the LGBT community in general. For example, lesbian or bisexual women may be not as well informed about the need for Pap smears compared with their heterosexual counterparts. These misconceptions are further exacerbated in the transgender community.

The fact that a lot of patients seek only transition-related care, but not preventive services, such as primary care and gynecologic care, is also related to fears of discrimination and lack of education of providers. These patients are afraid when they walk into an office that they will be misgendered or their physician won’t be familiar with their health care needs.

What can clinics and clinicians do to create a safe and welcoming environment?

Dr. Brandt: It starts with educating office staff about terminology and gender identities.

A key feature of our EHR is the sexual orientation and gender identity platform, which asks questions about a patient’s gender identity, sexual orientation, sex assigned at birth, and organ inventory. These data are then found in the patient information tab and are just as relevant as their insurance status, age, and date of birth.

There are many ways a doctor’s office can signal to patients that they are inclusive. They can hang LGBTQ-friendly flags or symbols or a sign saying, “We have an anti-discrimination policy” in the waiting room.  A welcoming environment can also be achieved by revising patient questionnaires or forms so that they aren’t gender-specific or binary.

Given that the patient may have limited contact with a primary care clinician, how do you prioritize what you address during the visit?

Dr. Brandt: Similar to cisgender patients, it depends initially on the age of the patient and the reason for the visit. The priorities of an otherwise healthy transgender patient in their 20s are going to be largely the same as for a cisgender patient of the same age. As patients age in the primary care world, you’re addressing more issues, such as colorectal screening, lipid disorders, and mammograms, and that doesn’t change. For the most part, the problems that you address should be specific for that age group.

It becomes more complicated when you add in factors such as hormone therapy and whether patients have had any type of gender-affirming surgery. Those things can change the usual recommendations for screening or risk assessment. We try to figure out what routine health maintenance and cancer screening a patient needs based on age and risk factors, in addition to hormone status and surgical state.

Do you think that many physicians are educated about the care of underserved populations such as transgender patients?

Dr. Brandt: Yes and no. We are definitely getting better at it. For example, the American College of Obstetricians and Gynecologists published a committee opinion highlighting transgender care. So organizations are starting to prioritize these populations and recognize that they are, in fact, underserved and they have special health care needs.

However, the knowledge gaps are still pretty big. I get calls daily from providers asking questions about how to manage patients on hormones, or how to examine a patient who has undergone a vaginoplasty. I hear a lot of horror stories from transgender patients who had their hormones stopped for absurd and medically misinformed reasons.

But I definitely think it’s getting better and it’s being addressed at all levels – the medical school level, the residency level, and the attending level. It just takes time to inform people and for people to get used to the health care needs of these patients.

What should physicians keep in mind when treating patients who identify as transgender?

Dr. Brandt: First and foremost, understanding the terminology and the difference between gender identity, sex, and sexual orientation. Being familiar with that language and being able to speak that language very comfortably and not being awkward about it is a really important thing for primary care physicians and indeed any physician who treats transgender patients.

Physicians should also be aware that any underserved population has higher rates of mental health issues, such as depression and anxiety. Obviously, that goes along with being underserved and the stigma and the disparities that exist for these patients. Having providers educate themselves about what those disparities are and how they impact a patient’s daily life and health is paramount to knowing how to treat patients.

What are your top health concerns for these patients and how do you address them?

Dr. Brandt: I think mental health and safety is probably the number one for me. About 41% of transgender adults have attempted suicide. That number is roughly 51% in transgender youth. That is an astonishing number. These patients have much higher rates of domestic violence, intimate partner violence, and sexual assault, especially trans women and trans women of color. So understanding those statistics is huge.

Obesity, smoking, and substance abuse are my next three. Again, those are things that should be addressed at any visit, regardless of the gender identity or sexual orientation of the patient, but those rates are particularly high in this population.

Fertility and long-term care for patients should be addressed. Many patients who identify as transgender are told they can’t have a family. As a primary care physician, you may see a patient before they are seen by an ob.gyn. or surgeon. Talking about what a patient’s long-term life goals are with fertility and family planning, and what that looks like for them, is a big thing for me. Other providers may not feel that’s a concern, but I believe it should be discussed before initiation of hormone therapy, which can significantly impact fertility in some patients.

Are there nuances to the physical examination that primary care physicians should be aware of when dealing with transmasculine patients vs. transfeminine patients?

Dr. Brandt: Absolutely. And this interview can’t cover the scope of those nuances. An example that comes to mind is the genital exam. For transgender women who have undergone a vaginoplasty, the pelvic exam can be very affirming. Whereas for transgender men, a gynecologic exam can significantly exacerbate dysphoria and there are ways to conduct the exam to limit this discomfort and avoid creating a traumatic experience for the patient. It’s important to be aware that the genital exam, or any type of genitourinary exam, can be either affirming or not affirming.

Sexually transmitted infections are up in the general population, and the trans population is at even higher risk. What should physicians think about when they assess this risk?

Dr. Brandt: It’s really important for primary care clinicians and for gynecologists to learn to be comfortable talking about sexual practices, because what people do behind closed doors is really a key to how to counsel patients about safe sex.

People are well aware of the need to have safe sex. However, depending on the type of sex that you’re having, what body parts go where, what is truly safe can vary and people may not know, for example, to wear a condom when sex toys are involved or that a transgender male on testosterone can become pregnant during penile-vaginal intercourse. Providers really should be very educated on the array of sexual practices that people have and how to counsel them about those. They should know how to ask patients the gender identity of their sexual partners, the sexual orientation of their partners, and what parts go where during sex.

Providers should also talk to patients about PrEP [pre-exposure prophylaxis], whether they identify as cisgender or transgender. My trans patients tend to be a lot more educated about PrEP than other patients. It’s something that many of the residents, even in a standard gynecologic clinic, for example, don’t talk to cisgender patients about because of the stigma surrounding HIV. Many providers still think that the only people who are at risk for HIV are men who have sex with men. And while those rates are higher in some populations, depending on sexual practices, those aren’t the only patients who qualify for PrEP.

Overall, in order to counsel patients about STIs and safe sexual practices, providers should learn to be comfortable talking about sex.

Do you have any strategies on how to make the appointment more successful in addressing those issues?

Dr. Brandt: Bedside manner is a hard thing to teach, and comfort in talking about sex, gender identity, and sexual orientation can vary – but there are a lot of continuing medical education courses that physicians can utilize through the World Professional Association for Transgender Health.

If providers start to notice an influx of patients who identify as transgender or if they want to start seeing transgender patients, it’s really important for them to have that training before they start interacting with patients. In all of medicine, we sort of learn as we go, but this patient population has been subjected to discrimination, violence, error, and misgendering. They have dealt with providers who didn’t understand their health care needs. While this field is evolving, knowing how to appropriately address a patient (using their correct name, pronouns, etc.) is an absolute must.

That needs to be part of a provider’s routine vernacular and not something that they sort of stumble through. You can scare a patient away as soon as they walk into the office with an uneducated front desk staff and things that are seen in the office. Seeking out those educational tools, being aware of your own deficits as a provider and the educational needs of your office, and addressing those needs is really key.

A version of this article first appeared on Medscape.com.

People who identify as transgender experience many health disparities, in addition to lack of access to quality care. The most commonly cited barrier is the lack of providers who are knowledgeable about transgender health care, according to past surveys.

Even those who do seek care often have unpleasant experiences. A 2015 survey conducted by the National Center for Transgender Equality found that 33% of those who saw a health care provider reported at least one  unfavorable experience related to being transgender, such as being verbally harassed or refused treatment because of their gender identity. In fact, 23% of those surveyed say they did not seek health care they needed in the past year because of fear of being mistreated as a transgender person.

To find out how physicians can provide more compassionate, effective care for this group, this news organization spoke with K. Ashley Brandt, DO, gender-affirming surgeon and obstetrician/gynecologist in West Reading, Penn. This interview has been edited for length and clarity.

Question: Surveys have shown that many people who identify as transgender will seek only transition care, not primary or preventive care. Why is that?

Dr. Brandt: My answer is multifactorial. Transgender patients do seek primary care – just not as readily. There’s a lot of misconceptions about health care needs for the LGBT community in general. For example, lesbian or bisexual women may be not as well informed about the need for Pap smears compared with their heterosexual counterparts. These misconceptions are further exacerbated in the transgender community.

The fact that a lot of patients seek only transition-related care, but not preventive services, such as primary care and gynecologic care, is also related to fears of discrimination and lack of education of providers. These patients are afraid when they walk into an office that they will be misgendered or their physician won’t be familiar with their health care needs.

What can clinics and clinicians do to create a safe and welcoming environment?

Dr. Brandt: It starts with educating office staff about terminology and gender identities.

A key feature of our EHR is the sexual orientation and gender identity platform, which asks questions about a patient’s gender identity, sexual orientation, sex assigned at birth, and organ inventory. These data are then found in the patient information tab and are just as relevant as their insurance status, age, and date of birth.

There are many ways a doctor’s office can signal to patients that they are inclusive. They can hang LGBTQ-friendly flags or symbols or a sign saying, “We have an anti-discrimination policy” in the waiting room.  A welcoming environment can also be achieved by revising patient questionnaires or forms so that they aren’t gender-specific or binary.

Given that the patient may have limited contact with a primary care clinician, how do you prioritize what you address during the visit?

Dr. Brandt: Similar to cisgender patients, it depends initially on the age of the patient and the reason for the visit. The priorities of an otherwise healthy transgender patient in their 20s are going to be largely the same as for a cisgender patient of the same age. As patients age in the primary care world, you’re addressing more issues, such as colorectal screening, lipid disorders, and mammograms, and that doesn’t change. For the most part, the problems that you address should be specific for that age group.

It becomes more complicated when you add in factors such as hormone therapy and whether patients have had any type of gender-affirming surgery. Those things can change the usual recommendations for screening or risk assessment. We try to figure out what routine health maintenance and cancer screening a patient needs based on age and risk factors, in addition to hormone status and surgical state.

Do you think that many physicians are educated about the care of underserved populations such as transgender patients?

Dr. Brandt: Yes and no. We are definitely getting better at it. For example, the American College of Obstetricians and Gynecologists published a committee opinion highlighting transgender care. So organizations are starting to prioritize these populations and recognize that they are, in fact, underserved and they have special health care needs.

However, the knowledge gaps are still pretty big. I get calls daily from providers asking questions about how to manage patients on hormones, or how to examine a patient who has undergone a vaginoplasty. I hear a lot of horror stories from transgender patients who had their hormones stopped for absurd and medically misinformed reasons.

But I definitely think it’s getting better and it’s being addressed at all levels – the medical school level, the residency level, and the attending level. It just takes time to inform people and for people to get used to the health care needs of these patients.

What should physicians keep in mind when treating patients who identify as transgender?

Dr. Brandt: First and foremost, understanding the terminology and the difference between gender identity, sex, and sexual orientation. Being familiar with that language and being able to speak that language very comfortably and not being awkward about it is a really important thing for primary care physicians and indeed any physician who treats transgender patients.

Physicians should also be aware that any underserved population has higher rates of mental health issues, such as depression and anxiety. Obviously, that goes along with being underserved and the stigma and the disparities that exist for these patients. Having providers educate themselves about what those disparities are and how they impact a patient’s daily life and health is paramount to knowing how to treat patients.

What are your top health concerns for these patients and how do you address them?

Dr. Brandt: I think mental health and safety is probably the number one for me. About 41% of transgender adults have attempted suicide. That number is roughly 51% in transgender youth. That is an astonishing number. These patients have much higher rates of domestic violence, intimate partner violence, and sexual assault, especially trans women and trans women of color. So understanding those statistics is huge.

Obesity, smoking, and substance abuse are my next three. Again, those are things that should be addressed at any visit, regardless of the gender identity or sexual orientation of the patient, but those rates are particularly high in this population.

Fertility and long-term care for patients should be addressed. Many patients who identify as transgender are told they can’t have a family. As a primary care physician, you may see a patient before they are seen by an ob.gyn. or surgeon. Talking about what a patient’s long-term life goals are with fertility and family planning, and what that looks like for them, is a big thing for me. Other providers may not feel that’s a concern, but I believe it should be discussed before initiation of hormone therapy, which can significantly impact fertility in some patients.

Are there nuances to the physical examination that primary care physicians should be aware of when dealing with transmasculine patients vs. transfeminine patients?

Dr. Brandt: Absolutely. And this interview can’t cover the scope of those nuances. An example that comes to mind is the genital exam. For transgender women who have undergone a vaginoplasty, the pelvic exam can be very affirming. Whereas for transgender men, a gynecologic exam can significantly exacerbate dysphoria and there are ways to conduct the exam to limit this discomfort and avoid creating a traumatic experience for the patient. It’s important to be aware that the genital exam, or any type of genitourinary exam, can be either affirming or not affirming.

Sexually transmitted infections are up in the general population, and the trans population is at even higher risk. What should physicians think about when they assess this risk?

Dr. Brandt: It’s really important for primary care clinicians and for gynecologists to learn to be comfortable talking about sexual practices, because what people do behind closed doors is really a key to how to counsel patients about safe sex.

People are well aware of the need to have safe sex. However, depending on the type of sex that you’re having, what body parts go where, what is truly safe can vary and people may not know, for example, to wear a condom when sex toys are involved or that a transgender male on testosterone can become pregnant during penile-vaginal intercourse. Providers really should be very educated on the array of sexual practices that people have and how to counsel them about those. They should know how to ask patients the gender identity of their sexual partners, the sexual orientation of their partners, and what parts go where during sex.

Providers should also talk to patients about PrEP [pre-exposure prophylaxis], whether they identify as cisgender or transgender. My trans patients tend to be a lot more educated about PrEP than other patients. It’s something that many of the residents, even in a standard gynecologic clinic, for example, don’t talk to cisgender patients about because of the stigma surrounding HIV. Many providers still think that the only people who are at risk for HIV are men who have sex with men. And while those rates are higher in some populations, depending on sexual practices, those aren’t the only patients who qualify for PrEP.

Overall, in order to counsel patients about STIs and safe sexual practices, providers should learn to be comfortable talking about sex.

Do you have any strategies on how to make the appointment more successful in addressing those issues?

Dr. Brandt: Bedside manner is a hard thing to teach, and comfort in talking about sex, gender identity, and sexual orientation can vary – but there are a lot of continuing medical education courses that physicians can utilize through the World Professional Association for Transgender Health.

If providers start to notice an influx of patients who identify as transgender or if they want to start seeing transgender patients, it’s really important for them to have that training before they start interacting with patients. In all of medicine, we sort of learn as we go, but this patient population has been subjected to discrimination, violence, error, and misgendering. They have dealt with providers who didn’t understand their health care needs. While this field is evolving, knowing how to appropriately address a patient (using their correct name, pronouns, etc.) is an absolute must.

That needs to be part of a provider’s routine vernacular and not something that they sort of stumble through. You can scare a patient away as soon as they walk into the office with an uneducated front desk staff and things that are seen in the office. Seeking out those educational tools, being aware of your own deficits as a provider and the educational needs of your office, and addressing those needs is really key.

A version of this article first appeared on Medscape.com.

People who identify as transgender experience many health disparities, in addition to lack of access to quality care. The most commonly cited barrier is the lack of providers who are knowledgeable about transgender health care, according to past surveys.

Even those who do seek care often have unpleasant experiences. A 2015 survey conducted by the National Center for Transgender Equality found that 33% of those who saw a health care provider reported at least one  unfavorable experience related to being transgender, such as being verbally harassed or refused treatment because of their gender identity. In fact, 23% of those surveyed say they did not seek health care they needed in the past year because of fear of being mistreated as a transgender person.

To find out how physicians can provide more compassionate, effective care for this group, this news organization spoke with K. Ashley Brandt, DO, gender-affirming surgeon and obstetrician/gynecologist in West Reading, Penn. This interview has been edited for length and clarity.

Question: Surveys have shown that many people who identify as transgender will seek only transition care, not primary or preventive care. Why is that?

Dr. Brandt: My answer is multifactorial. Transgender patients do seek primary care – just not as readily. There’s a lot of misconceptions about health care needs for the LGBT community in general. For example, lesbian or bisexual women may be not as well informed about the need for Pap smears compared with their heterosexual counterparts. These misconceptions are further exacerbated in the transgender community.

The fact that a lot of patients seek only transition-related care, but not preventive services, such as primary care and gynecologic care, is also related to fears of discrimination and lack of education of providers. These patients are afraid when they walk into an office that they will be misgendered or their physician won’t be familiar with their health care needs.

What can clinics and clinicians do to create a safe and welcoming environment?

Dr. Brandt: It starts with educating office staff about terminology and gender identities.

A key feature of our EHR is the sexual orientation and gender identity platform, which asks questions about a patient’s gender identity, sexual orientation, sex assigned at birth, and organ inventory. These data are then found in the patient information tab and are just as relevant as their insurance status, age, and date of birth.

There are many ways a doctor’s office can signal to patients that they are inclusive. They can hang LGBTQ-friendly flags or symbols or a sign saying, “We have an anti-discrimination policy” in the waiting room.  A welcoming environment can also be achieved by revising patient questionnaires or forms so that they aren’t gender-specific or binary.

Given that the patient may have limited contact with a primary care clinician, how do you prioritize what you address during the visit?

Dr. Brandt: Similar to cisgender patients, it depends initially on the age of the patient and the reason for the visit. The priorities of an otherwise healthy transgender patient in their 20s are going to be largely the same as for a cisgender patient of the same age. As patients age in the primary care world, you’re addressing more issues, such as colorectal screening, lipid disorders, and mammograms, and that doesn’t change. For the most part, the problems that you address should be specific for that age group.

It becomes more complicated when you add in factors such as hormone therapy and whether patients have had any type of gender-affirming surgery. Those things can change the usual recommendations for screening or risk assessment. We try to figure out what routine health maintenance and cancer screening a patient needs based on age and risk factors, in addition to hormone status and surgical state.

Do you think that many physicians are educated about the care of underserved populations such as transgender patients?

Dr. Brandt: Yes and no. We are definitely getting better at it. For example, the American College of Obstetricians and Gynecologists published a committee opinion highlighting transgender care. So organizations are starting to prioritize these populations and recognize that they are, in fact, underserved and they have special health care needs.

However, the knowledge gaps are still pretty big. I get calls daily from providers asking questions about how to manage patients on hormones, or how to examine a patient who has undergone a vaginoplasty. I hear a lot of horror stories from transgender patients who had their hormones stopped for absurd and medically misinformed reasons.

But I definitely think it’s getting better and it’s being addressed at all levels – the medical school level, the residency level, and the attending level. It just takes time to inform people and for people to get used to the health care needs of these patients.

What should physicians keep in mind when treating patients who identify as transgender?

Dr. Brandt: First and foremost, understanding the terminology and the difference between gender identity, sex, and sexual orientation. Being familiar with that language and being able to speak that language very comfortably and not being awkward about it is a really important thing for primary care physicians and indeed any physician who treats transgender patients.

Physicians should also be aware that any underserved population has higher rates of mental health issues, such as depression and anxiety. Obviously, that goes along with being underserved and the stigma and the disparities that exist for these patients. Having providers educate themselves about what those disparities are and how they impact a patient’s daily life and health is paramount to knowing how to treat patients.

What are your top health concerns for these patients and how do you address them?

Dr. Brandt: I think mental health and safety is probably the number one for me. About 41% of transgender adults have attempted suicide. That number is roughly 51% in transgender youth. That is an astonishing number. These patients have much higher rates of domestic violence, intimate partner violence, and sexual assault, especially trans women and trans women of color. So understanding those statistics is huge.

Obesity, smoking, and substance abuse are my next three. Again, those are things that should be addressed at any visit, regardless of the gender identity or sexual orientation of the patient, but those rates are particularly high in this population.

Fertility and long-term care for patients should be addressed. Many patients who identify as transgender are told they can’t have a family. As a primary care physician, you may see a patient before they are seen by an ob.gyn. or surgeon. Talking about what a patient’s long-term life goals are with fertility and family planning, and what that looks like for them, is a big thing for me. Other providers may not feel that’s a concern, but I believe it should be discussed before initiation of hormone therapy, which can significantly impact fertility in some patients.

Are there nuances to the physical examination that primary care physicians should be aware of when dealing with transmasculine patients vs. transfeminine patients?

Dr. Brandt: Absolutely. And this interview can’t cover the scope of those nuances. An example that comes to mind is the genital exam. For transgender women who have undergone a vaginoplasty, the pelvic exam can be very affirming. Whereas for transgender men, a gynecologic exam can significantly exacerbate dysphoria and there are ways to conduct the exam to limit this discomfort and avoid creating a traumatic experience for the patient. It’s important to be aware that the genital exam, or any type of genitourinary exam, can be either affirming or not affirming.

Sexually transmitted infections are up in the general population, and the trans population is at even higher risk. What should physicians think about when they assess this risk?

Dr. Brandt: It’s really important for primary care clinicians and for gynecologists to learn to be comfortable talking about sexual practices, because what people do behind closed doors is really a key to how to counsel patients about safe sex.

People are well aware of the need to have safe sex. However, depending on the type of sex that you’re having, what body parts go where, what is truly safe can vary and people may not know, for example, to wear a condom when sex toys are involved or that a transgender male on testosterone can become pregnant during penile-vaginal intercourse. Providers really should be very educated on the array of sexual practices that people have and how to counsel them about those. They should know how to ask patients the gender identity of their sexual partners, the sexual orientation of their partners, and what parts go where during sex.

Providers should also talk to patients about PrEP [pre-exposure prophylaxis], whether they identify as cisgender or transgender. My trans patients tend to be a lot more educated about PrEP than other patients. It’s something that many of the residents, even in a standard gynecologic clinic, for example, don’t talk to cisgender patients about because of the stigma surrounding HIV. Many providers still think that the only people who are at risk for HIV are men who have sex with men. And while those rates are higher in some populations, depending on sexual practices, those aren’t the only patients who qualify for PrEP.

Overall, in order to counsel patients about STIs and safe sexual practices, providers should learn to be comfortable talking about sex.

Do you have any strategies on how to make the appointment more successful in addressing those issues?

Dr. Brandt: Bedside manner is a hard thing to teach, and comfort in talking about sex, gender identity, and sexual orientation can vary – but there are a lot of continuing medical education courses that physicians can utilize through the World Professional Association for Transgender Health.

If providers start to notice an influx of patients who identify as transgender or if they want to start seeing transgender patients, it’s really important for them to have that training before they start interacting with patients. In all of medicine, we sort of learn as we go, but this patient population has been subjected to discrimination, violence, error, and misgendering. They have dealt with providers who didn’t understand their health care needs. While this field is evolving, knowing how to appropriately address a patient (using their correct name, pronouns, etc.) is an absolute must.

That needs to be part of a provider’s routine vernacular and not something that they sort of stumble through. You can scare a patient away as soon as they walk into the office with an uneducated front desk staff and things that are seen in the office. Seeking out those educational tools, being aware of your own deficits as a provider and the educational needs of your office, and addressing those needs is really key.

A version of this article first appeared on Medscape.com.