Making something ordinary out of the extraordinary

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Changed
Tue, 02/14/2023 - 13:03

These are tough times for families, children, and practices. In this case, the entire world is going through it at the same time, leaving no escape. There are so many new things each of us needs to do, and for some of the challenges, we are completely thwarted by safety restrictions from doing anything. Adults and children alike are trying to work or learn at home in new ways. This also means that old daily routines have been broken. The sense of disorientation is pervasive. Although it is only one part of what is needed, reestablishing routines can go a long way toward restoring a sense of control and meaning that you can institute for yourself and recommend to your patients.

Wavebreakmedia/Thinkstock

Routines are important for both physical and mental health at every age and time, but especially when a major change is occurring. Examples of such change include natural disasters such as COVID-19, deaths, or separations from loved ones, but also moving, job loss, or new financial instability. Many families and many doctors and staff are experiencing several of these at once these days.

Evidence from studies of times of major disruption such as divorce, a death, war, and natural disasters show that parenting tends to shift to being less organized, with less overall discipline or more arbitrary punishment, and, in some cases, less parent-child connection. Children, on their part, also tend to act differently under these conditions. They are more irritable, upset, anxious, clingy, and aggressive, and also tend to regress in recent developmental achievements such as maintaining toileting and sleep patterns. Parents often do not see the connection to the stress and react to these behaviors in ways that may make things worse by scolding or punishing.

I was really surprised to hear Daniel Kahneman, PhD, Nobel laureate in economics, talk about how even he has trouble judging risk based on mathematical probability. Instead, he recognizes that adults decide about risk based on the behavior of the people around them – when others act worried or agitated, the person does too. Children, even more than adults, must decide if they are safe based on the behavior of the adults around them. When parents maintain routines as closely as possible after a major disruption, children feel reassured that they can expect continuity of their relationship – their most important lifeboat. If their parents keep doing the things they are used to, children basically feel safe.

Simple aspects of sameness important to children are very familiar to pediatricians: always wanting the same spoon, the sandwich cut the same way, only chicken nuggets from a certain store. This tends to be true in typically developing toddlers, preschool, and some school-aged children. The desire to have the same story read to them multiple times – until parents are ready to scream! – is another sign of the importance of predictable routines to children. All of these are best accommodated during times of stress rather than trying to “avoid making a bad habit.” All disruptions of routine are even more disorienting for children with intellectual disabilities or those on the autism spectrum who are generally less able to understand or control their world. Children and adults with preexisting anxiety disorders also are more likely to have more severe reactions to major disruptions and need extra understanding.

Dr. Barbara J. Howard

Routines for eating at least something at regular times – even if the food is not as interesting as prior fare – provide a sense of security, as well as stabilizing blood sugar and bowel patterns. Keeping patterns of washing hands, sitting together as a family, and interacting in conversation, rather than watching TV news, allow an oasis of respite from ongoing stresses. Family meals are also known to promote learning, vocabulary growth, and better behavior.

Setting a schedule for schooling, play, hygiene, and exercise may seem silly when parents and children are home all day, but it instills a sense of meaning to the day. Making a visual schedule for younger children or a written or online one for older children can be a shared activity in itself. I remember hearing about how important changing clothes and cleaning teeth were to prisoners of war during World War II in maintaining a sense of normalcy in that time of chaos.

Exercise is particularly important to set as a routine as it directly reduces stress – even if it may need to take new forms. While there are lots of online exercise programs for adults, it is better for everyone to go outside if they can manage adequate personal spacing. There they can experience the orderly changing of the seasons and the weather, as well as soak up some sunshine. Interactive parent-child play serves multiple purposes of stress relief, seeing each other more relaxed, interacting, and having fun!

Routines for sleep are especially important. To fall asleep under normal circumstances requires a sense of safety, perhaps for evolutionary reasons because of the vulnerability of the paralysis that is part of REM sleep stages. Fear at bedtime is common in young children, as is disorientation in the elderly. Both respond to reassuring bedtime routines done the same way every night, such as brushing teeth, changing clothes, washing up, reading or being read to, and praying – if these were the previous habit. When there has been a major disruption, these routines take on added importance, even if some modifications need to be made in sleep location, privacy, etc. Keeping schedules for naps, bedtime, and wake time as stable as possible makes sleep onset easier and sleep maintenance more likely. It also increases the chances of adequate sleep duration. Getting enough sleep stabilizes mood, reduces irritability, and improves daytime concentration and problem-solving skills. These all are especially needed by adults as well as children when there are major disruptions.

Maintaining chores at times of disruption can be extra difficult, plus this may seem to parents like an added stress for their already-stressed child. But in fact, children are reassured by adults’ continuing these requirements. Not only is an expectation that chores be done a signal that life can be expected to proceed normally, but having children do things to help – such as cleaning up, restocking soap and towels, or emptying trash – gives them an active role and hence some sense of control.

Discipline is, in essence, also a routine. Maintaining standards for kindness to others and following rules can be especially difficult when life has been disrupted because emotional lability is more likely in both adults and children when severely stressed. It is important for parents to consider the source of the misbehavior as possibly stress related and to interrupt it in a gentle and understanding way. A parent might say: “I know you are upset by all the changes. It is even more important now than ever to be kind to your brother.” Under stressful conditions, it is especially important to ask how the child was feeling when acting up, but also to “speak for them” about possible stress-related reasons for their behavior. While parents may correctly say that their child will “take advantage of this excuse,” it is still a teaching opportunity. Children have little insight into these connections to their feelings and actions, but they can learn.

Times when old patterns are disrupted also are times for making new habits. The main new habit I recommend for stress relief and overall mental health are the practices of mindfulness or meditation. Mindfulness may be easier to teach children as it involves paying close attention to one’s thoughts, feelings, and sensations, but doing this without judgment. Children often are naturally better at this than adults, who have layered on more experiences to their thoughts. We pediatricians, as well as the parents we serve, can benefit – especially in stressful times – from sharing in the simple ways children experience the world.

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. Email her at [email protected].

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These are tough times for families, children, and practices. In this case, the entire world is going through it at the same time, leaving no escape. There are so many new things each of us needs to do, and for some of the challenges, we are completely thwarted by safety restrictions from doing anything. Adults and children alike are trying to work or learn at home in new ways. This also means that old daily routines have been broken. The sense of disorientation is pervasive. Although it is only one part of what is needed, reestablishing routines can go a long way toward restoring a sense of control and meaning that you can institute for yourself and recommend to your patients.

Wavebreakmedia/Thinkstock

Routines are important for both physical and mental health at every age and time, but especially when a major change is occurring. Examples of such change include natural disasters such as COVID-19, deaths, or separations from loved ones, but also moving, job loss, or new financial instability. Many families and many doctors and staff are experiencing several of these at once these days.

Evidence from studies of times of major disruption such as divorce, a death, war, and natural disasters show that parenting tends to shift to being less organized, with less overall discipline or more arbitrary punishment, and, in some cases, less parent-child connection. Children, on their part, also tend to act differently under these conditions. They are more irritable, upset, anxious, clingy, and aggressive, and also tend to regress in recent developmental achievements such as maintaining toileting and sleep patterns. Parents often do not see the connection to the stress and react to these behaviors in ways that may make things worse by scolding or punishing.

I was really surprised to hear Daniel Kahneman, PhD, Nobel laureate in economics, talk about how even he has trouble judging risk based on mathematical probability. Instead, he recognizes that adults decide about risk based on the behavior of the people around them – when others act worried or agitated, the person does too. Children, even more than adults, must decide if they are safe based on the behavior of the adults around them. When parents maintain routines as closely as possible after a major disruption, children feel reassured that they can expect continuity of their relationship – their most important lifeboat. If their parents keep doing the things they are used to, children basically feel safe.

Simple aspects of sameness important to children are very familiar to pediatricians: always wanting the same spoon, the sandwich cut the same way, only chicken nuggets from a certain store. This tends to be true in typically developing toddlers, preschool, and some school-aged children. The desire to have the same story read to them multiple times – until parents are ready to scream! – is another sign of the importance of predictable routines to children. All of these are best accommodated during times of stress rather than trying to “avoid making a bad habit.” All disruptions of routine are even more disorienting for children with intellectual disabilities or those on the autism spectrum who are generally less able to understand or control their world. Children and adults with preexisting anxiety disorders also are more likely to have more severe reactions to major disruptions and need extra understanding.

Dr. Barbara J. Howard

Routines for eating at least something at regular times – even if the food is not as interesting as prior fare – provide a sense of security, as well as stabilizing blood sugar and bowel patterns. Keeping patterns of washing hands, sitting together as a family, and interacting in conversation, rather than watching TV news, allow an oasis of respite from ongoing stresses. Family meals are also known to promote learning, vocabulary growth, and better behavior.

Setting a schedule for schooling, play, hygiene, and exercise may seem silly when parents and children are home all day, but it instills a sense of meaning to the day. Making a visual schedule for younger children or a written or online one for older children can be a shared activity in itself. I remember hearing about how important changing clothes and cleaning teeth were to prisoners of war during World War II in maintaining a sense of normalcy in that time of chaos.

Exercise is particularly important to set as a routine as it directly reduces stress – even if it may need to take new forms. While there are lots of online exercise programs for adults, it is better for everyone to go outside if they can manage adequate personal spacing. There they can experience the orderly changing of the seasons and the weather, as well as soak up some sunshine. Interactive parent-child play serves multiple purposes of stress relief, seeing each other more relaxed, interacting, and having fun!

Routines for sleep are especially important. To fall asleep under normal circumstances requires a sense of safety, perhaps for evolutionary reasons because of the vulnerability of the paralysis that is part of REM sleep stages. Fear at bedtime is common in young children, as is disorientation in the elderly. Both respond to reassuring bedtime routines done the same way every night, such as brushing teeth, changing clothes, washing up, reading or being read to, and praying – if these were the previous habit. When there has been a major disruption, these routines take on added importance, even if some modifications need to be made in sleep location, privacy, etc. Keeping schedules for naps, bedtime, and wake time as stable as possible makes sleep onset easier and sleep maintenance more likely. It also increases the chances of adequate sleep duration. Getting enough sleep stabilizes mood, reduces irritability, and improves daytime concentration and problem-solving skills. These all are especially needed by adults as well as children when there are major disruptions.

Maintaining chores at times of disruption can be extra difficult, plus this may seem to parents like an added stress for their already-stressed child. But in fact, children are reassured by adults’ continuing these requirements. Not only is an expectation that chores be done a signal that life can be expected to proceed normally, but having children do things to help – such as cleaning up, restocking soap and towels, or emptying trash – gives them an active role and hence some sense of control.

Discipline is, in essence, also a routine. Maintaining standards for kindness to others and following rules can be especially difficult when life has been disrupted because emotional lability is more likely in both adults and children when severely stressed. It is important for parents to consider the source of the misbehavior as possibly stress related and to interrupt it in a gentle and understanding way. A parent might say: “I know you are upset by all the changes. It is even more important now than ever to be kind to your brother.” Under stressful conditions, it is especially important to ask how the child was feeling when acting up, but also to “speak for them” about possible stress-related reasons for their behavior. While parents may correctly say that their child will “take advantage of this excuse,” it is still a teaching opportunity. Children have little insight into these connections to their feelings and actions, but they can learn.

Times when old patterns are disrupted also are times for making new habits. The main new habit I recommend for stress relief and overall mental health are the practices of mindfulness or meditation. Mindfulness may be easier to teach children as it involves paying close attention to one’s thoughts, feelings, and sensations, but doing this without judgment. Children often are naturally better at this than adults, who have layered on more experiences to their thoughts. We pediatricians, as well as the parents we serve, can benefit – especially in stressful times – from sharing in the simple ways children experience the world.

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. Email her at [email protected].

These are tough times for families, children, and practices. In this case, the entire world is going through it at the same time, leaving no escape. There are so many new things each of us needs to do, and for some of the challenges, we are completely thwarted by safety restrictions from doing anything. Adults and children alike are trying to work or learn at home in new ways. This also means that old daily routines have been broken. The sense of disorientation is pervasive. Although it is only one part of what is needed, reestablishing routines can go a long way toward restoring a sense of control and meaning that you can institute for yourself and recommend to your patients.

Wavebreakmedia/Thinkstock

Routines are important for both physical and mental health at every age and time, but especially when a major change is occurring. Examples of such change include natural disasters such as COVID-19, deaths, or separations from loved ones, but also moving, job loss, or new financial instability. Many families and many doctors and staff are experiencing several of these at once these days.

Evidence from studies of times of major disruption such as divorce, a death, war, and natural disasters show that parenting tends to shift to being less organized, with less overall discipline or more arbitrary punishment, and, in some cases, less parent-child connection. Children, on their part, also tend to act differently under these conditions. They are more irritable, upset, anxious, clingy, and aggressive, and also tend to regress in recent developmental achievements such as maintaining toileting and sleep patterns. Parents often do not see the connection to the stress and react to these behaviors in ways that may make things worse by scolding or punishing.

I was really surprised to hear Daniel Kahneman, PhD, Nobel laureate in economics, talk about how even he has trouble judging risk based on mathematical probability. Instead, he recognizes that adults decide about risk based on the behavior of the people around them – when others act worried or agitated, the person does too. Children, even more than adults, must decide if they are safe based on the behavior of the adults around them. When parents maintain routines as closely as possible after a major disruption, children feel reassured that they can expect continuity of their relationship – their most important lifeboat. If their parents keep doing the things they are used to, children basically feel safe.

Simple aspects of sameness important to children are very familiar to pediatricians: always wanting the same spoon, the sandwich cut the same way, only chicken nuggets from a certain store. This tends to be true in typically developing toddlers, preschool, and some school-aged children. The desire to have the same story read to them multiple times – until parents are ready to scream! – is another sign of the importance of predictable routines to children. All of these are best accommodated during times of stress rather than trying to “avoid making a bad habit.” All disruptions of routine are even more disorienting for children with intellectual disabilities or those on the autism spectrum who are generally less able to understand or control their world. Children and adults with preexisting anxiety disorders also are more likely to have more severe reactions to major disruptions and need extra understanding.

Dr. Barbara J. Howard

Routines for eating at least something at regular times – even if the food is not as interesting as prior fare – provide a sense of security, as well as stabilizing blood sugar and bowel patterns. Keeping patterns of washing hands, sitting together as a family, and interacting in conversation, rather than watching TV news, allow an oasis of respite from ongoing stresses. Family meals are also known to promote learning, vocabulary growth, and better behavior.

Setting a schedule for schooling, play, hygiene, and exercise may seem silly when parents and children are home all day, but it instills a sense of meaning to the day. Making a visual schedule for younger children or a written or online one for older children can be a shared activity in itself. I remember hearing about how important changing clothes and cleaning teeth were to prisoners of war during World War II in maintaining a sense of normalcy in that time of chaos.

Exercise is particularly important to set as a routine as it directly reduces stress – even if it may need to take new forms. While there are lots of online exercise programs for adults, it is better for everyone to go outside if they can manage adequate personal spacing. There they can experience the orderly changing of the seasons and the weather, as well as soak up some sunshine. Interactive parent-child play serves multiple purposes of stress relief, seeing each other more relaxed, interacting, and having fun!

Routines for sleep are especially important. To fall asleep under normal circumstances requires a sense of safety, perhaps for evolutionary reasons because of the vulnerability of the paralysis that is part of REM sleep stages. Fear at bedtime is common in young children, as is disorientation in the elderly. Both respond to reassuring bedtime routines done the same way every night, such as brushing teeth, changing clothes, washing up, reading or being read to, and praying – if these were the previous habit. When there has been a major disruption, these routines take on added importance, even if some modifications need to be made in sleep location, privacy, etc. Keeping schedules for naps, bedtime, and wake time as stable as possible makes sleep onset easier and sleep maintenance more likely. It also increases the chances of adequate sleep duration. Getting enough sleep stabilizes mood, reduces irritability, and improves daytime concentration and problem-solving skills. These all are especially needed by adults as well as children when there are major disruptions.

Maintaining chores at times of disruption can be extra difficult, plus this may seem to parents like an added stress for their already-stressed child. But in fact, children are reassured by adults’ continuing these requirements. Not only is an expectation that chores be done a signal that life can be expected to proceed normally, but having children do things to help – such as cleaning up, restocking soap and towels, or emptying trash – gives them an active role and hence some sense of control.

Discipline is, in essence, also a routine. Maintaining standards for kindness to others and following rules can be especially difficult when life has been disrupted because emotional lability is more likely in both adults and children when severely stressed. It is important for parents to consider the source of the misbehavior as possibly stress related and to interrupt it in a gentle and understanding way. A parent might say: “I know you are upset by all the changes. It is even more important now than ever to be kind to your brother.” Under stressful conditions, it is especially important to ask how the child was feeling when acting up, but also to “speak for them” about possible stress-related reasons for their behavior. While parents may correctly say that their child will “take advantage of this excuse,” it is still a teaching opportunity. Children have little insight into these connections to their feelings and actions, but they can learn.

Times when old patterns are disrupted also are times for making new habits. The main new habit I recommend for stress relief and overall mental health are the practices of mindfulness or meditation. Mindfulness may be easier to teach children as it involves paying close attention to one’s thoughts, feelings, and sensations, but doing this without judgment. Children often are naturally better at this than adults, who have layered on more experiences to their thoughts. We pediatricians, as well as the parents we serve, can benefit – especially in stressful times – from sharing in the simple ways children experience the world.

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. Email her at [email protected].

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The role of FOAM and social networks in COVID-19

Article Type
Changed
Tue, 02/14/2023 - 13:03

“Uncertainty creates weakness. Uncertainty makes one tentative, if not fearful, and tentative steps, even when in the right direction, may not overcome significant obstacles.”1

Recently, I spent my vacation time quarantined reading “The Great Influenza,” which recounts the history of the 1918 pandemic. Despite over a century of scientific and medical progress, the parallels to our current situation are indisputable. Just as in 1918, we are limiting social gatherings, quarantining, wearing face masks, and living with the fear and anxiety of keeping ourselves and our families safe. In 1918, use of aspirin, quinine, and digitalis therapies in a desperate search for relief despite limited evidence mirror the current use of hydroxychloroquine, azithromycin, and lopinavir/ritonavir. While there are many similarities between the two situations, in this pandemic our channels for dissemination of scientific literature are better developed, and online networks are enabling physicians across the globe to communicate their experience and findings in near real time.

During this time of uncertainty, our understanding of COVID-19 evolves daily. Without the advantage of robust randomized, controlled trials and large-scale studies to guide us, we are forced to rely on pattern recognition for surveillance and anecdotal or limited case-based accounts to guide clinical care. Fortunately, free open-access medical education (FOAM) and social networks offer a significant advantage in our ability to collect and disseminate information.
 

Free open access medical education

The concept of FOAM started in 2012 with the intent of creating a collaborative and constantly evolving community to provide open-access medical education. It encompasses multiple platforms – blogs, podcasts, videos, and social media – and features content experts from across the globe. Since its inception, FOAM has grown in popularity and use, especially within emergency medicine and critical care communities, as an adjunct for asynchronous learning.2,3

Dr. Dennis Ren

In a time where knowledge of COVID-19 is dynamically changing, traditional sources like textbooks, journals, and organizational guidelines often lag behind real-time clinical experience and needs. Additionally, many clinicians are now being tasked with taking care of patient populations and a new critical illness profile with which they are not comfortable. It is challenging to find a well-curated and updated repository of information to answer questions surrounding pathophysiology, critical care, ventilator management, caring for adult patients, and personal protective equipment (PPE). During this rapidly evolving reality, FOAM is becoming the ideal modality for timely and efficient sharing of reviews of current literature, expert discussions, and clinical practice guidelines.

A few self-directed hours on EMCrit’s Internet Book of Critical Care’s COVID-19 chapter reveals a bastion of content regarding diagnosis, pathophysiology, transmission, therapies, and ventilator strategies.4 It includes references to major journals and recommendations from international societies. Websites like EMCrit and REBEL EM are updated daily with podcasts, videos, and blog posts surrounding the latest highly debated topics in COVID-19 management.5 Podcasts like EM:RAP and Peds RAP have made COVID segments discussing important topics like pharmacotherapy, telemedicine, and pregnancy available for free.6,7 Many networks, institutions, and individual physicians have created and posted videos online on critical care topics and refreshers.
 

 

 

Social networks

Online social networks composed of international physicians within Facebook and LinkedIn serve as miniature publishing houses. First-hand accounts of patient presentations and patient care act as case reports. As similar accounts accumulate, they become case series. Patterns emerge and new hypotheses are generated, debated, and critiqued through this informal peer review. Personal accounts of frustration with lack of PPE, fear of exposing loved ones, distress at being separated from family, and grief of witnessing multiple patients die alone are opinion and perspective articles.

Dr. Joelle Simpson

These networks offer the space for sharing. Those who have had the experience of caring for the surge of COVID-19 patients offer advice and words of caution to those who have yet to experience it. Protocols from a multitude of institutions on triage, surge, disposition, and end-of-life care are disseminated, serving as templates for those that have not yet developed their own. There is an impressive variety of innovative, do-it-yourself projects surrounding PPE, intubation boxes, and three-dimensionally printed ventilator parts.

Finally, these networks provide emotional support. There are offers to ship additional PPE, videos of cities cheering as clinicians go to work, stories of triumph and recovery, pictures depicting ongoing wellness activities, and the occasional much-needed humorous anecdote or illustration. These networks reinforce the message that our lives continue despite this upheaval, and we are not alone in this struggle.

The end of the passage in The Great Influenza concludes with: “Ultimately a scientist has nothing to believe in but the process of inquiry. To move forcefully and aggressively even while uncertain requires a confidence and strength deeper than physical courage.”

FOAM and social networks are crucial channels for collecting and conveying up-to-date information during disasters. They represent a highly adaptable, evolving, and collaborative global community’s determination to persevere through time of uncertainty together.

Dr. Ren is a pediatric emergency medicine fellow at Children’s National Hospital, Washington. Dr. Simpson is a pediatric emergency medicine attending and medical director of emergency preparedness at the hospital. They reported that they do not have any disclosures or conflicts of interest. Email Dr. Ren and Dr. Simpson at [email protected].

References

1. “The Great Influenza: The Story of the Deadliest Pandemic in History.” (New York: Penguin Books, 2005, pp. 261-62).

2. Emerg Med J. 2014 Oct;31(e1):e76-7.

3. Acad Med. 2014 Apr;89(4):598-601.

4. “The Internet Book of Critical Care: COVID-19.” EMCrit Project.

5. “Covid-19.” REBEL EM-Emergency Medicine Blog.

6. “EM:RAP COVID-19 Resources.” EM RAP: Emergency Medicine Reviews and Perspectives.

7. “Episodes.” Peds RAP, Hippo Education.

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Topics
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“Uncertainty creates weakness. Uncertainty makes one tentative, if not fearful, and tentative steps, even when in the right direction, may not overcome significant obstacles.”1

Recently, I spent my vacation time quarantined reading “The Great Influenza,” which recounts the history of the 1918 pandemic. Despite over a century of scientific and medical progress, the parallels to our current situation are indisputable. Just as in 1918, we are limiting social gatherings, quarantining, wearing face masks, and living with the fear and anxiety of keeping ourselves and our families safe. In 1918, use of aspirin, quinine, and digitalis therapies in a desperate search for relief despite limited evidence mirror the current use of hydroxychloroquine, azithromycin, and lopinavir/ritonavir. While there are many similarities between the two situations, in this pandemic our channels for dissemination of scientific literature are better developed, and online networks are enabling physicians across the globe to communicate their experience and findings in near real time.

During this time of uncertainty, our understanding of COVID-19 evolves daily. Without the advantage of robust randomized, controlled trials and large-scale studies to guide us, we are forced to rely on pattern recognition for surveillance and anecdotal or limited case-based accounts to guide clinical care. Fortunately, free open-access medical education (FOAM) and social networks offer a significant advantage in our ability to collect and disseminate information.
 

Free open access medical education

The concept of FOAM started in 2012 with the intent of creating a collaborative and constantly evolving community to provide open-access medical education. It encompasses multiple platforms – blogs, podcasts, videos, and social media – and features content experts from across the globe. Since its inception, FOAM has grown in popularity and use, especially within emergency medicine and critical care communities, as an adjunct for asynchronous learning.2,3

Dr. Dennis Ren

In a time where knowledge of COVID-19 is dynamically changing, traditional sources like textbooks, journals, and organizational guidelines often lag behind real-time clinical experience and needs. Additionally, many clinicians are now being tasked with taking care of patient populations and a new critical illness profile with which they are not comfortable. It is challenging to find a well-curated and updated repository of information to answer questions surrounding pathophysiology, critical care, ventilator management, caring for adult patients, and personal protective equipment (PPE). During this rapidly evolving reality, FOAM is becoming the ideal modality for timely and efficient sharing of reviews of current literature, expert discussions, and clinical practice guidelines.

A few self-directed hours on EMCrit’s Internet Book of Critical Care’s COVID-19 chapter reveals a bastion of content regarding diagnosis, pathophysiology, transmission, therapies, and ventilator strategies.4 It includes references to major journals and recommendations from international societies. Websites like EMCrit and REBEL EM are updated daily with podcasts, videos, and blog posts surrounding the latest highly debated topics in COVID-19 management.5 Podcasts like EM:RAP and Peds RAP have made COVID segments discussing important topics like pharmacotherapy, telemedicine, and pregnancy available for free.6,7 Many networks, institutions, and individual physicians have created and posted videos online on critical care topics and refreshers.
 

 

 

Social networks

Online social networks composed of international physicians within Facebook and LinkedIn serve as miniature publishing houses. First-hand accounts of patient presentations and patient care act as case reports. As similar accounts accumulate, they become case series. Patterns emerge and new hypotheses are generated, debated, and critiqued through this informal peer review. Personal accounts of frustration with lack of PPE, fear of exposing loved ones, distress at being separated from family, and grief of witnessing multiple patients die alone are opinion and perspective articles.

Dr. Joelle Simpson

These networks offer the space for sharing. Those who have had the experience of caring for the surge of COVID-19 patients offer advice and words of caution to those who have yet to experience it. Protocols from a multitude of institutions on triage, surge, disposition, and end-of-life care are disseminated, serving as templates for those that have not yet developed their own. There is an impressive variety of innovative, do-it-yourself projects surrounding PPE, intubation boxes, and three-dimensionally printed ventilator parts.

Finally, these networks provide emotional support. There are offers to ship additional PPE, videos of cities cheering as clinicians go to work, stories of triumph and recovery, pictures depicting ongoing wellness activities, and the occasional much-needed humorous anecdote or illustration. These networks reinforce the message that our lives continue despite this upheaval, and we are not alone in this struggle.

The end of the passage in The Great Influenza concludes with: “Ultimately a scientist has nothing to believe in but the process of inquiry. To move forcefully and aggressively even while uncertain requires a confidence and strength deeper than physical courage.”

FOAM and social networks are crucial channels for collecting and conveying up-to-date information during disasters. They represent a highly adaptable, evolving, and collaborative global community’s determination to persevere through time of uncertainty together.

Dr. Ren is a pediatric emergency medicine fellow at Children’s National Hospital, Washington. Dr. Simpson is a pediatric emergency medicine attending and medical director of emergency preparedness at the hospital. They reported that they do not have any disclosures or conflicts of interest. Email Dr. Ren and Dr. Simpson at [email protected].

References

1. “The Great Influenza: The Story of the Deadliest Pandemic in History.” (New York: Penguin Books, 2005, pp. 261-62).

2. Emerg Med J. 2014 Oct;31(e1):e76-7.

3. Acad Med. 2014 Apr;89(4):598-601.

4. “The Internet Book of Critical Care: COVID-19.” EMCrit Project.

5. “Covid-19.” REBEL EM-Emergency Medicine Blog.

6. “EM:RAP COVID-19 Resources.” EM RAP: Emergency Medicine Reviews and Perspectives.

7. “Episodes.” Peds RAP, Hippo Education.

“Uncertainty creates weakness. Uncertainty makes one tentative, if not fearful, and tentative steps, even when in the right direction, may not overcome significant obstacles.”1

Recently, I spent my vacation time quarantined reading “The Great Influenza,” which recounts the history of the 1918 pandemic. Despite over a century of scientific and medical progress, the parallels to our current situation are indisputable. Just as in 1918, we are limiting social gatherings, quarantining, wearing face masks, and living with the fear and anxiety of keeping ourselves and our families safe. In 1918, use of aspirin, quinine, and digitalis therapies in a desperate search for relief despite limited evidence mirror the current use of hydroxychloroquine, azithromycin, and lopinavir/ritonavir. While there are many similarities between the two situations, in this pandemic our channels for dissemination of scientific literature are better developed, and online networks are enabling physicians across the globe to communicate their experience and findings in near real time.

During this time of uncertainty, our understanding of COVID-19 evolves daily. Without the advantage of robust randomized, controlled trials and large-scale studies to guide us, we are forced to rely on pattern recognition for surveillance and anecdotal or limited case-based accounts to guide clinical care. Fortunately, free open-access medical education (FOAM) and social networks offer a significant advantage in our ability to collect and disseminate information.
 

Free open access medical education

The concept of FOAM started in 2012 with the intent of creating a collaborative and constantly evolving community to provide open-access medical education. It encompasses multiple platforms – blogs, podcasts, videos, and social media – and features content experts from across the globe. Since its inception, FOAM has grown in popularity and use, especially within emergency medicine and critical care communities, as an adjunct for asynchronous learning.2,3

Dr. Dennis Ren

In a time where knowledge of COVID-19 is dynamically changing, traditional sources like textbooks, journals, and organizational guidelines often lag behind real-time clinical experience and needs. Additionally, many clinicians are now being tasked with taking care of patient populations and a new critical illness profile with which they are not comfortable. It is challenging to find a well-curated and updated repository of information to answer questions surrounding pathophysiology, critical care, ventilator management, caring for adult patients, and personal protective equipment (PPE). During this rapidly evolving reality, FOAM is becoming the ideal modality for timely and efficient sharing of reviews of current literature, expert discussions, and clinical practice guidelines.

A few self-directed hours on EMCrit’s Internet Book of Critical Care’s COVID-19 chapter reveals a bastion of content regarding diagnosis, pathophysiology, transmission, therapies, and ventilator strategies.4 It includes references to major journals and recommendations from international societies. Websites like EMCrit and REBEL EM are updated daily with podcasts, videos, and blog posts surrounding the latest highly debated topics in COVID-19 management.5 Podcasts like EM:RAP and Peds RAP have made COVID segments discussing important topics like pharmacotherapy, telemedicine, and pregnancy available for free.6,7 Many networks, institutions, and individual physicians have created and posted videos online on critical care topics and refreshers.
 

 

 

Social networks

Online social networks composed of international physicians within Facebook and LinkedIn serve as miniature publishing houses. First-hand accounts of patient presentations and patient care act as case reports. As similar accounts accumulate, they become case series. Patterns emerge and new hypotheses are generated, debated, and critiqued through this informal peer review. Personal accounts of frustration with lack of PPE, fear of exposing loved ones, distress at being separated from family, and grief of witnessing multiple patients die alone are opinion and perspective articles.

Dr. Joelle Simpson

These networks offer the space for sharing. Those who have had the experience of caring for the surge of COVID-19 patients offer advice and words of caution to those who have yet to experience it. Protocols from a multitude of institutions on triage, surge, disposition, and end-of-life care are disseminated, serving as templates for those that have not yet developed their own. There is an impressive variety of innovative, do-it-yourself projects surrounding PPE, intubation boxes, and three-dimensionally printed ventilator parts.

Finally, these networks provide emotional support. There are offers to ship additional PPE, videos of cities cheering as clinicians go to work, stories of triumph and recovery, pictures depicting ongoing wellness activities, and the occasional much-needed humorous anecdote or illustration. These networks reinforce the message that our lives continue despite this upheaval, and we are not alone in this struggle.

The end of the passage in The Great Influenza concludes with: “Ultimately a scientist has nothing to believe in but the process of inquiry. To move forcefully and aggressively even while uncertain requires a confidence and strength deeper than physical courage.”

FOAM and social networks are crucial channels for collecting and conveying up-to-date information during disasters. They represent a highly adaptable, evolving, and collaborative global community’s determination to persevere through time of uncertainty together.

Dr. Ren is a pediatric emergency medicine fellow at Children’s National Hospital, Washington. Dr. Simpson is a pediatric emergency medicine attending and medical director of emergency preparedness at the hospital. They reported that they do not have any disclosures or conflicts of interest. Email Dr. Ren and Dr. Simpson at [email protected].

References

1. “The Great Influenza: The Story of the Deadliest Pandemic in History.” (New York: Penguin Books, 2005, pp. 261-62).

2. Emerg Med J. 2014 Oct;31(e1):e76-7.

3. Acad Med. 2014 Apr;89(4):598-601.

4. “The Internet Book of Critical Care: COVID-19.” EMCrit Project.

5. “Covid-19.” REBEL EM-Emergency Medicine Blog.

6. “EM:RAP COVID-19 Resources.” EM RAP: Emergency Medicine Reviews and Perspectives.

7. “Episodes.” Peds RAP, Hippo Education.

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Learning about the curve

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Tue, 02/14/2023 - 13:03

Empty shelves that once cradled toilet paper rolls; lines of shoppers, some with masks; waiting 6 feet or at least a shopping cart length apart to get into grocery stores; hazmat-suited workers loading body bags into makeshift mortuaries ... These are the images we have come to associate with the COVID-19 pandemic. But then there also are the graphs and charts, none of them bearing good news. Some are difficult to interpret because they may be missing a key ingredient, such as a scale. Day to day fluctuations in the timeliness of the data points can make valid comparisons impossible. In most cases, it is too early to look at the graphs and hope for the big picture. Whether you are concerned about the stock market or the number of new cases of the virus in your county, you are hoping to see some graphic depiction of a favorable trend.

Richard McMillin/iStock Editorial/Getty Images

We have suddenly learned about the urgency of a process called “flattening the curve.” Are we doing as good a job of flattening as we could be? Are we doing better than France or Spain? Or are we heading toward an Italianesque apocalypse? Who is going to tell us when the flattening is for real and not just a 2- or 3-day statistical aberration?

The curves we are obsessed with today are those showing us new cases and new deaths. But there is another curve that we will need to concentrate on long after the much yearned for flattening of the death curve has been achieved. And we won’t be seeing this curve in four-color graphics on the front page of our newspapers. It is the learning curve, and we want it to be as steep as we can make it without any hint of flattening in the foreseeable future.

We need to learn more about corona-like viruses. Why are some of us more vulnerable? We need to learn more about contagion. Does the 6-foot guideline make any sense? How long are viral particles floating in the air capable of initiating disease? What about air flow and dilution? Can we build a cruise ship or airplane that will be less of a health hazard?

More importantly, we need to learn to be better prepared. Even before the pandemic there have been shortages in intravenous solutions and drugs of critical importance to common diseases. Can we learn how to create reliable and affordable supply chains that allow researchers and developers to make a reasonable profit? Can we relearn to value science? Can we learn to invest more heavily in epidemiology and make it a specialty that attracts our best thinkers and communicators? Then can we elect officials who will share our trust in their recommendations?

Can we do a better job of resolving the tension between those who believe in a strong federal government and those who believe in local autonomy because we are seeing every day that this is an issue of survival, not just coexistence? Can we learn that the globalization that has allowed this viral spread can also be leveraged to beat it into submission?

Dr. William G. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years.
Dr. William G. Wilkoff

Over the last half century there has been an unfortunate flattening of the learning curve. Ironically we have seen exponential growth among hi-tech industries that have forced us to keep abreast of new developments. But along with this has been a growing skepticism about value of scientific investigation. It is time we climbed back on that steep learning curve. The view gets better the higher we climb.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Email him at [email protected].

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Empty shelves that once cradled toilet paper rolls; lines of shoppers, some with masks; waiting 6 feet or at least a shopping cart length apart to get into grocery stores; hazmat-suited workers loading body bags into makeshift mortuaries ... These are the images we have come to associate with the COVID-19 pandemic. But then there also are the graphs and charts, none of them bearing good news. Some are difficult to interpret because they may be missing a key ingredient, such as a scale. Day to day fluctuations in the timeliness of the data points can make valid comparisons impossible. In most cases, it is too early to look at the graphs and hope for the big picture. Whether you are concerned about the stock market or the number of new cases of the virus in your county, you are hoping to see some graphic depiction of a favorable trend.

Richard McMillin/iStock Editorial/Getty Images

We have suddenly learned about the urgency of a process called “flattening the curve.” Are we doing as good a job of flattening as we could be? Are we doing better than France or Spain? Or are we heading toward an Italianesque apocalypse? Who is going to tell us when the flattening is for real and not just a 2- or 3-day statistical aberration?

The curves we are obsessed with today are those showing us new cases and new deaths. But there is another curve that we will need to concentrate on long after the much yearned for flattening of the death curve has been achieved. And we won’t be seeing this curve in four-color graphics on the front page of our newspapers. It is the learning curve, and we want it to be as steep as we can make it without any hint of flattening in the foreseeable future.

We need to learn more about corona-like viruses. Why are some of us more vulnerable? We need to learn more about contagion. Does the 6-foot guideline make any sense? How long are viral particles floating in the air capable of initiating disease? What about air flow and dilution? Can we build a cruise ship or airplane that will be less of a health hazard?

More importantly, we need to learn to be better prepared. Even before the pandemic there have been shortages in intravenous solutions and drugs of critical importance to common diseases. Can we learn how to create reliable and affordable supply chains that allow researchers and developers to make a reasonable profit? Can we relearn to value science? Can we learn to invest more heavily in epidemiology and make it a specialty that attracts our best thinkers and communicators? Then can we elect officials who will share our trust in their recommendations?

Can we do a better job of resolving the tension between those who believe in a strong federal government and those who believe in local autonomy because we are seeing every day that this is an issue of survival, not just coexistence? Can we learn that the globalization that has allowed this viral spread can also be leveraged to beat it into submission?

Dr. William G. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years.
Dr. William G. Wilkoff

Over the last half century there has been an unfortunate flattening of the learning curve. Ironically we have seen exponential growth among hi-tech industries that have forced us to keep abreast of new developments. But along with this has been a growing skepticism about value of scientific investigation. It is time we climbed back on that steep learning curve. The view gets better the higher we climb.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Email him at [email protected].

Empty shelves that once cradled toilet paper rolls; lines of shoppers, some with masks; waiting 6 feet or at least a shopping cart length apart to get into grocery stores; hazmat-suited workers loading body bags into makeshift mortuaries ... These are the images we have come to associate with the COVID-19 pandemic. But then there also are the graphs and charts, none of them bearing good news. Some are difficult to interpret because they may be missing a key ingredient, such as a scale. Day to day fluctuations in the timeliness of the data points can make valid comparisons impossible. In most cases, it is too early to look at the graphs and hope for the big picture. Whether you are concerned about the stock market or the number of new cases of the virus in your county, you are hoping to see some graphic depiction of a favorable trend.

Richard McMillin/iStock Editorial/Getty Images

We have suddenly learned about the urgency of a process called “flattening the curve.” Are we doing as good a job of flattening as we could be? Are we doing better than France or Spain? Or are we heading toward an Italianesque apocalypse? Who is going to tell us when the flattening is for real and not just a 2- or 3-day statistical aberration?

The curves we are obsessed with today are those showing us new cases and new deaths. But there is another curve that we will need to concentrate on long after the much yearned for flattening of the death curve has been achieved. And we won’t be seeing this curve in four-color graphics on the front page of our newspapers. It is the learning curve, and we want it to be as steep as we can make it without any hint of flattening in the foreseeable future.

We need to learn more about corona-like viruses. Why are some of us more vulnerable? We need to learn more about contagion. Does the 6-foot guideline make any sense? How long are viral particles floating in the air capable of initiating disease? What about air flow and dilution? Can we build a cruise ship or airplane that will be less of a health hazard?

More importantly, we need to learn to be better prepared. Even before the pandemic there have been shortages in intravenous solutions and drugs of critical importance to common diseases. Can we learn how to create reliable and affordable supply chains that allow researchers and developers to make a reasonable profit? Can we relearn to value science? Can we learn to invest more heavily in epidemiology and make it a specialty that attracts our best thinkers and communicators? Then can we elect officials who will share our trust in their recommendations?

Can we do a better job of resolving the tension between those who believe in a strong federal government and those who believe in local autonomy because we are seeing every day that this is an issue of survival, not just coexistence? Can we learn that the globalization that has allowed this viral spread can also be leveraged to beat it into submission?

Dr. William G. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years.
Dr. William G. Wilkoff

Over the last half century there has been an unfortunate flattening of the learning curve. Ironically we have seen exponential growth among hi-tech industries that have forced us to keep abreast of new developments. But along with this has been a growing skepticism about value of scientific investigation. It is time we climbed back on that steep learning curve. The view gets better the higher we climb.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Email him at [email protected].

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Resources for LGBTQ youth during challenging times

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Tue, 02/14/2023 - 13:03

If you are anything like me, March 1 came and went as just another first day of the month. Few of us could have imagined that our day-to-day way of life would soon be upended, and our country would be in the midst of the COVID-19 pandemic. While there is considerable anxiety around protecting our individual health, social distancing and the physical isolation that comes from it have cut off a vital source of support for many of our lesbian, gay, bisexual, transgender, and questioning (or queer) (LGBTQ) youth. Shared experiences with other young people like themselves provide these youth with a sense of community that they may not find in their schools, towns, etc.

LGBTQ youth already face increased rates of anxiety and depression compared with their heterosexual and cisgender peers. According to the 2017 Youth Risk Behavior Survey, 63% of LGB youth nationwide reported feeling sad or hopeless compared with 28% of their heterosexual peers. While quarantined at home, many of these youth now are stuck for many more hours per day with families who may not accept them for who they are. Previous research by Ryan et al. shows that LGB adolescents who have higher rates of family rejection are nearly six times more likely to have higher rates of depression and more than eight times more likely to attempt suicide than their peers who come from families with low or no levels of rejection (Pediatrics. 2009 Jan;123[1]:346-52). Going to school for roughly 8 hours a day allows some of these youth an escape from what is otherwise an unpleasant home situation. In addition, educators and other school staff may be among the only allies that a student has in his/her life, and school cancellations remove students from access to these important people.

AJ_Watt/E+

Due to stay-at-home orders and physical distancing measures, lack of in-person access to medical and psychological care can be distressing for many LGBTQ youth. While many practices have been able to convert to audiovisual telemedicine visits, not all of them have the resources or capability to do so. Consequently, LGBTQ youth may have reduced access to support services that help to bolster their social and emotional health. In addition, many trans youth suffer from physical dysphoria that can make it distressing to see themselves on camera doing teletherapy and so they wish to avoid it for this reason.

This is not to say that everything is bleak. LGBTQ youth can also be resilient in times of stress and worry. “The LGBTQ community has a long history of overcoming adversity and utilizing challenges to build an even stronger sense of community. This pandemic will create yet another opportunity for us to highlight existing health disparities and to support our LGBTQ young people in finding creative responses,” said Heather Newby, LCSW, clinical social worker for the GENECIS (GENder Education and Care Interdisciplinary Support) Program at Children’s Medical Center Dallas. In addition, she reported that many LGBTQ advocacy groups have created excellent online support networks and resources to provide nationwide, regional, and local help. By leveraging these youths’ capability for resilience, we are best able to support them during a time of crisis.

During these challenging times, there are a number of resources that LGBTQ youth can turn to while trying to maintain their connection to their peers. First, many local LGBTQ service organizations have moved their in-person support groups to a virtual or online platform. Check with your local service organization to see what they are offering during these times. National organizations, such as Gender Spectrum, continue to have online groups as well that youth can participate in. Second, many virtual mental health helplines, such as those through the Trevor Project, remain staffed should LGBTQ youth need to access their services (1-866-488-7386, plus text and chat). They can be reached 24/7 to help those whose mental health has been affected during this pandemic. Third, youth can continue to stay connected to their friends through means such as Zoom, FaceTime, or other virtual audiovisual tools. Lastly, some youth have taken to meeting in school parking lots, mall parking lots, etc., and staying at least 6 feet apart so that they can still see their friends in person.

Dr. M. Brett Cooper

While the current times may be challenging, they will pass and we will be able to return to those activities that bring us joy. Do not hesitate to reach out if you need help. As Rainer Maria Rilke once said, “In the difficult, we must have our joys, our happiness, our dreams: There against the depth of this background, they stand out, there for the first time we see how beautiful they are.”
 

Dr. Cooper is assistant professor of pediatrics at University of Texas Southwestern, Dallas, and an adolescent medicine specialist at Children’s Medical Center Dallas. He has no relevant financial disclosures. Dr. Cooper is on Twitter @teendocmbc. Email him at [email protected].

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If you are anything like me, March 1 came and went as just another first day of the month. Few of us could have imagined that our day-to-day way of life would soon be upended, and our country would be in the midst of the COVID-19 pandemic. While there is considerable anxiety around protecting our individual health, social distancing and the physical isolation that comes from it have cut off a vital source of support for many of our lesbian, gay, bisexual, transgender, and questioning (or queer) (LGBTQ) youth. Shared experiences with other young people like themselves provide these youth with a sense of community that they may not find in their schools, towns, etc.

LGBTQ youth already face increased rates of anxiety and depression compared with their heterosexual and cisgender peers. According to the 2017 Youth Risk Behavior Survey, 63% of LGB youth nationwide reported feeling sad or hopeless compared with 28% of their heterosexual peers. While quarantined at home, many of these youth now are stuck for many more hours per day with families who may not accept them for who they are. Previous research by Ryan et al. shows that LGB adolescents who have higher rates of family rejection are nearly six times more likely to have higher rates of depression and more than eight times more likely to attempt suicide than their peers who come from families with low or no levels of rejection (Pediatrics. 2009 Jan;123[1]:346-52). Going to school for roughly 8 hours a day allows some of these youth an escape from what is otherwise an unpleasant home situation. In addition, educators and other school staff may be among the only allies that a student has in his/her life, and school cancellations remove students from access to these important people.

AJ_Watt/E+

Due to stay-at-home orders and physical distancing measures, lack of in-person access to medical and psychological care can be distressing for many LGBTQ youth. While many practices have been able to convert to audiovisual telemedicine visits, not all of them have the resources or capability to do so. Consequently, LGBTQ youth may have reduced access to support services that help to bolster their social and emotional health. In addition, many trans youth suffer from physical dysphoria that can make it distressing to see themselves on camera doing teletherapy and so they wish to avoid it for this reason.

This is not to say that everything is bleak. LGBTQ youth can also be resilient in times of stress and worry. “The LGBTQ community has a long history of overcoming adversity and utilizing challenges to build an even stronger sense of community. This pandemic will create yet another opportunity for us to highlight existing health disparities and to support our LGBTQ young people in finding creative responses,” said Heather Newby, LCSW, clinical social worker for the GENECIS (GENder Education and Care Interdisciplinary Support) Program at Children’s Medical Center Dallas. In addition, she reported that many LGBTQ advocacy groups have created excellent online support networks and resources to provide nationwide, regional, and local help. By leveraging these youths’ capability for resilience, we are best able to support them during a time of crisis.

During these challenging times, there are a number of resources that LGBTQ youth can turn to while trying to maintain their connection to their peers. First, many local LGBTQ service organizations have moved their in-person support groups to a virtual or online platform. Check with your local service organization to see what they are offering during these times. National organizations, such as Gender Spectrum, continue to have online groups as well that youth can participate in. Second, many virtual mental health helplines, such as those through the Trevor Project, remain staffed should LGBTQ youth need to access their services (1-866-488-7386, plus text and chat). They can be reached 24/7 to help those whose mental health has been affected during this pandemic. Third, youth can continue to stay connected to their friends through means such as Zoom, FaceTime, or other virtual audiovisual tools. Lastly, some youth have taken to meeting in school parking lots, mall parking lots, etc., and staying at least 6 feet apart so that they can still see their friends in person.

Dr. M. Brett Cooper

While the current times may be challenging, they will pass and we will be able to return to those activities that bring us joy. Do not hesitate to reach out if you need help. As Rainer Maria Rilke once said, “In the difficult, we must have our joys, our happiness, our dreams: There against the depth of this background, they stand out, there for the first time we see how beautiful they are.”
 

Dr. Cooper is assistant professor of pediatrics at University of Texas Southwestern, Dallas, and an adolescent medicine specialist at Children’s Medical Center Dallas. He has no relevant financial disclosures. Dr. Cooper is on Twitter @teendocmbc. Email him at [email protected].

If you are anything like me, March 1 came and went as just another first day of the month. Few of us could have imagined that our day-to-day way of life would soon be upended, and our country would be in the midst of the COVID-19 pandemic. While there is considerable anxiety around protecting our individual health, social distancing and the physical isolation that comes from it have cut off a vital source of support for many of our lesbian, gay, bisexual, transgender, and questioning (or queer) (LGBTQ) youth. Shared experiences with other young people like themselves provide these youth with a sense of community that they may not find in their schools, towns, etc.

LGBTQ youth already face increased rates of anxiety and depression compared with their heterosexual and cisgender peers. According to the 2017 Youth Risk Behavior Survey, 63% of LGB youth nationwide reported feeling sad or hopeless compared with 28% of their heterosexual peers. While quarantined at home, many of these youth now are stuck for many more hours per day with families who may not accept them for who they are. Previous research by Ryan et al. shows that LGB adolescents who have higher rates of family rejection are nearly six times more likely to have higher rates of depression and more than eight times more likely to attempt suicide than their peers who come from families with low or no levels of rejection (Pediatrics. 2009 Jan;123[1]:346-52). Going to school for roughly 8 hours a day allows some of these youth an escape from what is otherwise an unpleasant home situation. In addition, educators and other school staff may be among the only allies that a student has in his/her life, and school cancellations remove students from access to these important people.

AJ_Watt/E+

Due to stay-at-home orders and physical distancing measures, lack of in-person access to medical and psychological care can be distressing for many LGBTQ youth. While many practices have been able to convert to audiovisual telemedicine visits, not all of them have the resources or capability to do so. Consequently, LGBTQ youth may have reduced access to support services that help to bolster their social and emotional health. In addition, many trans youth suffer from physical dysphoria that can make it distressing to see themselves on camera doing teletherapy and so they wish to avoid it for this reason.

This is not to say that everything is bleak. LGBTQ youth can also be resilient in times of stress and worry. “The LGBTQ community has a long history of overcoming adversity and utilizing challenges to build an even stronger sense of community. This pandemic will create yet another opportunity for us to highlight existing health disparities and to support our LGBTQ young people in finding creative responses,” said Heather Newby, LCSW, clinical social worker for the GENECIS (GENder Education and Care Interdisciplinary Support) Program at Children’s Medical Center Dallas. In addition, she reported that many LGBTQ advocacy groups have created excellent online support networks and resources to provide nationwide, regional, and local help. By leveraging these youths’ capability for resilience, we are best able to support them during a time of crisis.

During these challenging times, there are a number of resources that LGBTQ youth can turn to while trying to maintain their connection to their peers. First, many local LGBTQ service organizations have moved their in-person support groups to a virtual or online platform. Check with your local service organization to see what they are offering during these times. National organizations, such as Gender Spectrum, continue to have online groups as well that youth can participate in. Second, many virtual mental health helplines, such as those through the Trevor Project, remain staffed should LGBTQ youth need to access their services (1-866-488-7386, plus text and chat). They can be reached 24/7 to help those whose mental health has been affected during this pandemic. Third, youth can continue to stay connected to their friends through means such as Zoom, FaceTime, or other virtual audiovisual tools. Lastly, some youth have taken to meeting in school parking lots, mall parking lots, etc., and staying at least 6 feet apart so that they can still see their friends in person.

Dr. M. Brett Cooper

While the current times may be challenging, they will pass and we will be able to return to those activities that bring us joy. Do not hesitate to reach out if you need help. As Rainer Maria Rilke once said, “In the difficult, we must have our joys, our happiness, our dreams: There against the depth of this background, they stand out, there for the first time we see how beautiful they are.”
 

Dr. Cooper is assistant professor of pediatrics at University of Texas Southwestern, Dallas, and an adolescent medicine specialist at Children’s Medical Center Dallas. He has no relevant financial disclosures. Dr. Cooper is on Twitter @teendocmbc. Email him at [email protected].

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Oncologists need to advocate for scarce COVID-19 resources: ASCO

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Thu, 12/15/2022 - 17:37

As the COVID-19 pandemic forces rationing of ventilators, intensive care beds, and other resources, oncologists need to advocate for their patients and to support informed decision making as to resource allocation, both at the institutional and regional level, according to new recommendations from the American Society for Clinical Oncology (ASCO).

“There was a lot of concern from the oncology community that if a patient had cancer, they would be arbitrarily excluded from consideration for critical care resources,” said Jonathan M. Marron, MD, chair-elect of ASCO’s Ethics Committee and lead author of the recommendations.

“The hope is that we’ll never have to make any of these decisions ... but the primary reason for putting together these recommendations was that if such decisions have to be made, we hope to inform them,” he told Medscape Medical News.

Marron, who is a pediatric hematologist at Boston Children’s Hospital, says ASCO’s main recommendation is that decisions about the allocation of resources must be separated from bedside clinical care, meaning that clinicians who are caring for individual patients should not also be the ones making the allocation decisions.

“Those dueling responsibilities are a conflict of interest and make that physician unable to make an unbiased decision,” he said.

“It’s also just an unbearable burden to try and do those two things simultaneously,” he added. “It’s an incredible burden to do them individually, but it’s multifold worse to try to do them both simultaneously.”

He said the vital role of oncologists who provide treatment is to offer the kind of personalized information that triage committees need in order to make appropriate decisions.

“They should be asked – maybe even must be asked – to provide the most high-quality evidence-based data about their patients’ diagnosis and prognosis,” Marron commented. “Because oncology is evolving so rapidly, and cancer is so many different diseases, it’s impossible for someone making these decisions to know everything they would need to know about why this patient is likely to survive their cancer and this patient is not.”

He says that during the COVID-19 pandemic, concerns regarding public health transcend the well-being of individual patients and that consideration must be given to providing the maximum benefit to the greatest number of people.

“That makes perfect sense and is the appropriate and laudable goal during a public health emergency like this ... but one of the challenges is that there is this belief that a diagnosis of cancer is uniformly fatal,” Marron said.

“It’s certainly conceivable that it would be a better use of resources to give the last ventilator to a young, otherwise healthy patient rather than a patient with multiply recurrent progressive metastatic cancer,” he continued. “However, we want to ensure that there is at least a discussion where that information is made available, rather than just saying, ‘She’s got cancer. She’s a lost cause.’ ”
 

Cancer patients are doing very well

Concerns about cancer misconceptions have been circulating in the oncology community since the start of the pandemic. “It’s really important that people understand that cancer patients are doing very well nowadays, and even with a diagnosis of cancer, they can potentially live for many years,” Anne Chiang, MD, PhD, from the Smilow Cancer Network, New Haven, Connecticut, told Medscape Medical News in a recent interview.

Thus far, even in hard-hit New York City, fears that cancer patients may not be receiving appropriate care have not materialized, according to Mark Robson, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center (MSKCC). “I would emphasize that cancer patients are ABSOLUTELY getting the care they need, including patients with metastatic disease,” he recently tweeted. “NOONE at @sloan_kettering (or anywhere else) is being ‘triaged’ because of advanced cancer. Period.”

Robson told Medscape Medical News that although MSKCC continues to provide oncology care to patients with cancer, “we are [also] treating them if they develop COVID. ... I am trying to help pivot the institution towards care in this setting.”

He said he agrees with Craig Spencer, MD, MPH, director of global health in emergency medicine at the New York–Presbyterian/Columbia University Medical Center, who recently tweeted, “If you need a ventilator, you get a ventilator. Let’s be clear – this isn’t being ‘rationed.’ ”

Marron emphasized that an important safeguard against uninformed decision making is appropriate planning. For hospitalized patients, this means oncologists who provide treatment should offer information even before it is requested. But he said the “duty to plan” begins long before that.

“Clinicians haven’t always been great at talking about death and long-term outcomes with their patients, but this really cranks up the importance of having those conversations, and having them early, even though it’s incredibly hard. If someone has expressed that they would never want to be put on a ventilator, it’s important now even more so that is made clear,” he said.

He said early responses to the ASCO statement suggest that it has calmed some concerns in the oncology community, “but it still remains to be seen whether individual institutions will take this to heart, because this unto itself cannot enforce anything – it is up to individual institutions. I am hopeful this will get to the people it needs to get to.”

This article first appeared on Medscape.com.

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As the COVID-19 pandemic forces rationing of ventilators, intensive care beds, and other resources, oncologists need to advocate for their patients and to support informed decision making as to resource allocation, both at the institutional and regional level, according to new recommendations from the American Society for Clinical Oncology (ASCO).

“There was a lot of concern from the oncology community that if a patient had cancer, they would be arbitrarily excluded from consideration for critical care resources,” said Jonathan M. Marron, MD, chair-elect of ASCO’s Ethics Committee and lead author of the recommendations.

“The hope is that we’ll never have to make any of these decisions ... but the primary reason for putting together these recommendations was that if such decisions have to be made, we hope to inform them,” he told Medscape Medical News.

Marron, who is a pediatric hematologist at Boston Children’s Hospital, says ASCO’s main recommendation is that decisions about the allocation of resources must be separated from bedside clinical care, meaning that clinicians who are caring for individual patients should not also be the ones making the allocation decisions.

“Those dueling responsibilities are a conflict of interest and make that physician unable to make an unbiased decision,” he said.

“It’s also just an unbearable burden to try and do those two things simultaneously,” he added. “It’s an incredible burden to do them individually, but it’s multifold worse to try to do them both simultaneously.”

He said the vital role of oncologists who provide treatment is to offer the kind of personalized information that triage committees need in order to make appropriate decisions.

“They should be asked – maybe even must be asked – to provide the most high-quality evidence-based data about their patients’ diagnosis and prognosis,” Marron commented. “Because oncology is evolving so rapidly, and cancer is so many different diseases, it’s impossible for someone making these decisions to know everything they would need to know about why this patient is likely to survive their cancer and this patient is not.”

He says that during the COVID-19 pandemic, concerns regarding public health transcend the well-being of individual patients and that consideration must be given to providing the maximum benefit to the greatest number of people.

“That makes perfect sense and is the appropriate and laudable goal during a public health emergency like this ... but one of the challenges is that there is this belief that a diagnosis of cancer is uniformly fatal,” Marron said.

“It’s certainly conceivable that it would be a better use of resources to give the last ventilator to a young, otherwise healthy patient rather than a patient with multiply recurrent progressive metastatic cancer,” he continued. “However, we want to ensure that there is at least a discussion where that information is made available, rather than just saying, ‘She’s got cancer. She’s a lost cause.’ ”
 

Cancer patients are doing very well

Concerns about cancer misconceptions have been circulating in the oncology community since the start of the pandemic. “It’s really important that people understand that cancer patients are doing very well nowadays, and even with a diagnosis of cancer, they can potentially live for many years,” Anne Chiang, MD, PhD, from the Smilow Cancer Network, New Haven, Connecticut, told Medscape Medical News in a recent interview.

Thus far, even in hard-hit New York City, fears that cancer patients may not be receiving appropriate care have not materialized, according to Mark Robson, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center (MSKCC). “I would emphasize that cancer patients are ABSOLUTELY getting the care they need, including patients with metastatic disease,” he recently tweeted. “NOONE at @sloan_kettering (or anywhere else) is being ‘triaged’ because of advanced cancer. Period.”

Robson told Medscape Medical News that although MSKCC continues to provide oncology care to patients with cancer, “we are [also] treating them if they develop COVID. ... I am trying to help pivot the institution towards care in this setting.”

He said he agrees with Craig Spencer, MD, MPH, director of global health in emergency medicine at the New York–Presbyterian/Columbia University Medical Center, who recently tweeted, “If you need a ventilator, you get a ventilator. Let’s be clear – this isn’t being ‘rationed.’ ”

Marron emphasized that an important safeguard against uninformed decision making is appropriate planning. For hospitalized patients, this means oncologists who provide treatment should offer information even before it is requested. But he said the “duty to plan” begins long before that.

“Clinicians haven’t always been great at talking about death and long-term outcomes with their patients, but this really cranks up the importance of having those conversations, and having them early, even though it’s incredibly hard. If someone has expressed that they would never want to be put on a ventilator, it’s important now even more so that is made clear,” he said.

He said early responses to the ASCO statement suggest that it has calmed some concerns in the oncology community, “but it still remains to be seen whether individual institutions will take this to heart, because this unto itself cannot enforce anything – it is up to individual institutions. I am hopeful this will get to the people it needs to get to.”

This article first appeared on Medscape.com.

As the COVID-19 pandemic forces rationing of ventilators, intensive care beds, and other resources, oncologists need to advocate for their patients and to support informed decision making as to resource allocation, both at the institutional and regional level, according to new recommendations from the American Society for Clinical Oncology (ASCO).

“There was a lot of concern from the oncology community that if a patient had cancer, they would be arbitrarily excluded from consideration for critical care resources,” said Jonathan M. Marron, MD, chair-elect of ASCO’s Ethics Committee and lead author of the recommendations.

“The hope is that we’ll never have to make any of these decisions ... but the primary reason for putting together these recommendations was that if such decisions have to be made, we hope to inform them,” he told Medscape Medical News.

Marron, who is a pediatric hematologist at Boston Children’s Hospital, says ASCO’s main recommendation is that decisions about the allocation of resources must be separated from bedside clinical care, meaning that clinicians who are caring for individual patients should not also be the ones making the allocation decisions.

“Those dueling responsibilities are a conflict of interest and make that physician unable to make an unbiased decision,” he said.

“It’s also just an unbearable burden to try and do those two things simultaneously,” he added. “It’s an incredible burden to do them individually, but it’s multifold worse to try to do them both simultaneously.”

He said the vital role of oncologists who provide treatment is to offer the kind of personalized information that triage committees need in order to make appropriate decisions.

“They should be asked – maybe even must be asked – to provide the most high-quality evidence-based data about their patients’ diagnosis and prognosis,” Marron commented. “Because oncology is evolving so rapidly, and cancer is so many different diseases, it’s impossible for someone making these decisions to know everything they would need to know about why this patient is likely to survive their cancer and this patient is not.”

He says that during the COVID-19 pandemic, concerns regarding public health transcend the well-being of individual patients and that consideration must be given to providing the maximum benefit to the greatest number of people.

“That makes perfect sense and is the appropriate and laudable goal during a public health emergency like this ... but one of the challenges is that there is this belief that a diagnosis of cancer is uniformly fatal,” Marron said.

“It’s certainly conceivable that it would be a better use of resources to give the last ventilator to a young, otherwise healthy patient rather than a patient with multiply recurrent progressive metastatic cancer,” he continued. “However, we want to ensure that there is at least a discussion where that information is made available, rather than just saying, ‘She’s got cancer. She’s a lost cause.’ ”
 

Cancer patients are doing very well

Concerns about cancer misconceptions have been circulating in the oncology community since the start of the pandemic. “It’s really important that people understand that cancer patients are doing very well nowadays, and even with a diagnosis of cancer, they can potentially live for many years,” Anne Chiang, MD, PhD, from the Smilow Cancer Network, New Haven, Connecticut, told Medscape Medical News in a recent interview.

Thus far, even in hard-hit New York City, fears that cancer patients may not be receiving appropriate care have not materialized, according to Mark Robson, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center (MSKCC). “I would emphasize that cancer patients are ABSOLUTELY getting the care they need, including patients with metastatic disease,” he recently tweeted. “NOONE at @sloan_kettering (or anywhere else) is being ‘triaged’ because of advanced cancer. Period.”

Robson told Medscape Medical News that although MSKCC continues to provide oncology care to patients with cancer, “we are [also] treating them if they develop COVID. ... I am trying to help pivot the institution towards care in this setting.”

He said he agrees with Craig Spencer, MD, MPH, director of global health in emergency medicine at the New York–Presbyterian/Columbia University Medical Center, who recently tweeted, “If you need a ventilator, you get a ventilator. Let’s be clear – this isn’t being ‘rationed.’ ”

Marron emphasized that an important safeguard against uninformed decision making is appropriate planning. For hospitalized patients, this means oncologists who provide treatment should offer information even before it is requested. But he said the “duty to plan” begins long before that.

“Clinicians haven’t always been great at talking about death and long-term outcomes with their patients, but this really cranks up the importance of having those conversations, and having them early, even though it’s incredibly hard. If someone has expressed that they would never want to be put on a ventilator, it’s important now even more so that is made clear,” he said.

He said early responses to the ASCO statement suggest that it has calmed some concerns in the oncology community, “but it still remains to be seen whether individual institutions will take this to heart, because this unto itself cannot enforce anything – it is up to individual institutions. I am hopeful this will get to the people it needs to get to.”

This article first appeared on Medscape.com.

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Medscape Article

Preschoolers with higher BMI have elevated risk for fracture

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Wed, 04/15/2020 - 11:24

Children with overweight or obese body mass index measures at preschool age were significantly more likely than were normal weight children to suffer upper- and lower-limb fractures before age 15 years, according to data from almost 470,000 children.

Previous studies of adults have shown associations between obesity and fractures, but the impact of higher BMI at preschool age on fracture incidence later in childhood has not been explored, according to Jennifer C.E. Lane, MD, of the University of Oxford (England), and colleagues. “A focused study of the association between preschool obesity and fracture risk offers the opportunity to better understand the impact of obesity in early life,” they wrote in the Journal of Bone and Mineral Research.

The researchers reviewed data from 466,997 children at 296 primary care centers using the Information System for Research in Primary Care, a Spanish national database, for the years 2003-2013. The children were assessed starting at age 4 years and followed until age 15 years or until they left the region or died, or until the study period ended, on Dec. 31, 2016. The average follow-up time was 4.9 years, and 49% of the children were girls. BMI categories were determined via the World Health Organization growth standards for calculating age- and sex-specific BMI z scores, and the categories were defined as underweight (< −2 BMI z score), normal weight (−2 to +2 BMI z score), overweight (> +2 BMI z score), and obese (> +3 BMI z score).

Overall, children with a BMI in the overweight or obese ranges at first assessment were significantly more likely than were their normal weight counterparts to suffer lower-limb fractures (adjusted hazard ratios, 1.42 and 1.74, respectively) and upper-limb fractures (aHRs, 1.10 and 1.19, respectively) during the follow-up period.

The total incidence of fractures during childhood for those in the study who were underweight, normal weight, overweight, or obese, was 9.20%, 10.06%, 11.28%, and 13.05% respectively.

In a secondary analysis, fracture risk varied by anatomic location and reflected previous findings showing an increased risk of distal limb fractures associated with high BMI, the researchers said.

The findings were limited by several factors, including the smaller-than-average proportion of children with overweight or obese BMI measures, the imprecise nature of the BMI z score as a predictor of obesity in children, and the lack of data on sports, medical issues, and general activity levels, the researchers noted.

However, the results were strengthened by the population-based sample and long-term follow-up, and the work “suggests that interventions to treat obesity in early childhood could have benefits for the primary or secondary prevention of fractures later in childhood, especially in the prevention of fractures within the forearm and hand or foot and ankle,” the authors concluded.

The study was supported in part by the NIHR Biomedical Research Centre, Oxford, and La Marató de TV3 Foundation. Dr. Lane disclosed funding from a Versus Arthritis Clinical Research Fellowship but had no financial conflicts to disclose. Some authors reported relationships with numerous pharmaceutical firms.

SOURCE: Lane JCE et al. J Bone Miner Res. 2020 Apr 7. doi: 10.1002/jbmr.3984

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Children with overweight or obese body mass index measures at preschool age were significantly more likely than were normal weight children to suffer upper- and lower-limb fractures before age 15 years, according to data from almost 470,000 children.

Previous studies of adults have shown associations between obesity and fractures, but the impact of higher BMI at preschool age on fracture incidence later in childhood has not been explored, according to Jennifer C.E. Lane, MD, of the University of Oxford (England), and colleagues. “A focused study of the association between preschool obesity and fracture risk offers the opportunity to better understand the impact of obesity in early life,” they wrote in the Journal of Bone and Mineral Research.

The researchers reviewed data from 466,997 children at 296 primary care centers using the Information System for Research in Primary Care, a Spanish national database, for the years 2003-2013. The children were assessed starting at age 4 years and followed until age 15 years or until they left the region or died, or until the study period ended, on Dec. 31, 2016. The average follow-up time was 4.9 years, and 49% of the children were girls. BMI categories were determined via the World Health Organization growth standards for calculating age- and sex-specific BMI z scores, and the categories were defined as underweight (< −2 BMI z score), normal weight (−2 to +2 BMI z score), overweight (> +2 BMI z score), and obese (> +3 BMI z score).

Overall, children with a BMI in the overweight or obese ranges at first assessment were significantly more likely than were their normal weight counterparts to suffer lower-limb fractures (adjusted hazard ratios, 1.42 and 1.74, respectively) and upper-limb fractures (aHRs, 1.10 and 1.19, respectively) during the follow-up period.

The total incidence of fractures during childhood for those in the study who were underweight, normal weight, overweight, or obese, was 9.20%, 10.06%, 11.28%, and 13.05% respectively.

In a secondary analysis, fracture risk varied by anatomic location and reflected previous findings showing an increased risk of distal limb fractures associated with high BMI, the researchers said.

The findings were limited by several factors, including the smaller-than-average proportion of children with overweight or obese BMI measures, the imprecise nature of the BMI z score as a predictor of obesity in children, and the lack of data on sports, medical issues, and general activity levels, the researchers noted.

However, the results were strengthened by the population-based sample and long-term follow-up, and the work “suggests that interventions to treat obesity in early childhood could have benefits for the primary or secondary prevention of fractures later in childhood, especially in the prevention of fractures within the forearm and hand or foot and ankle,” the authors concluded.

The study was supported in part by the NIHR Biomedical Research Centre, Oxford, and La Marató de TV3 Foundation. Dr. Lane disclosed funding from a Versus Arthritis Clinical Research Fellowship but had no financial conflicts to disclose. Some authors reported relationships with numerous pharmaceutical firms.

SOURCE: Lane JCE et al. J Bone Miner Res. 2020 Apr 7. doi: 10.1002/jbmr.3984

Children with overweight or obese body mass index measures at preschool age were significantly more likely than were normal weight children to suffer upper- and lower-limb fractures before age 15 years, according to data from almost 470,000 children.

Previous studies of adults have shown associations between obesity and fractures, but the impact of higher BMI at preschool age on fracture incidence later in childhood has not been explored, according to Jennifer C.E. Lane, MD, of the University of Oxford (England), and colleagues. “A focused study of the association between preschool obesity and fracture risk offers the opportunity to better understand the impact of obesity in early life,” they wrote in the Journal of Bone and Mineral Research.

The researchers reviewed data from 466,997 children at 296 primary care centers using the Information System for Research in Primary Care, a Spanish national database, for the years 2003-2013. The children were assessed starting at age 4 years and followed until age 15 years or until they left the region or died, or until the study period ended, on Dec. 31, 2016. The average follow-up time was 4.9 years, and 49% of the children were girls. BMI categories were determined via the World Health Organization growth standards for calculating age- and sex-specific BMI z scores, and the categories were defined as underweight (< −2 BMI z score), normal weight (−2 to +2 BMI z score), overweight (> +2 BMI z score), and obese (> +3 BMI z score).

Overall, children with a BMI in the overweight or obese ranges at first assessment were significantly more likely than were their normal weight counterparts to suffer lower-limb fractures (adjusted hazard ratios, 1.42 and 1.74, respectively) and upper-limb fractures (aHRs, 1.10 and 1.19, respectively) during the follow-up period.

The total incidence of fractures during childhood for those in the study who were underweight, normal weight, overweight, or obese, was 9.20%, 10.06%, 11.28%, and 13.05% respectively.

In a secondary analysis, fracture risk varied by anatomic location and reflected previous findings showing an increased risk of distal limb fractures associated with high BMI, the researchers said.

The findings were limited by several factors, including the smaller-than-average proportion of children with overweight or obese BMI measures, the imprecise nature of the BMI z score as a predictor of obesity in children, and the lack of data on sports, medical issues, and general activity levels, the researchers noted.

However, the results were strengthened by the population-based sample and long-term follow-up, and the work “suggests that interventions to treat obesity in early childhood could have benefits for the primary or secondary prevention of fractures later in childhood, especially in the prevention of fractures within the forearm and hand or foot and ankle,” the authors concluded.

The study was supported in part by the NIHR Biomedical Research Centre, Oxford, and La Marató de TV3 Foundation. Dr. Lane disclosed funding from a Versus Arthritis Clinical Research Fellowship but had no financial conflicts to disclose. Some authors reported relationships with numerous pharmaceutical firms.

SOURCE: Lane JCE et al. J Bone Miner Res. 2020 Apr 7. doi: 10.1002/jbmr.3984

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COVID-19 pandemic brings unexpected pediatric consequences

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Tue, 02/14/2023 - 13:03

As physicians and advanced practitioners, we have been preparing to face COVID-19 – anticipating increasing volumes of patients with fevers, cough, and shortness of breath, and potential surges in emergency departments (EDs) and primary care offices. Fortunately, while COVID-19 has demonstrated more mild symptoms in pediatric patients, the heightened public health fears and mandated social isolation have created some unforeseen consequences for pediatric patients. This article presents cases encountered over the course of 2 weeks in our ED that shed light on the unexpected ramifications of living in the time of a pandemic. These encounters should remind us as providers to be diligent and thorough in giving guidance to families during a time when face-to-face medicine has become increasingly difficult and limited.

These stories have been modified to protect patient confidentiality.

recep-bg/E+/Getty Images

Case 1

A 2-week-old full-term infant arrived in the ED after having a fever for 48 hours. The patient’s mother reported that she had called the pediatrician yesterday to ask for advice on treating the fever and was instructed to give acetaminophen and bring the infant into the ED for testing.

When we asked mom why she did not bring the infant in yesterday, she stated that the fever went down with acetaminophen, and the baby was drinking well and urinating normally. Mostly, she was afraid to bring the child into the ED given concern for COVID-19; however, when the fever persisted today, she came in. During the work-up, the infant was noted to have focal seizures and was ultimately diagnosed with bacterial meningitis.

Takeaway: Families may be hesitant to follow pediatrician’s advice to seek medical attention at an ED or doctor’s office because of the fear of being exposed to COVID-19.

  • If something is urgent or emergent, be sure to stress the importance to families that the advice is non-negotiable for their child’s health.
  • Attempt to call ahead for patients who might be more vulnerable in waiting rooms or overcrowded hospitals.

Case 2

A 5-month-old baby presented to the ED with new-onset seizures. Immediate bedside blood work performed demonstrated a normal blood glucose, but the baby was profoundly hyponatremic. Upon asking the mother if the baby has had any vomiting, diarrhea, or difficulty tolerating feeds, she says that she has been diluting formula because all the stores were out of formula. Today, she gave the baby plain water because they were completely out of formula.

Takeaway: With economists estimating unemployment rates in the United States at 13% at press time (the worst since the Great Depression), many families may lack resources to purchase necessities.

  • Even if families have the ability to purchase necessities, they may be difficult to find or unavailable (e.g., formula, medications, diapers).
  • Consider reaching out to patients in your practice to ask about their ability to find essentials and with advice on what to do if they run out of formula or diapers, or who they should contact if they cannot refill a medication.
  • Are you in a position to speak with your mayor or local council to ensure there are regulations on the hoarding of essential items?
  • In a time when breast milk or formula is not available for children younger than 1 year of age, what will you recommend for families? There are no current American Academy of Pediatrics’ guidelines.

Case 3

A school-aged girl was helping her mother sanitize the home during the COVID-19 pandemic. She had her gloves on, her commercial antiseptic cleaner ready to go, but it was not spraying. She turned the bottle around to check the nozzle and sprayed herself in the eyes. The family presented to the ED for alkaline burn to her eyes, which required copious irrigation.

Takeaway: Children are spending more time in the house with access to button batteries, choking hazards, and cleaning supplies.

  • Cleaning products can cause chemical burns. These products should not be used by young children.

Dr. Angelica Despain

Case 4

A school-aged boy arrived via emergency medical services (EMS) for altered mental status. He told his father he was feeling dizzy and then lost consciousness. EMS noticed that he had some tonic movements of his lower extremities, and when he arrived in the ED, he had eye deviation and was unresponsive.

Work-up ultimately demonstrated that this patient had a seizure and a dangerously elevated ethanol level from drinking an entire bottle of hand sanitizer. Hand sanitizer may contain high concentrations of ethyl alcohol or isopropyl alcohol, which when ingested can cause intoxication or poisoning.

Takeaway: Many products that we may view as harmless can be toxic if ingested in large amounts.

  • Consider making a list of products that families may have acquired and have around the home during this COVID-19 pandemic and instruct families to make sure dangerous items (e.g., acetaminophen, aspirin, hand sanitizer, lighters, firearms, batteries) are locked up and/or out of reach of children.
  • Make sure families know the Poison Control phone number (800-222-1222).
     

     

Case 5

An adolescent female currently being treated with immunosuppressants arrived from home with fever. Her medical history revealed that the patient’s guardian recently passed away from suspected COVID-19. The patient was tested and is herself found to be positive for COVID-19. The patient is currently being cared for by relatives who also live in the same home. They require extensive education and teaching regarding the patient’s medication regimen, while also dealing with the loss of their loved one and the fear of personal exposure.

Takeaway: Communicate with families – especially those with special health care needs – about issues of guardianship in case a child’s primary caretaker falls ill.

  • Discuss with families about having easily accessible lists of medications and medical conditions.
  • Involve social work and child life specialists to help children and their families deal with life-altering changes and losses suffered during this time, as well as fears related to mortality and exposure.

Case 6

A 3-year-old boy arrived covered in bruises and complaining of stomachache. While the mother denies any known abuse, she states that her significant other has been getting more and more “worked up having to deal with the child’s behavior all day every day.” The preschool the child previously attended has closed due to the pandemic.

Takeaway: Abuse is more common when the parents perceive that there is little community support and when families feel a lack of connection to the community.1 Huang et al. examined the relationship between the economy and nonaccidental trauma, showing a doubling in the rate of nonaccidental head trauma during economic recession.2

  • Allow families to know that they are not alone and that child care is difficult
  • Offer advice on what caretakers can do if they feel alone or at their mental or physical limit.
  • Provide strategies on your practice’s website if a situation at home becomes tense and strained.

Dr. Rachel Hatcliffe

Case 7

An adolescent female arrived to the ED with increased suicidality. She normally follows with her psychiatrist once a month and her therapist once a week. Since the beginning of COVID-19 restrictions, she has been using telemedicine for her therapy visits. While previously doing well, she reports that her suicidal ideations have worsened because of feeling isolated from her friends now that school is out and she is not allowed to see them. Although compliant with her medications, her thoughts have increased to the point where she has to be admitted to inpatient psychiatry.

Takeaway: Anxiety, depression, and suicide may increase in a down economy. After the 2008 global economic crisis, rates of suicide drastically increased.3

  • Recognize the limitations of telemedicine (technology limitations, patient cooperation, etc.)
  • Social isolation may contribute to worsening mental health
  • Know when to advise patients to seek in-person evaluation and care for medical and mental health concerns.

Pediatricians are at the forefront of preventative medicine. Families rely on pediatricians for trustworthy and accurate anticipatory guidance, a need that is only heightened during times of local and national stress. The social isolation, fear, and lack of resources accompanying this pandemic have serious consequences for our families. What can you and your practice do to keep children safe in the time of COVID-19?

Dr. Angelica DesPain is a pediatric emergency medicine fellow at Children’s National Hospital in Washington. Dr. Rachel Hatcliffe is an attending physician at the hospital. Neither physician had any relevant financial disclosures. Email Dr. DesPain and/or Dr. Hatcliffe at [email protected].

References

1. Child Dev. 1978;49:604-16.

2. J Neurosurg Pediatr 2011 Aug;8(2):171-6.

3. BMJ 2013;347:f5239.

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As physicians and advanced practitioners, we have been preparing to face COVID-19 – anticipating increasing volumes of patients with fevers, cough, and shortness of breath, and potential surges in emergency departments (EDs) and primary care offices. Fortunately, while COVID-19 has demonstrated more mild symptoms in pediatric patients, the heightened public health fears and mandated social isolation have created some unforeseen consequences for pediatric patients. This article presents cases encountered over the course of 2 weeks in our ED that shed light on the unexpected ramifications of living in the time of a pandemic. These encounters should remind us as providers to be diligent and thorough in giving guidance to families during a time when face-to-face medicine has become increasingly difficult and limited.

These stories have been modified to protect patient confidentiality.

recep-bg/E+/Getty Images

Case 1

A 2-week-old full-term infant arrived in the ED after having a fever for 48 hours. The patient’s mother reported that she had called the pediatrician yesterday to ask for advice on treating the fever and was instructed to give acetaminophen and bring the infant into the ED for testing.

When we asked mom why she did not bring the infant in yesterday, she stated that the fever went down with acetaminophen, and the baby was drinking well and urinating normally. Mostly, she was afraid to bring the child into the ED given concern for COVID-19; however, when the fever persisted today, she came in. During the work-up, the infant was noted to have focal seizures and was ultimately diagnosed with bacterial meningitis.

Takeaway: Families may be hesitant to follow pediatrician’s advice to seek medical attention at an ED or doctor’s office because of the fear of being exposed to COVID-19.

  • If something is urgent or emergent, be sure to stress the importance to families that the advice is non-negotiable for their child’s health.
  • Attempt to call ahead for patients who might be more vulnerable in waiting rooms or overcrowded hospitals.

Case 2

A 5-month-old baby presented to the ED with new-onset seizures. Immediate bedside blood work performed demonstrated a normal blood glucose, but the baby was profoundly hyponatremic. Upon asking the mother if the baby has had any vomiting, diarrhea, or difficulty tolerating feeds, she says that she has been diluting formula because all the stores were out of formula. Today, she gave the baby plain water because they were completely out of formula.

Takeaway: With economists estimating unemployment rates in the United States at 13% at press time (the worst since the Great Depression), many families may lack resources to purchase necessities.

  • Even if families have the ability to purchase necessities, they may be difficult to find or unavailable (e.g., formula, medications, diapers).
  • Consider reaching out to patients in your practice to ask about their ability to find essentials and with advice on what to do if they run out of formula or diapers, or who they should contact if they cannot refill a medication.
  • Are you in a position to speak with your mayor or local council to ensure there are regulations on the hoarding of essential items?
  • In a time when breast milk or formula is not available for children younger than 1 year of age, what will you recommend for families? There are no current American Academy of Pediatrics’ guidelines.

Case 3

A school-aged girl was helping her mother sanitize the home during the COVID-19 pandemic. She had her gloves on, her commercial antiseptic cleaner ready to go, but it was not spraying. She turned the bottle around to check the nozzle and sprayed herself in the eyes. The family presented to the ED for alkaline burn to her eyes, which required copious irrigation.

Takeaway: Children are spending more time in the house with access to button batteries, choking hazards, and cleaning supplies.

  • Cleaning products can cause chemical burns. These products should not be used by young children.

Dr. Angelica Despain

Case 4

A school-aged boy arrived via emergency medical services (EMS) for altered mental status. He told his father he was feeling dizzy and then lost consciousness. EMS noticed that he had some tonic movements of his lower extremities, and when he arrived in the ED, he had eye deviation and was unresponsive.

Work-up ultimately demonstrated that this patient had a seizure and a dangerously elevated ethanol level from drinking an entire bottle of hand sanitizer. Hand sanitizer may contain high concentrations of ethyl alcohol or isopropyl alcohol, which when ingested can cause intoxication or poisoning.

Takeaway: Many products that we may view as harmless can be toxic if ingested in large amounts.

  • Consider making a list of products that families may have acquired and have around the home during this COVID-19 pandemic and instruct families to make sure dangerous items (e.g., acetaminophen, aspirin, hand sanitizer, lighters, firearms, batteries) are locked up and/or out of reach of children.
  • Make sure families know the Poison Control phone number (800-222-1222).
     

     

Case 5

An adolescent female currently being treated with immunosuppressants arrived from home with fever. Her medical history revealed that the patient’s guardian recently passed away from suspected COVID-19. The patient was tested and is herself found to be positive for COVID-19. The patient is currently being cared for by relatives who also live in the same home. They require extensive education and teaching regarding the patient’s medication regimen, while also dealing with the loss of their loved one and the fear of personal exposure.

Takeaway: Communicate with families – especially those with special health care needs – about issues of guardianship in case a child’s primary caretaker falls ill.

  • Discuss with families about having easily accessible lists of medications and medical conditions.
  • Involve social work and child life specialists to help children and their families deal with life-altering changes and losses suffered during this time, as well as fears related to mortality and exposure.

Case 6

A 3-year-old boy arrived covered in bruises and complaining of stomachache. While the mother denies any known abuse, she states that her significant other has been getting more and more “worked up having to deal with the child’s behavior all day every day.” The preschool the child previously attended has closed due to the pandemic.

Takeaway: Abuse is more common when the parents perceive that there is little community support and when families feel a lack of connection to the community.1 Huang et al. examined the relationship between the economy and nonaccidental trauma, showing a doubling in the rate of nonaccidental head trauma during economic recession.2

  • Allow families to know that they are not alone and that child care is difficult
  • Offer advice on what caretakers can do if they feel alone or at their mental or physical limit.
  • Provide strategies on your practice’s website if a situation at home becomes tense and strained.

Dr. Rachel Hatcliffe

Case 7

An adolescent female arrived to the ED with increased suicidality. She normally follows with her psychiatrist once a month and her therapist once a week. Since the beginning of COVID-19 restrictions, she has been using telemedicine for her therapy visits. While previously doing well, she reports that her suicidal ideations have worsened because of feeling isolated from her friends now that school is out and she is not allowed to see them. Although compliant with her medications, her thoughts have increased to the point where she has to be admitted to inpatient psychiatry.

Takeaway: Anxiety, depression, and suicide may increase in a down economy. After the 2008 global economic crisis, rates of suicide drastically increased.3

  • Recognize the limitations of telemedicine (technology limitations, patient cooperation, etc.)
  • Social isolation may contribute to worsening mental health
  • Know when to advise patients to seek in-person evaluation and care for medical and mental health concerns.

Pediatricians are at the forefront of preventative medicine. Families rely on pediatricians for trustworthy and accurate anticipatory guidance, a need that is only heightened during times of local and national stress. The social isolation, fear, and lack of resources accompanying this pandemic have serious consequences for our families. What can you and your practice do to keep children safe in the time of COVID-19?

Dr. Angelica DesPain is a pediatric emergency medicine fellow at Children’s National Hospital in Washington. Dr. Rachel Hatcliffe is an attending physician at the hospital. Neither physician had any relevant financial disclosures. Email Dr. DesPain and/or Dr. Hatcliffe at [email protected].

References

1. Child Dev. 1978;49:604-16.

2. J Neurosurg Pediatr 2011 Aug;8(2):171-6.

3. BMJ 2013;347:f5239.

As physicians and advanced practitioners, we have been preparing to face COVID-19 – anticipating increasing volumes of patients with fevers, cough, and shortness of breath, and potential surges in emergency departments (EDs) and primary care offices. Fortunately, while COVID-19 has demonstrated more mild symptoms in pediatric patients, the heightened public health fears and mandated social isolation have created some unforeseen consequences for pediatric patients. This article presents cases encountered over the course of 2 weeks in our ED that shed light on the unexpected ramifications of living in the time of a pandemic. These encounters should remind us as providers to be diligent and thorough in giving guidance to families during a time when face-to-face medicine has become increasingly difficult and limited.

These stories have been modified to protect patient confidentiality.

recep-bg/E+/Getty Images

Case 1

A 2-week-old full-term infant arrived in the ED after having a fever for 48 hours. The patient’s mother reported that she had called the pediatrician yesterday to ask for advice on treating the fever and was instructed to give acetaminophen and bring the infant into the ED for testing.

When we asked mom why she did not bring the infant in yesterday, she stated that the fever went down with acetaminophen, and the baby was drinking well and urinating normally. Mostly, she was afraid to bring the child into the ED given concern for COVID-19; however, when the fever persisted today, she came in. During the work-up, the infant was noted to have focal seizures and was ultimately diagnosed with bacterial meningitis.

Takeaway: Families may be hesitant to follow pediatrician’s advice to seek medical attention at an ED or doctor’s office because of the fear of being exposed to COVID-19.

  • If something is urgent or emergent, be sure to stress the importance to families that the advice is non-negotiable for their child’s health.
  • Attempt to call ahead for patients who might be more vulnerable in waiting rooms or overcrowded hospitals.

Case 2

A 5-month-old baby presented to the ED with new-onset seizures. Immediate bedside blood work performed demonstrated a normal blood glucose, but the baby was profoundly hyponatremic. Upon asking the mother if the baby has had any vomiting, diarrhea, or difficulty tolerating feeds, she says that she has been diluting formula because all the stores were out of formula. Today, she gave the baby plain water because they were completely out of formula.

Takeaway: With economists estimating unemployment rates in the United States at 13% at press time (the worst since the Great Depression), many families may lack resources to purchase necessities.

  • Even if families have the ability to purchase necessities, they may be difficult to find or unavailable (e.g., formula, medications, diapers).
  • Consider reaching out to patients in your practice to ask about their ability to find essentials and with advice on what to do if they run out of formula or diapers, or who they should contact if they cannot refill a medication.
  • Are you in a position to speak with your mayor or local council to ensure there are regulations on the hoarding of essential items?
  • In a time when breast milk or formula is not available for children younger than 1 year of age, what will you recommend for families? There are no current American Academy of Pediatrics’ guidelines.

Case 3

A school-aged girl was helping her mother sanitize the home during the COVID-19 pandemic. She had her gloves on, her commercial antiseptic cleaner ready to go, but it was not spraying. She turned the bottle around to check the nozzle and sprayed herself in the eyes. The family presented to the ED for alkaline burn to her eyes, which required copious irrigation.

Takeaway: Children are spending more time in the house with access to button batteries, choking hazards, and cleaning supplies.

  • Cleaning products can cause chemical burns. These products should not be used by young children.

Dr. Angelica Despain

Case 4

A school-aged boy arrived via emergency medical services (EMS) for altered mental status. He told his father he was feeling dizzy and then lost consciousness. EMS noticed that he had some tonic movements of his lower extremities, and when he arrived in the ED, he had eye deviation and was unresponsive.

Work-up ultimately demonstrated that this patient had a seizure and a dangerously elevated ethanol level from drinking an entire bottle of hand sanitizer. Hand sanitizer may contain high concentrations of ethyl alcohol or isopropyl alcohol, which when ingested can cause intoxication or poisoning.

Takeaway: Many products that we may view as harmless can be toxic if ingested in large amounts.

  • Consider making a list of products that families may have acquired and have around the home during this COVID-19 pandemic and instruct families to make sure dangerous items (e.g., acetaminophen, aspirin, hand sanitizer, lighters, firearms, batteries) are locked up and/or out of reach of children.
  • Make sure families know the Poison Control phone number (800-222-1222).
     

     

Case 5

An adolescent female currently being treated with immunosuppressants arrived from home with fever. Her medical history revealed that the patient’s guardian recently passed away from suspected COVID-19. The patient was tested and is herself found to be positive for COVID-19. The patient is currently being cared for by relatives who also live in the same home. They require extensive education and teaching regarding the patient’s medication regimen, while also dealing with the loss of their loved one and the fear of personal exposure.

Takeaway: Communicate with families – especially those with special health care needs – about issues of guardianship in case a child’s primary caretaker falls ill.

  • Discuss with families about having easily accessible lists of medications and medical conditions.
  • Involve social work and child life specialists to help children and their families deal with life-altering changes and losses suffered during this time, as well as fears related to mortality and exposure.

Case 6

A 3-year-old boy arrived covered in bruises and complaining of stomachache. While the mother denies any known abuse, she states that her significant other has been getting more and more “worked up having to deal with the child’s behavior all day every day.” The preschool the child previously attended has closed due to the pandemic.

Takeaway: Abuse is more common when the parents perceive that there is little community support and when families feel a lack of connection to the community.1 Huang et al. examined the relationship between the economy and nonaccidental trauma, showing a doubling in the rate of nonaccidental head trauma during economic recession.2

  • Allow families to know that they are not alone and that child care is difficult
  • Offer advice on what caretakers can do if they feel alone or at their mental or physical limit.
  • Provide strategies on your practice’s website if a situation at home becomes tense and strained.

Dr. Rachel Hatcliffe

Case 7

An adolescent female arrived to the ED with increased suicidality. She normally follows with her psychiatrist once a month and her therapist once a week. Since the beginning of COVID-19 restrictions, she has been using telemedicine for her therapy visits. While previously doing well, she reports that her suicidal ideations have worsened because of feeling isolated from her friends now that school is out and she is not allowed to see them. Although compliant with her medications, her thoughts have increased to the point where she has to be admitted to inpatient psychiatry.

Takeaway: Anxiety, depression, and suicide may increase in a down economy. After the 2008 global economic crisis, rates of suicide drastically increased.3

  • Recognize the limitations of telemedicine (technology limitations, patient cooperation, etc.)
  • Social isolation may contribute to worsening mental health
  • Know when to advise patients to seek in-person evaluation and care for medical and mental health concerns.

Pediatricians are at the forefront of preventative medicine. Families rely on pediatricians for trustworthy and accurate anticipatory guidance, a need that is only heightened during times of local and national stress. The social isolation, fear, and lack of resources accompanying this pandemic have serious consequences for our families. What can you and your practice do to keep children safe in the time of COVID-19?

Dr. Angelica DesPain is a pediatric emergency medicine fellow at Children’s National Hospital in Washington. Dr. Rachel Hatcliffe is an attending physician at the hospital. Neither physician had any relevant financial disclosures. Email Dr. DesPain and/or Dr. Hatcliffe at [email protected].

References

1. Child Dev. 1978;49:604-16.

2. J Neurosurg Pediatr 2011 Aug;8(2):171-6.

3. BMJ 2013;347:f5239.

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Parents would avoid cognitive effects in children over better chance of cancer cure

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Mon, 06/08/2020 - 16:30

 

Parents of children with cancer and their physicians are willing to opt for less effective treatment to avoid risk of neurocognitive disorders later in life, according to results from a new study.

While some 80% of children with cancer survive to adulthood, most will experience chronic health conditions related to treatment, and many pediatric oncologists will adjust treatment strategies to lessen the likelihood of later effects. For their research published in Pediatrics, Katie A. Greenzang, MD, of the Dana-Farber Cancer Institute in Boston and colleagues aimed to learn how both parents and physicians weighed the risks and benefits.

In a survey of 95 parents and 41 physicians at Dana-Farber, Dr. Greenzang and colleagues proposed hypothetical scenarios involving five common late effects of childhood cancer treatment: neurocognitive impairment, infertility, cardiac toxicity, second malignancies, and impaired development. The parents surveyed, all of whom had children diagnosed with cancer within the previous year, were asked to make decisions as though on behalf of their children, while physicians were asked to do so as on behalf of a newly diagnosed patient.

Avoiding severe cognitive impairment mattered more than an increased chance of a cure to both parents and physicians. Neurocognitive impairment was the risk that most affected treatment choices, with parents more likely to choose a treatment associated with no or mild neurocognitive impairment, compared with one that caused severe impairment (odds ratio, 2.83 for no impairment vs. severe impairment; P less than .001), which was also the case with physicians (OR, 4.01; P less than .001).

Parents would accept an 18% chance of another malignancy for a 10% greater chance of a cure, while physicians accepted a 15% risk. Parents were willing to tolerate a 31% risk of cardiac toxicity in exchange for the better chance of a cure, while physicians accepted a 22% higher risk.

The results, the researchers wrote in their analysis, offered a window into the level and type of later-life risks that parents can accept when making choices about cancer treatment and where those choices appear to differ from those made by physicians.

“Oncologists increasingly design clinical trials [for children with cancer] with dual goals of optimizing cure while minimizing late effects,” Dr. Greenzang and colleagues wrote. “In doing so, they make judgments about the relative value of short- and long-term outcomes in patients’ lives. Yet oncologists have largely done so in the absence of information about how parents prioritize avoidance of late effects relative to the chance of cure.”

In an editorial comment accompanying the study, Tara A. Brinkman, PhD, of St. Jude Children’s Research Hospital in Memphis, Tenn., and James G. Gurney, PhD, of the University of Memphis noted that the findings “may have narrow clinical application” because many of the late-life effects presented in the survey will not present singly but will co-occur in survivors of childhood cancer. “Hypothetical scenarios that do not depict the full burden of late effects may not reflect a realistic understanding of the complexity of decisions to be made in a real-life diagnostic setting,” they said.

But the editorialists praised the study for revealing that many parents did not accurately perceive the true likelihood of late effects for their children. Parents in the survey tended to underestimate the risk for all the late effects besides infertility, which revealed a need for “better education about late effects early in the diagnostic and treatment process,” Dr. Brinkman and Dr. Gurney said, emphasizing that discussions should begin at diagnosis and continue beyond treatment “and long into the maintenance and surveillance period after the declaration of cure.”

Dr. Greenzang and colleagues’ study was funded by the National Institutes of Health and an Agency for Healthcare Research and Quality grant. The investigators declared no relevant financial disclosures. Dr. Brinkman and Dr. Gurney reported no relevant financial disclosures.

SOURCE: Greenzang et al. Pediatrics. 2020;145(5):e20193552.

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Parents of children with cancer and their physicians are willing to opt for less effective treatment to avoid risk of neurocognitive disorders later in life, according to results from a new study.

While some 80% of children with cancer survive to adulthood, most will experience chronic health conditions related to treatment, and many pediatric oncologists will adjust treatment strategies to lessen the likelihood of later effects. For their research published in Pediatrics, Katie A. Greenzang, MD, of the Dana-Farber Cancer Institute in Boston and colleagues aimed to learn how both parents and physicians weighed the risks and benefits.

In a survey of 95 parents and 41 physicians at Dana-Farber, Dr. Greenzang and colleagues proposed hypothetical scenarios involving five common late effects of childhood cancer treatment: neurocognitive impairment, infertility, cardiac toxicity, second malignancies, and impaired development. The parents surveyed, all of whom had children diagnosed with cancer within the previous year, were asked to make decisions as though on behalf of their children, while physicians were asked to do so as on behalf of a newly diagnosed patient.

Avoiding severe cognitive impairment mattered more than an increased chance of a cure to both parents and physicians. Neurocognitive impairment was the risk that most affected treatment choices, with parents more likely to choose a treatment associated with no or mild neurocognitive impairment, compared with one that caused severe impairment (odds ratio, 2.83 for no impairment vs. severe impairment; P less than .001), which was also the case with physicians (OR, 4.01; P less than .001).

Parents would accept an 18% chance of another malignancy for a 10% greater chance of a cure, while physicians accepted a 15% risk. Parents were willing to tolerate a 31% risk of cardiac toxicity in exchange for the better chance of a cure, while physicians accepted a 22% higher risk.

The results, the researchers wrote in their analysis, offered a window into the level and type of later-life risks that parents can accept when making choices about cancer treatment and where those choices appear to differ from those made by physicians.

“Oncologists increasingly design clinical trials [for children with cancer] with dual goals of optimizing cure while minimizing late effects,” Dr. Greenzang and colleagues wrote. “In doing so, they make judgments about the relative value of short- and long-term outcomes in patients’ lives. Yet oncologists have largely done so in the absence of information about how parents prioritize avoidance of late effects relative to the chance of cure.”

In an editorial comment accompanying the study, Tara A. Brinkman, PhD, of St. Jude Children’s Research Hospital in Memphis, Tenn., and James G. Gurney, PhD, of the University of Memphis noted that the findings “may have narrow clinical application” because many of the late-life effects presented in the survey will not present singly but will co-occur in survivors of childhood cancer. “Hypothetical scenarios that do not depict the full burden of late effects may not reflect a realistic understanding of the complexity of decisions to be made in a real-life diagnostic setting,” they said.

But the editorialists praised the study for revealing that many parents did not accurately perceive the true likelihood of late effects for their children. Parents in the survey tended to underestimate the risk for all the late effects besides infertility, which revealed a need for “better education about late effects early in the diagnostic and treatment process,” Dr. Brinkman and Dr. Gurney said, emphasizing that discussions should begin at diagnosis and continue beyond treatment “and long into the maintenance and surveillance period after the declaration of cure.”

Dr. Greenzang and colleagues’ study was funded by the National Institutes of Health and an Agency for Healthcare Research and Quality grant. The investigators declared no relevant financial disclosures. Dr. Brinkman and Dr. Gurney reported no relevant financial disclosures.

SOURCE: Greenzang et al. Pediatrics. 2020;145(5):e20193552.

 

Parents of children with cancer and their physicians are willing to opt for less effective treatment to avoid risk of neurocognitive disorders later in life, according to results from a new study.

While some 80% of children with cancer survive to adulthood, most will experience chronic health conditions related to treatment, and many pediatric oncologists will adjust treatment strategies to lessen the likelihood of later effects. For their research published in Pediatrics, Katie A. Greenzang, MD, of the Dana-Farber Cancer Institute in Boston and colleagues aimed to learn how both parents and physicians weighed the risks and benefits.

In a survey of 95 parents and 41 physicians at Dana-Farber, Dr. Greenzang and colleagues proposed hypothetical scenarios involving five common late effects of childhood cancer treatment: neurocognitive impairment, infertility, cardiac toxicity, second malignancies, and impaired development. The parents surveyed, all of whom had children diagnosed with cancer within the previous year, were asked to make decisions as though on behalf of their children, while physicians were asked to do so as on behalf of a newly diagnosed patient.

Avoiding severe cognitive impairment mattered more than an increased chance of a cure to both parents and physicians. Neurocognitive impairment was the risk that most affected treatment choices, with parents more likely to choose a treatment associated with no or mild neurocognitive impairment, compared with one that caused severe impairment (odds ratio, 2.83 for no impairment vs. severe impairment; P less than .001), which was also the case with physicians (OR, 4.01; P less than .001).

Parents would accept an 18% chance of another malignancy for a 10% greater chance of a cure, while physicians accepted a 15% risk. Parents were willing to tolerate a 31% risk of cardiac toxicity in exchange for the better chance of a cure, while physicians accepted a 22% higher risk.

The results, the researchers wrote in their analysis, offered a window into the level and type of later-life risks that parents can accept when making choices about cancer treatment and where those choices appear to differ from those made by physicians.

“Oncologists increasingly design clinical trials [for children with cancer] with dual goals of optimizing cure while minimizing late effects,” Dr. Greenzang and colleagues wrote. “In doing so, they make judgments about the relative value of short- and long-term outcomes in patients’ lives. Yet oncologists have largely done so in the absence of information about how parents prioritize avoidance of late effects relative to the chance of cure.”

In an editorial comment accompanying the study, Tara A. Brinkman, PhD, of St. Jude Children’s Research Hospital in Memphis, Tenn., and James G. Gurney, PhD, of the University of Memphis noted that the findings “may have narrow clinical application” because many of the late-life effects presented in the survey will not present singly but will co-occur in survivors of childhood cancer. “Hypothetical scenarios that do not depict the full burden of late effects may not reflect a realistic understanding of the complexity of decisions to be made in a real-life diagnostic setting,” they said.

But the editorialists praised the study for revealing that many parents did not accurately perceive the true likelihood of late effects for their children. Parents in the survey tended to underestimate the risk for all the late effects besides infertility, which revealed a need for “better education about late effects early in the diagnostic and treatment process,” Dr. Brinkman and Dr. Gurney said, emphasizing that discussions should begin at diagnosis and continue beyond treatment “and long into the maintenance and surveillance period after the declaration of cure.”

Dr. Greenzang and colleagues’ study was funded by the National Institutes of Health and an Agency for Healthcare Research and Quality grant. The investigators declared no relevant financial disclosures. Dr. Brinkman and Dr. Gurney reported no relevant financial disclosures.

SOURCE: Greenzang et al. Pediatrics. 2020;145(5):e20193552.

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Expert discusses her approach to using systemic agents in children and adolescents with severe skin disease

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Wed, 04/22/2020 - 10:25

 

In the clinical opinion of Kaiane A. Habeshian, MD, dermatologists shouldn’t think twice about using systemic agents in pediatric patients with severe dermatologic diseases.

Dr. Kaiane Habeshian

“By the time patients come to us pediatric dermatologists, they have been treated by multiple other doctors, and are frustrated,” Dr. Habeshian said during a virtual meeting held by the George Washington University department of dermatology. “Childhood eczema affects not only patients, but the whole family. For instance, if the child is not sleeping due to itch, their parents are probably not sleeping, either. Parental well-being and workplace productivity are affected, and finances are affected.”

Only a limited number of medications are Food and Drug Administration approved in pediatric patients for common dermatologic indications. These include dupilumab for atopic dermatitis (AD), etanercept and ustekinumab for psoriasis, adalimumab for hidradenitis suppurativa, and omalizumab for chronic idiopathic urticaria. “The approvals are mainly for the adolescent age group, except for etanercept, which is approved at the age of 4 years and above,” said Dr. Habeshian of the department of dermatology at Children’s National Hospital, Washington.

In clinical practice, off-label, nontargeted systemic agents are used mostly commonly in pediatric skin disease, particularly methotrexate and cyclosporine for both AD and psoriasis. “These agents are approved for other indications in infants and have many years of data to describe their use in these other conditions, although comprehensive randomized, controlled studies in pediatric patients for dermatologic conditions are lacking,” she said. “What’s in clinical trials for pediatric skin disease? There are multiple ongoing clinical studies of biologic agents in pediatric dermatology, mainly for psoriasis and also for dupilumab in younger patients, as well as a JAK [Janus kinase] inhibitor for alopecia areata.”

Dr. Habeshian noted that while some clinicians may have a knee-jerk reaction to go straight to dupilumab, which was approved in March of 2019 for adolescents with moderate to severe AD, that agent is not currently approved for the most sizable pediatric population with this condition – those under 12 years of age. “FDA approval is important in part because it helps establish safety and optimal dosing, which is often different and weight based in children,” she said. “In addition, FDA approval significantly impacts access to these newer, more expensive medications.”



Speaking from her experience treating patients in the DC/Maryland/Virginia area, Medicaid has consistently denied dupilumab coverage in children under age 12, “even in severe eczema that is suboptimally controlled with both methotrexate and cyclosporine, despite multiple levels of appeal, including letters of medical necessity and peer-to-peer evaluation,” she said. “This can vary across the country among states. However, dupilumab has been completely unattainable in those under 12 in our practice.”

When dupilumab is approved, most insurers first require step therapy with off-label agents for at least 3 months, as well as documented failure of topical corticosteroids, calcineurin inhibitors, crisaborole ointment, and phototherapy (if done). “It’s important to document an objective measure of severity at the very first visit with the SCORAD [scoring atopic dermatitis] or IGA [investigator global assessment],” she said. “Often, that is required if there is any hope for coverage. A familiarity with these requirements is often acquired through trial and error, and may change over time. This can lead to many delays in getting patients these treatments.” Additional information to consider documenting include the disease impact on quality of life, sleep, and school attendance, any hospitalizations for AD flares or secondary infections, and comorbid disease such as asthma.

Meanwhile, dupilumab is under priority review for children aged 6-11 years with moderate to severe AD, with a target action date of May 26, 2020. “It’s unclear how recent events [with the COVID-19 pandemic] will impact that, but there is something to look forward to, and give us hope for our patients,” she said.

Typically, Dr. Habeshian starts her pediatric patients with moderate to severe AD on methotrexate, which she characterized as “a time-tested, affordable, and very accessible option. It requires a little bit less monitoring upon initiation than cyclosporine, and it can be used for longer periods of time before weaning is required.”

In cases when disease is severe or intolerable, she often starts methotrexate and cyclosporine together. “I will usually start right at the 0.5 mg/kg per week rather than titrating up, because this maximizes the response and reduces the amount of blood work needed, unless they have an underlying risk factor for GI distress, or obese patients who are at increased risk for LFT [liver function test] elevation,” she noted. “Patients will note some improvement as early as 2 weeks on methotrexate, but I counsel them to expect 4-6 weeks for maximum improvement. We do not do a test dose of methotrexate at our institution. If there is a slight LFT elevation upon checking labs, ensure that the labs were done at least 4-6 days after the dose, because transient LFT dose elevations are common in 3-4 days.”

GI distress is by far the most common clinical side effect of methotrexate. “We do not do much intramuscular injection of methotrexate, so we rely a lot on folic acid, which reduces the risk of GI distress and elevated LFTs without reducing efficacy,” she said. “We recommend daily folic acid for simplicity, or folic acid 6 days per week.”

Dr. Habeshian said that many pediatric patients can swallow the 2.5 mg tablets of methotrexate “because they’re quite small, and most patients don’t have a problem taking the methotrexate when it’s crushed and mixed with food such as apple sauce or pudding. However, it is critical to discuss proper handling to avoid lung toxicity.” This includes placing the pills in a plastic bag prior to crushing, avoiding inhalation, and avoiding handling near pregnant women and pets, she noted. In addition, she said, “in adolescents, we need to consider the teratogenicity of methotrexate, as well as the possibility of alcohol consumption worsening liver complications. If I prescribe methotrexate in patients of childbearing age, I will counsel them extensively regarding the risk of fetal death and birth defects. If needed, I will start combined oral contraceptives. Ultimately, I’m willing to use these medicines safely, with significant counseling.”

When addressing the risk of methotrexate overdose, she reminds parents to store the medication in a safe place, out of the reach of children. “Patients are at the highest risk of overdose complications if they are given the medication multiple days in a row rather than a one-time, single high dose,” she said. “The literature suggests that one-time overdoses of methotrexate – deliberate or accidental – are unlikely to cause acute bone marrow suppression or hepatitis. This is probably because GI absorption of methotrexate reaches a saturation point, and the kidneys passively and actively excrete the medication at quite a rapid pace so that the methotrexate is often undetectable in the blood at 24 hours post ingestion. I do prescribe a limited supply to help prevent accidental overdoses. In part, this is because if the patient is receiving the medication daily, they’ll run out very quickly, and it will come the family’s attention and to your attention that it’s not being administered correctly.”

Another treatment option to consider for cases of moderate to severe AD is cyclosporine, “which works extremely quickly,” Dr. Habeshian said. “It is very good to rapidly control severe disease while methotrexate or other modes of treatment kick in. It’s best used as a bridge, given the risks of renal damage with long-term use. I like to limit its use to 6 months.”

Cyclosporine comes in two formulations: a modified oral formulation and a nonmodified oral formulation. The modified formulation is absorbed much better than the unmodified formulation. “We start at 5 mg/kg divided b.i.d., which is higher than the recommended dosing for dermatologic conditions in adults,” she said. “This is because children may not absorb the medication as well and may have improved renal clearance. Higher doses may be needed to achieve the desirable effect. In contrast to methotrexate, cyclosporine is available in a capsule, so it cannot be crushed.”

The choice of medication for psoriasis is generally guided by insurance step therapy requirements and is limited in the pediatric population (new guidelines on the care of pediatric psoriasis patients can be found at J Am Acad Dermatol 2020; 82[1]:161-201). In Dr. Habeshian’s experience, methotrexate is the go-to for most patients. “It treats concomitant psoriatic arthritis and can be used as monotherapy or combined with biologics,” she said. “Cyclosporine is useful for erythrodermic, pustular, and severe plaque psoriasis as a bridge. Other options include etanercept weekly in patients age 4-17 years and ustekinumab weekly dosing in patients age 12-17 years.”

Acitretin can be a useful adjunct for younger patients who are unable to obtain biologic agents. “It is most useful in widespread guttate and pustular psoriasis, but can be used be used in plaque psoriasis as well,” Dr. Habeshian said. “It is usually dosed as 0.1-1 mg/kg per day. Improvement in plaque disease is generally seen in 2-3 months of therapy, so it has a slow onset, whereas improvement in pustular psoriasis is seen within 3 weeks.” The most common side effects are dry skin and mucous membranes, while an important consideration is the potential for inducing premature bone toxicity. “It is thought that the risk is relatively low if the daily and total doses are kept low,” she said. “There is no consensus for monitoring bone health. Some clinicians will consider radiography periodically.”

Dr. Habeshian concluded her talk by noting that clinicians should give vaccinations/boosters before starting systemic therapy in young children. “The safety and efficacy of live immunization administered to children on biologics is not known,” she said. “Therefore, if live vaccination is needed, it’s generally recommended to postpone initiating biologic treatment.” The MMR and varicella vaccines are given at 12-15 months of life, with a booster at 4-6 years. The varicella vaccine should be given at least 6 weeks before starting immunosuppressive therapy, and the MMR vaccine at least 4 weeks before starting therapy.

The virtual meeting included presentations that had been slated for the annual meeting of the American Academy of Dermatology, which was canceled because of the COVID-19 pandemic. Dr. Habeshian reported having no disclosures.

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In the clinical opinion of Kaiane A. Habeshian, MD, dermatologists shouldn’t think twice about using systemic agents in pediatric patients with severe dermatologic diseases.

Dr. Kaiane Habeshian

“By the time patients come to us pediatric dermatologists, they have been treated by multiple other doctors, and are frustrated,” Dr. Habeshian said during a virtual meeting held by the George Washington University department of dermatology. “Childhood eczema affects not only patients, but the whole family. For instance, if the child is not sleeping due to itch, their parents are probably not sleeping, either. Parental well-being and workplace productivity are affected, and finances are affected.”

Only a limited number of medications are Food and Drug Administration approved in pediatric patients for common dermatologic indications. These include dupilumab for atopic dermatitis (AD), etanercept and ustekinumab for psoriasis, adalimumab for hidradenitis suppurativa, and omalizumab for chronic idiopathic urticaria. “The approvals are mainly for the adolescent age group, except for etanercept, which is approved at the age of 4 years and above,” said Dr. Habeshian of the department of dermatology at Children’s National Hospital, Washington.

In clinical practice, off-label, nontargeted systemic agents are used mostly commonly in pediatric skin disease, particularly methotrexate and cyclosporine for both AD and psoriasis. “These agents are approved for other indications in infants and have many years of data to describe their use in these other conditions, although comprehensive randomized, controlled studies in pediatric patients for dermatologic conditions are lacking,” she said. “What’s in clinical trials for pediatric skin disease? There are multiple ongoing clinical studies of biologic agents in pediatric dermatology, mainly for psoriasis and also for dupilumab in younger patients, as well as a JAK [Janus kinase] inhibitor for alopecia areata.”

Dr. Habeshian noted that while some clinicians may have a knee-jerk reaction to go straight to dupilumab, which was approved in March of 2019 for adolescents with moderate to severe AD, that agent is not currently approved for the most sizable pediatric population with this condition – those under 12 years of age. “FDA approval is important in part because it helps establish safety and optimal dosing, which is often different and weight based in children,” she said. “In addition, FDA approval significantly impacts access to these newer, more expensive medications.”



Speaking from her experience treating patients in the DC/Maryland/Virginia area, Medicaid has consistently denied dupilumab coverage in children under age 12, “even in severe eczema that is suboptimally controlled with both methotrexate and cyclosporine, despite multiple levels of appeal, including letters of medical necessity and peer-to-peer evaluation,” she said. “This can vary across the country among states. However, dupilumab has been completely unattainable in those under 12 in our practice.”

When dupilumab is approved, most insurers first require step therapy with off-label agents for at least 3 months, as well as documented failure of topical corticosteroids, calcineurin inhibitors, crisaborole ointment, and phototherapy (if done). “It’s important to document an objective measure of severity at the very first visit with the SCORAD [scoring atopic dermatitis] or IGA [investigator global assessment],” she said. “Often, that is required if there is any hope for coverage. A familiarity with these requirements is often acquired through trial and error, and may change over time. This can lead to many delays in getting patients these treatments.” Additional information to consider documenting include the disease impact on quality of life, sleep, and school attendance, any hospitalizations for AD flares or secondary infections, and comorbid disease such as asthma.

Meanwhile, dupilumab is under priority review for children aged 6-11 years with moderate to severe AD, with a target action date of May 26, 2020. “It’s unclear how recent events [with the COVID-19 pandemic] will impact that, but there is something to look forward to, and give us hope for our patients,” she said.

Typically, Dr. Habeshian starts her pediatric patients with moderate to severe AD on methotrexate, which she characterized as “a time-tested, affordable, and very accessible option. It requires a little bit less monitoring upon initiation than cyclosporine, and it can be used for longer periods of time before weaning is required.”

In cases when disease is severe or intolerable, she often starts methotrexate and cyclosporine together. “I will usually start right at the 0.5 mg/kg per week rather than titrating up, because this maximizes the response and reduces the amount of blood work needed, unless they have an underlying risk factor for GI distress, or obese patients who are at increased risk for LFT [liver function test] elevation,” she noted. “Patients will note some improvement as early as 2 weeks on methotrexate, but I counsel them to expect 4-6 weeks for maximum improvement. We do not do a test dose of methotrexate at our institution. If there is a slight LFT elevation upon checking labs, ensure that the labs were done at least 4-6 days after the dose, because transient LFT dose elevations are common in 3-4 days.”

GI distress is by far the most common clinical side effect of methotrexate. “We do not do much intramuscular injection of methotrexate, so we rely a lot on folic acid, which reduces the risk of GI distress and elevated LFTs without reducing efficacy,” she said. “We recommend daily folic acid for simplicity, or folic acid 6 days per week.”

Dr. Habeshian said that many pediatric patients can swallow the 2.5 mg tablets of methotrexate “because they’re quite small, and most patients don’t have a problem taking the methotrexate when it’s crushed and mixed with food such as apple sauce or pudding. However, it is critical to discuss proper handling to avoid lung toxicity.” This includes placing the pills in a plastic bag prior to crushing, avoiding inhalation, and avoiding handling near pregnant women and pets, she noted. In addition, she said, “in adolescents, we need to consider the teratogenicity of methotrexate, as well as the possibility of alcohol consumption worsening liver complications. If I prescribe methotrexate in patients of childbearing age, I will counsel them extensively regarding the risk of fetal death and birth defects. If needed, I will start combined oral contraceptives. Ultimately, I’m willing to use these medicines safely, with significant counseling.”

When addressing the risk of methotrexate overdose, she reminds parents to store the medication in a safe place, out of the reach of children. “Patients are at the highest risk of overdose complications if they are given the medication multiple days in a row rather than a one-time, single high dose,” she said. “The literature suggests that one-time overdoses of methotrexate – deliberate or accidental – are unlikely to cause acute bone marrow suppression or hepatitis. This is probably because GI absorption of methotrexate reaches a saturation point, and the kidneys passively and actively excrete the medication at quite a rapid pace so that the methotrexate is often undetectable in the blood at 24 hours post ingestion. I do prescribe a limited supply to help prevent accidental overdoses. In part, this is because if the patient is receiving the medication daily, they’ll run out very quickly, and it will come the family’s attention and to your attention that it’s not being administered correctly.”

Another treatment option to consider for cases of moderate to severe AD is cyclosporine, “which works extremely quickly,” Dr. Habeshian said. “It is very good to rapidly control severe disease while methotrexate or other modes of treatment kick in. It’s best used as a bridge, given the risks of renal damage with long-term use. I like to limit its use to 6 months.”

Cyclosporine comes in two formulations: a modified oral formulation and a nonmodified oral formulation. The modified formulation is absorbed much better than the unmodified formulation. “We start at 5 mg/kg divided b.i.d., which is higher than the recommended dosing for dermatologic conditions in adults,” she said. “This is because children may not absorb the medication as well and may have improved renal clearance. Higher doses may be needed to achieve the desirable effect. In contrast to methotrexate, cyclosporine is available in a capsule, so it cannot be crushed.”

The choice of medication for psoriasis is generally guided by insurance step therapy requirements and is limited in the pediatric population (new guidelines on the care of pediatric psoriasis patients can be found at J Am Acad Dermatol 2020; 82[1]:161-201). In Dr. Habeshian’s experience, methotrexate is the go-to for most patients. “It treats concomitant psoriatic arthritis and can be used as monotherapy or combined with biologics,” she said. “Cyclosporine is useful for erythrodermic, pustular, and severe plaque psoriasis as a bridge. Other options include etanercept weekly in patients age 4-17 years and ustekinumab weekly dosing in patients age 12-17 years.”

Acitretin can be a useful adjunct for younger patients who are unable to obtain biologic agents. “It is most useful in widespread guttate and pustular psoriasis, but can be used be used in plaque psoriasis as well,” Dr. Habeshian said. “It is usually dosed as 0.1-1 mg/kg per day. Improvement in plaque disease is generally seen in 2-3 months of therapy, so it has a slow onset, whereas improvement in pustular psoriasis is seen within 3 weeks.” The most common side effects are dry skin and mucous membranes, while an important consideration is the potential for inducing premature bone toxicity. “It is thought that the risk is relatively low if the daily and total doses are kept low,” she said. “There is no consensus for monitoring bone health. Some clinicians will consider radiography periodically.”

Dr. Habeshian concluded her talk by noting that clinicians should give vaccinations/boosters before starting systemic therapy in young children. “The safety and efficacy of live immunization administered to children on biologics is not known,” she said. “Therefore, if live vaccination is needed, it’s generally recommended to postpone initiating biologic treatment.” The MMR and varicella vaccines are given at 12-15 months of life, with a booster at 4-6 years. The varicella vaccine should be given at least 6 weeks before starting immunosuppressive therapy, and the MMR vaccine at least 4 weeks before starting therapy.

The virtual meeting included presentations that had been slated for the annual meeting of the American Academy of Dermatology, which was canceled because of the COVID-19 pandemic. Dr. Habeshian reported having no disclosures.

 

In the clinical opinion of Kaiane A. Habeshian, MD, dermatologists shouldn’t think twice about using systemic agents in pediatric patients with severe dermatologic diseases.

Dr. Kaiane Habeshian

“By the time patients come to us pediatric dermatologists, they have been treated by multiple other doctors, and are frustrated,” Dr. Habeshian said during a virtual meeting held by the George Washington University department of dermatology. “Childhood eczema affects not only patients, but the whole family. For instance, if the child is not sleeping due to itch, their parents are probably not sleeping, either. Parental well-being and workplace productivity are affected, and finances are affected.”

Only a limited number of medications are Food and Drug Administration approved in pediatric patients for common dermatologic indications. These include dupilumab for atopic dermatitis (AD), etanercept and ustekinumab for psoriasis, adalimumab for hidradenitis suppurativa, and omalizumab for chronic idiopathic urticaria. “The approvals are mainly for the adolescent age group, except for etanercept, which is approved at the age of 4 years and above,” said Dr. Habeshian of the department of dermatology at Children’s National Hospital, Washington.

In clinical practice, off-label, nontargeted systemic agents are used mostly commonly in pediatric skin disease, particularly methotrexate and cyclosporine for both AD and psoriasis. “These agents are approved for other indications in infants and have many years of data to describe their use in these other conditions, although comprehensive randomized, controlled studies in pediatric patients for dermatologic conditions are lacking,” she said. “What’s in clinical trials for pediatric skin disease? There are multiple ongoing clinical studies of biologic agents in pediatric dermatology, mainly for psoriasis and also for dupilumab in younger patients, as well as a JAK [Janus kinase] inhibitor for alopecia areata.”

Dr. Habeshian noted that while some clinicians may have a knee-jerk reaction to go straight to dupilumab, which was approved in March of 2019 for adolescents with moderate to severe AD, that agent is not currently approved for the most sizable pediatric population with this condition – those under 12 years of age. “FDA approval is important in part because it helps establish safety and optimal dosing, which is often different and weight based in children,” she said. “In addition, FDA approval significantly impacts access to these newer, more expensive medications.”



Speaking from her experience treating patients in the DC/Maryland/Virginia area, Medicaid has consistently denied dupilumab coverage in children under age 12, “even in severe eczema that is suboptimally controlled with both methotrexate and cyclosporine, despite multiple levels of appeal, including letters of medical necessity and peer-to-peer evaluation,” she said. “This can vary across the country among states. However, dupilumab has been completely unattainable in those under 12 in our practice.”

When dupilumab is approved, most insurers first require step therapy with off-label agents for at least 3 months, as well as documented failure of topical corticosteroids, calcineurin inhibitors, crisaborole ointment, and phototherapy (if done). “It’s important to document an objective measure of severity at the very first visit with the SCORAD [scoring atopic dermatitis] or IGA [investigator global assessment],” she said. “Often, that is required if there is any hope for coverage. A familiarity with these requirements is often acquired through trial and error, and may change over time. This can lead to many delays in getting patients these treatments.” Additional information to consider documenting include the disease impact on quality of life, sleep, and school attendance, any hospitalizations for AD flares or secondary infections, and comorbid disease such as asthma.

Meanwhile, dupilumab is under priority review for children aged 6-11 years with moderate to severe AD, with a target action date of May 26, 2020. “It’s unclear how recent events [with the COVID-19 pandemic] will impact that, but there is something to look forward to, and give us hope for our patients,” she said.

Typically, Dr. Habeshian starts her pediatric patients with moderate to severe AD on methotrexate, which she characterized as “a time-tested, affordable, and very accessible option. It requires a little bit less monitoring upon initiation than cyclosporine, and it can be used for longer periods of time before weaning is required.”

In cases when disease is severe or intolerable, she often starts methotrexate and cyclosporine together. “I will usually start right at the 0.5 mg/kg per week rather than titrating up, because this maximizes the response and reduces the amount of blood work needed, unless they have an underlying risk factor for GI distress, or obese patients who are at increased risk for LFT [liver function test] elevation,” she noted. “Patients will note some improvement as early as 2 weeks on methotrexate, but I counsel them to expect 4-6 weeks for maximum improvement. We do not do a test dose of methotrexate at our institution. If there is a slight LFT elevation upon checking labs, ensure that the labs were done at least 4-6 days after the dose, because transient LFT dose elevations are common in 3-4 days.”

GI distress is by far the most common clinical side effect of methotrexate. “We do not do much intramuscular injection of methotrexate, so we rely a lot on folic acid, which reduces the risk of GI distress and elevated LFTs without reducing efficacy,” she said. “We recommend daily folic acid for simplicity, or folic acid 6 days per week.”

Dr. Habeshian said that many pediatric patients can swallow the 2.5 mg tablets of methotrexate “because they’re quite small, and most patients don’t have a problem taking the methotrexate when it’s crushed and mixed with food such as apple sauce or pudding. However, it is critical to discuss proper handling to avoid lung toxicity.” This includes placing the pills in a plastic bag prior to crushing, avoiding inhalation, and avoiding handling near pregnant women and pets, she noted. In addition, she said, “in adolescents, we need to consider the teratogenicity of methotrexate, as well as the possibility of alcohol consumption worsening liver complications. If I prescribe methotrexate in patients of childbearing age, I will counsel them extensively regarding the risk of fetal death and birth defects. If needed, I will start combined oral contraceptives. Ultimately, I’m willing to use these medicines safely, with significant counseling.”

When addressing the risk of methotrexate overdose, she reminds parents to store the medication in a safe place, out of the reach of children. “Patients are at the highest risk of overdose complications if they are given the medication multiple days in a row rather than a one-time, single high dose,” she said. “The literature suggests that one-time overdoses of methotrexate – deliberate or accidental – are unlikely to cause acute bone marrow suppression or hepatitis. This is probably because GI absorption of methotrexate reaches a saturation point, and the kidneys passively and actively excrete the medication at quite a rapid pace so that the methotrexate is often undetectable in the blood at 24 hours post ingestion. I do prescribe a limited supply to help prevent accidental overdoses. In part, this is because if the patient is receiving the medication daily, they’ll run out very quickly, and it will come the family’s attention and to your attention that it’s not being administered correctly.”

Another treatment option to consider for cases of moderate to severe AD is cyclosporine, “which works extremely quickly,” Dr. Habeshian said. “It is very good to rapidly control severe disease while methotrexate or other modes of treatment kick in. It’s best used as a bridge, given the risks of renal damage with long-term use. I like to limit its use to 6 months.”

Cyclosporine comes in two formulations: a modified oral formulation and a nonmodified oral formulation. The modified formulation is absorbed much better than the unmodified formulation. “We start at 5 mg/kg divided b.i.d., which is higher than the recommended dosing for dermatologic conditions in adults,” she said. “This is because children may not absorb the medication as well and may have improved renal clearance. Higher doses may be needed to achieve the desirable effect. In contrast to methotrexate, cyclosporine is available in a capsule, so it cannot be crushed.”

The choice of medication for psoriasis is generally guided by insurance step therapy requirements and is limited in the pediatric population (new guidelines on the care of pediatric psoriasis patients can be found at J Am Acad Dermatol 2020; 82[1]:161-201). In Dr. Habeshian’s experience, methotrexate is the go-to for most patients. “It treats concomitant psoriatic arthritis and can be used as monotherapy or combined with biologics,” she said. “Cyclosporine is useful for erythrodermic, pustular, and severe plaque psoriasis as a bridge. Other options include etanercept weekly in patients age 4-17 years and ustekinumab weekly dosing in patients age 12-17 years.”

Acitretin can be a useful adjunct for younger patients who are unable to obtain biologic agents. “It is most useful in widespread guttate and pustular psoriasis, but can be used be used in plaque psoriasis as well,” Dr. Habeshian said. “It is usually dosed as 0.1-1 mg/kg per day. Improvement in plaque disease is generally seen in 2-3 months of therapy, so it has a slow onset, whereas improvement in pustular psoriasis is seen within 3 weeks.” The most common side effects are dry skin and mucous membranes, while an important consideration is the potential for inducing premature bone toxicity. “It is thought that the risk is relatively low if the daily and total doses are kept low,” she said. “There is no consensus for monitoring bone health. Some clinicians will consider radiography periodically.”

Dr. Habeshian concluded her talk by noting that clinicians should give vaccinations/boosters before starting systemic therapy in young children. “The safety and efficacy of live immunization administered to children on biologics is not known,” she said. “Therefore, if live vaccination is needed, it’s generally recommended to postpone initiating biologic treatment.” The MMR and varicella vaccines are given at 12-15 months of life, with a booster at 4-6 years. The varicella vaccine should be given at least 6 weeks before starting immunosuppressive therapy, and the MMR vaccine at least 4 weeks before starting therapy.

The virtual meeting included presentations that had been slated for the annual meeting of the American Academy of Dermatology, which was canceled because of the COVID-19 pandemic. Dr. Habeshian reported having no disclosures.

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ASCO announces its own COVID-19 and cancer registry

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Thu, 12/15/2022 - 17:37

Data will not be commercialized, unlike CancerLinQ

The American Society of Clinical Oncology (ASCO) has launched a registry to collect data on cancer patients with COVID-19 and is asking oncology practices across the United States to share information about their patients with the infection for educational purposes.

The new registry joins at least two other cancer and COVID-19 patient registries already underway in the U.S.

In a statement, ASCO President Howard “Skip” Burris III, MD said there is a need to know “how the virus is impacting our patients, their cancer treatment, and outcomes to inform current cancer care” and future care.

The web-based registry, known as the American Society of Clinical Oncology (ASCO) Survey on COVID-19 in Oncology Registry, is open to all U.S. oncology practices. Participating practices will receive an unspecified “nominal” payment for their data entry efforts.

The registry patient information will be stored on ASCO’s “Big Data” platform, known as CancerLinQ, but is being held apart from that pool of data. The registry information will not be available for commercial purposes, ASCO spokesperson Rachel Martin recently told Medscape Medical News.

Separately, CancerLinQ, which is a wholly owned subsidiary of ASCO, will continue to collect data from its participant oncology practices (as usual), including COVID-19 information.

CancerLinQ has been criticized by ethicists for allowing partner companies to sell access to its data (after stripping off patient identifiers), but without asking for patients’ permission, as reported last year by Medscape Medical News.

Eleven practices, including academic enterprises, have so far expressed interested in participating in the ASCO COVID-19 Registry.

Participating practices are requested to send in details about cancer patients with a confirmed COVID-19 diagnosis. As well as a baseline data capture form, they will need to provide details of subsequent status, treatment, and outcomes. Some patient-identifying data, including zip code, date of birth, gender, race, ethnicity, type of cancer, and comorbidities, will be collected for the purposes of analysis.

ASCO hopes to learn about characteristics of patients with cancer most impacted by COVID-19; estimates of disease severity; treatment modifications or delays; implementation of telemedicine in the cancer treatment setting; and clinical outcomes related to both COVID-19 and cancer.

ASCO says it will deliver periodic reports to the cancer community and the broader public on these and other “key learnings.” It also says that the registry is designed to capture point-in-time data as well as longitudinal data on how the virus will impact care and outcomes into 2021.

ASCO is not alone in its data collection efforts.

The COVID-19 and Cancer Consortium is already collecting information from more than 50 cancer centers and organizations on COVID-19 in patients with cancer. The American Society of Hematology (ASH) Research Collaborative COVID-19 Registry for Hematologic Malignancy is doing the same but with a focus on hematologic malignancies.

This article first appeared on Medscape.com.

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Data will not be commercialized, unlike CancerLinQ

Data will not be commercialized, unlike CancerLinQ

The American Society of Clinical Oncology (ASCO) has launched a registry to collect data on cancer patients with COVID-19 and is asking oncology practices across the United States to share information about their patients with the infection for educational purposes.

The new registry joins at least two other cancer and COVID-19 patient registries already underway in the U.S.

In a statement, ASCO President Howard “Skip” Burris III, MD said there is a need to know “how the virus is impacting our patients, their cancer treatment, and outcomes to inform current cancer care” and future care.

The web-based registry, known as the American Society of Clinical Oncology (ASCO) Survey on COVID-19 in Oncology Registry, is open to all U.S. oncology practices. Participating practices will receive an unspecified “nominal” payment for their data entry efforts.

The registry patient information will be stored on ASCO’s “Big Data” platform, known as CancerLinQ, but is being held apart from that pool of data. The registry information will not be available for commercial purposes, ASCO spokesperson Rachel Martin recently told Medscape Medical News.

Separately, CancerLinQ, which is a wholly owned subsidiary of ASCO, will continue to collect data from its participant oncology practices (as usual), including COVID-19 information.

CancerLinQ has been criticized by ethicists for allowing partner companies to sell access to its data (after stripping off patient identifiers), but without asking for patients’ permission, as reported last year by Medscape Medical News.

Eleven practices, including academic enterprises, have so far expressed interested in participating in the ASCO COVID-19 Registry.

Participating practices are requested to send in details about cancer patients with a confirmed COVID-19 diagnosis. As well as a baseline data capture form, they will need to provide details of subsequent status, treatment, and outcomes. Some patient-identifying data, including zip code, date of birth, gender, race, ethnicity, type of cancer, and comorbidities, will be collected for the purposes of analysis.

ASCO hopes to learn about characteristics of patients with cancer most impacted by COVID-19; estimates of disease severity; treatment modifications or delays; implementation of telemedicine in the cancer treatment setting; and clinical outcomes related to both COVID-19 and cancer.

ASCO says it will deliver periodic reports to the cancer community and the broader public on these and other “key learnings.” It also says that the registry is designed to capture point-in-time data as well as longitudinal data on how the virus will impact care and outcomes into 2021.

ASCO is not alone in its data collection efforts.

The COVID-19 and Cancer Consortium is already collecting information from more than 50 cancer centers and organizations on COVID-19 in patients with cancer. The American Society of Hematology (ASH) Research Collaborative COVID-19 Registry for Hematologic Malignancy is doing the same but with a focus on hematologic malignancies.

This article first appeared on Medscape.com.

The American Society of Clinical Oncology (ASCO) has launched a registry to collect data on cancer patients with COVID-19 and is asking oncology practices across the United States to share information about their patients with the infection for educational purposes.

The new registry joins at least two other cancer and COVID-19 patient registries already underway in the U.S.

In a statement, ASCO President Howard “Skip” Burris III, MD said there is a need to know “how the virus is impacting our patients, their cancer treatment, and outcomes to inform current cancer care” and future care.

The web-based registry, known as the American Society of Clinical Oncology (ASCO) Survey on COVID-19 in Oncology Registry, is open to all U.S. oncology practices. Participating practices will receive an unspecified “nominal” payment for their data entry efforts.

The registry patient information will be stored on ASCO’s “Big Data” platform, known as CancerLinQ, but is being held apart from that pool of data. The registry information will not be available for commercial purposes, ASCO spokesperson Rachel Martin recently told Medscape Medical News.

Separately, CancerLinQ, which is a wholly owned subsidiary of ASCO, will continue to collect data from its participant oncology practices (as usual), including COVID-19 information.

CancerLinQ has been criticized by ethicists for allowing partner companies to sell access to its data (after stripping off patient identifiers), but without asking for patients’ permission, as reported last year by Medscape Medical News.

Eleven practices, including academic enterprises, have so far expressed interested in participating in the ASCO COVID-19 Registry.

Participating practices are requested to send in details about cancer patients with a confirmed COVID-19 diagnosis. As well as a baseline data capture form, they will need to provide details of subsequent status, treatment, and outcomes. Some patient-identifying data, including zip code, date of birth, gender, race, ethnicity, type of cancer, and comorbidities, will be collected for the purposes of analysis.

ASCO hopes to learn about characteristics of patients with cancer most impacted by COVID-19; estimates of disease severity; treatment modifications or delays; implementation of telemedicine in the cancer treatment setting; and clinical outcomes related to both COVID-19 and cancer.

ASCO says it will deliver periodic reports to the cancer community and the broader public on these and other “key learnings.” It also says that the registry is designed to capture point-in-time data as well as longitudinal data on how the virus will impact care and outcomes into 2021.

ASCO is not alone in its data collection efforts.

The COVID-19 and Cancer Consortium is already collecting information from more than 50 cancer centers and organizations on COVID-19 in patients with cancer. The American Society of Hematology (ASH) Research Collaborative COVID-19 Registry for Hematologic Malignancy is doing the same but with a focus on hematologic malignancies.

This article first appeared on Medscape.com.

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