Opinion

Preventing infant mortality remains a significant challenge for ob.gyns. Despite the availability of a multitude of preventive and treatment options and some of the best possible medical care offered in the world, the United States lags behind many other developed and developing countries in its rate of infant deaths, which was an estimated 5.8 deaths per 1,000 live births in 2017. We can, and must, do better.

One of the major contributing factors to infant mortality is preterm birth. Defined as birth occurring prior to 37 weeks’ gestation, preterm birth is associated with a myriad of severe neonatal sequelae: low birth weight, bacterial sepsis, neonatal hemorrhage, and respiratory distress syndrome, among others. Therefore, many within the clinical and biomedical research spheres recognize that preventing preterm birth means reducing infant deaths.

However, therein lies the conundrum. We know very little about what causes preterm birth, which renders the current therapeutic strategies – such as use of progesterone supplements or cerclage placement – good for some but not all patients. It is thus vital to continue research to unravel the underlying mechanisms of preterm birth.

A promising area of investigation is the field of microbiome research, which has made great strides in advancing our awareness of the critical role of the millions of organisms living on and within us in maintaining health and fighting disease. For example, we now realize that eradicating all the commensals in our gastrointestinal tract has unintended and very negative consequences and, for patients whose good bacteria have been eliminated, fecal transplant is a therapeutic option. Therefore, it stands to reason that the microbes found in the vagina contribute significantly to women’s overall reproductive health.

The publication of the groundbreaking study characterizing the vaginal microbiome species in reproductive-age women opened new avenues of research into how these organisms contribute to women’s health. Importantly, this work, led initially by Jacques Ravel, PhD, a professor in the department of microbiology & immunology and associate director of the Institute for Genome Sciences at the University of Maryland School of Medicine, has spawned additional investigations into the potential role of the vaginal microbiome in preterm birth.

To provide some insight into the research around how the microorganisms in the vagina may induce or prevent preterm birth is our guest author, Michal A. Elovitz, MD, the Hilarie L. Morgan and Mitchell L. Morgan President’s Distinguished Professor in Women’s Health, vice chair of translational research, and director of the Maternal and Child Health Research Center, department of obstetrics and gynecology, at the University of Pennsylvania, Philadelphia.

Dr. Reece, who specializes in maternal-fetal medicine, is executive vice president for medical affairs at the University of Maryland School of Medicine as well as the John Z. and Akiko K. Bowers Distinguished Professor and dean of the school of medicine. He is the medical editor of this column. He said he had no relevant financial disclosures. Contact him at obnews@mdedge.com.

Preventing infant mortality remains a significant challenge for ob.gyns. Despite the availability of a multitude of preventive and treatment options and some of the best possible medical care offered in the world, the United States lags behind many other developed and developing countries in its rate of infant deaths, which was an estimated 5.8 deaths per 1,000 live births in 2017. We can, and must, do better.

One of the major contributing factors to infant mortality is preterm birth. Defined as birth occurring prior to 37 weeks’ gestation, preterm birth is associated with a myriad of severe neonatal sequelae: low birth weight, bacterial sepsis, neonatal hemorrhage, and respiratory distress syndrome, among others. Therefore, many within the clinical and biomedical research spheres recognize that preventing preterm birth means reducing infant deaths.

However, therein lies the conundrum. We know very little about what causes preterm birth, which renders the current therapeutic strategies – such as use of progesterone supplements or cerclage placement – good for some but not all patients. It is thus vital to continue research to unravel the underlying mechanisms of preterm birth.

A promising area of investigation is the field of microbiome research, which has made great strides in advancing our awareness of the critical role of the millions of organisms living on and within us in maintaining health and fighting disease. For example, we now realize that eradicating all the commensals in our gastrointestinal tract has unintended and very negative consequences and, for patients whose good bacteria have been eliminated, fecal transplant is a therapeutic option. Therefore, it stands to reason that the microbes found in the vagina contribute significantly to women’s overall reproductive health.

The publication of the groundbreaking study characterizing the vaginal microbiome species in reproductive-age women opened new avenues of research into how these organisms contribute to women’s health. Importantly, this work, led initially by Jacques Ravel, PhD, a professor in the department of microbiology & immunology and associate director of the Institute for Genome Sciences at the University of Maryland School of Medicine, has spawned additional investigations into the potential role of the vaginal microbiome in preterm birth.

To provide some insight into the research around how the microorganisms in the vagina may induce or prevent preterm birth is our guest author, Michal A. Elovitz, MD, the Hilarie L. Morgan and Mitchell L. Morgan President’s Distinguished Professor in Women’s Health, vice chair of translational research, and director of the Maternal and Child Health Research Center, department of obstetrics and gynecology, at the University of Pennsylvania, Philadelphia.

Dr. Reece, who specializes in maternal-fetal medicine, is executive vice president for medical affairs at the University of Maryland School of Medicine as well as the John Z. and Akiko K. Bowers Distinguished Professor and dean of the school of medicine. He is the medical editor of this column. He said he had no relevant financial disclosures. Contact him at obnews@mdedge.com.

Preventing infant mortality remains a significant challenge for ob.gyns. Despite the availability of a multitude of preventive and treatment options and some of the best possible medical care offered in the world, the United States lags behind many other developed and developing countries in its rate of infant deaths, which was an estimated 5.8 deaths per 1,000 live births in 2017. We can, and must, do better.

One of the major contributing factors to infant mortality is preterm birth. Defined as birth occurring prior to 37 weeks’ gestation, preterm birth is associated with a myriad of severe neonatal sequelae: low birth weight, bacterial sepsis, neonatal hemorrhage, and respiratory distress syndrome, among others. Therefore, many within the clinical and biomedical research spheres recognize that preventing preterm birth means reducing infant deaths.

However, therein lies the conundrum. We know very little about what causes preterm birth, which renders the current therapeutic strategies – such as use of progesterone supplements or cerclage placement – good for some but not all patients. It is thus vital to continue research to unravel the underlying mechanisms of preterm birth.

A promising area of investigation is the field of microbiome research, which has made great strides in advancing our awareness of the critical role of the millions of organisms living on and within us in maintaining health and fighting disease. For example, we now realize that eradicating all the commensals in our gastrointestinal tract has unintended and very negative consequences and, for patients whose good bacteria have been eliminated, fecal transplant is a therapeutic option. Therefore, it stands to reason that the microbes found in the vagina contribute significantly to women’s overall reproductive health.

The publication of the groundbreaking study characterizing the vaginal microbiome species in reproductive-age women opened new avenues of research into how these organisms contribute to women’s health. Importantly, this work, led initially by Jacques Ravel, PhD, a professor in the department of microbiology & immunology and associate director of the Institute for Genome Sciences at the University of Maryland School of Medicine, has spawned additional investigations into the potential role of the vaginal microbiome in preterm birth.

To provide some insight into the research around how the microorganisms in the vagina may induce or prevent preterm birth is our guest author, Michal A. Elovitz, MD, the Hilarie L. Morgan and Mitchell L. Morgan President’s Distinguished Professor in Women’s Health, vice chair of translational research, and director of the Maternal and Child Health Research Center, department of obstetrics and gynecology, at the University of Pennsylvania, Philadelphia.

Dr. Reece, who specializes in maternal-fetal medicine, is executive vice president for medical affairs at the University of Maryland School of Medicine as well as the John Z. and Akiko K. Bowers Distinguished Professor and dean of the school of medicine. He is the medical editor of this column. He said he had no relevant financial disclosures. Contact him at obnews@mdedge.com.

While preparing to write this technology column, I received a great deal of insight from the unlikeliest of sources: my mother-in-law.

Now don’t get me wrong – she’s a truly lovely, intelligent, and capable woman. I have sought her advice often on many things and have always been impressed by her wisdom and pragmatism, but I’ve just never thought of asking her for her opinion on medicine or technology, as I considered her knowledge of both subjects to be limited.

This occasion changed my opinion. In fact, I believe that, as health care IT becomes more complex, people like my mother-in-law may be exactly who we should be looking to for answers.

A few weeks ago, my mother-in-law and I were discussing her recent trip to the doctor. When she mentioned some lab tests, I suggested that we log in to her patient portal to view the results. This elicited several questions and a declaration of frustration.

“Which portal?” she asked. “I have so many and can’t keep all of the websites and passwords straight! Why can’t all of my doctors use the same portal, and why do they all have different password requirements?”

As she spoke these words, I was immediately struck with an unfortunate reality of EHRs: We have done a brilliant job creating state-of-the-art digital castles and have filled them with the data needed to revolutionize care and improve population health – but we haven’t given our patients the keys to get inside.

We must ask ourselves if, in trying to construct fortresses of information around our patients, we have lost sight of the individuals in the center. I believe that we can answer this question and improve the benefits of patient portals, but we all must agree to a few simple steps to streamline the experience for everyone.
 

Make it easy

A study recently published in the Journal of General Internal Medicine surveyed several hospitals on their usage of patient portals. After determining whether or not the institutions had such portals, the authors then investigated to find out what, if any, guidance was provided to patients about how to use them.

Their findings are frustrating, though not surprising. While 89% of hospitals had some form of patient portal, only 65% of those “had links that were easily found, defined as links accessible within two clicks from the home page.”

Furthermore, even in cases where portals were easily found, good instructions on how to use them were missing. Those instructions that did exist centered on rules and restrictions and laying out “terms and conditions” and informing patients on “what not to do,” rather than explaining how to make the most of the experience.

According to the authors, “this focus on curtailing behavior, and the hurdles placed on finding and understanding guidance, suggest that some hospitals may be prioritizing reducing liability over improving the patient experience with portals.”

If we want our patients to use them, portals must be easy to access and intuitive to use. They also must provide value.
 

Make it meaningful

Patient portals have proliferated exponentially over the last 10 years, thanks to government incentive programs. One such program, known as “meaningful use,” is primarily responsible for this, as it made implementation of a patient portal one of its core requirements.

Sadly, in spite of its oft-reviled name, the meaningful use program never defined patient-friendly standards of usability for patient portals. As a result, current portals just aren’t very good. Patients like my mother-in-law find them to be too numerous, too unfriendly to use, and too limited, so they are not being used to their full potential.

In fact, many institutions may choose not to enable all of the available features in order to limit technical issues and reduce the burden on providers. In the study referenced above, only 63% of portals offered the ability for patients to communicate directly with their physicians, and only 43% offered the ability to refill prescriptions.

When enabled, these functions improve patient engagement and efficiency. Without them, patients are less likely to log on, and physicians are forced to rely on less-efficient telephone calls or traditional letters to communicate results to their patients.
 

Put the patient, not the portal, at the center

History has all but forgotten the attempts by tech giants such as Google and Microsoft to create personal health records. While these initially seemed like a wonderful concept, they sadly proved to be a total flop. Some patients embraced the idea, but security concerns and the lack of buy-in from EHR vendors significantly limited their uptake.

They may simply have been ahead of their time.

A decade later, wearable technology and telemedicine are ushering in a new era of patient-centric care. Individuals have been embracing a greater share of the responsibility for their own personal health information, yet most EHRs lack the ability to easily incorporate data acquired outside physicians’ offices.

It’s time for EHR vendors to go all in and change that. Instead of enslaving patients to the tyranny of fragmented health records, they should prioritize the creation of a robust, standardized, and portable health record that travels with the patient, not the other way around.

Have any other ideas on how to improve patient engagement? We’d love to hear about them and share them in a future column.

If you want to contribute but don’t have any ideas, we have a suggestion: Ask your mother-in-law. You may be surprised at what you learn!

Dr. Notte is a family physician and associate chief medical information officer for Abington (Pa.) Hospital–Jefferson Health. Follow him on twitter (@doctornotte). Dr. Skolnik is professor of family and community medicine at Sidney Kimmel Medical College, Philadelphia, and associate director of the family medicine residency program at Abington Hospital–Jefferson Health.

Reference

Lee JL et al. J Gen Intern Med. 2019 Nov 12. doi: 10.1007/s11606-019-05528-z.

While preparing to write this technology column, I received a great deal of insight from the unlikeliest of sources: my mother-in-law.

Now don’t get me wrong – she’s a truly lovely, intelligent, and capable woman. I have sought her advice often on many things and have always been impressed by her wisdom and pragmatism, but I’ve just never thought of asking her for her opinion on medicine or technology, as I considered her knowledge of both subjects to be limited.

This occasion changed my opinion. In fact, I believe that, as health care IT becomes more complex, people like my mother-in-law may be exactly who we should be looking to for answers.

A few weeks ago, my mother-in-law and I were discussing her recent trip to the doctor. When she mentioned some lab tests, I suggested that we log in to her patient portal to view the results. This elicited several questions and a declaration of frustration.

“Which portal?” she asked. “I have so many and can’t keep all of the websites and passwords straight! Why can’t all of my doctors use the same portal, and why do they all have different password requirements?”

As she spoke these words, I was immediately struck with an unfortunate reality of EHRs: We have done a brilliant job creating state-of-the-art digital castles and have filled them with the data needed to revolutionize care and improve population health – but we haven’t given our patients the keys to get inside.

We must ask ourselves if, in trying to construct fortresses of information around our patients, we have lost sight of the individuals in the center. I believe that we can answer this question and improve the benefits of patient portals, but we all must agree to a few simple steps to streamline the experience for everyone.
 

Make it easy

A study recently published in the Journal of General Internal Medicine surveyed several hospitals on their usage of patient portals. After determining whether or not the institutions had such portals, the authors then investigated to find out what, if any, guidance was provided to patients about how to use them.

Their findings are frustrating, though not surprising. While 89% of hospitals had some form of patient portal, only 65% of those “had links that were easily found, defined as links accessible within two clicks from the home page.”

Furthermore, even in cases where portals were easily found, good instructions on how to use them were missing. Those instructions that did exist centered on rules and restrictions and laying out “terms and conditions” and informing patients on “what not to do,” rather than explaining how to make the most of the experience.

According to the authors, “this focus on curtailing behavior, and the hurdles placed on finding and understanding guidance, suggest that some hospitals may be prioritizing reducing liability over improving the patient experience with portals.”

If we want our patients to use them, portals must be easy to access and intuitive to use. They also must provide value.
 

Make it meaningful

Patient portals have proliferated exponentially over the last 10 years, thanks to government incentive programs. One such program, known as “meaningful use,” is primarily responsible for this, as it made implementation of a patient portal one of its core requirements.

Sadly, in spite of its oft-reviled name, the meaningful use program never defined patient-friendly standards of usability for patient portals. As a result, current portals just aren’t very good. Patients like my mother-in-law find them to be too numerous, too unfriendly to use, and too limited, so they are not being used to their full potential.

In fact, many institutions may choose not to enable all of the available features in order to limit technical issues and reduce the burden on providers. In the study referenced above, only 63% of portals offered the ability for patients to communicate directly with their physicians, and only 43% offered the ability to refill prescriptions.

When enabled, these functions improve patient engagement and efficiency. Without them, patients are less likely to log on, and physicians are forced to rely on less-efficient telephone calls or traditional letters to communicate results to their patients.
 

Put the patient, not the portal, at the center

History has all but forgotten the attempts by tech giants such as Google and Microsoft to create personal health records. While these initially seemed like a wonderful concept, they sadly proved to be a total flop. Some patients embraced the idea, but security concerns and the lack of buy-in from EHR vendors significantly limited their uptake.

They may simply have been ahead of their time.

A decade later, wearable technology and telemedicine are ushering in a new era of patient-centric care. Individuals have been embracing a greater share of the responsibility for their own personal health information, yet most EHRs lack the ability to easily incorporate data acquired outside physicians’ offices.

It’s time for EHR vendors to go all in and change that. Instead of enslaving patients to the tyranny of fragmented health records, they should prioritize the creation of a robust, standardized, and portable health record that travels with the patient, not the other way around.

Have any other ideas on how to improve patient engagement? We’d love to hear about them and share them in a future column.

If you want to contribute but don’t have any ideas, we have a suggestion: Ask your mother-in-law. You may be surprised at what you learn!

Dr. Notte is a family physician and associate chief medical information officer for Abington (Pa.) Hospital–Jefferson Health. Follow him on twitter (@doctornotte). Dr. Skolnik is professor of family and community medicine at Sidney Kimmel Medical College, Philadelphia, and associate director of the family medicine residency program at Abington Hospital–Jefferson Health.

Reference

Lee JL et al. J Gen Intern Med. 2019 Nov 12. doi: 10.1007/s11606-019-05528-z.

While preparing to write this technology column, I received a great deal of insight from the unlikeliest of sources: my mother-in-law.

Now don’t get me wrong – she’s a truly lovely, intelligent, and capable woman. I have sought her advice often on many things and have always been impressed by her wisdom and pragmatism, but I’ve just never thought of asking her for her opinion on medicine or technology, as I considered her knowledge of both subjects to be limited.

This occasion changed my opinion. In fact, I believe that, as health care IT becomes more complex, people like my mother-in-law may be exactly who we should be looking to for answers.

A few weeks ago, my mother-in-law and I were discussing her recent trip to the doctor. When she mentioned some lab tests, I suggested that we log in to her patient portal to view the results. This elicited several questions and a declaration of frustration.

“Which portal?” she asked. “I have so many and can’t keep all of the websites and passwords straight! Why can’t all of my doctors use the same portal, and why do they all have different password requirements?”

As she spoke these words, I was immediately struck with an unfortunate reality of EHRs: We have done a brilliant job creating state-of-the-art digital castles and have filled them with the data needed to revolutionize care and improve population health – but we haven’t given our patients the keys to get inside.

We must ask ourselves if, in trying to construct fortresses of information around our patients, we have lost sight of the individuals in the center. I believe that we can answer this question and improve the benefits of patient portals, but we all must agree to a few simple steps to streamline the experience for everyone.
 

Make it easy

A study recently published in the Journal of General Internal Medicine surveyed several hospitals on their usage of patient portals. After determining whether or not the institutions had such portals, the authors then investigated to find out what, if any, guidance was provided to patients about how to use them.

Their findings are frustrating, though not surprising. While 89% of hospitals had some form of patient portal, only 65% of those “had links that were easily found, defined as links accessible within two clicks from the home page.”

Furthermore, even in cases where portals were easily found, good instructions on how to use them were missing. Those instructions that did exist centered on rules and restrictions and laying out “terms and conditions” and informing patients on “what not to do,” rather than explaining how to make the most of the experience.

According to the authors, “this focus on curtailing behavior, and the hurdles placed on finding and understanding guidance, suggest that some hospitals may be prioritizing reducing liability over improving the patient experience with portals.”

If we want our patients to use them, portals must be easy to access and intuitive to use. They also must provide value.
 

Make it meaningful

Patient portals have proliferated exponentially over the last 10 years, thanks to government incentive programs. One such program, known as “meaningful use,” is primarily responsible for this, as it made implementation of a patient portal one of its core requirements.

Sadly, in spite of its oft-reviled name, the meaningful use program never defined patient-friendly standards of usability for patient portals. As a result, current portals just aren’t very good. Patients like my mother-in-law find them to be too numerous, too unfriendly to use, and too limited, so they are not being used to their full potential.

In fact, many institutions may choose not to enable all of the available features in order to limit technical issues and reduce the burden on providers. In the study referenced above, only 63% of portals offered the ability for patients to communicate directly with their physicians, and only 43% offered the ability to refill prescriptions.

When enabled, these functions improve patient engagement and efficiency. Without them, patients are less likely to log on, and physicians are forced to rely on less-efficient telephone calls or traditional letters to communicate results to their patients.
 

Put the patient, not the portal, at the center

History has all but forgotten the attempts by tech giants such as Google and Microsoft to create personal health records. While these initially seemed like a wonderful concept, they sadly proved to be a total flop. Some patients embraced the idea, but security concerns and the lack of buy-in from EHR vendors significantly limited their uptake.

They may simply have been ahead of their time.

A decade later, wearable technology and telemedicine are ushering in a new era of patient-centric care. Individuals have been embracing a greater share of the responsibility for their own personal health information, yet most EHRs lack the ability to easily incorporate data acquired outside physicians’ offices.

It’s time for EHR vendors to go all in and change that. Instead of enslaving patients to the tyranny of fragmented health records, they should prioritize the creation of a robust, standardized, and portable health record that travels with the patient, not the other way around.

Have any other ideas on how to improve patient engagement? We’d love to hear about them and share them in a future column.

If you want to contribute but don’t have any ideas, we have a suggestion: Ask your mother-in-law. You may be surprised at what you learn!

Dr. Notte is a family physician and associate chief medical information officer for Abington (Pa.) Hospital–Jefferson Health. Follow him on twitter (@doctornotte). Dr. Skolnik is professor of family and community medicine at Sidney Kimmel Medical College, Philadelphia, and associate director of the family medicine residency program at Abington Hospital–Jefferson Health.

Reference

Lee JL et al. J Gen Intern Med. 2019 Nov 12. doi: 10.1007/s11606-019-05528-z.

There is no Baby Book of Names or hurricane alphabet to readily name diseases and their causal entities. Throughout history and even in the modern era, a host of considerations have intruded on the decision as to what to call these blights upon humanity. Names have varied from inflammatory to misleading, from colloquial to scientific. And when it concerns a new epidemiological entity such as the latest coronavirus outbreak originating in China, health organizations, media, politicians, scientific taxonomy commissions, and the public at large all have a stake in the naming.

Courtesy NIAID-RML

From “Wuhan virus” to “novel coronavirus-2019” to “COVID-19 virus,” the name of the new coronavirus that first appeared in China has been evolving to its now official designation: SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2). But where did the final name come from, how does such a name become official, and who makes it so?
 

Virus taxonomy

The Coronavirus Study Group (CSG) of the International Committee on Taxonomy of Viruses (ICTV) named the new coronavirus SARS-CoV-2 based upon its genetic relationship to the original SARS-CoV that caused an outbreak of disease in 2002–2003.

According to the ICTV website, the first internationally organized attempts to introduce order into the bewildering variety of viruses took place at the International Congress of Microbiology held in Moscow in 1966 where a committee was created that later became the ICTV and was given the task of developing a single, universal taxonomic scheme for all the viruses infecting animals, plants, fungi, bacteria, and archaea. The ICTV was created as a committee of the virology division of the International Union of Microbiological Societies and is governed by statutes approved by the virology division. Virus classification and nomenclature are subject to rules set out in an International Code.

These designate that: “The universal virus classification system shall employ the hierarchical levels of realm, subrealm, kingdom, subkingdom, phylum, subphylum, class, subclass, order, suborder, family, subfamily, genus, subgenus and species.”

Many of the topmost areas of classification are based on whether the viruses are DNA or RNA, single or double stranded, and have a simple protein shell or a complex lipoprotein envelope. Other levels of classification include host species, type of replication, and type of diseases they cause, the later exemplified in the SARS designation for this virus.

There are 98 international study groups (SGs) covering all major virus orders, families, and genera that are part of the ICTV, and it was the one dedicated to the single-stranded RNA coronaviruses, the CSG, that came up with the SARS-CoV-2 name and first referenced it in their Feb 11 publication in the Cold Springs Harbor preprint journal bioRxiv.

“Based on phylogeny, taxonomy and established practice, the CSG formally recognizes this virus as a sister to severe acute respiratory syndrome coronaviruses (SARS-CoVs) of the species severe acute respiratory syndrome–related coronavirus and designates it as severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2),” they wrote.

According to the National Center for Biotechnology Information Taxonomy Browser, with respect to the original SARS CoV virus, of which this is a relative, the full taxonomic designation is: Viruses, Riboviria, Nidovirales, Cornidovirineae, Coronaviridae, Orthocoronavirinae, Betacoronavirus, Sarbecovirus.
 

The problem with naming names

The World Health Organization currently is not using the official scientific name of the virus, but rather is merely labeling it with regard to the disease: COVID-19, which simply refers to coronavirus disease 2019.

They are following a modern standard by which disease names avoid inflammatory connotations with people and places. Too often in the past from syphilis as the “French pox,” the 1918 influenza as the “Spanish flu,” AIDS as the “gay plague,” Middle East Respiratory Syndrome (MERS), and the currently named “WuFlu,” which made an appearance early in the new outbreak and which is symbolic of a sudden wave of anti-Asian, and specifically Chinese, prejudice.

Chinatown districts even in the United States are being affected economically through unwarranted fear associated with the virus. And there have been equivalently virulent outbreaks of hate speech against Asian individuals in places untouched by the new virus.

However, although SARS-CoV-2 as a name avoids such problems, different considerations led the WHO to reject it in its discussions, determining that its use ties it to tightly to the much more deadly SARS-CoV-1 virus in the public mind, risking greater fear and panic, especially in Asia, where SARS-CoV-1 had the biggest impact.

Back in 1896, William Sykes, MD, writing in the first flush of the triumph of germ theory in modern medicine, attempted to give some guidance to how medical science should best come up with new names of diseases by merging the demands of common parlance with those of taxonomic legitimacy. His “On the Origin and History of Disease-Names,” published in the Lancet, had clearcut advice: “It is vain to attempt to replace a folk name or one widely adopted by the people by a new one deliberately coined by scholars, and this for the following reasons: first, whatever names may be accepted by medical men must be translated by them into the vernacular of their patients, and by a resulting reaction the vernacular name comes to be the commoner one with themselves; and, secondly, there is no continuity or unchangeableness in the terms invented by savants, which are amended, improved upon, and displaced by the next writer on the subject, or, even more absurdly still, by the very inventors themselves in a subsequent publication.”

This is the reason that virus taxonomy provides names based upon unchangeable scientific descriptors of the actual disease causing entity, as illustrated by the decisions of the ICTV. In addition, the genomic sequences being provided by the scientific community are all being organized under the SARS-CoV-2 name and thus are cementing that moniker as the only acceptable scientific one.

Whether the rest of the world universally adopts SARS-CoV-2 as a name is still in question. If the outbreak spreads significantly beyond its current limits, fear and confusion – and simply the need for a more familiar-sounding label – may lead the general public to adopt more colloquial designations than those that science attempts to impose, as Dr. Sykes suggested back in 1896. That remains to be seen.

mlesney@mdedge.com

Mark Lesney is the managing editor of MDedge.com/IDPractioner. He has a PhD in plant virology and a PhD in the history of science, with a focus on the history of biotechnology and medicine. He has served as an adjunct assistant professor of the department of biochemistry and molecular & cellular biology at Georgetown University, Washington.

There is no Baby Book of Names or hurricane alphabet to readily name diseases and their causal entities. Throughout history and even in the modern era, a host of considerations have intruded on the decision as to what to call these blights upon humanity. Names have varied from inflammatory to misleading, from colloquial to scientific. And when it concerns a new epidemiological entity such as the latest coronavirus outbreak originating in China, health organizations, media, politicians, scientific taxonomy commissions, and the public at large all have a stake in the naming.

Courtesy NIAID-RML

From “Wuhan virus” to “novel coronavirus-2019” to “COVID-19 virus,” the name of the new coronavirus that first appeared in China has been evolving to its now official designation: SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2). But where did the final name come from, how does such a name become official, and who makes it so?
 

Virus taxonomy

The Coronavirus Study Group (CSG) of the International Committee on Taxonomy of Viruses (ICTV) named the new coronavirus SARS-CoV-2 based upon its genetic relationship to the original SARS-CoV that caused an outbreak of disease in 2002–2003.

According to the ICTV website, the first internationally organized attempts to introduce order into the bewildering variety of viruses took place at the International Congress of Microbiology held in Moscow in 1966 where a committee was created that later became the ICTV and was given the task of developing a single, universal taxonomic scheme for all the viruses infecting animals, plants, fungi, bacteria, and archaea. The ICTV was created as a committee of the virology division of the International Union of Microbiological Societies and is governed by statutes approved by the virology division. Virus classification and nomenclature are subject to rules set out in an International Code.

These designate that: “The universal virus classification system shall employ the hierarchical levels of realm, subrealm, kingdom, subkingdom, phylum, subphylum, class, subclass, order, suborder, family, subfamily, genus, subgenus and species.”

Many of the topmost areas of classification are based on whether the viruses are DNA or RNA, single or double stranded, and have a simple protein shell or a complex lipoprotein envelope. Other levels of classification include host species, type of replication, and type of diseases they cause, the later exemplified in the SARS designation for this virus.

There are 98 international study groups (SGs) covering all major virus orders, families, and genera that are part of the ICTV, and it was the one dedicated to the single-stranded RNA coronaviruses, the CSG, that came up with the SARS-CoV-2 name and first referenced it in their Feb 11 publication in the Cold Springs Harbor preprint journal bioRxiv.

“Based on phylogeny, taxonomy and established practice, the CSG formally recognizes this virus as a sister to severe acute respiratory syndrome coronaviruses (SARS-CoVs) of the species severe acute respiratory syndrome–related coronavirus and designates it as severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2),” they wrote.

According to the National Center for Biotechnology Information Taxonomy Browser, with respect to the original SARS CoV virus, of which this is a relative, the full taxonomic designation is: Viruses, Riboviria, Nidovirales, Cornidovirineae, Coronaviridae, Orthocoronavirinae, Betacoronavirus, Sarbecovirus.
 

The problem with naming names

The World Health Organization currently is not using the official scientific name of the virus, but rather is merely labeling it with regard to the disease: COVID-19, which simply refers to coronavirus disease 2019.

They are following a modern standard by which disease names avoid inflammatory connotations with people and places. Too often in the past from syphilis as the “French pox,” the 1918 influenza as the “Spanish flu,” AIDS as the “gay plague,” Middle East Respiratory Syndrome (MERS), and the currently named “WuFlu,” which made an appearance early in the new outbreak and which is symbolic of a sudden wave of anti-Asian, and specifically Chinese, prejudice.

Chinatown districts even in the United States are being affected economically through unwarranted fear associated with the virus. And there have been equivalently virulent outbreaks of hate speech against Asian individuals in places untouched by the new virus.

However, although SARS-CoV-2 as a name avoids such problems, different considerations led the WHO to reject it in its discussions, determining that its use ties it to tightly to the much more deadly SARS-CoV-1 virus in the public mind, risking greater fear and panic, especially in Asia, where SARS-CoV-1 had the biggest impact.

Back in 1896, William Sykes, MD, writing in the first flush of the triumph of germ theory in modern medicine, attempted to give some guidance to how medical science should best come up with new names of diseases by merging the demands of common parlance with those of taxonomic legitimacy. His “On the Origin and History of Disease-Names,” published in the Lancet, had clearcut advice: “It is vain to attempt to replace a folk name or one widely adopted by the people by a new one deliberately coined by scholars, and this for the following reasons: first, whatever names may be accepted by medical men must be translated by them into the vernacular of their patients, and by a resulting reaction the vernacular name comes to be the commoner one with themselves; and, secondly, there is no continuity or unchangeableness in the terms invented by savants, which are amended, improved upon, and displaced by the next writer on the subject, or, even more absurdly still, by the very inventors themselves in a subsequent publication.”

This is the reason that virus taxonomy provides names based upon unchangeable scientific descriptors of the actual disease causing entity, as illustrated by the decisions of the ICTV. In addition, the genomic sequences being provided by the scientific community are all being organized under the SARS-CoV-2 name and thus are cementing that moniker as the only acceptable scientific one.

Whether the rest of the world universally adopts SARS-CoV-2 as a name is still in question. If the outbreak spreads significantly beyond its current limits, fear and confusion – and simply the need for a more familiar-sounding label – may lead the general public to adopt more colloquial designations than those that science attempts to impose, as Dr. Sykes suggested back in 1896. That remains to be seen.

mlesney@mdedge.com

Mark Lesney is the managing editor of MDedge.com/IDPractioner. He has a PhD in plant virology and a PhD in the history of science, with a focus on the history of biotechnology and medicine. He has served as an adjunct assistant professor of the department of biochemistry and molecular & cellular biology at Georgetown University, Washington.

There is no Baby Book of Names or hurricane alphabet to readily name diseases and their causal entities. Throughout history and even in the modern era, a host of considerations have intruded on the decision as to what to call these blights upon humanity. Names have varied from inflammatory to misleading, from colloquial to scientific. And when it concerns a new epidemiological entity such as the latest coronavirus outbreak originating in China, health organizations, media, politicians, scientific taxonomy commissions, and the public at large all have a stake in the naming.

Courtesy NIAID-RML

From “Wuhan virus” to “novel coronavirus-2019” to “COVID-19 virus,” the name of the new coronavirus that first appeared in China has been evolving to its now official designation: SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2). But where did the final name come from, how does such a name become official, and who makes it so?
 

Virus taxonomy

The Coronavirus Study Group (CSG) of the International Committee on Taxonomy of Viruses (ICTV) named the new coronavirus SARS-CoV-2 based upon its genetic relationship to the original SARS-CoV that caused an outbreak of disease in 2002–2003.

According to the ICTV website, the first internationally organized attempts to introduce order into the bewildering variety of viruses took place at the International Congress of Microbiology held in Moscow in 1966 where a committee was created that later became the ICTV and was given the task of developing a single, universal taxonomic scheme for all the viruses infecting animals, plants, fungi, bacteria, and archaea. The ICTV was created as a committee of the virology division of the International Union of Microbiological Societies and is governed by statutes approved by the virology division. Virus classification and nomenclature are subject to rules set out in an International Code.

These designate that: “The universal virus classification system shall employ the hierarchical levels of realm, subrealm, kingdom, subkingdom, phylum, subphylum, class, subclass, order, suborder, family, subfamily, genus, subgenus and species.”

Many of the topmost areas of classification are based on whether the viruses are DNA or RNA, single or double stranded, and have a simple protein shell or a complex lipoprotein envelope. Other levels of classification include host species, type of replication, and type of diseases they cause, the later exemplified in the SARS designation for this virus.

There are 98 international study groups (SGs) covering all major virus orders, families, and genera that are part of the ICTV, and it was the one dedicated to the single-stranded RNA coronaviruses, the CSG, that came up with the SARS-CoV-2 name and first referenced it in their Feb 11 publication in the Cold Springs Harbor preprint journal bioRxiv.

“Based on phylogeny, taxonomy and established practice, the CSG formally recognizes this virus as a sister to severe acute respiratory syndrome coronaviruses (SARS-CoVs) of the species severe acute respiratory syndrome–related coronavirus and designates it as severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2),” they wrote.

According to the National Center for Biotechnology Information Taxonomy Browser, with respect to the original SARS CoV virus, of which this is a relative, the full taxonomic designation is: Viruses, Riboviria, Nidovirales, Cornidovirineae, Coronaviridae, Orthocoronavirinae, Betacoronavirus, Sarbecovirus.
 

The problem with naming names

The World Health Organization currently is not using the official scientific name of the virus, but rather is merely labeling it with regard to the disease: COVID-19, which simply refers to coronavirus disease 2019.

They are following a modern standard by which disease names avoid inflammatory connotations with people and places. Too often in the past from syphilis as the “French pox,” the 1918 influenza as the “Spanish flu,” AIDS as the “gay plague,” Middle East Respiratory Syndrome (MERS), and the currently named “WuFlu,” which made an appearance early in the new outbreak and which is symbolic of a sudden wave of anti-Asian, and specifically Chinese, prejudice.

Chinatown districts even in the United States are being affected economically through unwarranted fear associated with the virus. And there have been equivalently virulent outbreaks of hate speech against Asian individuals in places untouched by the new virus.

However, although SARS-CoV-2 as a name avoids such problems, different considerations led the WHO to reject it in its discussions, determining that its use ties it to tightly to the much more deadly SARS-CoV-1 virus in the public mind, risking greater fear and panic, especially in Asia, where SARS-CoV-1 had the biggest impact.

Back in 1896, William Sykes, MD, writing in the first flush of the triumph of germ theory in modern medicine, attempted to give some guidance to how medical science should best come up with new names of diseases by merging the demands of common parlance with those of taxonomic legitimacy. His “On the Origin and History of Disease-Names,” published in the Lancet, had clearcut advice: “It is vain to attempt to replace a folk name or one widely adopted by the people by a new one deliberately coined by scholars, and this for the following reasons: first, whatever names may be accepted by medical men must be translated by them into the vernacular of their patients, and by a resulting reaction the vernacular name comes to be the commoner one with themselves; and, secondly, there is no continuity or unchangeableness in the terms invented by savants, which are amended, improved upon, and displaced by the next writer on the subject, or, even more absurdly still, by the very inventors themselves in a subsequent publication.”

This is the reason that virus taxonomy provides names based upon unchangeable scientific descriptors of the actual disease causing entity, as illustrated by the decisions of the ICTV. In addition, the genomic sequences being provided by the scientific community are all being organized under the SARS-CoV-2 name and thus are cementing that moniker as the only acceptable scientific one.

Whether the rest of the world universally adopts SARS-CoV-2 as a name is still in question. If the outbreak spreads significantly beyond its current limits, fear and confusion – and simply the need for a more familiar-sounding label – may lead the general public to adopt more colloquial designations than those that science attempts to impose, as Dr. Sykes suggested back in 1896. That remains to be seen.

mlesney@mdedge.com

Mark Lesney is the managing editor of MDedge.com/IDPractioner. He has a PhD in plant virology and a PhD in the history of science, with a focus on the history of biotechnology and medicine. He has served as an adjunct assistant professor of the department of biochemistry and molecular & cellular biology at Georgetown University, Washington.

Evaluation and Management (E/M) coding and guidelines are about to undergo the most significant changes since their implementation in the 1990s. For now, the changes are limited to new and established outpatient visits (CPT codes 99202-99205, 99211-99215) and will take place as of Jan. 1, 2021. Changes to all E/M codes are anticipated in the coming years.

The changes to the new and established office/outpatient codes will impact everyone in health care who assigns codes, manages health information, or pays claims including physicians and qualified health professionals, coders, health information managers, payers, health systems, and hospitals. The American Medical Association (AMA) has already released a preview of the CPT 2021 changes as well as free E/M education modules. They are planning to release more educational resources in the near future.
 

Why were changes needed?

The AMA developed the 2021 E/M changes in response to interest from the Centers for Medicare & Medicaid Services (CMS) in reducing physician burden, simplifying documentation requirements, and making changes to payments for the E/M codes. CMS’s initial proposal was to collapse office visit E/M levels 2-5 to a single payment. While the new rates would have provided a modest increase for level 2 and 3 E/M codes, they would have cut reimbursement for the top-level codes by more than 50%. There was concern that these changes would adversely affect physicians caring for complex patients across medical specialties. There was an outcry from the physician community opposing CMS’s proposal, and the agency agreed to get more input from the public before moving forward.

The AMA worked with stakeholders, including the AGA and our sister GI societies, to create E/M guidelines that decrease documentation requirements while also continuing to differentiate payment based on complexity of care. CMS announced in the 2020 Medicare Physician Fee Schedule (MPFS) final rule that it would adopt the AMA’s proposal as well as their recommended relative values for 2021 CPT E/M codes. Of note, there will be modest payment increases for most office E/M codes beginning Jan. 1, 2021, which may benefit those who manage patients with complex conditions.

In sum, what are the 2021 E/M changes

While there will be many changes to office/outpatient E/M visits, the most significant are deletion of code 99201 (Level 1 new patient visit), addition of a 15-minute prolonged services code that can be reported with 99205 and 99215, and the following restructuring of office visit code selection:

1. Elimination of history and physical as elements for code selection: While obtaining a pertinent history and performing a relevant physical exam are clinically necessary and contribute to both time and medical decision making, these elements will not factor in to code selection. Instead, the code level will be determined solely by medical decision making or time.

2. Choice of using medical decision making (MDM) or total time as the basis of E/M level documentation:

• MDM. While there will still be three MDM subcomponents (number/complexity of problems, data, and risk), extensive edits were made to the ways in which these elements are defined and tallied.
• Time. The definition of time is now minimum time, not typical time or “face-to-face” time. Minimum time represents total physician/qualified health care professional time on the date of service. This redefinition of time allows Medicare to better recognize the work involved in non–face-to-face services like care coordination and record review. Of note, these definitions only apply when code selection is based on time and not MDM.

3. Modification of the criteria for MDM: The current CMS Table of Risk was used as a foundation for designing the revised required elements for MDM.

• Terms. Removed ambiguous terms (e.g., “mild”) and defined previously ambiguous concepts (e.g., “acute or chronic illness with systemic symptoms”).
• Definitions. Defined important terms, such as “independent historian.”
• Data elements. Re-defined the data elements to move away from simply adding up tasks to focusing on how those tasks affect the management of the patient (e.g., independent interpretation of a test performed by another provider and/or discussion of test interpretation with another physician).

CMS also plans to add a new Healthcare Common Procedure Coding System (HCPCS) add-on code as of Jan. 1, 2021, that can be used to recognize additional resource costs that are inherent in treating complex patients.

• GPCX1 - Visit complexity inherent to evaluation and management associated with medical care services that serve as the continuing focal point for all needed health care services and/or with medical care services that are part of ongoing care related to a patient’s single, serious, or complex chronic condition. (Add-on code, list separately in addition to office/outpatient evaluation and management visit, new or established.).

GPC1X can be reported with all levels of E/M office/outpatient codes in which care of a patient’s single, serious, or complex chronic condition is the focus. CMS plans to reimburse GPC1X at 0.33 RVUs (about $12).
 

Who do these changes apply to?

The changes to the E/M office/outpatient CPT codes and guidelines for new and established patients apply to all traditional Medicare and Medicare Advantage plans, Medicaid, and all commercial payers. E/M HCPCS codes apply to Medicare, Medicare Advantage plans, and Medicaid only; commercial payers are not required to accept HCPCS codes.

What should you do?

Visit the AMA E/M Microsite; there you will find the AMA’s early release of the 2021 E/M coding and guideline changes, the AMA E/M learning module and future resources on the use of time and MDM that are expected to be released in March.

AMA E/M Microsite: https://www.ama-assn.org/practice-management/cpt/cpt-evaluation-and-management

2021 E/M changes: https://www.ama-assn.org/system/files/2019-06/cpt-office-prolonged-svs-code-changes.pdf

AMA E/M learning module: https://edhub.ama-assn.org/interactive/18057429

AMA MDM table: https://www.ama-assn.org/system/files/2019-06/cpt-revised-mdm-grid.pdf

Connect with your coders and/or medical billing company to create a plan for training physicians and staff to ensure a smooth transition on Jan. 1, 2021.

Contact your Electronic Health Records (EHR) vendor to confirm the system your practice uses will be ready to implement the new E/M coding and guidelines changes on Jan. 1, 2021.

Run an analysis using the new E/M office/outpatient payment rates recommended by the AMA for 2021 (https://www.ama-assn.org/about/rvs-update-committee-ruc/ruc-recommendations-minutes-voting) for each of your practice’s contracted payers to determine if your practice will benefit from the new rates. While CMS has proposed to accept the AMA recommended rates, this will not be finalized until CMS publishes the 2021 proposed rule in early July 2020.

Once CMS confirms its decision, reach out to your payers to negotiate implementing the new E/M rates starting in 2021.

With changes this big, we encourage you to prepare early. Watch for more information on the 2021 E/M changes in Washington Insider and AGA eDigest.
 

Dr. Kuo is the AGA’s Advisor to the AMA CPT Editorial Panel and a member of the AGA Practice Management and Economics Committee’s (PMEC) Coverage and Reimbursement Subcommittee (CRS) and assistant professor of medicine and gastroenterology, Harvard Medical School and Massachusetts General Hospital, Boston; Dr. Losurdo is the AGA’s Alternate Advisor to the AMA CPT Editorial Panel, a member of the AGA PMEC’s CRS, and Managing Partner and medical director of Illinois Gastroenterology Group, Elgin, Ill.; Dr. Mehta is the AGA’s advisor to the AMA RVS Update Committee (RUC), a member of the AGA PMEC’s CRS, and assistant professor of medicine at the University of Pennsylvania, Philadelphia; and Dr. Garcia is the AGA’s Alternate Advisor to the AMA RUC, a member of the AGA PMEC’s CRS, and assistant professor of medicine and gastroenterology at Stanford (Calif.) University. There were no conflicts of interest.

Evaluation and Management (E/M) coding and guidelines are about to undergo the most significant changes since their implementation in the 1990s. For now, the changes are limited to new and established outpatient visits (CPT codes 99202-99205, 99211-99215) and will take place as of Jan. 1, 2021. Changes to all E/M codes are anticipated in the coming years.

The changes to the new and established office/outpatient codes will impact everyone in health care who assigns codes, manages health information, or pays claims including physicians and qualified health professionals, coders, health information managers, payers, health systems, and hospitals. The American Medical Association (AMA) has already released a preview of the CPT 2021 changes as well as free E/M education modules. They are planning to release more educational resources in the near future.
 

Why were changes needed?

The AMA developed the 2021 E/M changes in response to interest from the Centers for Medicare & Medicaid Services (CMS) in reducing physician burden, simplifying documentation requirements, and making changes to payments for the E/M codes. CMS’s initial proposal was to collapse office visit E/M levels 2-5 to a single payment. While the new rates would have provided a modest increase for level 2 and 3 E/M codes, they would have cut reimbursement for the top-level codes by more than 50%. There was concern that these changes would adversely affect physicians caring for complex patients across medical specialties. There was an outcry from the physician community opposing CMS’s proposal, and the agency agreed to get more input from the public before moving forward.

The AMA worked with stakeholders, including the AGA and our sister GI societies, to create E/M guidelines that decrease documentation requirements while also continuing to differentiate payment based on complexity of care. CMS announced in the 2020 Medicare Physician Fee Schedule (MPFS) final rule that it would adopt the AMA’s proposal as well as their recommended relative values for 2021 CPT E/M codes. Of note, there will be modest payment increases for most office E/M codes beginning Jan. 1, 2021, which may benefit those who manage patients with complex conditions.

In sum, what are the 2021 E/M changes

While there will be many changes to office/outpatient E/M visits, the most significant are deletion of code 99201 (Level 1 new patient visit), addition of a 15-minute prolonged services code that can be reported with 99205 and 99215, and the following restructuring of office visit code selection:

1. Elimination of history and physical as elements for code selection: While obtaining a pertinent history and performing a relevant physical exam are clinically necessary and contribute to both time and medical decision making, these elements will not factor in to code selection. Instead, the code level will be determined solely by medical decision making or time.

2. Choice of using medical decision making (MDM) or total time as the basis of E/M level documentation:

• MDM. While there will still be three MDM subcomponents (number/complexity of problems, data, and risk), extensive edits were made to the ways in which these elements are defined and tallied.
• Time. The definition of time is now minimum time, not typical time or “face-to-face” time. Minimum time represents total physician/qualified health care professional time on the date of service. This redefinition of time allows Medicare to better recognize the work involved in non–face-to-face services like care coordination and record review. Of note, these definitions only apply when code selection is based on time and not MDM.

3. Modification of the criteria for MDM: The current CMS Table of Risk was used as a foundation for designing the revised required elements for MDM.

• Terms. Removed ambiguous terms (e.g., “mild”) and defined previously ambiguous concepts (e.g., “acute or chronic illness with systemic symptoms”).
• Definitions. Defined important terms, such as “independent historian.”
• Data elements. Re-defined the data elements to move away from simply adding up tasks to focusing on how those tasks affect the management of the patient (e.g., independent interpretation of a test performed by another provider and/or discussion of test interpretation with another physician).

CMS also plans to add a new Healthcare Common Procedure Coding System (HCPCS) add-on code as of Jan. 1, 2021, that can be used to recognize additional resource costs that are inherent in treating complex patients.

• GPCX1 - Visit complexity inherent to evaluation and management associated with medical care services that serve as the continuing focal point for all needed health care services and/or with medical care services that are part of ongoing care related to a patient’s single, serious, or complex chronic condition. (Add-on code, list separately in addition to office/outpatient evaluation and management visit, new or established.).

GPC1X can be reported with all levels of E/M office/outpatient codes in which care of a patient’s single, serious, or complex chronic condition is the focus. CMS plans to reimburse GPC1X at 0.33 RVUs (about $12).
 

Who do these changes apply to?

The changes to the E/M office/outpatient CPT codes and guidelines for new and established patients apply to all traditional Medicare and Medicare Advantage plans, Medicaid, and all commercial payers. E/M HCPCS codes apply to Medicare, Medicare Advantage plans, and Medicaid only; commercial payers are not required to accept HCPCS codes.

What should you do?

Visit the AMA E/M Microsite; there you will find the AMA’s early release of the 2021 E/M coding and guideline changes, the AMA E/M learning module and future resources on the use of time and MDM that are expected to be released in March.

AMA E/M Microsite: https://www.ama-assn.org/practice-management/cpt/cpt-evaluation-and-management

2021 E/M changes: https://www.ama-assn.org/system/files/2019-06/cpt-office-prolonged-svs-code-changes.pdf

AMA E/M learning module: https://edhub.ama-assn.org/interactive/18057429

AMA MDM table: https://www.ama-assn.org/system/files/2019-06/cpt-revised-mdm-grid.pdf

Connect with your coders and/or medical billing company to create a plan for training physicians and staff to ensure a smooth transition on Jan. 1, 2021.

Contact your Electronic Health Records (EHR) vendor to confirm the system your practice uses will be ready to implement the new E/M coding and guidelines changes on Jan. 1, 2021.

Run an analysis using the new E/M office/outpatient payment rates recommended by the AMA for 2021 (https://www.ama-assn.org/about/rvs-update-committee-ruc/ruc-recommendations-minutes-voting) for each of your practice’s contracted payers to determine if your practice will benefit from the new rates. While CMS has proposed to accept the AMA recommended rates, this will not be finalized until CMS publishes the 2021 proposed rule in early July 2020.

Once CMS confirms its decision, reach out to your payers to negotiate implementing the new E/M rates starting in 2021.

With changes this big, we encourage you to prepare early. Watch for more information on the 2021 E/M changes in Washington Insider and AGA eDigest.
 

Dr. Kuo is the AGA’s Advisor to the AMA CPT Editorial Panel and a member of the AGA Practice Management and Economics Committee’s (PMEC) Coverage and Reimbursement Subcommittee (CRS) and assistant professor of medicine and gastroenterology, Harvard Medical School and Massachusetts General Hospital, Boston; Dr. Losurdo is the AGA’s Alternate Advisor to the AMA CPT Editorial Panel, a member of the AGA PMEC’s CRS, and Managing Partner and medical director of Illinois Gastroenterology Group, Elgin, Ill.; Dr. Mehta is the AGA’s advisor to the AMA RVS Update Committee (RUC), a member of the AGA PMEC’s CRS, and assistant professor of medicine at the University of Pennsylvania, Philadelphia; and Dr. Garcia is the AGA’s Alternate Advisor to the AMA RUC, a member of the AGA PMEC’s CRS, and assistant professor of medicine and gastroenterology at Stanford (Calif.) University. There were no conflicts of interest.

Evaluation and Management (E/M) coding and guidelines are about to undergo the most significant changes since their implementation in the 1990s. For now, the changes are limited to new and established outpatient visits (CPT codes 99202-99205, 99211-99215) and will take place as of Jan. 1, 2021. Changes to all E/M codes are anticipated in the coming years.

The changes to the new and established office/outpatient codes will impact everyone in health care who assigns codes, manages health information, or pays claims including physicians and qualified health professionals, coders, health information managers, payers, health systems, and hospitals. The American Medical Association (AMA) has already released a preview of the CPT 2021 changes as well as free E/M education modules. They are planning to release more educational resources in the near future.
 

Why were changes needed?

The AMA developed the 2021 E/M changes in response to interest from the Centers for Medicare & Medicaid Services (CMS) in reducing physician burden, simplifying documentation requirements, and making changes to payments for the E/M codes. CMS’s initial proposal was to collapse office visit E/M levels 2-5 to a single payment. While the new rates would have provided a modest increase for level 2 and 3 E/M codes, they would have cut reimbursement for the top-level codes by more than 50%. There was concern that these changes would adversely affect physicians caring for complex patients across medical specialties. There was an outcry from the physician community opposing CMS’s proposal, and the agency agreed to get more input from the public before moving forward.

The AMA worked with stakeholders, including the AGA and our sister GI societies, to create E/M guidelines that decrease documentation requirements while also continuing to differentiate payment based on complexity of care. CMS announced in the 2020 Medicare Physician Fee Schedule (MPFS) final rule that it would adopt the AMA’s proposal as well as their recommended relative values for 2021 CPT E/M codes. Of note, there will be modest payment increases for most office E/M codes beginning Jan. 1, 2021, which may benefit those who manage patients with complex conditions.

In sum, what are the 2021 E/M changes

While there will be many changes to office/outpatient E/M visits, the most significant are deletion of code 99201 (Level 1 new patient visit), addition of a 15-minute prolonged services code that can be reported with 99205 and 99215, and the following restructuring of office visit code selection:

1. Elimination of history and physical as elements for code selection: While obtaining a pertinent history and performing a relevant physical exam are clinically necessary and contribute to both time and medical decision making, these elements will not factor in to code selection. Instead, the code level will be determined solely by medical decision making or time.

2. Choice of using medical decision making (MDM) or total time as the basis of E/M level documentation:

• MDM. While there will still be three MDM subcomponents (number/complexity of problems, data, and risk), extensive edits were made to the ways in which these elements are defined and tallied.
• Time. The definition of time is now minimum time, not typical time or “face-to-face” time. Minimum time represents total physician/qualified health care professional time on the date of service. This redefinition of time allows Medicare to better recognize the work involved in non–face-to-face services like care coordination and record review. Of note, these definitions only apply when code selection is based on time and not MDM.

3. Modification of the criteria for MDM: The current CMS Table of Risk was used as a foundation for designing the revised required elements for MDM.

• Terms. Removed ambiguous terms (e.g., “mild”) and defined previously ambiguous concepts (e.g., “acute or chronic illness with systemic symptoms”).
• Definitions. Defined important terms, such as “independent historian.”
• Data elements. Re-defined the data elements to move away from simply adding up tasks to focusing on how those tasks affect the management of the patient (e.g., independent interpretation of a test performed by another provider and/or discussion of test interpretation with another physician).

CMS also plans to add a new Healthcare Common Procedure Coding System (HCPCS) add-on code as of Jan. 1, 2021, that can be used to recognize additional resource costs that are inherent in treating complex patients.

• GPCX1 - Visit complexity inherent to evaluation and management associated with medical care services that serve as the continuing focal point for all needed health care services and/or with medical care services that are part of ongoing care related to a patient’s single, serious, or complex chronic condition. (Add-on code, list separately in addition to office/outpatient evaluation and management visit, new or established.).

GPC1X can be reported with all levels of E/M office/outpatient codes in which care of a patient’s single, serious, or complex chronic condition is the focus. CMS plans to reimburse GPC1X at 0.33 RVUs (about $12).
 

Who do these changes apply to?

The changes to the E/M office/outpatient CPT codes and guidelines for new and established patients apply to all traditional Medicare and Medicare Advantage plans, Medicaid, and all commercial payers. E/M HCPCS codes apply to Medicare, Medicare Advantage plans, and Medicaid only; commercial payers are not required to accept HCPCS codes.

What should you do?

Visit the AMA E/M Microsite; there you will find the AMA’s early release of the 2021 E/M coding and guideline changes, the AMA E/M learning module and future resources on the use of time and MDM that are expected to be released in March.

AMA E/M Microsite: https://www.ama-assn.org/practice-management/cpt/cpt-evaluation-and-management

2021 E/M changes: https://www.ama-assn.org/system/files/2019-06/cpt-office-prolonged-svs-code-changes.pdf

AMA E/M learning module: https://edhub.ama-assn.org/interactive/18057429

AMA MDM table: https://www.ama-assn.org/system/files/2019-06/cpt-revised-mdm-grid.pdf

Connect with your coders and/or medical billing company to create a plan for training physicians and staff to ensure a smooth transition on Jan. 1, 2021.

Contact your Electronic Health Records (EHR) vendor to confirm the system your practice uses will be ready to implement the new E/M coding and guidelines changes on Jan. 1, 2021.

Run an analysis using the new E/M office/outpatient payment rates recommended by the AMA for 2021 (https://www.ama-assn.org/about/rvs-update-committee-ruc/ruc-recommendations-minutes-voting) for each of your practice’s contracted payers to determine if your practice will benefit from the new rates. While CMS has proposed to accept the AMA recommended rates, this will not be finalized until CMS publishes the 2021 proposed rule in early July 2020.

Once CMS confirms its decision, reach out to your payers to negotiate implementing the new E/M rates starting in 2021.

With changes this big, we encourage you to prepare early. Watch for more information on the 2021 E/M changes in Washington Insider and AGA eDigest.
 

Dr. Kuo is the AGA’s Advisor to the AMA CPT Editorial Panel and a member of the AGA Practice Management and Economics Committee’s (PMEC) Coverage and Reimbursement Subcommittee (CRS) and assistant professor of medicine and gastroenterology, Harvard Medical School and Massachusetts General Hospital, Boston; Dr. Losurdo is the AGA’s Alternate Advisor to the AMA CPT Editorial Panel, a member of the AGA PMEC’s CRS, and Managing Partner and medical director of Illinois Gastroenterology Group, Elgin, Ill.; Dr. Mehta is the AGA’s advisor to the AMA RVS Update Committee (RUC), a member of the AGA PMEC’s CRS, and assistant professor of medicine at the University of Pennsylvania, Philadelphia; and Dr. Garcia is the AGA’s Alternate Advisor to the AMA RUC, a member of the AGA PMEC’s CRS, and assistant professor of medicine and gastroenterology at Stanford (Calif.) University. There were no conflicts of interest.

“I’ve given up, doctor. We gave it our best, but I am at the point where I want to end my life.” You receive this call at 2 a.m., and you’re flooded with a series of emotions and are bewildered – until your training kicks in.

Countless hours of working with patients in emergency department settings while on call as a resident inform your ability to triage the situation. Years of supervision guide your supportive statements as you work collaboratively with your patient to address the emotional and existential distress. As the call proceeds and you realize that your patient will require hospitalization, you are struck by a sobering question: “How am I going to arrange for my patient to go to the nearest hospital in the middle of the night?”

The options for transporting patients with serious mental illness (SMI) typically vary from bad to worse and usually filter down to three possibilities:

1. Get a friend or family member to transport them to the nearest ED.

2. Call emergency medical services (EMS) for transport to the nearest ED.

3. Call the police and request transport to the nearest ED.

Several factors would determine which of those options you would use alone or in combination. Current training paradigms for mental health professionals offer a limited body of literature on evidenced-based strategies for patients with SMI. Transporting high-risk psychiatric patients requires great care and respect, and in-depth knowledge about patients’ vulnerabilities. At best – if not handled properly – these experiences can aggravate patients’ mental health conditions. At worst, they can lead to the loss of our patients. Together, we have more than 40 years’ experience working in complex mental health care systems that run the gamut, from providing direct clinical care to directing mental health care divisions.

Sobering statistics prevail

In 2017, suicide was the 10th leading cause of death in the United States, accounting for more than 47,000 deaths. Suicide was the second-leading cause of death among individuals aged 10-34 and the fourth leading cause of death for individuals aged 35- 54.¹ In 2017, more than 70,200 Americans died from a drug overdose, including illicit drugs and prescription opioids.² Drug overdose deaths nearly quadrupled between 1999 and 2017, from 16,849 deaths to 70,237, respectively.²

The life expectancy of an American with SMI is 14-32 years less than that of the average population.³ Those numbers are on par with many sub-Saharan countries, including Sudan and Ethiopia, and surpass the health disparities for most racial and ethnic groups.

The decrease in life expectancy for people with SMI is rarely the result of suicide but rather the effect of medical comorbidities, including heart disease, stroke, pulmonary disease, diabetes, and cancer.³ Individuals with SMI are much more likely to suffer from chronic illnesses that are associated with co-occurring addictions, side effects of psychotropic medications, and social determinants of mental health, such as poverty.

Major depressive disorder among people with SMI presents acute and chronic medical risks. For example, people with major depressive disorder are at a higher risk for stroke and cardiovascular disease.⁴ There is a threefold increase in cardiac-related deaths for individuals who experience depression after a heart attack.⁵ In addition, depression increases the risk of cardiac-related death after a heart attack more than any other risk factor, except for congestive heart failure.⁶

The transportation challenge

When the complexity of psychiatric conditions is conceptualized to include decreased life expectancy because of medical comorbidities, medical complications that can result from psychotropic medications, and the high incidence of co-occurring substance use disorders (SUDs), it is clear why we are concerned about the type of transport used for patients experiencing a psychiatric emergency.

A common practice for patients presenting for medical treatment for a mental health condition is for them to be transported by law enforcement in handcuffs, or by private vehicle, because of a lack of medical transport options.

One tragic example occurred on Sept. 18, 2018, when two Horry County, S.C., deputies were providing a hospital-to-hospital transport for two mental health patients. The patients, who had no legal charges and were not under arrest, were locked in a transport cage in the back of a law enforcement vehicle for transport during Hurricane Florence. While the driver tried to move through floodwaters, the car stalled and became submerged. The patients were unable to open the locked cage door, and the deputies responsible for the transport did not have a key to unlock the cage.

The two women died as a result of the incident. Both deputies are facing two counts of involuntary manslaughter – with a potential prison sentence of 5 years each.⁷

The system that promotes the use of law enforcement to transport medical patients who are not in legal custody perpetuates a high risk to patients. Also at risk are law enforcement professionals who often are not adequately trained to evaluate, intervene, and manage patients in need of medical treatment (for acute medical, SUDs, or mental illness).
 

Recommendations for transporting high-risk patients

The legal and regulatory standards required by the Centers for Medicare & Medicaid Services guidelines⁸ for behavioral health patients are consistent in saying that law enforcement restraints cannot be used in hospital settings – unless the patient is under law enforcement custody. If the patient is admitted to an inpatient psychiatric unit, law enforcement restraints are never allowed to be used. Despite those guidelines for handling these situations within hospital settings, a similar standard does not exist for interhospital transport of high-risk behavioral health patients.

Patients often are transported between facilities by law enforcement, and at times, with the use of law enforcement restraints. However, use of law enforcement for interhospital transport of patients not in the custody of law enforcement is both detrimental to and clinically dangerous for the patient. Not only does the scenario put the patient at risk, but it also places law enforcement professionals at risk with the potential for legal liability if the patient medically decompensates during the transport.

Also, using law enforcement to intervene and provide transportation for behavioral health patients in crisis might cause further harm to the patient’s psychological condition and deter the patient from presenting for treatment.

The appropriate level of interfacility transport for a behavioral health patient requiring an inpatient level of care is secure transport with trained medical professionals. If necessary, restraint guidelines should follow the same standard as they do in hospital settings. In situations with high risk for violence or agitation, law enforcement should be requested to accompany EMS during the transport. Handling the situation in this way allows for a collaborative approach to provide adequate medical support, and provide for the physical safety and security of the patient – and of EMS personnel.

Across police and sheriffs’ departments nationwide, law enforcement officers are required to transport mental health patients from one location or hospital to another. Hospitals and outpatient locations, often with no alternative, rely on local law enforcement agencies to provide safe transport between acute and mental health facilities. Departmental policies and the widespread belief that mental health patients automatically pose a substantial danger to themselves or others have led to these patients being handcuffed and put in the back of police cruisers. Essentially, they are treated like criminals who are under arrest.

The CMS has strict criteria for ordering, applying, evaluating, reevaluating, and reporting restraint-associated deaths. Likewise, The Joint Commission, during its accreditation survey, rightly scrutinizes a facility’s use of restraints. Both the CMS and The Joint Commission define restraint by the function of the device and not the type of the device.

According to the CMS, a restraint is any manual method, physical or mechanic device, material, or equipment that immobilizes or reduces the ability of a patient to move his or her arms, legs, body, or head freely. Within a police cruiser, handcuffs on a mental health patient who is not under arrest would fall squarely within this definition of restraint.

A patient’s current behavior or clinical needs – not history or diagnosis – should determine whether a restraint is warranted. A patient experiencing a psychiatric crisis who is not under arrest might very well escalate and become destructive and combative when being placed in handcuffs in the back of a police vehicle. What should police do at that point? Should they arrest the individual? We offer the following five recommendations.
 

Key recommendations

• Patients who require interhospital transport for an acute behavioral health crisis should be transported by medical professionals with the training and expertise to manage mental health and medical conditions.
• Interhospital transport restraint guidelines should be in line with CMS guidelines for hospital restraints. No patient that is not under law enforcement custody should be transported in law enforcement restraints.
• Patients at high risk for violence/agitation (an underlying condition causing violence/agitation may include dementia, traumatic brain injuries, delirium, SUDs, or psychiatric conditions) should be managed in accordance with medically indicated intervention such as medical restraints or medications.
• If required, a request should be made for law enforcement officers to accompany EMS to provide support and to ensure the safety of the patient and EMS professionals during the transport.
• EMS professionals should receive specific training to manage acute psychiatric and SUD conditions, and should be aware of the life-threatening medical complications that can result from SUDs and psychiatric conditions/medications.

We recognize that patients with SMI require clinicians to work collaboratively, perhaps with law enforcement, to safely transport them from one point to another. Only when the rules we have outlined are followed will our patients get transported in such ways that allow them to get the care they need.
 

Dr. Norris is editor-in-chief of MDedge Psychiatry, and assistant professor of psychiatry and behavioral sciences at George Washington University, Washington. He serves as assistant dean of student affairs at the university, and medical director of psychiatric and behavioral sciences at GWU Hospital. Ms. Palmieri is a managing partner of Healthcare Legal Education & Consulting Network (HLECN), and the chief clinical officer and cofounder of XFERALL. HLECN focuses on clinical education and training, and XFERALL is a company that provides a technology platform aimed at improving access to care for behavioral health and medical patients. Ms. Slater is a managing partner of legal education for HLECN, and a trial attorney at Colley Shroyer & Abraham in Columbus, Ohio. Mr. Whaley is director of the safety and security department at GWU Hospital.

References

1. National Institute of Mental Health: Suicide.

2. National Institute on Drug Abuse. Overdose death rates. Revised January 2019.

3. Post by former NIMH Director Thomas Insel: No health without mental health. Sept. 6, 2011.

4. Dhar AK and Barton DA. Depression and the link with cardiovascular disease. Front Psychiatry. 2016 Mar 21;7:33.

5. Lichtman JH et al. Depression and coronary heart disease. Circulation. 2008;118:1768-75.

6. Hare DL et al. Depression and cardiovascular disease: A clinical review. European Heart J. 2014 Jun;35(21):1365-72.

7. “ ‘How many people have to die?’ SC mental health patients endure nightmare transport.” The News & Observer. 2019 May 29.

8. 42 C.F.R. Part 482. Part IV. Department of Health and Human Services. Medicare & Medicaid programs; Hospital conditions of participation; Patients’ rights; Final rule. 2006 Dec 8.

“I’ve given up, doctor. We gave it our best, but I am at the point where I want to end my life.” You receive this call at 2 a.m., and you’re flooded with a series of emotions and are bewildered – until your training kicks in.

Countless hours of working with patients in emergency department settings while on call as a resident inform your ability to triage the situation. Years of supervision guide your supportive statements as you work collaboratively with your patient to address the emotional and existential distress. As the call proceeds and you realize that your patient will require hospitalization, you are struck by a sobering question: “How am I going to arrange for my patient to go to the nearest hospital in the middle of the night?”

The options for transporting patients with serious mental illness (SMI) typically vary from bad to worse and usually filter down to three possibilities:

1. Get a friend or family member to transport them to the nearest ED.

2. Call emergency medical services (EMS) for transport to the nearest ED.

3. Call the police and request transport to the nearest ED.

Several factors would determine which of those options you would use alone or in combination. Current training paradigms for mental health professionals offer a limited body of literature on evidenced-based strategies for patients with SMI. Transporting high-risk psychiatric patients requires great care and respect, and in-depth knowledge about patients’ vulnerabilities. At best – if not handled properly – these experiences can aggravate patients’ mental health conditions. At worst, they can lead to the loss of our patients. Together, we have more than 40 years’ experience working in complex mental health care systems that run the gamut, from providing direct clinical care to directing mental health care divisions.

Sobering statistics prevail

In 2017, suicide was the 10th leading cause of death in the United States, accounting for more than 47,000 deaths. Suicide was the second-leading cause of death among individuals aged 10-34 and the fourth leading cause of death for individuals aged 35- 54.¹ In 2017, more than 70,200 Americans died from a drug overdose, including illicit drugs and prescription opioids.² Drug overdose deaths nearly quadrupled between 1999 and 2017, from 16,849 deaths to 70,237, respectively.²

The life expectancy of an American with SMI is 14-32 years less than that of the average population.³ Those numbers are on par with many sub-Saharan countries, including Sudan and Ethiopia, and surpass the health disparities for most racial and ethnic groups.

The decrease in life expectancy for people with SMI is rarely the result of suicide but rather the effect of medical comorbidities, including heart disease, stroke, pulmonary disease, diabetes, and cancer.³ Individuals with SMI are much more likely to suffer from chronic illnesses that are associated with co-occurring addictions, side effects of psychotropic medications, and social determinants of mental health, such as poverty.

Major depressive disorder among people with SMI presents acute and chronic medical risks. For example, people with major depressive disorder are at a higher risk for stroke and cardiovascular disease.⁴ There is a threefold increase in cardiac-related deaths for individuals who experience depression after a heart attack.⁵ In addition, depression increases the risk of cardiac-related death after a heart attack more than any other risk factor, except for congestive heart failure.⁶

The transportation challenge

When the complexity of psychiatric conditions is conceptualized to include decreased life expectancy because of medical comorbidities, medical complications that can result from psychotropic medications, and the high incidence of co-occurring substance use disorders (SUDs), it is clear why we are concerned about the type of transport used for patients experiencing a psychiatric emergency.

A common practice for patients presenting for medical treatment for a mental health condition is for them to be transported by law enforcement in handcuffs, or by private vehicle, because of a lack of medical transport options.

One tragic example occurred on Sept. 18, 2018, when two Horry County, S.C., deputies were providing a hospital-to-hospital transport for two mental health patients. The patients, who had no legal charges and were not under arrest, were locked in a transport cage in the back of a law enforcement vehicle for transport during Hurricane Florence. While the driver tried to move through floodwaters, the car stalled and became submerged. The patients were unable to open the locked cage door, and the deputies responsible for the transport did not have a key to unlock the cage.

The two women died as a result of the incident. Both deputies are facing two counts of involuntary manslaughter – with a potential prison sentence of 5 years each.⁷

The system that promotes the use of law enforcement to transport medical patients who are not in legal custody perpetuates a high risk to patients. Also at risk are law enforcement professionals who often are not adequately trained to evaluate, intervene, and manage patients in need of medical treatment (for acute medical, SUDs, or mental illness).
 

Recommendations for transporting high-risk patients

The legal and regulatory standards required by the Centers for Medicare & Medicaid Services guidelines⁸ for behavioral health patients are consistent in saying that law enforcement restraints cannot be used in hospital settings – unless the patient is under law enforcement custody. If the patient is admitted to an inpatient psychiatric unit, law enforcement restraints are never allowed to be used. Despite those guidelines for handling these situations within hospital settings, a similar standard does not exist for interhospital transport of high-risk behavioral health patients.

Patients often are transported between facilities by law enforcement, and at times, with the use of law enforcement restraints. However, use of law enforcement for interhospital transport of patients not in the custody of law enforcement is both detrimental to and clinically dangerous for the patient. Not only does the scenario put the patient at risk, but it also places law enforcement professionals at risk with the potential for legal liability if the patient medically decompensates during the transport.

Also, using law enforcement to intervene and provide transportation for behavioral health patients in crisis might cause further harm to the patient’s psychological condition and deter the patient from presenting for treatment.

The appropriate level of interfacility transport for a behavioral health patient requiring an inpatient level of care is secure transport with trained medical professionals. If necessary, restraint guidelines should follow the same standard as they do in hospital settings. In situations with high risk for violence or agitation, law enforcement should be requested to accompany EMS during the transport. Handling the situation in this way allows for a collaborative approach to provide adequate medical support, and provide for the physical safety and security of the patient – and of EMS personnel.

Across police and sheriffs’ departments nationwide, law enforcement officers are required to transport mental health patients from one location or hospital to another. Hospitals and outpatient locations, often with no alternative, rely on local law enforcement agencies to provide safe transport between acute and mental health facilities. Departmental policies and the widespread belief that mental health patients automatically pose a substantial danger to themselves or others have led to these patients being handcuffed and put in the back of police cruisers. Essentially, they are treated like criminals who are under arrest.

The CMS has strict criteria for ordering, applying, evaluating, reevaluating, and reporting restraint-associated deaths. Likewise, The Joint Commission, during its accreditation survey, rightly scrutinizes a facility’s use of restraints. Both the CMS and The Joint Commission define restraint by the function of the device and not the type of the device.

According to the CMS, a restraint is any manual method, physical or mechanic device, material, or equipment that immobilizes or reduces the ability of a patient to move his or her arms, legs, body, or head freely. Within a police cruiser, handcuffs on a mental health patient who is not under arrest would fall squarely within this definition of restraint.

A patient’s current behavior or clinical needs – not history or diagnosis – should determine whether a restraint is warranted. A patient experiencing a psychiatric crisis who is not under arrest might very well escalate and become destructive and combative when being placed in handcuffs in the back of a police vehicle. What should police do at that point? Should they arrest the individual? We offer the following five recommendations.
 

Key recommendations

• Patients who require interhospital transport for an acute behavioral health crisis should be transported by medical professionals with the training and expertise to manage mental health and medical conditions.
• Interhospital transport restraint guidelines should be in line with CMS guidelines for hospital restraints. No patient that is not under law enforcement custody should be transported in law enforcement restraints.
• Patients at high risk for violence/agitation (an underlying condition causing violence/agitation may include dementia, traumatic brain injuries, delirium, SUDs, or psychiatric conditions) should be managed in accordance with medically indicated intervention such as medical restraints or medications.
• If required, a request should be made for law enforcement officers to accompany EMS to provide support and to ensure the safety of the patient and EMS professionals during the transport.
• EMS professionals should receive specific training to manage acute psychiatric and SUD conditions, and should be aware of the life-threatening medical complications that can result from SUDs and psychiatric conditions/medications.

We recognize that patients with SMI require clinicians to work collaboratively, perhaps with law enforcement, to safely transport them from one point to another. Only when the rules we have outlined are followed will our patients get transported in such ways that allow them to get the care they need.
 

Dr. Norris is editor-in-chief of MDedge Psychiatry, and assistant professor of psychiatry and behavioral sciences at George Washington University, Washington. He serves as assistant dean of student affairs at the university, and medical director of psychiatric and behavioral sciences at GWU Hospital. Ms. Palmieri is a managing partner of Healthcare Legal Education & Consulting Network (HLECN), and the chief clinical officer and cofounder of XFERALL. HLECN focuses on clinical education and training, and XFERALL is a company that provides a technology platform aimed at improving access to care for behavioral health and medical patients. Ms. Slater is a managing partner of legal education for HLECN, and a trial attorney at Colley Shroyer & Abraham in Columbus, Ohio. Mr. Whaley is director of the safety and security department at GWU Hospital.

References

1. National Institute of Mental Health: Suicide.

2. National Institute on Drug Abuse. Overdose death rates. Revised January 2019.

3. Post by former NIMH Director Thomas Insel: No health without mental health. Sept. 6, 2011.

4. Dhar AK and Barton DA. Depression and the link with cardiovascular disease. Front Psychiatry. 2016 Mar 21;7:33.

5. Lichtman JH et al. Depression and coronary heart disease. Circulation. 2008;118:1768-75.

6. Hare DL et al. Depression and cardiovascular disease: A clinical review. European Heart J. 2014 Jun;35(21):1365-72.

7. “ ‘How many people have to die?’ SC mental health patients endure nightmare transport.” The News & Observer. 2019 May 29.

8. 42 C.F.R. Part 482. Part IV. Department of Health and Human Services. Medicare & Medicaid programs; Hospital conditions of participation; Patients’ rights; Final rule. 2006 Dec 8.

“I’ve given up, doctor. We gave it our best, but I am at the point where I want to end my life.” You receive this call at 2 a.m., and you’re flooded with a series of emotions and are bewildered – until your training kicks in.

Countless hours of working with patients in emergency department settings while on call as a resident inform your ability to triage the situation. Years of supervision guide your supportive statements as you work collaboratively with your patient to address the emotional and existential distress. As the call proceeds and you realize that your patient will require hospitalization, you are struck by a sobering question: “How am I going to arrange for my patient to go to the nearest hospital in the middle of the night?”

The options for transporting patients with serious mental illness (SMI) typically vary from bad to worse and usually filter down to three possibilities:

1. Get a friend or family member to transport them to the nearest ED.

2. Call emergency medical services (EMS) for transport to the nearest ED.

3. Call the police and request transport to the nearest ED.

Several factors would determine which of those options you would use alone or in combination. Current training paradigms for mental health professionals offer a limited body of literature on evidenced-based strategies for patients with SMI. Transporting high-risk psychiatric patients requires great care and respect, and in-depth knowledge about patients’ vulnerabilities. At best – if not handled properly – these experiences can aggravate patients’ mental health conditions. At worst, they can lead to the loss of our patients. Together, we have more than 40 years’ experience working in complex mental health care systems that run the gamut, from providing direct clinical care to directing mental health care divisions.

Sobering statistics prevail

In 2017, suicide was the 10th leading cause of death in the United States, accounting for more than 47,000 deaths. Suicide was the second-leading cause of death among individuals aged 10-34 and the fourth leading cause of death for individuals aged 35- 54.¹ In 2017, more than 70,200 Americans died from a drug overdose, including illicit drugs and prescription opioids.² Drug overdose deaths nearly quadrupled between 1999 and 2017, from 16,849 deaths to 70,237, respectively.²

The life expectancy of an American with SMI is 14-32 years less than that of the average population.³ Those numbers are on par with many sub-Saharan countries, including Sudan and Ethiopia, and surpass the health disparities for most racial and ethnic groups.

The decrease in life expectancy for people with SMI is rarely the result of suicide but rather the effect of medical comorbidities, including heart disease, stroke, pulmonary disease, diabetes, and cancer.³ Individuals with SMI are much more likely to suffer from chronic illnesses that are associated with co-occurring addictions, side effects of psychotropic medications, and social determinants of mental health, such as poverty.

Major depressive disorder among people with SMI presents acute and chronic medical risks. For example, people with major depressive disorder are at a higher risk for stroke and cardiovascular disease.⁴ There is a threefold increase in cardiac-related deaths for individuals who experience depression after a heart attack.⁵ In addition, depression increases the risk of cardiac-related death after a heart attack more than any other risk factor, except for congestive heart failure.⁶

The transportation challenge

When the complexity of psychiatric conditions is conceptualized to include decreased life expectancy because of medical comorbidities, medical complications that can result from psychotropic medications, and the high incidence of co-occurring substance use disorders (SUDs), it is clear why we are concerned about the type of transport used for patients experiencing a psychiatric emergency.

A common practice for patients presenting for medical treatment for a mental health condition is for them to be transported by law enforcement in handcuffs, or by private vehicle, because of a lack of medical transport options.

One tragic example occurred on Sept. 18, 2018, when two Horry County, S.C., deputies were providing a hospital-to-hospital transport for two mental health patients. The patients, who had no legal charges and were not under arrest, were locked in a transport cage in the back of a law enforcement vehicle for transport during Hurricane Florence. While the driver tried to move through floodwaters, the car stalled and became submerged. The patients were unable to open the locked cage door, and the deputies responsible for the transport did not have a key to unlock the cage.

The two women died as a result of the incident. Both deputies are facing two counts of involuntary manslaughter – with a potential prison sentence of 5 years each.⁷

The system that promotes the use of law enforcement to transport medical patients who are not in legal custody perpetuates a high risk to patients. Also at risk are law enforcement professionals who often are not adequately trained to evaluate, intervene, and manage patients in need of medical treatment (for acute medical, SUDs, or mental illness).
 

Recommendations for transporting high-risk patients

The legal and regulatory standards required by the Centers for Medicare & Medicaid Services guidelines⁸ for behavioral health patients are consistent in saying that law enforcement restraints cannot be used in hospital settings – unless the patient is under law enforcement custody. If the patient is admitted to an inpatient psychiatric unit, law enforcement restraints are never allowed to be used. Despite those guidelines for handling these situations within hospital settings, a similar standard does not exist for interhospital transport of high-risk behavioral health patients.

Patients often are transported between facilities by law enforcement, and at times, with the use of law enforcement restraints. However, use of law enforcement for interhospital transport of patients not in the custody of law enforcement is both detrimental to and clinically dangerous for the patient. Not only does the scenario put the patient at risk, but it also places law enforcement professionals at risk with the potential for legal liability if the patient medically decompensates during the transport.

Also, using law enforcement to intervene and provide transportation for behavioral health patients in crisis might cause further harm to the patient’s psychological condition and deter the patient from presenting for treatment.

The appropriate level of interfacility transport for a behavioral health patient requiring an inpatient level of care is secure transport with trained medical professionals. If necessary, restraint guidelines should follow the same standard as they do in hospital settings. In situations with high risk for violence or agitation, law enforcement should be requested to accompany EMS during the transport. Handling the situation in this way allows for a collaborative approach to provide adequate medical support, and provide for the physical safety and security of the patient – and of EMS personnel.

Across police and sheriffs’ departments nationwide, law enforcement officers are required to transport mental health patients from one location or hospital to another. Hospitals and outpatient locations, often with no alternative, rely on local law enforcement agencies to provide safe transport between acute and mental health facilities. Departmental policies and the widespread belief that mental health patients automatically pose a substantial danger to themselves or others have led to these patients being handcuffed and put in the back of police cruisers. Essentially, they are treated like criminals who are under arrest.

The CMS has strict criteria for ordering, applying, evaluating, reevaluating, and reporting restraint-associated deaths. Likewise, The Joint Commission, during its accreditation survey, rightly scrutinizes a facility’s use of restraints. Both the CMS and The Joint Commission define restraint by the function of the device and not the type of the device.

According to the CMS, a restraint is any manual method, physical or mechanic device, material, or equipment that immobilizes or reduces the ability of a patient to move his or her arms, legs, body, or head freely. Within a police cruiser, handcuffs on a mental health patient who is not under arrest would fall squarely within this definition of restraint.

A patient’s current behavior or clinical needs – not history or diagnosis – should determine whether a restraint is warranted. A patient experiencing a psychiatric crisis who is not under arrest might very well escalate and become destructive and combative when being placed in handcuffs in the back of a police vehicle. What should police do at that point? Should they arrest the individual? We offer the following five recommendations.
 

Key recommendations

• Patients who require interhospital transport for an acute behavioral health crisis should be transported by medical professionals with the training and expertise to manage mental health and medical conditions.
• Interhospital transport restraint guidelines should be in line with CMS guidelines for hospital restraints. No patient that is not under law enforcement custody should be transported in law enforcement restraints.
• Patients at high risk for violence/agitation (an underlying condition causing violence/agitation may include dementia, traumatic brain injuries, delirium, SUDs, or psychiatric conditions) should be managed in accordance with medically indicated intervention such as medical restraints or medications.
• If required, a request should be made for law enforcement officers to accompany EMS to provide support and to ensure the safety of the patient and EMS professionals during the transport.
• EMS professionals should receive specific training to manage acute psychiatric and SUD conditions, and should be aware of the life-threatening medical complications that can result from SUDs and psychiatric conditions/medications.

We recognize that patients with SMI require clinicians to work collaboratively, perhaps with law enforcement, to safely transport them from one point to another. Only when the rules we have outlined are followed will our patients get transported in such ways that allow them to get the care they need.
 

Dr. Norris is editor-in-chief of MDedge Psychiatry, and assistant professor of psychiatry and behavioral sciences at George Washington University, Washington. He serves as assistant dean of student affairs at the university, and medical director of psychiatric and behavioral sciences at GWU Hospital. Ms. Palmieri is a managing partner of Healthcare Legal Education & Consulting Network (HLECN), and the chief clinical officer and cofounder of XFERALL. HLECN focuses on clinical education and training, and XFERALL is a company that provides a technology platform aimed at improving access to care for behavioral health and medical patients. Ms. Slater is a managing partner of legal education for HLECN, and a trial attorney at Colley Shroyer & Abraham in Columbus, Ohio. Mr. Whaley is director of the safety and security department at GWU Hospital.

References

1. National Institute of Mental Health: Suicide.

2. National Institute on Drug Abuse. Overdose death rates. Revised January 2019.

3. Post by former NIMH Director Thomas Insel: No health without mental health. Sept. 6, 2011.

4. Dhar AK and Barton DA. Depression and the link with cardiovascular disease. Front Psychiatry. 2016 Mar 21;7:33.

5. Lichtman JH et al. Depression and coronary heart disease. Circulation. 2008;118:1768-75.

6. Hare DL et al. Depression and cardiovascular disease: A clinical review. European Heart J. 2014 Jun;35(21):1365-72.

7. “ ‘How many people have to die?’ SC mental health patients endure nightmare transport.” The News & Observer. 2019 May 29.

8. 42 C.F.R. Part 482. Part IV. Department of Health and Human Services. Medicare & Medicaid programs; Hospital conditions of participation; Patients’ rights; Final rule. 2006 Dec 8.

It’s an honor and a great pleasure to take on this new role as editor in chief for Hematology News. When I got the call from our outgoing editor Matt Kalaycio, MD, a year ago asking me to consider stepping into his shoes a few things flashed through my mind. Will I do this role justice? Do I have what it takes to be a great editor in chief?

Then I thought – will there be time to learn the ropes or will this be like most of my career positions where you jump into the water first and figure out how to swim later? I never once thought: “Oh no … I cannot do this and I’m going to say no!” So here I am today, reporting for duty as the editor in chief of Hematology News.

I was once accused of being “intellectually restless” which is a badge I wear with honor and is perhaps a trait I learned from my mom who was a public health nurse in Nigeria back in the seventies. She broke a lot of glass ceilings in her day – Cornell University–trained advanced practice nurse, mother of five girls, with a degree in textile and design and business accounting. She also got a certificate in baking and cake decorating and she used all her skills and certifications to raise her daughters to believe the sky was the limit.

Mom started one of the first licensed practical nursing (LPN) schools in Nigeria and I learned from her to never back down from a challenge – on a dare I got my LPN certification before I went to medical school.

You see I love a challenge and an adventure and serving as the editor in chief for Hematology News provides me with an amazing platform and opportunity to achieve a lot of firsts and satisfy that hunger to make a global difference that has always guided my career.

I’ve thought long and hard about what and how I envision this role shaping out. What do I want our readers to take away from this newspaper under my leadership? What common themes will be woven in every edition? I want our readers to be challenged and keep learning. Not just about hematologic disorders and the latest scientific breakthroughs that drive improved patient outcomes for blood disorders but also about the intersectionality between hematology and other life disciplines.

I remember taking an art class in high school learning about dimensions and proportions of buildings and I dreamt of becoming an architect. Fast forward 2 decades later, I attended a medical conference at Georgia Institute of Technology in Atlanta and was enthralled at how various sessions demonstrated how art, engineering and architecture played a role in the development and design of orthopedic prosthesis used in amputees. I learned how engineering shaped our understanding of microfluidics, something that is now being leveraged in drug delivery science and in the field of hematology.

I want our readers to keep learning not just from esteemed scientists and clinicians but from various stakeholders – the patient, the high school student, the spouse of the hematologist, not to mention our residents and fellows, who are the future of our discipline. Furthermore, I want our readers to see the human side of hematology – the face behind the scientist or clinician and the reality of what joys and tolls we experience in this field.

A Fall 2019 Medscape survey cited the prevalence of physician burnout among hematology oncology physicians: 32% of oncologists were burned out, 4% were depressed, and 9% were both burned out and depressed. These are statistics that cannot be ignored or minimized a they ultimately have a profound impact on patient outcomes. You see, I really believe that much of the success we have in healing our patients relies not just on the medications we prescribe or on the procedures we perform or the science we leverage. Much of healing in medicine and in hematology is based on the secret sauce of being humane – defined by Merriam-Webster dictionary as the character trait that is “marked by demonstrating compassion, sympathy, or consideration for humans or animals.”

So, to sum up what to expect in the coming year from your editor in chief? Look out for some thought-provoking, fun, and unusual perspectives that are aimed to keep us learning, growing, and remaining humane in our interactions with our patients, each other, but more importantly with ourselves. #bringit2020 #HematologyNews #NewEditorInChiefPerspectives.

Ifeyinwa (Ify) Osunkwo, MD, MPH, is a professor of medicine and the director of the Sickle Cell Disease Enterprise at the Levine Cancer Institute, Atrium Health, Charlotte, N.C. She is the editor in chief of Hematology News.

It’s an honor and a great pleasure to take on this new role as editor in chief for Hematology News. When I got the call from our outgoing editor Matt Kalaycio, MD, a year ago asking me to consider stepping into his shoes a few things flashed through my mind. Will I do this role justice? Do I have what it takes to be a great editor in chief?

Then I thought – will there be time to learn the ropes or will this be like most of my career positions where you jump into the water first and figure out how to swim later? I never once thought: “Oh no … I cannot do this and I’m going to say no!” So here I am today, reporting for duty as the editor in chief of Hematology News.

I was once accused of being “intellectually restless” which is a badge I wear with honor and is perhaps a trait I learned from my mom who was a public health nurse in Nigeria back in the seventies. She broke a lot of glass ceilings in her day – Cornell University–trained advanced practice nurse, mother of five girls, with a degree in textile and design and business accounting. She also got a certificate in baking and cake decorating and she used all her skills and certifications to raise her daughters to believe the sky was the limit.

Mom started one of the first licensed practical nursing (LPN) schools in Nigeria and I learned from her to never back down from a challenge – on a dare I got my LPN certification before I went to medical school.

You see I love a challenge and an adventure and serving as the editor in chief for Hematology News provides me with an amazing platform and opportunity to achieve a lot of firsts and satisfy that hunger to make a global difference that has always guided my career.

I’ve thought long and hard about what and how I envision this role shaping out. What do I want our readers to take away from this newspaper under my leadership? What common themes will be woven in every edition? I want our readers to be challenged and keep learning. Not just about hematologic disorders and the latest scientific breakthroughs that drive improved patient outcomes for blood disorders but also about the intersectionality between hematology and other life disciplines.

I remember taking an art class in high school learning about dimensions and proportions of buildings and I dreamt of becoming an architect. Fast forward 2 decades later, I attended a medical conference at Georgia Institute of Technology in Atlanta and was enthralled at how various sessions demonstrated how art, engineering and architecture played a role in the development and design of orthopedic prosthesis used in amputees. I learned how engineering shaped our understanding of microfluidics, something that is now being leveraged in drug delivery science and in the field of hematology.

I want our readers to keep learning not just from esteemed scientists and clinicians but from various stakeholders – the patient, the high school student, the spouse of the hematologist, not to mention our residents and fellows, who are the future of our discipline. Furthermore, I want our readers to see the human side of hematology – the face behind the scientist or clinician and the reality of what joys and tolls we experience in this field.

A Fall 2019 Medscape survey cited the prevalence of physician burnout among hematology oncology physicians: 32% of oncologists were burned out, 4% were depressed, and 9% were both burned out and depressed. These are statistics that cannot be ignored or minimized a they ultimately have a profound impact on patient outcomes. You see, I really believe that much of the success we have in healing our patients relies not just on the medications we prescribe or on the procedures we perform or the science we leverage. Much of healing in medicine and in hematology is based on the secret sauce of being humane – defined by Merriam-Webster dictionary as the character trait that is “marked by demonstrating compassion, sympathy, or consideration for humans or animals.”

So, to sum up what to expect in the coming year from your editor in chief? Look out for some thought-provoking, fun, and unusual perspectives that are aimed to keep us learning, growing, and remaining humane in our interactions with our patients, each other, but more importantly with ourselves. #bringit2020 #HematologyNews #NewEditorInChiefPerspectives.

Ifeyinwa (Ify) Osunkwo, MD, MPH, is a professor of medicine and the director of the Sickle Cell Disease Enterprise at the Levine Cancer Institute, Atrium Health, Charlotte, N.C. She is the editor in chief of Hematology News.

It’s an honor and a great pleasure to take on this new role as editor in chief for Hematology News. When I got the call from our outgoing editor Matt Kalaycio, MD, a year ago asking me to consider stepping into his shoes a few things flashed through my mind. Will I do this role justice? Do I have what it takes to be a great editor in chief?

Then I thought – will there be time to learn the ropes or will this be like most of my career positions where you jump into the water first and figure out how to swim later? I never once thought: “Oh no … I cannot do this and I’m going to say no!” So here I am today, reporting for duty as the editor in chief of Hematology News.

I was once accused of being “intellectually restless” which is a badge I wear with honor and is perhaps a trait I learned from my mom who was a public health nurse in Nigeria back in the seventies. She broke a lot of glass ceilings in her day – Cornell University–trained advanced practice nurse, mother of five girls, with a degree in textile and design and business accounting. She also got a certificate in baking and cake decorating and she used all her skills and certifications to raise her daughters to believe the sky was the limit.

Mom started one of the first licensed practical nursing (LPN) schools in Nigeria and I learned from her to never back down from a challenge – on a dare I got my LPN certification before I went to medical school.

You see I love a challenge and an adventure and serving as the editor in chief for Hematology News provides me with an amazing platform and opportunity to achieve a lot of firsts and satisfy that hunger to make a global difference that has always guided my career.

I’ve thought long and hard about what and how I envision this role shaping out. What do I want our readers to take away from this newspaper under my leadership? What common themes will be woven in every edition? I want our readers to be challenged and keep learning. Not just about hematologic disorders and the latest scientific breakthroughs that drive improved patient outcomes for blood disorders but also about the intersectionality between hematology and other life disciplines.

I remember taking an art class in high school learning about dimensions and proportions of buildings and I dreamt of becoming an architect. Fast forward 2 decades later, I attended a medical conference at Georgia Institute of Technology in Atlanta and was enthralled at how various sessions demonstrated how art, engineering and architecture played a role in the development and design of orthopedic prosthesis used in amputees. I learned how engineering shaped our understanding of microfluidics, something that is now being leveraged in drug delivery science and in the field of hematology.

I want our readers to keep learning not just from esteemed scientists and clinicians but from various stakeholders – the patient, the high school student, the spouse of the hematologist, not to mention our residents and fellows, who are the future of our discipline. Furthermore, I want our readers to see the human side of hematology – the face behind the scientist or clinician and the reality of what joys and tolls we experience in this field.

A Fall 2019 Medscape survey cited the prevalence of physician burnout among hematology oncology physicians: 32% of oncologists were burned out, 4% were depressed, and 9% were both burned out and depressed. These are statistics that cannot be ignored or minimized a they ultimately have a profound impact on patient outcomes. You see, I really believe that much of the success we have in healing our patients relies not just on the medications we prescribe or on the procedures we perform or the science we leverage. Much of healing in medicine and in hematology is based on the secret sauce of being humane – defined by Merriam-Webster dictionary as the character trait that is “marked by demonstrating compassion, sympathy, or consideration for humans or animals.”

So, to sum up what to expect in the coming year from your editor in chief? Look out for some thought-provoking, fun, and unusual perspectives that are aimed to keep us learning, growing, and remaining humane in our interactions with our patients, each other, but more importantly with ourselves. #bringit2020 #HematologyNews #NewEditorInChiefPerspectives.

Ifeyinwa (Ify) Osunkwo, MD, MPH, is a professor of medicine and the director of the Sickle Cell Disease Enterprise at the Levine Cancer Institute, Atrium Health, Charlotte, N.C. She is the editor in chief of Hematology News.

In this edition of “How I Will Treat My Next Patient,” I review “guidelines for today” and speculate about “guidelines for tomorrow,” highlighting recommendations from the American Society of Clinical Oncology about hereditary cancer testing in epithelial ovarian cancer (OC) and data that support a reexamination of the age at which screening for colorectal cancer (CRC) should begin.

ASCO guidelines on genetic testing in epithelial ovarian cancer

After reviewing 19 studies, including 6 meta-analyses; 11 randomized, controlled trials; and 2 observational studies, an ASCO panel recommended germline genetic testing for BRCA1, BRCA2, and other ovarian cancer susceptibility genes for all women with newly diagnosed epithelial OC, regardless of family history (J Clin Oncol. 2020 Jan 27. doi: 10.1200/JCO.19.02960).

For OC patients with a germline mutation, cascade testing of first- and second-degree relatives was strongly urged. For patients without a germline mutation, the guidelines recommended offering somatic tumor testing for BRCA1/2 pathogenic or likely pathogenic variants at disease recurrence or after initial therapy and for mismatch repair deficiency (MMRD) in patients with clear cell, endometrioid, or mucinous and potentially other histologic types of OC. The authors cautioned that the discussion of testing results should involve professionals with expertise in the surveillance and management of hereditary cancer syndromes.

The panel said the discovery of germline or somatic pathogenic or likely pathogenic BRCA1/2 variants should lead to considering treatment with Food and Drug Administration–approved poly (ADP-ribose) polymerase inhibitors, including niraparib, olaparib, and rucaparib. Identification of MMRD in a patient with recurrent OC should trigger consideration of treatment with pembrolizumab, consistent with its labeled indications, and surveillance for other malignancies.

The guidelines cautioned that, when patients have variants of uncertain significance on germline testing, “clinical features and family history should inform clinical decision making.” Similarly, the panel made no recommendation regarding testing for or making treatment decisions based on tests for homologous recombination deficiency.
 

How these results influence practice

Every oncologist recognizes that better understanding of cancer biology can guide personalized diagnostic, predictive, prognostic, and therapeutic strategies for patients and their family members.

It is estimated that approximately 25% of all OC is caused by a heritable genetic condition. Germline mutations in BRCA1 and BRCA2 are identified in 13%-15% of patients with OC, and somatic mutations are found in an additional 7%. Perhaps 6% of all ovarian/fallopian tube/peritoneal cancers are caused by mutations in genes other than BRCA1/2. For that reason, germline sequencing should be performed via multigene panels that assess BRCA1/2 and other relevant mutations.

MMDR has been found in 10%-12% of unselected epithelial OC, with increased representation in nonserous histologies. That frequency is high enough to justify testing for it routinely.

Unfortunately, only about 30% of women undergo genetic testing. Given the frequency of molecular abnormalities in OC, this is problematic in every conceivable domain of clinical care for patients and family members. ASCO’s comprehensive, educational guidelines provide a template for shared decision making and utilize resources that are available in almost all clinical settings. For those clinicians who have recommended genetic testing for all epithelial OC patients, these guidelines are practice reaffirming. For the rest of us, they are practice changing.
 

Colorectal cancer cases spike after start of routine screening

Instead of examining CRC incidence by the usual 5- or 10-year age ranges, a group of researchers looked at CRC incidence in 1-year intervals for adults aged 30-60 years in the SEER-18 registry from 2000 to 2015 (JAMA Network Open. 2020 Jan 31. doi: 10.1001/jamanetworkopen.2019.20407). The researchers focused their attention on the transition between age 49 and 50 years, which is when routine screening generally begins and case-finding based on symptoms and signs of CRC alone ideally ends.

The group’s hypothesis was that steep increases in CRC incidence between ages 49 and 50 would be consistent with a high, undetected preclinical case burden in patients aged younger than 50 years and that this “real-world” registry data could help estimate outcomes of screening at younger ages. The researchers found that CRC incidence increased by 46.1% in the transition period from age 49 to 50 years. A majority (93%) of these cases were invasive and, therefore, likely to be clinically relevant. The increase in cancer rates occurred across geographical regions, gender, and race, and likely reflected the impact of screening. The states with the steepest increases in CRC between ages 49 and 50 (Connecticut and Utah) were the states with the first and third highest CRC screening rates for individuals 50 years of age and older.

Stage stratification showed steep increases in incidence in the target age range for localized and regional CRC and for colon and rectal tumors. In the transition between age 49 and 50, the researchers found a significant increase in 5-year relative survival (6.9% absolute increase, 10% relative increase), suggesting that earlier screening had a survival impact, apart from the effects of treatment in cases diagnosed after symptoms occurred.

The authors concluded that their analysis of the transition from age 49 to 50 years provides registry-based data regarding CRC risk among individuals younger than 50, which can add to existing modeling studies to help inform guidelines about the age at which to initiate screening.
 

How these results influence practice

Early-onset CRC (EOCRC) incidence is increasing, with controversy regarding whether average-risk screening should begin before age 50 years. The justification for starting screening at age 50 is that there is a near doubling of incidence from patients aged 45-49 years (34 per 100,000) to those aged 50-54 years (60.2 per 100,000).

However, the increase in CRC incidence beyond age 50 may not be because rates are truly lower among younger individuals but rather because of uneven screening between the two populations. Doubling times for CRCs have been estimated to be perhaps as long as 1,000 days. Because many CRCs are asymptomatic, observed incidence rates of EOCRC in SEER registries do not reflect preclinical CRC case burdens in younger patients.

The current interrogation of SEER-18 data to identify preexisting CRC that was clinically silent in the 1-year interval between age 49 and 50 is highly supportive of a large undiagnosed number of EOCRC cases. In SEER-18, CRC rates increased 46.1% in this 1-year age transition, more than in earlier 1-year age transitions. With almost 93% of cases being invasive, these data suggest a high case burden of preclinical, undetected, clinically relevant EOCRC in younger patients that is not reflected in observed SEER incidence rates examining wider age group intervals.

The dual goals of screening for CRC are to prevent malignant neoplasms by the removal of precancerous polyps and improve cancer-specific survival. The data presented suggest that, by starting average-risk screening at age 50 years, we may be “missing the window.” The 6.9% absolute and 10.1% relative survival increase in the target transition period suggest the authors’ hypothesis is correct.

As in any real-world database survey, the analysis is limited by a lack of specific outcomes data, the inability to determine when the cancers developed, and how long they germinated. Because of those limitations and others, more detailed studies are needed to determine the ideal age at which to begin CRC screening.

Modeling studies incorporating the steep incidence inflection point at 49-50 years can be conducted to estimate the incidence rate increase at, for example, 45 years; the cost-benefit ratio; quality-adjusted life-years gained; and other important endpoints. However, this review of over 170,000 cases of CRC, with a data-completeness rate of over 98%, over the 15-year time frame when CRC screening became common, supports a fresh look at whether it is within our power to improve outcomes for EOCRC patients by using existing technology but applying it earlier.

Dr. Lyss has been a community-based medical oncologist and clinical researcher for more than 35 years, practicing in St. Louis. His clinical and research interests are in the prevention, diagnosis, and treatment of breast and lung cancers and in expanding access to clinical trials to medically underserved populations.

In this edition of “How I Will Treat My Next Patient,” I review “guidelines for today” and speculate about “guidelines for tomorrow,” highlighting recommendations from the American Society of Clinical Oncology about hereditary cancer testing in epithelial ovarian cancer (OC) and data that support a reexamination of the age at which screening for colorectal cancer (CRC) should begin.

ASCO guidelines on genetic testing in epithelial ovarian cancer

After reviewing 19 studies, including 6 meta-analyses; 11 randomized, controlled trials; and 2 observational studies, an ASCO panel recommended germline genetic testing for BRCA1, BRCA2, and other ovarian cancer susceptibility genes for all women with newly diagnosed epithelial OC, regardless of family history (J Clin Oncol. 2020 Jan 27. doi: 10.1200/JCO.19.02960).

For OC patients with a germline mutation, cascade testing of first- and second-degree relatives was strongly urged. For patients without a germline mutation, the guidelines recommended offering somatic tumor testing for BRCA1/2 pathogenic or likely pathogenic variants at disease recurrence or after initial therapy and for mismatch repair deficiency (MMRD) in patients with clear cell, endometrioid, or mucinous and potentially other histologic types of OC. The authors cautioned that the discussion of testing results should involve professionals with expertise in the surveillance and management of hereditary cancer syndromes.

The panel said the discovery of germline or somatic pathogenic or likely pathogenic BRCA1/2 variants should lead to considering treatment with Food and Drug Administration–approved poly (ADP-ribose) polymerase inhibitors, including niraparib, olaparib, and rucaparib. Identification of MMRD in a patient with recurrent OC should trigger consideration of treatment with pembrolizumab, consistent with its labeled indications, and surveillance for other malignancies.

The guidelines cautioned that, when patients have variants of uncertain significance on germline testing, “clinical features and family history should inform clinical decision making.” Similarly, the panel made no recommendation regarding testing for or making treatment decisions based on tests for homologous recombination deficiency.
 

How these results influence practice

Every oncologist recognizes that better understanding of cancer biology can guide personalized diagnostic, predictive, prognostic, and therapeutic strategies for patients and their family members.

It is estimated that approximately 25% of all OC is caused by a heritable genetic condition. Germline mutations in BRCA1 and BRCA2 are identified in 13%-15% of patients with OC, and somatic mutations are found in an additional 7%. Perhaps 6% of all ovarian/fallopian tube/peritoneal cancers are caused by mutations in genes other than BRCA1/2. For that reason, germline sequencing should be performed via multigene panels that assess BRCA1/2 and other relevant mutations.

MMDR has been found in 10%-12% of unselected epithelial OC, with increased representation in nonserous histologies. That frequency is high enough to justify testing for it routinely.

Unfortunately, only about 30% of women undergo genetic testing. Given the frequency of molecular abnormalities in OC, this is problematic in every conceivable domain of clinical care for patients and family members. ASCO’s comprehensive, educational guidelines provide a template for shared decision making and utilize resources that are available in almost all clinical settings. For those clinicians who have recommended genetic testing for all epithelial OC patients, these guidelines are practice reaffirming. For the rest of us, they are practice changing.
 

Colorectal cancer cases spike after start of routine screening

Instead of examining CRC incidence by the usual 5- or 10-year age ranges, a group of researchers looked at CRC incidence in 1-year intervals for adults aged 30-60 years in the SEER-18 registry from 2000 to 2015 (JAMA Network Open. 2020 Jan 31. doi: 10.1001/jamanetworkopen.2019.20407). The researchers focused their attention on the transition between age 49 and 50 years, which is when routine screening generally begins and case-finding based on symptoms and signs of CRC alone ideally ends.

The group’s hypothesis was that steep increases in CRC incidence between ages 49 and 50 would be consistent with a high, undetected preclinical case burden in patients aged younger than 50 years and that this “real-world” registry data could help estimate outcomes of screening at younger ages. The researchers found that CRC incidence increased by 46.1% in the transition period from age 49 to 50 years. A majority (93%) of these cases were invasive and, therefore, likely to be clinically relevant. The increase in cancer rates occurred across geographical regions, gender, and race, and likely reflected the impact of screening. The states with the steepest increases in CRC between ages 49 and 50 (Connecticut and Utah) were the states with the first and third highest CRC screening rates for individuals 50 years of age and older.

Stage stratification showed steep increases in incidence in the target age range for localized and regional CRC and for colon and rectal tumors. In the transition between age 49 and 50, the researchers found a significant increase in 5-year relative survival (6.9% absolute increase, 10% relative increase), suggesting that earlier screening had a survival impact, apart from the effects of treatment in cases diagnosed after symptoms occurred.

The authors concluded that their analysis of the transition from age 49 to 50 years provides registry-based data regarding CRC risk among individuals younger than 50, which can add to existing modeling studies to help inform guidelines about the age at which to initiate screening.
 

How these results influence practice

Early-onset CRC (EOCRC) incidence is increasing, with controversy regarding whether average-risk screening should begin before age 50 years. The justification for starting screening at age 50 is that there is a near doubling of incidence from patients aged 45-49 years (34 per 100,000) to those aged 50-54 years (60.2 per 100,000).

However, the increase in CRC incidence beyond age 50 may not be because rates are truly lower among younger individuals but rather because of uneven screening between the two populations. Doubling times for CRCs have been estimated to be perhaps as long as 1,000 days. Because many CRCs are asymptomatic, observed incidence rates of EOCRC in SEER registries do not reflect preclinical CRC case burdens in younger patients.

The current interrogation of SEER-18 data to identify preexisting CRC that was clinically silent in the 1-year interval between age 49 and 50 is highly supportive of a large undiagnosed number of EOCRC cases. In SEER-18, CRC rates increased 46.1% in this 1-year age transition, more than in earlier 1-year age transitions. With almost 93% of cases being invasive, these data suggest a high case burden of preclinical, undetected, clinically relevant EOCRC in younger patients that is not reflected in observed SEER incidence rates examining wider age group intervals.

The dual goals of screening for CRC are to prevent malignant neoplasms by the removal of precancerous polyps and improve cancer-specific survival. The data presented suggest that, by starting average-risk screening at age 50 years, we may be “missing the window.” The 6.9% absolute and 10.1% relative survival increase in the target transition period suggest the authors’ hypothesis is correct.

As in any real-world database survey, the analysis is limited by a lack of specific outcomes data, the inability to determine when the cancers developed, and how long they germinated. Because of those limitations and others, more detailed studies are needed to determine the ideal age at which to begin CRC screening.

Modeling studies incorporating the steep incidence inflection point at 49-50 years can be conducted to estimate the incidence rate increase at, for example, 45 years; the cost-benefit ratio; quality-adjusted life-years gained; and other important endpoints. However, this review of over 170,000 cases of CRC, with a data-completeness rate of over 98%, over the 15-year time frame when CRC screening became common, supports a fresh look at whether it is within our power to improve outcomes for EOCRC patients by using existing technology but applying it earlier.

Dr. Lyss has been a community-based medical oncologist and clinical researcher for more than 35 years, practicing in St. Louis. His clinical and research interests are in the prevention, diagnosis, and treatment of breast and lung cancers and in expanding access to clinical trials to medically underserved populations.

In this edition of “How I Will Treat My Next Patient,” I review “guidelines for today” and speculate about “guidelines for tomorrow,” highlighting recommendations from the American Society of Clinical Oncology about hereditary cancer testing in epithelial ovarian cancer (OC) and data that support a reexamination of the age at which screening for colorectal cancer (CRC) should begin.

ASCO guidelines on genetic testing in epithelial ovarian cancer

After reviewing 19 studies, including 6 meta-analyses; 11 randomized, controlled trials; and 2 observational studies, an ASCO panel recommended germline genetic testing for BRCA1, BRCA2, and other ovarian cancer susceptibility genes for all women with newly diagnosed epithelial OC, regardless of family history (J Clin Oncol. 2020 Jan 27. doi: 10.1200/JCO.19.02960).

For OC patients with a germline mutation, cascade testing of first- and second-degree relatives was strongly urged. For patients without a germline mutation, the guidelines recommended offering somatic tumor testing for BRCA1/2 pathogenic or likely pathogenic variants at disease recurrence or after initial therapy and for mismatch repair deficiency (MMRD) in patients with clear cell, endometrioid, or mucinous and potentially other histologic types of OC. The authors cautioned that the discussion of testing results should involve professionals with expertise in the surveillance and management of hereditary cancer syndromes.

The panel said the discovery of germline or somatic pathogenic or likely pathogenic BRCA1/2 variants should lead to considering treatment with Food and Drug Administration–approved poly (ADP-ribose) polymerase inhibitors, including niraparib, olaparib, and rucaparib. Identification of MMRD in a patient with recurrent OC should trigger consideration of treatment with pembrolizumab, consistent with its labeled indications, and surveillance for other malignancies.

The guidelines cautioned that, when patients have variants of uncertain significance on germline testing, “clinical features and family history should inform clinical decision making.” Similarly, the panel made no recommendation regarding testing for or making treatment decisions based on tests for homologous recombination deficiency.
 

How these results influence practice

Every oncologist recognizes that better understanding of cancer biology can guide personalized diagnostic, predictive, prognostic, and therapeutic strategies for patients and their family members.

It is estimated that approximately 25% of all OC is caused by a heritable genetic condition. Germline mutations in BRCA1 and BRCA2 are identified in 13%-15% of patients with OC, and somatic mutations are found in an additional 7%. Perhaps 6% of all ovarian/fallopian tube/peritoneal cancers are caused by mutations in genes other than BRCA1/2. For that reason, germline sequencing should be performed via multigene panels that assess BRCA1/2 and other relevant mutations.

MMDR has been found in 10%-12% of unselected epithelial OC, with increased representation in nonserous histologies. That frequency is high enough to justify testing for it routinely.

Unfortunately, only about 30% of women undergo genetic testing. Given the frequency of molecular abnormalities in OC, this is problematic in every conceivable domain of clinical care for patients and family members. ASCO’s comprehensive, educational guidelines provide a template for shared decision making and utilize resources that are available in almost all clinical settings. For those clinicians who have recommended genetic testing for all epithelial OC patients, these guidelines are practice reaffirming. For the rest of us, they are practice changing.
 

Colorectal cancer cases spike after start of routine screening

Instead of examining CRC incidence by the usual 5- or 10-year age ranges, a group of researchers looked at CRC incidence in 1-year intervals for adults aged 30-60 years in the SEER-18 registry from 2000 to 2015 (JAMA Network Open. 2020 Jan 31. doi: 10.1001/jamanetworkopen.2019.20407). The researchers focused their attention on the transition between age 49 and 50 years, which is when routine screening generally begins and case-finding based on symptoms and signs of CRC alone ideally ends.

The group’s hypothesis was that steep increases in CRC incidence between ages 49 and 50 would be consistent with a high, undetected preclinical case burden in patients aged younger than 50 years and that this “real-world” registry data could help estimate outcomes of screening at younger ages. The researchers found that CRC incidence increased by 46.1% in the transition period from age 49 to 50 years. A majority (93%) of these cases were invasive and, therefore, likely to be clinically relevant. The increase in cancer rates occurred across geographical regions, gender, and race, and likely reflected the impact of screening. The states with the steepest increases in CRC between ages 49 and 50 (Connecticut and Utah) were the states with the first and third highest CRC screening rates for individuals 50 years of age and older.

Stage stratification showed steep increases in incidence in the target age range for localized and regional CRC and for colon and rectal tumors. In the transition between age 49 and 50, the researchers found a significant increase in 5-year relative survival (6.9% absolute increase, 10% relative increase), suggesting that earlier screening had a survival impact, apart from the effects of treatment in cases diagnosed after symptoms occurred.

The authors concluded that their analysis of the transition from age 49 to 50 years provides registry-based data regarding CRC risk among individuals younger than 50, which can add to existing modeling studies to help inform guidelines about the age at which to initiate screening.
 

How these results influence practice

Early-onset CRC (EOCRC) incidence is increasing, with controversy regarding whether average-risk screening should begin before age 50 years. The justification for starting screening at age 50 is that there is a near doubling of incidence from patients aged 45-49 years (34 per 100,000) to those aged 50-54 years (60.2 per 100,000).

However, the increase in CRC incidence beyond age 50 may not be because rates are truly lower among younger individuals but rather because of uneven screening between the two populations. Doubling times for CRCs have been estimated to be perhaps as long as 1,000 days. Because many CRCs are asymptomatic, observed incidence rates of EOCRC in SEER registries do not reflect preclinical CRC case burdens in younger patients.

The current interrogation of SEER-18 data to identify preexisting CRC that was clinically silent in the 1-year interval between age 49 and 50 is highly supportive of a large undiagnosed number of EOCRC cases. In SEER-18, CRC rates increased 46.1% in this 1-year age transition, more than in earlier 1-year age transitions. With almost 93% of cases being invasive, these data suggest a high case burden of preclinical, undetected, clinically relevant EOCRC in younger patients that is not reflected in observed SEER incidence rates examining wider age group intervals.

The dual goals of screening for CRC are to prevent malignant neoplasms by the removal of precancerous polyps and improve cancer-specific survival. The data presented suggest that, by starting average-risk screening at age 50 years, we may be “missing the window.” The 6.9% absolute and 10.1% relative survival increase in the target transition period suggest the authors’ hypothesis is correct.

As in any real-world database survey, the analysis is limited by a lack of specific outcomes data, the inability to determine when the cancers developed, and how long they germinated. Because of those limitations and others, more detailed studies are needed to determine the ideal age at which to begin CRC screening.

Modeling studies incorporating the steep incidence inflection point at 49-50 years can be conducted to estimate the incidence rate increase at, for example, 45 years; the cost-benefit ratio; quality-adjusted life-years gained; and other important endpoints. However, this review of over 170,000 cases of CRC, with a data-completeness rate of over 98%, over the 15-year time frame when CRC screening became common, supports a fresh look at whether it is within our power to improve outcomes for EOCRC patients by using existing technology but applying it earlier.

Dr. Lyss has been a community-based medical oncologist and clinical researcher for more than 35 years, practicing in St. Louis. His clinical and research interests are in the prevention, diagnosis, and treatment of breast and lung cancers and in expanding access to clinical trials to medically underserved populations.

At a follow-up visit, a biopsy of the skin on the fingertips was performed, which showed lichenoid lymphocytic inflammatory infiltrate with associated hyperkeratosis, hypergranulosis, and acanthosis.

No fungal elements were seen. The findings were consistent with lichen planus.

Courtesy Dr. Catalina Matiz

Nail lichen planus (NLP) in children is not a common condition.¹ In a recent series from Chiheb et al., NLP was reported in 90 patients, of which 40% were children; a quarter of the patients reported having extracutaneous involvement as well.² In another childhood LP series,14 % of the children presented with nail disease.³ It can be a severe disease that, if not treated aggressively, may lead to destruction of the nail bed. This condition seems to be more prevalent in boys than girls and more prevalent in African American children.³ Unfortunately, in this patient’s case, the mother was hesitant to use systemic therapy and aggressive treatment was delayed.

Possible but not clear associations with autoimmune conditions such as vitiligo, autoimmune thyroiditis, myasthenia gravis, alopecia areata, thymoma, autoimmune polyendocrinopathy, atopic dermatitis, and lichen nitidus have been described in children with LP.

The clinical characteristics of NLP include nail plate thinning with longitudinal ridging and fissuring, with or without pterygium; trachyonychia; and erythema of the lunula when the nail matrix is involved. When the nail bed is affected, the patient can present with onycholysis with or without subungual hyperkeratosis and violaceous hue of the nail bed.⁴ NLP can have three different clinical presentations described by Tosti et al., which include typical NLP, 20‐nail dystrophy (trachyonychia), and idiopathic nail atrophy. Idiopathic nail atrophy is described solely in children as an acute and rapid progression that leads to destruction of the nail within months, which appears to be the clinical presentation in our patient.

The differential diagnosis of nail dystrophy in children includes infectious processes such as onychomycosis, especially when children present with onycholysis and subungual hyperkeratosis. Because of this, it is recommended to perform a nail culture or submit a sample of nail clippings for microscopic evaluation to confirm the diagnosis of onychomycosis prior to starting systemic therapy in children. Fingernail involvement without toenail involvement is an unusual presentation of onychomycosis.

Twenty-nail dystrophy – also known as trachyonychia – can be caused by several inflammatory skin conditions such as lichen planus, psoriasis, eczema, pemphigus vulgaris, and alopecia areata. Clinically, there is uniformly monomorphic thinning of the nail plate with longitudinal ridging without splitting or pterygium.¹ This is a benign condition and should not cause scarring. About 10% of the cases of 20-nail dystrophy are caused by lichen planus.

Nail psoriasis is characterized by nail pitting, oil spots on the nail plate, leukonychia, subungual hyperkeratosis, and onycholysis, as well as nail crumbling, which were not seen in our patient. Although her initial presentation was of 20-nail dystrophy, which also can be a presentation of nail psoriasis, its rapid evolution with associated nail atrophy and pterygium make it unlikely to be psoriasis in this particular patient.

Patients with pachyonychia congenita – which is a genetic disorder or keratinization caused by mutations on several genes encoding keratin such as K6a, K16, K17, K6b, and possibly K6c – present with nail thickening (pachyonychia) and discoloration of the nails, as well as pincer nails. These patients also present with oral leukokeratosis and focal palmoplantar keratoderma.

The main treatment of lichen planus is potent topical corticosteroids.

For nail disease, topical treatment may not be effective and systemic treatment may be necessary. Systemic corticosteroids have been used in several pediatric series varying from a short course given at a dose of 1- 2 mg/kg per day for 2 weeks to a longer 3-month course followed by tapering.³ There are several protocols of intramuscular triamcinolone at a dose of 0.5 mg/kg in children in once a month injections for about 3 months that have been reported successful with minimal side effects.¹ Other medications reported useful in patients with NLP include dapsone and acitretin. Other treatment options include narrow-band UVB and PUVA.³

Dr. Matiz is a pediatric dermatologist at Southern California Permanente Medical Group, San Diego. Email her at pdnews@mdedge.com.

References

1. Arch Dermatol. 2001 Aug;137(8):1027-32.

2. Ann Dermatol Venereol. 2015 Jan;142(1):21-5.

3. Pediatr Dermatol. 2014 Jan-Feb;31(1):59-67.

4. Dermatological diseases, in “Nails: Diagnosis, Therapy, and Surgery,” 3rd ed. (Oxford: Elsevier Saunders, 2005, p. 105).

At a follow-up visit, a biopsy of the skin on the fingertips was performed, which showed lichenoid lymphocytic inflammatory infiltrate with associated hyperkeratosis, hypergranulosis, and acanthosis.

No fungal elements were seen. The findings were consistent with lichen planus.

Courtesy Dr. Catalina Matiz

Nail lichen planus (NLP) in children is not a common condition.¹ In a recent series from Chiheb et al., NLP was reported in 90 patients, of which 40% were children; a quarter of the patients reported having extracutaneous involvement as well.² In another childhood LP series,14 % of the children presented with nail disease.³ It can be a severe disease that, if not treated aggressively, may lead to destruction of the nail bed. This condition seems to be more prevalent in boys than girls and more prevalent in African American children.³ Unfortunately, in this patient’s case, the mother was hesitant to use systemic therapy and aggressive treatment was delayed.

Possible but not clear associations with autoimmune conditions such as vitiligo, autoimmune thyroiditis, myasthenia gravis, alopecia areata, thymoma, autoimmune polyendocrinopathy, atopic dermatitis, and lichen nitidus have been described in children with LP.

The clinical characteristics of NLP include nail plate thinning with longitudinal ridging and fissuring, with or without pterygium; trachyonychia; and erythema of the lunula when the nail matrix is involved. When the nail bed is affected, the patient can present with onycholysis with or without subungual hyperkeratosis and violaceous hue of the nail bed.⁴ NLP can have three different clinical presentations described by Tosti et al., which include typical NLP, 20‐nail dystrophy (trachyonychia), and idiopathic nail atrophy. Idiopathic nail atrophy is described solely in children as an acute and rapid progression that leads to destruction of the nail within months, which appears to be the clinical presentation in our patient.

The differential diagnosis of nail dystrophy in children includes infectious processes such as onychomycosis, especially when children present with onycholysis and subungual hyperkeratosis. Because of this, it is recommended to perform a nail culture or submit a sample of nail clippings for microscopic evaluation to confirm the diagnosis of onychomycosis prior to starting systemic therapy in children. Fingernail involvement without toenail involvement is an unusual presentation of onychomycosis.

Twenty-nail dystrophy – also known as trachyonychia – can be caused by several inflammatory skin conditions such as lichen planus, psoriasis, eczema, pemphigus vulgaris, and alopecia areata. Clinically, there is uniformly monomorphic thinning of the nail plate with longitudinal ridging without splitting or pterygium.¹ This is a benign condition and should not cause scarring. About 10% of the cases of 20-nail dystrophy are caused by lichen planus.

Nail psoriasis is characterized by nail pitting, oil spots on the nail plate, leukonychia, subungual hyperkeratosis, and onycholysis, as well as nail crumbling, which were not seen in our patient. Although her initial presentation was of 20-nail dystrophy, which also can be a presentation of nail psoriasis, its rapid evolution with associated nail atrophy and pterygium make it unlikely to be psoriasis in this particular patient.

Patients with pachyonychia congenita – which is a genetic disorder or keratinization caused by mutations on several genes encoding keratin such as K6a, K16, K17, K6b, and possibly K6c – present with nail thickening (pachyonychia) and discoloration of the nails, as well as pincer nails. These patients also present with oral leukokeratosis and focal palmoplantar keratoderma.

The main treatment of lichen planus is potent topical corticosteroids.

For nail disease, topical treatment may not be effective and systemic treatment may be necessary. Systemic corticosteroids have been used in several pediatric series varying from a short course given at a dose of 1- 2 mg/kg per day for 2 weeks to a longer 3-month course followed by tapering.³ There are several protocols of intramuscular triamcinolone at a dose of 0.5 mg/kg in children in once a month injections for about 3 months that have been reported successful with minimal side effects.¹ Other medications reported useful in patients with NLP include dapsone and acitretin. Other treatment options include narrow-band UVB and PUVA.³

Dr. Matiz is a pediatric dermatologist at Southern California Permanente Medical Group, San Diego. Email her at pdnews@mdedge.com.

References

1. Arch Dermatol. 2001 Aug;137(8):1027-32.

2. Ann Dermatol Venereol. 2015 Jan;142(1):21-5.

3. Pediatr Dermatol. 2014 Jan-Feb;31(1):59-67.

4. Dermatological diseases, in “Nails: Diagnosis, Therapy, and Surgery,” 3rd ed. (Oxford: Elsevier Saunders, 2005, p. 105).

At a follow-up visit, a biopsy of the skin on the fingertips was performed, which showed lichenoid lymphocytic inflammatory infiltrate with associated hyperkeratosis, hypergranulosis, and acanthosis.

No fungal elements were seen. The findings were consistent with lichen planus.

Courtesy Dr. Catalina Matiz

Nail lichen planus (NLP) in children is not a common condition.¹ In a recent series from Chiheb et al., NLP was reported in 90 patients, of which 40% were children; a quarter of the patients reported having extracutaneous involvement as well.² In another childhood LP series,14 % of the children presented with nail disease.³ It can be a severe disease that, if not treated aggressively, may lead to destruction of the nail bed. This condition seems to be more prevalent in boys than girls and more prevalent in African American children.³ Unfortunately, in this patient’s case, the mother was hesitant to use systemic therapy and aggressive treatment was delayed.

Possible but not clear associations with autoimmune conditions such as vitiligo, autoimmune thyroiditis, myasthenia gravis, alopecia areata, thymoma, autoimmune polyendocrinopathy, atopic dermatitis, and lichen nitidus have been described in children with LP.

The clinical characteristics of NLP include nail plate thinning with longitudinal ridging and fissuring, with or without pterygium; trachyonychia; and erythema of the lunula when the nail matrix is involved. When the nail bed is affected, the patient can present with onycholysis with or without subungual hyperkeratosis and violaceous hue of the nail bed.⁴ NLP can have three different clinical presentations described by Tosti et al., which include typical NLP, 20‐nail dystrophy (trachyonychia), and idiopathic nail atrophy. Idiopathic nail atrophy is described solely in children as an acute and rapid progression that leads to destruction of the nail within months, which appears to be the clinical presentation in our patient.

The differential diagnosis of nail dystrophy in children includes infectious processes such as onychomycosis, especially when children present with onycholysis and subungual hyperkeratosis. Because of this, it is recommended to perform a nail culture or submit a sample of nail clippings for microscopic evaluation to confirm the diagnosis of onychomycosis prior to starting systemic therapy in children. Fingernail involvement without toenail involvement is an unusual presentation of onychomycosis.

Twenty-nail dystrophy – also known as trachyonychia – can be caused by several inflammatory skin conditions such as lichen planus, psoriasis, eczema, pemphigus vulgaris, and alopecia areata. Clinically, there is uniformly monomorphic thinning of the nail plate with longitudinal ridging without splitting or pterygium.¹ This is a benign condition and should not cause scarring. About 10% of the cases of 20-nail dystrophy are caused by lichen planus.

Nail psoriasis is characterized by nail pitting, oil spots on the nail plate, leukonychia, subungual hyperkeratosis, and onycholysis, as well as nail crumbling, which were not seen in our patient. Although her initial presentation was of 20-nail dystrophy, which also can be a presentation of nail psoriasis, its rapid evolution with associated nail atrophy and pterygium make it unlikely to be psoriasis in this particular patient.

Patients with pachyonychia congenita – which is a genetic disorder or keratinization caused by mutations on several genes encoding keratin such as K6a, K16, K17, K6b, and possibly K6c – present with nail thickening (pachyonychia) and discoloration of the nails, as well as pincer nails. These patients also present with oral leukokeratosis and focal palmoplantar keratoderma.

The main treatment of lichen planus is potent topical corticosteroids.

For nail disease, topical treatment may not be effective and systemic treatment may be necessary. Systemic corticosteroids have been used in several pediatric series varying from a short course given at a dose of 1- 2 mg/kg per day for 2 weeks to a longer 3-month course followed by tapering.³ There are several protocols of intramuscular triamcinolone at a dose of 0.5 mg/kg in children in once a month injections for about 3 months that have been reported successful with minimal side effects.¹ Other medications reported useful in patients with NLP include dapsone and acitretin. Other treatment options include narrow-band UVB and PUVA.³

Dr. Matiz is a pediatric dermatologist at Southern California Permanente Medical Group, San Diego. Email her at pdnews@mdedge.com.

References

1. Arch Dermatol. 2001 Aug;137(8):1027-32.

2. Ann Dermatol Venereol. 2015 Jan;142(1):21-5.

3. Pediatr Dermatol. 2014 Jan-Feb;31(1):59-67.

4. Dermatological diseases, in “Nails: Diagnosis, Therapy, and Surgery,” 3rd ed. (Oxford: Elsevier Saunders, 2005, p. 105).

In recent years, social media platforms like Twitter, Facebook, and Instagram have become popular gathering spots for clinicians to connect, engage, and share medical content. Medical journals, which often act as purveyors of this content, have recognized social media’s growing power and influence and have begun looking for ways to better engage their audiences.

In 2016, the Annals of Surgery was looking to better disseminate the work being published in its pages and looked to Twitter as one way of accomplishing this. At the time, most journals were only posting the title or a brief description of the published manuscript and hoping their Twitter followers would click on the article link. As journal editors were finding, if the audience was not immediately familiar with the topic or able to quickly capture the nuances of the study, there was a good chance the reader would continue to scroll past the post and never view the article.

Recognizing that social media heavily relies on visual material to garner attention, Annals turned to Andrew Ibrahim, MD, an architect turned surgeon, to help them rethink their social media strategy. Using the design training he had previously received in his career as an architect, Dr. Ibrahim created a simple visual tool that could be used to capture the often complicated and nuanced aspects of a research study. He called his creation a “visual abstract.”

But what is a visual abstract? Simply, they are visual representations of the key findings of a published manuscript; or put another way, a “movie trailer” to the full manuscript. While they can take many different forms and designs, they often consist of three key components: (1) a simple, easy to understand title, (2) a primary focus on outcomes, and (3) the use of visual cues or images to help the reader absorb and remember the take home message. This simplified delivery of complex information allows the producer to efficiently share complex findings in a format that allows for rapid visualization and interpretation.

Andrew M. Ibrahim

Since its inception, several studies have examined the influence visual abstracts have on disseminating research. One study conducted by Dr. Ibrahim and his colleagues found that articles tweeted with a visual abstract had an almost eightfold increase in the number of Twitter impressions (a measure of social media dissemination) and a threefold increase in article visits, compared with those manuscripts tweeted with the article title only.¹ These results reflect what behavioral scientists have long understood: Humans process visual data better than any other type of data.² For instance, according to research compiled by 3M, the company behind popular sticky notes, visual data is processed 60,000 times faster than text and has been shown to improve learning by 400%.³ Likewise, digital marketers have found that pages with videos and images draw on average 94% more views than their text-only counterparts.⁴

This knowledge, along with the substantial difference in engagement and dissemination characteristics from Dr. Ibrahim’s study, was far beyond what anyone might have expected and started a trend in medicine that continues to grow today. Medical journals across all practices and disciplines, including several leading journals, such as the New England Journal of Medicine, the Journal of the American Medical Association, and the Journal of Hospital Medicine (JHM), are utilizing this new tool to help disseminate their work in social media.

Visual abstracts have expanded beyond the social media sphere and are now frequently used in Grand Rounds presentations and as teaching tools among medical educators. JHM was one of the first journals to adopt the use of visual abstracts and has since published more than 150 in total. Given the growing popularity and expanded use of visual abstracts, JHM recently began archiving them on the journal’s website to allow clinicians to use the material in their own creative ways.

Visual abstracts are just one piece of the growing enterprise in social media for JHM. Recognizing the growing utilization of social media among physicians, JHM has taken a leading role in the use of online journal clubs. Since 2014, JHM has run a monthly Twitter-based journal club that discusses recently published articles and hospital medicine–based topics, called #JHMChat.⁵ This forum has allowed hospitalists from across the country, and around the world, to connect, network, and engage around topics important to the field of hospital medicine. The journal frequently reaches beyond hospital medicine borders and partners with other specialties and interest groups to gain perspective and insights into shared topic areas. To date, #JHMChat has one of the most robust online communities and continues to attract new followers each month.

As social media use continues to expand among clinicians, engagement tools like visual abstracts and Twitter chats will certainly continue to grow. Given that more clinicians are scrolling through websites than flipping through journal pages, medical journals like JHM will continually look for novel ways to engage their audiences and create communities among their followers. While a former architect who now practices as a surgeon led the way with visual abstracts, it remains to be seen who will create the next tool used to capture our attention on the ever-evolving sphere of social media.
 

Dr. Wray is a hospitalist at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. He also serves as a digital media and associate editor for the Journal of Hospital Medicine.

References

1. Ibrahim AM et al. Visual abstracts to disseminate research on social media: A prospective, case-control crossover study. Ann Surg. 2017;266(6):e46.

2. Tufte ER. The Visual Display of Quantitative Information. Second edition. Cheshire, Conn. Graphics Press, 2001. https://search.library.wisc.edu/catalog/999913808702121.

3. Polishing Your Presentation. http://web.archive.org/web/20001014041642/http://www.3m.com:80/meetingnetwork/files/meetingguide_pres.pdf. Accessed May 28, 2017.

4. 7 reasons you need visual content in your marketing strategy. https://medium.com/@nikos_iliopoulos/7-reasons-you-need-visual-content-in-your-marketing-strategy-bc77ca5521ac. Accessed May 28, 2017.

5. Wray CM et al. The adoption of an online journal club to improve research dissemination and social media engagement among hospitalists. J Hosp Med. 2018. doi: 10.12788/jhm.2987.

In recent years, social media platforms like Twitter, Facebook, and Instagram have become popular gathering spots for clinicians to connect, engage, and share medical content. Medical journals, which often act as purveyors of this content, have recognized social media’s growing power and influence and have begun looking for ways to better engage their audiences.

In 2016, the Annals of Surgery was looking to better disseminate the work being published in its pages and looked to Twitter as one way of accomplishing this. At the time, most journals were only posting the title or a brief description of the published manuscript and hoping their Twitter followers would click on the article link. As journal editors were finding, if the audience was not immediately familiar with the topic or able to quickly capture the nuances of the study, there was a good chance the reader would continue to scroll past the post and never view the article.

Recognizing that social media heavily relies on visual material to garner attention, Annals turned to Andrew Ibrahim, MD, an architect turned surgeon, to help them rethink their social media strategy. Using the design training he had previously received in his career as an architect, Dr. Ibrahim created a simple visual tool that could be used to capture the often complicated and nuanced aspects of a research study. He called his creation a “visual abstract.”

But what is a visual abstract? Simply, they are visual representations of the key findings of a published manuscript; or put another way, a “movie trailer” to the full manuscript. While they can take many different forms and designs, they often consist of three key components: (1) a simple, easy to understand title, (2) a primary focus on outcomes, and (3) the use of visual cues or images to help the reader absorb and remember the take home message. This simplified delivery of complex information allows the producer to efficiently share complex findings in a format that allows for rapid visualization and interpretation.

Andrew M. Ibrahim

Since its inception, several studies have examined the influence visual abstracts have on disseminating research. One study conducted by Dr. Ibrahim and his colleagues found that articles tweeted with a visual abstract had an almost eightfold increase in the number of Twitter impressions (a measure of social media dissemination) and a threefold increase in article visits, compared with those manuscripts tweeted with the article title only.¹ These results reflect what behavioral scientists have long understood: Humans process visual data better than any other type of data.² For instance, according to research compiled by 3M, the company behind popular sticky notes, visual data is processed 60,000 times faster than text and has been shown to improve learning by 400%.³ Likewise, digital marketers have found that pages with videos and images draw on average 94% more views than their text-only counterparts.⁴

This knowledge, along with the substantial difference in engagement and dissemination characteristics from Dr. Ibrahim’s study, was far beyond what anyone might have expected and started a trend in medicine that continues to grow today. Medical journals across all practices and disciplines, including several leading journals, such as the New England Journal of Medicine, the Journal of the American Medical Association, and the Journal of Hospital Medicine (JHM), are utilizing this new tool to help disseminate their work in social media.

Visual abstracts have expanded beyond the social media sphere and are now frequently used in Grand Rounds presentations and as teaching tools among medical educators. JHM was one of the first journals to adopt the use of visual abstracts and has since published more than 150 in total. Given the growing popularity and expanded use of visual abstracts, JHM recently began archiving them on the journal’s website to allow clinicians to use the material in their own creative ways.

Visual abstracts are just one piece of the growing enterprise in social media for JHM. Recognizing the growing utilization of social media among physicians, JHM has taken a leading role in the use of online journal clubs. Since 2014, JHM has run a monthly Twitter-based journal club that discusses recently published articles and hospital medicine–based topics, called #JHMChat.⁵ This forum has allowed hospitalists from across the country, and around the world, to connect, network, and engage around topics important to the field of hospital medicine. The journal frequently reaches beyond hospital medicine borders and partners with other specialties and interest groups to gain perspective and insights into shared topic areas. To date, #JHMChat has one of the most robust online communities and continues to attract new followers each month.

As social media use continues to expand among clinicians, engagement tools like visual abstracts and Twitter chats will certainly continue to grow. Given that more clinicians are scrolling through websites than flipping through journal pages, medical journals like JHM will continually look for novel ways to engage their audiences and create communities among their followers. While a former architect who now practices as a surgeon led the way with visual abstracts, it remains to be seen who will create the next tool used to capture our attention on the ever-evolving sphere of social media.
 

Dr. Wray is a hospitalist at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. He also serves as a digital media and associate editor for the Journal of Hospital Medicine.

References

1. Ibrahim AM et al. Visual abstracts to disseminate research on social media: A prospective, case-control crossover study. Ann Surg. 2017;266(6):e46.

2. Tufte ER. The Visual Display of Quantitative Information. Second edition. Cheshire, Conn. Graphics Press, 2001. https://search.library.wisc.edu/catalog/999913808702121.

3. Polishing Your Presentation. http://web.archive.org/web/20001014041642/http://www.3m.com:80/meetingnetwork/files/meetingguide_pres.pdf. Accessed May 28, 2017.

4. 7 reasons you need visual content in your marketing strategy. https://medium.com/@nikos_iliopoulos/7-reasons-you-need-visual-content-in-your-marketing-strategy-bc77ca5521ac. Accessed May 28, 2017.

5. Wray CM et al. The adoption of an online journal club to improve research dissemination and social media engagement among hospitalists. J Hosp Med. 2018. doi: 10.12788/jhm.2987.

In recent years, social media platforms like Twitter, Facebook, and Instagram have become popular gathering spots for clinicians to connect, engage, and share medical content. Medical journals, which often act as purveyors of this content, have recognized social media’s growing power and influence and have begun looking for ways to better engage their audiences.

In 2016, the Annals of Surgery was looking to better disseminate the work being published in its pages and looked to Twitter as one way of accomplishing this. At the time, most journals were only posting the title or a brief description of the published manuscript and hoping their Twitter followers would click on the article link. As journal editors were finding, if the audience was not immediately familiar with the topic or able to quickly capture the nuances of the study, there was a good chance the reader would continue to scroll past the post and never view the article.

Recognizing that social media heavily relies on visual material to garner attention, Annals turned to Andrew Ibrahim, MD, an architect turned surgeon, to help them rethink their social media strategy. Using the design training he had previously received in his career as an architect, Dr. Ibrahim created a simple visual tool that could be used to capture the often complicated and nuanced aspects of a research study. He called his creation a “visual abstract.”

But what is a visual abstract? Simply, they are visual representations of the key findings of a published manuscript; or put another way, a “movie trailer” to the full manuscript. While they can take many different forms and designs, they often consist of three key components: (1) a simple, easy to understand title, (2) a primary focus on outcomes, and (3) the use of visual cues or images to help the reader absorb and remember the take home message. This simplified delivery of complex information allows the producer to efficiently share complex findings in a format that allows for rapid visualization and interpretation.

Andrew M. Ibrahim

Since its inception, several studies have examined the influence visual abstracts have on disseminating research. One study conducted by Dr. Ibrahim and his colleagues found that articles tweeted with a visual abstract had an almost eightfold increase in the number of Twitter impressions (a measure of social media dissemination) and a threefold increase in article visits, compared with those manuscripts tweeted with the article title only.¹ These results reflect what behavioral scientists have long understood: Humans process visual data better than any other type of data.² For instance, according to research compiled by 3M, the company behind popular sticky notes, visual data is processed 60,000 times faster than text and has been shown to improve learning by 400%.³ Likewise, digital marketers have found that pages with videos and images draw on average 94% more views than their text-only counterparts.⁴

This knowledge, along with the substantial difference in engagement and dissemination characteristics from Dr. Ibrahim’s study, was far beyond what anyone might have expected and started a trend in medicine that continues to grow today. Medical journals across all practices and disciplines, including several leading journals, such as the New England Journal of Medicine, the Journal of the American Medical Association, and the Journal of Hospital Medicine (JHM), are utilizing this new tool to help disseminate their work in social media.

Visual abstracts have expanded beyond the social media sphere and are now frequently used in Grand Rounds presentations and as teaching tools among medical educators. JHM was one of the first journals to adopt the use of visual abstracts and has since published more than 150 in total. Given the growing popularity and expanded use of visual abstracts, JHM recently began archiving them on the journal’s website to allow clinicians to use the material in their own creative ways.

Visual abstracts are just one piece of the growing enterprise in social media for JHM. Recognizing the growing utilization of social media among physicians, JHM has taken a leading role in the use of online journal clubs. Since 2014, JHM has run a monthly Twitter-based journal club that discusses recently published articles and hospital medicine–based topics, called #JHMChat.⁵ This forum has allowed hospitalists from across the country, and around the world, to connect, network, and engage around topics important to the field of hospital medicine. The journal frequently reaches beyond hospital medicine borders and partners with other specialties and interest groups to gain perspective and insights into shared topic areas. To date, #JHMChat has one of the most robust online communities and continues to attract new followers each month.

As social media use continues to expand among clinicians, engagement tools like visual abstracts and Twitter chats will certainly continue to grow. Given that more clinicians are scrolling through websites than flipping through journal pages, medical journals like JHM will continually look for novel ways to engage their audiences and create communities among their followers. While a former architect who now practices as a surgeon led the way with visual abstracts, it remains to be seen who will create the next tool used to capture our attention on the ever-evolving sphere of social media.
 

Dr. Wray is a hospitalist at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. He also serves as a digital media and associate editor for the Journal of Hospital Medicine.

References

1. Ibrahim AM et al. Visual abstracts to disseminate research on social media: A prospective, case-control crossover study. Ann Surg. 2017;266(6):e46.

2. Tufte ER. The Visual Display of Quantitative Information. Second edition. Cheshire, Conn. Graphics Press, 2001. https://search.library.wisc.edu/catalog/999913808702121.

3. Polishing Your Presentation. http://web.archive.org/web/20001014041642/http://www.3m.com:80/meetingnetwork/files/meetingguide_pres.pdf. Accessed May 28, 2017.

4. 7 reasons you need visual content in your marketing strategy. https://medium.com/@nikos_iliopoulos/7-reasons-you-need-visual-content-in-your-marketing-strategy-bc77ca5521ac. Accessed May 28, 2017.

5. Wray CM et al. The adoption of an online journal club to improve research dissemination and social media engagement among hospitalists. J Hosp Med. 2018. doi: 10.12788/jhm.2987.

“Not my son!” your patient’s parent rants. “If he lies to me, he will regret it for a long time.” While your first reaction may be to agree that a child lying to a parent crosses a kind of moral line in the sand, lying is a far more nuanced part of parenting worth a deeper understanding.

fizkes/Getty Images

In order to lie, a child has to develop cognitive and social understanding. Typically developing children look to see what is interesting to others, called “joint attention,” at around 12-18 months. Failure to do this is one of the early signs of autism reflecting atypical social understanding. At around 3.5 years, children may attempt to deceive if they have broken a rule. The study demonstrating this may sound a lot like home: Children are left alone with a tempting toy but told not to touch it. Although they do touch it while the adult is out of sight, they say rather sweetly (and eventually convincingly) that they did not, even though the toy was clearly moved! While boys generally have more behavior problems, girls and children with better verbal skills achieve deceit at an earlier age, some as young as 2 years. At this stage, children become aware that the adult can’t know exactly what they know. If the parent shows high emotion to what they consider a lie, this can be a topic for testing! Children with ADHD often lack the inhibition needed for early mastery of deception, and children with autism later or not at all. They don’t see the social point to lying nor can they fake a facial expression. They have a case of intractable honesty!

The inability to refrain from telling the truth can result in social rejection, for example when a child rats on a peer for a trivial misdeed in class. Even though he is speaking the truth and “following the (teacher’s) rules,” he did not see that the cost of breaking the (peer) social rules was more important. By age 6 years, children typically figure out that what another person thinks may not be true – their belief may be incorrect or a “false belief.” This understanding is called Theory of Mind, missing or delayed in autism. Only 40% of high-functioning children with autism passed false belief testing at ages 6- to 13-years-old, compared with 95% of typical age-matched peers (Physiol Behav. 2010 Jun 1;100[3]:268-76). The percentage of children on the spectrum understanding false beliefs more closely matched that of preschoolers (39%). At a later age and given extra time to think, some children with autism can do better at this kind of perspective taking, but many continue having difficulty understanding thoughts of others, especially social expectations or motivations (such as flirting, status seeking, and making an excuse) even as adults. This can impair social relationships even when desire to fit in and IQ are otherwise high.

On the other hand, ADHD is a common condition in which “lying” comes from saying the first thing that comes to mind even if the child knows otherwise. A wise parent of one of my patients with ADHD told me about her “30 second rule” where she would give her child that extra time and walk away briefly to “be sure that is what you wanted to say,” with praise rather than give a consequence for changing the story to the truth. This is an important concept we pediatricians need to know: Punishing lying in children tends to result in more, not less, lying and more sneakiness. Instead, parents need to be advised to recall the origins of the word discipline as being “to teach.”

When children lie there are four basic scenarios: They may not know the rules, they may know but have something they want more, they may be impulsive, or they may have developed an attitude of seeking to con the adults whom they feel are mean as a way to have some power in the relationship and get back at them. Clearly, we do not want to push children to this fourth resort by harsh reactions to lying. We have seen particular difficulty with harsh reactions to lying in parents from strong, rule-oriented careers such as police officers, military, and ministers. Asking “How would your parent have handled this?” often will reveal reasons for their tough but backfiring stance.

Lying can work to get what one wants and nearly all children try it. Parents can be reassured that lying is developmental progress and actually a social survival skill! As with other new milestones, children practice this “skill,” much to parents’ dismay. Parents generally can tell if children are lying; they see it on their faces, hear the story from siblings, or see evidence of what happened. Lying provides an important opportunity for the adult to stop, take some breaths, touch the child, and empathize: “It is hard to admit a mistake. I know you did not mean to do it. But you are young, and I know that you are good and honest inside, and will get stronger and braver at telling the truth as you get older. Will you promise to try harder?” In some cases a consequence may be appropriate, for example if something was broken. Usually, simply empathizing and focusing on the expectation for improvement will increase the child’s desire to please the parents rather than get back at them. Actual rewards for honesty improve truth telling by 1.5 times if the reward is big enough.

But it is important to recognize that we all make split second tactical decisions about our actions based on how safe we feel in the situation and our knowledge of social rules and costs. Children over time need to learn that it is safe to tell the truth among family members and that they will not be harshly dealt with. It is a subtle task, but important to learn that deception is a tool that can be important used judiciously when required socially (I have a curfew) or in dangerous situations (I did not see the thug), but can undermine relationships and should not be used with your allies (family and friends).

But parenting involves lying also, which can be a model for the child. Sarcasm is a peculiar form of problematic adult lying. The adults say the opposite or an exaggeration of what they really mean, usually with a smirk or other nonverbal cue to their intent. This is confusing, if not infuriating, to immature children or those who do not understand this twisted communication. It is best to avoid sarcasm with children, or at least be sure to explain it so the children gain understanding over time.

Parents need to “lie” to their children to some extent to reassure and allow for development of confidence. What adult hasn’t said “It’s going to be all right” about a looming storm, car crash, or illness, when actually there is uncertainty. Children count on adults to keep them safe emotionally and physically from things they can’t yet handle. To move forward developmentally, children need adults to be brave leaders, even when the adults don’t feel confident. Some parents think their children must know the “truth” in every instance. Those children are often painfully anxious and overwhelmed.

There is plenty of time for more facts later when the child has the thinking and emotional power to handle the truth.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

“Not my son!” your patient’s parent rants. “If he lies to me, he will regret it for a long time.” While your first reaction may be to agree that a child lying to a parent crosses a kind of moral line in the sand, lying is a far more nuanced part of parenting worth a deeper understanding.

fizkes/Getty Images

In order to lie, a child has to develop cognitive and social understanding. Typically developing children look to see what is interesting to others, called “joint attention,” at around 12-18 months. Failure to do this is one of the early signs of autism reflecting atypical social understanding. At around 3.5 years, children may attempt to deceive if they have broken a rule. The study demonstrating this may sound a lot like home: Children are left alone with a tempting toy but told not to touch it. Although they do touch it while the adult is out of sight, they say rather sweetly (and eventually convincingly) that they did not, even though the toy was clearly moved! While boys generally have more behavior problems, girls and children with better verbal skills achieve deceit at an earlier age, some as young as 2 years. At this stage, children become aware that the adult can’t know exactly what they know. If the parent shows high emotion to what they consider a lie, this can be a topic for testing! Children with ADHD often lack the inhibition needed for early mastery of deception, and children with autism later or not at all. They don’t see the social point to lying nor can they fake a facial expression. They have a case of intractable honesty!

The inability to refrain from telling the truth can result in social rejection, for example when a child rats on a peer for a trivial misdeed in class. Even though he is speaking the truth and “following the (teacher’s) rules,” he did not see that the cost of breaking the (peer) social rules was more important. By age 6 years, children typically figure out that what another person thinks may not be true – their belief may be incorrect or a “false belief.” This understanding is called Theory of Mind, missing or delayed in autism. Only 40% of high-functioning children with autism passed false belief testing at ages 6- to 13-years-old, compared with 95% of typical age-matched peers (Physiol Behav. 2010 Jun 1;100[3]:268-76). The percentage of children on the spectrum understanding false beliefs more closely matched that of preschoolers (39%). At a later age and given extra time to think, some children with autism can do better at this kind of perspective taking, but many continue having difficulty understanding thoughts of others, especially social expectations or motivations (such as flirting, status seeking, and making an excuse) even as adults. This can impair social relationships even when desire to fit in and IQ are otherwise high.

On the other hand, ADHD is a common condition in which “lying” comes from saying the first thing that comes to mind even if the child knows otherwise. A wise parent of one of my patients with ADHD told me about her “30 second rule” where she would give her child that extra time and walk away briefly to “be sure that is what you wanted to say,” with praise rather than give a consequence for changing the story to the truth. This is an important concept we pediatricians need to know: Punishing lying in children tends to result in more, not less, lying and more sneakiness. Instead, parents need to be advised to recall the origins of the word discipline as being “to teach.”

When children lie there are four basic scenarios: They may not know the rules, they may know but have something they want more, they may be impulsive, or they may have developed an attitude of seeking to con the adults whom they feel are mean as a way to have some power in the relationship and get back at them. Clearly, we do not want to push children to this fourth resort by harsh reactions to lying. We have seen particular difficulty with harsh reactions to lying in parents from strong, rule-oriented careers such as police officers, military, and ministers. Asking “How would your parent have handled this?” often will reveal reasons for their tough but backfiring stance.

Lying can work to get what one wants and nearly all children try it. Parents can be reassured that lying is developmental progress and actually a social survival skill! As with other new milestones, children practice this “skill,” much to parents’ dismay. Parents generally can tell if children are lying; they see it on their faces, hear the story from siblings, or see evidence of what happened. Lying provides an important opportunity for the adult to stop, take some breaths, touch the child, and empathize: “It is hard to admit a mistake. I know you did not mean to do it. But you are young, and I know that you are good and honest inside, and will get stronger and braver at telling the truth as you get older. Will you promise to try harder?” In some cases a consequence may be appropriate, for example if something was broken. Usually, simply empathizing and focusing on the expectation for improvement will increase the child’s desire to please the parents rather than get back at them. Actual rewards for honesty improve truth telling by 1.5 times if the reward is big enough.

But it is important to recognize that we all make split second tactical decisions about our actions based on how safe we feel in the situation and our knowledge of social rules and costs. Children over time need to learn that it is safe to tell the truth among family members and that they will not be harshly dealt with. It is a subtle task, but important to learn that deception is a tool that can be important used judiciously when required socially (I have a curfew) or in dangerous situations (I did not see the thug), but can undermine relationships and should not be used with your allies (family and friends).

But parenting involves lying also, which can be a model for the child. Sarcasm is a peculiar form of problematic adult lying. The adults say the opposite or an exaggeration of what they really mean, usually with a smirk or other nonverbal cue to their intent. This is confusing, if not infuriating, to immature children or those who do not understand this twisted communication. It is best to avoid sarcasm with children, or at least be sure to explain it so the children gain understanding over time.

Parents need to “lie” to their children to some extent to reassure and allow for development of confidence. What adult hasn’t said “It’s going to be all right” about a looming storm, car crash, or illness, when actually there is uncertainty. Children count on adults to keep them safe emotionally and physically from things they can’t yet handle. To move forward developmentally, children need adults to be brave leaders, even when the adults don’t feel confident. Some parents think their children must know the “truth” in every instance. Those children are often painfully anxious and overwhelmed.

There is plenty of time for more facts later when the child has the thinking and emotional power to handle the truth.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

“Not my son!” your patient’s parent rants. “If he lies to me, he will regret it for a long time.” While your first reaction may be to agree that a child lying to a parent crosses a kind of moral line in the sand, lying is a far more nuanced part of parenting worth a deeper understanding.

fizkes/Getty Images

In order to lie, a child has to develop cognitive and social understanding. Typically developing children look to see what is interesting to others, called “joint attention,” at around 12-18 months. Failure to do this is one of the early signs of autism reflecting atypical social understanding. At around 3.5 years, children may attempt to deceive if they have broken a rule. The study demonstrating this may sound a lot like home: Children are left alone with a tempting toy but told not to touch it. Although they do touch it while the adult is out of sight, they say rather sweetly (and eventually convincingly) that they did not, even though the toy was clearly moved! While boys generally have more behavior problems, girls and children with better verbal skills achieve deceit at an earlier age, some as young as 2 years. At this stage, children become aware that the adult can’t know exactly what they know. If the parent shows high emotion to what they consider a lie, this can be a topic for testing! Children with ADHD often lack the inhibition needed for early mastery of deception, and children with autism later or not at all. They don’t see the social point to lying nor can they fake a facial expression. They have a case of intractable honesty!

The inability to refrain from telling the truth can result in social rejection, for example when a child rats on a peer for a trivial misdeed in class. Even though he is speaking the truth and “following the (teacher’s) rules,” he did not see that the cost of breaking the (peer) social rules was more important. By age 6 years, children typically figure out that what another person thinks may not be true – their belief may be incorrect or a “false belief.” This understanding is called Theory of Mind, missing or delayed in autism. Only 40% of high-functioning children with autism passed false belief testing at ages 6- to 13-years-old, compared with 95% of typical age-matched peers (Physiol Behav. 2010 Jun 1;100[3]:268-76). The percentage of children on the spectrum understanding false beliefs more closely matched that of preschoolers (39%). At a later age and given extra time to think, some children with autism can do better at this kind of perspective taking, but many continue having difficulty understanding thoughts of others, especially social expectations or motivations (such as flirting, status seeking, and making an excuse) even as adults. This can impair social relationships even when desire to fit in and IQ are otherwise high.

On the other hand, ADHD is a common condition in which “lying” comes from saying the first thing that comes to mind even if the child knows otherwise. A wise parent of one of my patients with ADHD told me about her “30 second rule” where she would give her child that extra time and walk away briefly to “be sure that is what you wanted to say,” with praise rather than give a consequence for changing the story to the truth. This is an important concept we pediatricians need to know: Punishing lying in children tends to result in more, not less, lying and more sneakiness. Instead, parents need to be advised to recall the origins of the word discipline as being “to teach.”

When children lie there are four basic scenarios: They may not know the rules, they may know but have something they want more, they may be impulsive, or they may have developed an attitude of seeking to con the adults whom they feel are mean as a way to have some power in the relationship and get back at them. Clearly, we do not want to push children to this fourth resort by harsh reactions to lying. We have seen particular difficulty with harsh reactions to lying in parents from strong, rule-oriented careers such as police officers, military, and ministers. Asking “How would your parent have handled this?” often will reveal reasons for their tough but backfiring stance.

Lying can work to get what one wants and nearly all children try it. Parents can be reassured that lying is developmental progress and actually a social survival skill! As with other new milestones, children practice this “skill,” much to parents’ dismay. Parents generally can tell if children are lying; they see it on their faces, hear the story from siblings, or see evidence of what happened. Lying provides an important opportunity for the adult to stop, take some breaths, touch the child, and empathize: “It is hard to admit a mistake. I know you did not mean to do it. But you are young, and I know that you are good and honest inside, and will get stronger and braver at telling the truth as you get older. Will you promise to try harder?” In some cases a consequence may be appropriate, for example if something was broken. Usually, simply empathizing and focusing on the expectation for improvement will increase the child’s desire to please the parents rather than get back at them. Actual rewards for honesty improve truth telling by 1.5 times if the reward is big enough.

But it is important to recognize that we all make split second tactical decisions about our actions based on how safe we feel in the situation and our knowledge of social rules and costs. Children over time need to learn that it is safe to tell the truth among family members and that they will not be harshly dealt with. It is a subtle task, but important to learn that deception is a tool that can be important used judiciously when required socially (I have a curfew) or in dangerous situations (I did not see the thug), but can undermine relationships and should not be used with your allies (family and friends).

But parenting involves lying also, which can be a model for the child. Sarcasm is a peculiar form of problematic adult lying. The adults say the opposite or an exaggeration of what they really mean, usually with a smirk or other nonverbal cue to their intent. This is confusing, if not infuriating, to immature children or those who do not understand this twisted communication. It is best to avoid sarcasm with children, or at least be sure to explain it so the children gain understanding over time.

Parents need to “lie” to their children to some extent to reassure and allow for development of confidence. What adult hasn’t said “It’s going to be all right” about a looming storm, car crash, or illness, when actually there is uncertainty. Children count on adults to keep them safe emotionally and physically from things they can’t yet handle. To move forward developmentally, children need adults to be brave leaders, even when the adults don’t feel confident. Some parents think their children must know the “truth” in every instance. Those children are often painfully anxious and overwhelmed.

There is plenty of time for more facts later when the child has the thinking and emotional power to handle the truth.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.