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Doctor with a mask: Enhancing communication and empathy
Delivering a goodbye monologue to an elderly patient, I said: “Tomorrow, my colleague Dr. XYZ, who is an excellent physician, will be here in my place, and I will leave a detailed sign out for them.” I was on the last day of a 7-day-long block on hospital medicine service. Typically, when I say goodbye, some patients respond “thank you, enjoy your time,” some don’t care, and some show disappointment at the transition. This patient became uneasy, choking back tears, and said: “But, I don’t want a new doctor. You know me well. ... They don’t even allow my family in the hospital.”
That expression of anxiety, of having to build rapport with a new provider, concerns about continuity of care, and missing support of family members were not alien to me. As I instinctively took a step toward him to offer a comforting hug, an unsolicited voice in my head said, “social distancing.” I steered back, handing him a box of tissues. I continued: “You have come a long way, and things are looking good from here,” providing more details before I left the room. There was a change in my practice that week. I didn’t shake hands with my patients; I didn’t sit on any unassigned chair; I had no family members in the room asking me questions or supporting my patients. I was trying to show empathy or a smile behind a mask and protective eyewear. The business card with photograph had become more critical than ever for patients to “see” their doctor.
Moving from room to room and examining patients, it felt like the coronavirus was changing the practice of medicine beyond concerns of virus transmission, losing a patient, or putting in extra hours. I realized I was missing so-called “nonverbal communication” amid social distancing: facial expressions, social touch, and the support of family or friends to motivate or destress patients. With no visitors and curbed health care staff entries into patient’s rooms, social distancing was amounting to social isolation. My protective gear and social distancing seemed to be reducing my perceived empathy with patients, and the ability to build a good patient-physician relationship.
Amid alarms, beeps, and buzzes, patients were not only missing their families but also the familiar faces of their physicians. I needed to raise my game while embracing the “new normal” of health care. Cut to the next 13 patients: I paid more attention to voice, tone, and posture. I called patient families from the bedside instead of the office. I translated my emotions with words, loud and clear, replacing “your renal function looks better” (said without a smile) with “I am happy to see your renal function better.”
Through years of practice, I felt prepared to deal with feelings of denial, grief, anxiety, and much more, but the emotions arising as a result of this pandemic were unique. “I knew my mother was old, and this day would come,” said one of the inconsolable family members of a critically ill patient. “However, I wished to be at her side that day, not like this.” I spend my days listening to patient and family concerns about unemployment with quarantine, fears of spreading the disease to loved ones, and the possibility of medications not working.
After a long day, I went back to that first elderly patient to see if he was comfortable with the transition of care. I did a video conference with his daughter, and repeated my goodbyes. The patient smiled and said: “Doc, you deserve a break.” That day I learned about the challenges of good clinical rounding in coronavirus times, and how to overcome them. For “millennial” physicians, it is our first pandemic, and we are learning from it every day.
Driving home through empty streets, I concluded that my answers to the clinical questions asked by patients and families lean heavily on ever-changing data, and the treatments offered have yet to prove their mettle. As a result, I will continue to focus as much on the time-tested fundamentals of clinical practice: communication and empathy. I cannot allow the social distancing and the mask to hide my compassion, or take away from patient satisfaction. Shifting gears, I turned on my car radio, using music to reset my mind before attending to my now-homeschooling kids.
Dr. Saigal is a hospitalist and clinical assistant professor of medicine in the division of hospital medicine at the Ohio State University Wexner Medical Center, Columbus.
References
1. Wong CK et al. Effect of facemasks on empathy and relational continuity: A randomised controlled trial in primary care. BMC Fam Pract. 2013;14:200.
2. Little P et al. Randomised controlled trial of a brief intervention targeting predominantly nonverbal communication in general practice consultations. Br J Gen Pract. 2015;65(635):e351-6.
3. Varghese A. A doctor’s touch. TEDGlobal 2011. 2011 Jul. https://www.ted.com/talks/abraham_verghese_a_doctor_s_touch?language=en
Delivering a goodbye monologue to an elderly patient, I said: “Tomorrow, my colleague Dr. XYZ, who is an excellent physician, will be here in my place, and I will leave a detailed sign out for them.” I was on the last day of a 7-day-long block on hospital medicine service. Typically, when I say goodbye, some patients respond “thank you, enjoy your time,” some don’t care, and some show disappointment at the transition. This patient became uneasy, choking back tears, and said: “But, I don’t want a new doctor. You know me well. ... They don’t even allow my family in the hospital.”
That expression of anxiety, of having to build rapport with a new provider, concerns about continuity of care, and missing support of family members were not alien to me. As I instinctively took a step toward him to offer a comforting hug, an unsolicited voice in my head said, “social distancing.” I steered back, handing him a box of tissues. I continued: “You have come a long way, and things are looking good from here,” providing more details before I left the room. There was a change in my practice that week. I didn’t shake hands with my patients; I didn’t sit on any unassigned chair; I had no family members in the room asking me questions or supporting my patients. I was trying to show empathy or a smile behind a mask and protective eyewear. The business card with photograph had become more critical than ever for patients to “see” their doctor.
Moving from room to room and examining patients, it felt like the coronavirus was changing the practice of medicine beyond concerns of virus transmission, losing a patient, or putting in extra hours. I realized I was missing so-called “nonverbal communication” amid social distancing: facial expressions, social touch, and the support of family or friends to motivate or destress patients. With no visitors and curbed health care staff entries into patient’s rooms, social distancing was amounting to social isolation. My protective gear and social distancing seemed to be reducing my perceived empathy with patients, and the ability to build a good patient-physician relationship.
Amid alarms, beeps, and buzzes, patients were not only missing their families but also the familiar faces of their physicians. I needed to raise my game while embracing the “new normal” of health care. Cut to the next 13 patients: I paid more attention to voice, tone, and posture. I called patient families from the bedside instead of the office. I translated my emotions with words, loud and clear, replacing “your renal function looks better” (said without a smile) with “I am happy to see your renal function better.”
Through years of practice, I felt prepared to deal with feelings of denial, grief, anxiety, and much more, but the emotions arising as a result of this pandemic were unique. “I knew my mother was old, and this day would come,” said one of the inconsolable family members of a critically ill patient. “However, I wished to be at her side that day, not like this.” I spend my days listening to patient and family concerns about unemployment with quarantine, fears of spreading the disease to loved ones, and the possibility of medications not working.
After a long day, I went back to that first elderly patient to see if he was comfortable with the transition of care. I did a video conference with his daughter, and repeated my goodbyes. The patient smiled and said: “Doc, you deserve a break.” That day I learned about the challenges of good clinical rounding in coronavirus times, and how to overcome them. For “millennial” physicians, it is our first pandemic, and we are learning from it every day.
Driving home through empty streets, I concluded that my answers to the clinical questions asked by patients and families lean heavily on ever-changing data, and the treatments offered have yet to prove their mettle. As a result, I will continue to focus as much on the time-tested fundamentals of clinical practice: communication and empathy. I cannot allow the social distancing and the mask to hide my compassion, or take away from patient satisfaction. Shifting gears, I turned on my car radio, using music to reset my mind before attending to my now-homeschooling kids.
Dr. Saigal is a hospitalist and clinical assistant professor of medicine in the division of hospital medicine at the Ohio State University Wexner Medical Center, Columbus.
References
1. Wong CK et al. Effect of facemasks on empathy and relational continuity: A randomised controlled trial in primary care. BMC Fam Pract. 2013;14:200.
2. Little P et al. Randomised controlled trial of a brief intervention targeting predominantly nonverbal communication in general practice consultations. Br J Gen Pract. 2015;65(635):e351-6.
3. Varghese A. A doctor’s touch. TEDGlobal 2011. 2011 Jul. https://www.ted.com/talks/abraham_verghese_a_doctor_s_touch?language=en
Delivering a goodbye monologue to an elderly patient, I said: “Tomorrow, my colleague Dr. XYZ, who is an excellent physician, will be here in my place, and I will leave a detailed sign out for them.” I was on the last day of a 7-day-long block on hospital medicine service. Typically, when I say goodbye, some patients respond “thank you, enjoy your time,” some don’t care, and some show disappointment at the transition. This patient became uneasy, choking back tears, and said: “But, I don’t want a new doctor. You know me well. ... They don’t even allow my family in the hospital.”
That expression of anxiety, of having to build rapport with a new provider, concerns about continuity of care, and missing support of family members were not alien to me. As I instinctively took a step toward him to offer a comforting hug, an unsolicited voice in my head said, “social distancing.” I steered back, handing him a box of tissues. I continued: “You have come a long way, and things are looking good from here,” providing more details before I left the room. There was a change in my practice that week. I didn’t shake hands with my patients; I didn’t sit on any unassigned chair; I had no family members in the room asking me questions or supporting my patients. I was trying to show empathy or a smile behind a mask and protective eyewear. The business card with photograph had become more critical than ever for patients to “see” their doctor.
Moving from room to room and examining patients, it felt like the coronavirus was changing the practice of medicine beyond concerns of virus transmission, losing a patient, or putting in extra hours. I realized I was missing so-called “nonverbal communication” amid social distancing: facial expressions, social touch, and the support of family or friends to motivate or destress patients. With no visitors and curbed health care staff entries into patient’s rooms, social distancing was amounting to social isolation. My protective gear and social distancing seemed to be reducing my perceived empathy with patients, and the ability to build a good patient-physician relationship.
Amid alarms, beeps, and buzzes, patients were not only missing their families but also the familiar faces of their physicians. I needed to raise my game while embracing the “new normal” of health care. Cut to the next 13 patients: I paid more attention to voice, tone, and posture. I called patient families from the bedside instead of the office. I translated my emotions with words, loud and clear, replacing “your renal function looks better” (said without a smile) with “I am happy to see your renal function better.”
Through years of practice, I felt prepared to deal with feelings of denial, grief, anxiety, and much more, but the emotions arising as a result of this pandemic were unique. “I knew my mother was old, and this day would come,” said one of the inconsolable family members of a critically ill patient. “However, I wished to be at her side that day, not like this.” I spend my days listening to patient and family concerns about unemployment with quarantine, fears of spreading the disease to loved ones, and the possibility of medications not working.
After a long day, I went back to that first elderly patient to see if he was comfortable with the transition of care. I did a video conference with his daughter, and repeated my goodbyes. The patient smiled and said: “Doc, you deserve a break.” That day I learned about the challenges of good clinical rounding in coronavirus times, and how to overcome them. For “millennial” physicians, it is our first pandemic, and we are learning from it every day.
Driving home through empty streets, I concluded that my answers to the clinical questions asked by patients and families lean heavily on ever-changing data, and the treatments offered have yet to prove their mettle. As a result, I will continue to focus as much on the time-tested fundamentals of clinical practice: communication and empathy. I cannot allow the social distancing and the mask to hide my compassion, or take away from patient satisfaction. Shifting gears, I turned on my car radio, using music to reset my mind before attending to my now-homeschooling kids.
Dr. Saigal is a hospitalist and clinical assistant professor of medicine in the division of hospital medicine at the Ohio State University Wexner Medical Center, Columbus.
References
1. Wong CK et al. Effect of facemasks on empathy and relational continuity: A randomised controlled trial in primary care. BMC Fam Pract. 2013;14:200.
2. Little P et al. Randomised controlled trial of a brief intervention targeting predominantly nonverbal communication in general practice consultations. Br J Gen Pract. 2015;65(635):e351-6.
3. Varghese A. A doctor’s touch. TEDGlobal 2011. 2011 Jul. https://www.ted.com/talks/abraham_verghese_a_doctor_s_touch?language=en
‘We will get through this’: Advice for lessening your pandemic anxiety
The COVID-19 pandemic is an experience that is unprecedented in our lifetime. It is having a pervasive effect due to how mysterious, potentially dangerous, and sustained it is. We don’t know how bad it’s going to get or how long it’s going to last. We have natural disasters like hurricanes and earthquakes, but they are limited in time and scope. But this global pandemic is something we can’t put our arms around just yet, breeding uncertainty, worry, and fear. This is where mental health professionals need to come in.
The populations being affected by this pandemic can be placed into different groups on the basis of their mental health consequences and needs. First you have, for lack of a better term, “the worried well.” These are people with no preexisting mental disorder who are naturally worried by this and are trying to take appropriate actions to protect themselves and prepare. For such individuals, the equivalent of mental health first-aid should be useful (we’ll come back to that in a moment). Given the proper guidance and sources of information, most such people should be able to manage the anxiety, worry, and dysphoria associated with this critical pandemic.
Then there are those who have preexisting mental conditions related to mood, anxiety, stress, or obsessive tendencies. They are probably going to have an increase in their symptoms, and as such, a corresponding need for adjusting treatment. This may require an increase in their existing medications or the addition of an ad hoc medication, or perhaps more frequent contact with their doctor or therapist.
Because travel and direct visitation is discouraged at the moment, virtual methods of communication should be used to speak with these patients. Such methods have long existed but haven’t been adopted in large numbers; this may be the impetus to finally make it happen. Using the telephone, FaceTime, Skype, WebEx, Zoom, and other means of videoconferencing should be feasible. As billing procedures are being adapted for this moment, there’s no reason why individuals shouldn’t be able to contact their mental health provider.
Substance abuse is also a condition vulnerable to the stress effects of this pandemic. This will prompt or tempt those to use substances that they’ve abused or turned to in the past as a way of self-medicating and assuaging their anxiety and worry.
It’s possible that the pandemic could find its way into delusions or exacerbate symptoms, but somewhat paradoxically, people with serious mental illnesses often respond more calmly to crises than do individuals without them. As a result, the number of these patients requiring emergency room admission for possible exacerbation of symptoms is probably not going to be that much greater than normal.
How to Cope With an Unprecedented Situation
For the worried well and for the clinicians who have understandable fears about exposure, there are several things you can try to manage your anxiety. There are concentric circles of concern that you have to maintain. Think of it like the instructions on an airplane when, if there’s a drop in cabin pressure, you’re asked to apply your own oxygen mask first before placing one on your child. In the same way, you must first think about protecting yourself by limiting your exposure and monitoring your own physical state for any symptoms. But then you must be concerned about your family, your friends, and also society. This is a situation where the impulse and the ethos of worrying about your fellow persons—being your brother’s keeper—is imperative.
The epidemic has been successfully managed in some countries, like Singapore and China, which, once they got on top of it, were able to limit contagion in a very dramatic way. But these are authoritarian governments. The United States doesn’t work that way, which is what makes appealing to the principle of caring for others so crucial. You can protect yourself, but if other people aren’t also protected, it may not matter. You have to worry not just about yourself but about everyone else.
When it comes to stress management, I recommend not catastrophizing or watching the news media 24/7. Distract yourself with other work or recreational activities. Reach out and communicate—virtually, of course—with friends, family, and healthcare providers as needed. Staying in touch acts not just as a diversion but also as an outlet for assuaging your feelings, your sense of being in this alone, feeling isolated.
There are also cognitive reframing mechanisms you can employ. Consider that although this is bad, some countries have already gone through it. And we’ll get through it too. You’ll understandably ask yourself what it would mean if you were to be exposed. In most cases you can say, “I’m going to have the flu and symptoms that are not going to be pleasant, but I’ve had the flu or serious sickness before.”
Remember that there are already antiretroviral treatments being tested in clinical trials and showing efficacy. It’s good to know that before this pandemic ends, some of these treatments will probably be clinically applied, mostly to those who are severely affected and in intensive care.
Diagnose yourself. Monitor your state. Determine whether the stress is really having an impact on you. Is it affecting your sleep, appetite, concentration, mood? And if you do have a preexisting psychiatric condition, don’t feel afraid to reach out to your mental health provider. Understand that you’re going to be anxious, which may aggravate your symptoms and require an adjustment in your treatment. That’s okay. It’s to be expected and your provider should be available to help you.
Controlling this outbreak via the same epidemiologic infectious disease prevention guidance that works in authoritarian societies is not going to be applicable here because of the liberties that we experience in American society. What will determine our success is the belief that we’re in this together, that we’re going to help each other. We should be proud of that, as it shows how Americans and people around the world stand up in situations like this.
Let’s also note that even though everybody is affected and undergoing previously unimaginable levels of anticipated stress and dislocation, it’s the healthcare providers who are really on the frontlines. They’re under tremendous pressure to continue to perform heroically, at great risk to themselves. They deserve a real debt of gratitude.
We will get through this, but as we do, it will not end until we’ve undergone an extreme test of our character. I certainly hope and trust that we will be up to it.
Dr. Jeffrey A. Lieberman is chairman of the Department of Psychiatry at Columbia University. He is a former president of the American Psychiatric Association.
Disclosure: Jeffrey A. Lieberman, MD, has disclosed the following relevant financial relationships: Served as a director, officer, partner, employee, advisor, consultant, or trustee for Clintara; Intracellular Therapies. Received research grant from Alkermes; Biomarin; EnVivo/Forum; Genentech; Novartis/Novation; Sunovion. Patent: Repligen.
This article first appeared on Medscape.com.
The COVID-19 pandemic is an experience that is unprecedented in our lifetime. It is having a pervasive effect due to how mysterious, potentially dangerous, and sustained it is. We don’t know how bad it’s going to get or how long it’s going to last. We have natural disasters like hurricanes and earthquakes, but they are limited in time and scope. But this global pandemic is something we can’t put our arms around just yet, breeding uncertainty, worry, and fear. This is where mental health professionals need to come in.
The populations being affected by this pandemic can be placed into different groups on the basis of their mental health consequences and needs. First you have, for lack of a better term, “the worried well.” These are people with no preexisting mental disorder who are naturally worried by this and are trying to take appropriate actions to protect themselves and prepare. For such individuals, the equivalent of mental health first-aid should be useful (we’ll come back to that in a moment). Given the proper guidance and sources of information, most such people should be able to manage the anxiety, worry, and dysphoria associated with this critical pandemic.
Then there are those who have preexisting mental conditions related to mood, anxiety, stress, or obsessive tendencies. They are probably going to have an increase in their symptoms, and as such, a corresponding need for adjusting treatment. This may require an increase in their existing medications or the addition of an ad hoc medication, or perhaps more frequent contact with their doctor or therapist.
Because travel and direct visitation is discouraged at the moment, virtual methods of communication should be used to speak with these patients. Such methods have long existed but haven’t been adopted in large numbers; this may be the impetus to finally make it happen. Using the telephone, FaceTime, Skype, WebEx, Zoom, and other means of videoconferencing should be feasible. As billing procedures are being adapted for this moment, there’s no reason why individuals shouldn’t be able to contact their mental health provider.
Substance abuse is also a condition vulnerable to the stress effects of this pandemic. This will prompt or tempt those to use substances that they’ve abused or turned to in the past as a way of self-medicating and assuaging their anxiety and worry.
It’s possible that the pandemic could find its way into delusions or exacerbate symptoms, but somewhat paradoxically, people with serious mental illnesses often respond more calmly to crises than do individuals without them. As a result, the number of these patients requiring emergency room admission for possible exacerbation of symptoms is probably not going to be that much greater than normal.
How to Cope With an Unprecedented Situation
For the worried well and for the clinicians who have understandable fears about exposure, there are several things you can try to manage your anxiety. There are concentric circles of concern that you have to maintain. Think of it like the instructions on an airplane when, if there’s a drop in cabin pressure, you’re asked to apply your own oxygen mask first before placing one on your child. In the same way, you must first think about protecting yourself by limiting your exposure and monitoring your own physical state for any symptoms. But then you must be concerned about your family, your friends, and also society. This is a situation where the impulse and the ethos of worrying about your fellow persons—being your brother’s keeper—is imperative.
The epidemic has been successfully managed in some countries, like Singapore and China, which, once they got on top of it, were able to limit contagion in a very dramatic way. But these are authoritarian governments. The United States doesn’t work that way, which is what makes appealing to the principle of caring for others so crucial. You can protect yourself, but if other people aren’t also protected, it may not matter. You have to worry not just about yourself but about everyone else.
When it comes to stress management, I recommend not catastrophizing or watching the news media 24/7. Distract yourself with other work or recreational activities. Reach out and communicate—virtually, of course—with friends, family, and healthcare providers as needed. Staying in touch acts not just as a diversion but also as an outlet for assuaging your feelings, your sense of being in this alone, feeling isolated.
There are also cognitive reframing mechanisms you can employ. Consider that although this is bad, some countries have already gone through it. And we’ll get through it too. You’ll understandably ask yourself what it would mean if you were to be exposed. In most cases you can say, “I’m going to have the flu and symptoms that are not going to be pleasant, but I’ve had the flu or serious sickness before.”
Remember that there are already antiretroviral treatments being tested in clinical trials and showing efficacy. It’s good to know that before this pandemic ends, some of these treatments will probably be clinically applied, mostly to those who are severely affected and in intensive care.
Diagnose yourself. Monitor your state. Determine whether the stress is really having an impact on you. Is it affecting your sleep, appetite, concentration, mood? And if you do have a preexisting psychiatric condition, don’t feel afraid to reach out to your mental health provider. Understand that you’re going to be anxious, which may aggravate your symptoms and require an adjustment in your treatment. That’s okay. It’s to be expected and your provider should be available to help you.
Controlling this outbreak via the same epidemiologic infectious disease prevention guidance that works in authoritarian societies is not going to be applicable here because of the liberties that we experience in American society. What will determine our success is the belief that we’re in this together, that we’re going to help each other. We should be proud of that, as it shows how Americans and people around the world stand up in situations like this.
Let’s also note that even though everybody is affected and undergoing previously unimaginable levels of anticipated stress and dislocation, it’s the healthcare providers who are really on the frontlines. They’re under tremendous pressure to continue to perform heroically, at great risk to themselves. They deserve a real debt of gratitude.
We will get through this, but as we do, it will not end until we’ve undergone an extreme test of our character. I certainly hope and trust that we will be up to it.
Dr. Jeffrey A. Lieberman is chairman of the Department of Psychiatry at Columbia University. He is a former president of the American Psychiatric Association.
Disclosure: Jeffrey A. Lieberman, MD, has disclosed the following relevant financial relationships: Served as a director, officer, partner, employee, advisor, consultant, or trustee for Clintara; Intracellular Therapies. Received research grant from Alkermes; Biomarin; EnVivo/Forum; Genentech; Novartis/Novation; Sunovion. Patent: Repligen.
This article first appeared on Medscape.com.
The COVID-19 pandemic is an experience that is unprecedented in our lifetime. It is having a pervasive effect due to how mysterious, potentially dangerous, and sustained it is. We don’t know how bad it’s going to get or how long it’s going to last. We have natural disasters like hurricanes and earthquakes, but they are limited in time and scope. But this global pandemic is something we can’t put our arms around just yet, breeding uncertainty, worry, and fear. This is where mental health professionals need to come in.
The populations being affected by this pandemic can be placed into different groups on the basis of their mental health consequences and needs. First you have, for lack of a better term, “the worried well.” These are people with no preexisting mental disorder who are naturally worried by this and are trying to take appropriate actions to protect themselves and prepare. For such individuals, the equivalent of mental health first-aid should be useful (we’ll come back to that in a moment). Given the proper guidance and sources of information, most such people should be able to manage the anxiety, worry, and dysphoria associated with this critical pandemic.
Then there are those who have preexisting mental conditions related to mood, anxiety, stress, or obsessive tendencies. They are probably going to have an increase in their symptoms, and as such, a corresponding need for adjusting treatment. This may require an increase in their existing medications or the addition of an ad hoc medication, or perhaps more frequent contact with their doctor or therapist.
Because travel and direct visitation is discouraged at the moment, virtual methods of communication should be used to speak with these patients. Such methods have long existed but haven’t been adopted in large numbers; this may be the impetus to finally make it happen. Using the telephone, FaceTime, Skype, WebEx, Zoom, and other means of videoconferencing should be feasible. As billing procedures are being adapted for this moment, there’s no reason why individuals shouldn’t be able to contact their mental health provider.
Substance abuse is also a condition vulnerable to the stress effects of this pandemic. This will prompt or tempt those to use substances that they’ve abused or turned to in the past as a way of self-medicating and assuaging their anxiety and worry.
It’s possible that the pandemic could find its way into delusions or exacerbate symptoms, but somewhat paradoxically, people with serious mental illnesses often respond more calmly to crises than do individuals without them. As a result, the number of these patients requiring emergency room admission for possible exacerbation of symptoms is probably not going to be that much greater than normal.
How to Cope With an Unprecedented Situation
For the worried well and for the clinicians who have understandable fears about exposure, there are several things you can try to manage your anxiety. There are concentric circles of concern that you have to maintain. Think of it like the instructions on an airplane when, if there’s a drop in cabin pressure, you’re asked to apply your own oxygen mask first before placing one on your child. In the same way, you must first think about protecting yourself by limiting your exposure and monitoring your own physical state for any symptoms. But then you must be concerned about your family, your friends, and also society. This is a situation where the impulse and the ethos of worrying about your fellow persons—being your brother’s keeper—is imperative.
The epidemic has been successfully managed in some countries, like Singapore and China, which, once they got on top of it, were able to limit contagion in a very dramatic way. But these are authoritarian governments. The United States doesn’t work that way, which is what makes appealing to the principle of caring for others so crucial. You can protect yourself, but if other people aren’t also protected, it may not matter. You have to worry not just about yourself but about everyone else.
When it comes to stress management, I recommend not catastrophizing or watching the news media 24/7. Distract yourself with other work or recreational activities. Reach out and communicate—virtually, of course—with friends, family, and healthcare providers as needed. Staying in touch acts not just as a diversion but also as an outlet for assuaging your feelings, your sense of being in this alone, feeling isolated.
There are also cognitive reframing mechanisms you can employ. Consider that although this is bad, some countries have already gone through it. And we’ll get through it too. You’ll understandably ask yourself what it would mean if you were to be exposed. In most cases you can say, “I’m going to have the flu and symptoms that are not going to be pleasant, but I’ve had the flu or serious sickness before.”
Remember that there are already antiretroviral treatments being tested in clinical trials and showing efficacy. It’s good to know that before this pandemic ends, some of these treatments will probably be clinically applied, mostly to those who are severely affected and in intensive care.
Diagnose yourself. Monitor your state. Determine whether the stress is really having an impact on you. Is it affecting your sleep, appetite, concentration, mood? And if you do have a preexisting psychiatric condition, don’t feel afraid to reach out to your mental health provider. Understand that you’re going to be anxious, which may aggravate your symptoms and require an adjustment in your treatment. That’s okay. It’s to be expected and your provider should be available to help you.
Controlling this outbreak via the same epidemiologic infectious disease prevention guidance that works in authoritarian societies is not going to be applicable here because of the liberties that we experience in American society. What will determine our success is the belief that we’re in this together, that we’re going to help each other. We should be proud of that, as it shows how Americans and people around the world stand up in situations like this.
Let’s also note that even though everybody is affected and undergoing previously unimaginable levels of anticipated stress and dislocation, it’s the healthcare providers who are really on the frontlines. They’re under tremendous pressure to continue to perform heroically, at great risk to themselves. They deserve a real debt of gratitude.
We will get through this, but as we do, it will not end until we’ve undergone an extreme test of our character. I certainly hope and trust that we will be up to it.
Dr. Jeffrey A. Lieberman is chairman of the Department of Psychiatry at Columbia University. He is a former president of the American Psychiatric Association.
Disclosure: Jeffrey A. Lieberman, MD, has disclosed the following relevant financial relationships: Served as a director, officer, partner, employee, advisor, consultant, or trustee for Clintara; Intracellular Therapies. Received research grant from Alkermes; Biomarin; EnVivo/Forum; Genentech; Novartis/Novation; Sunovion. Patent: Repligen.
This article first appeared on Medscape.com.
Strategies for treating patients with health anxiety
Up to 20% of patients in medical settings experience health anxiety.1,2 In DSM-IV-TR, this condition was called hypochondriasis, and its core feature was having a preoccupation with fears or the idea that one has a serious disease based on a misinterpretation of ≥1 bodily signs or symptoms despite undergoing appropriate medical evaluation.3 In DSM-5, hypochondriasis was removed, and somatic symptom disorder and illness anxiety disorder were introduced.1 Approximately 75% of patients with a previous diagnosis of hypochondriasis meet the diagnostic criteria for somatic symptom disorder, and approximately 25% meet the criteria for illness anxiety disorder.1 In clinical practice, the less pejorative and more commonly used term for these conditions is “health anxiety.”
Patients with health anxiety can be challenging to treat because they persist in believing they have an illness despite appropriate medical evaluation. Clinicians’ responses to such patients can range from feeling the need to do more to alleviate their suffering to strongly disliking them. Although these patients can elicit negative countertransference, we should remember that their lives are being adversely affected due to the substantial functional impairment they experience from their health worries. As psychiatrists, we can help our patients with health anxiety by employing the following strategies.
Maintain constant communication with other clinicians who manage the patient’s medical complaints. A clear line of communication with other clinicians can help minimize inconsistent or conflicting messages and potentially reduce splitting. This also can allow other clinicians to air their concerns, and for you to emphasize to them that patients with health anxiety can have an actual medical disease.
Allow patients to discuss their symptoms without interrupting them. This will help them understand that you are listening to them and taking their worries seriously.2 Elicit further discussion by asking them about2:
- their perception of their health
- how frequently they worry about their health
- fears about what could happen
- triggers for their worries
- how seriously they feel other clinicians regard their concerns
- behaviors they use to subdue their worries
- avoidance behaviors
- the impact their worries have on their lives.
Assess patients for the presence of comorbid mental health conditions such as anxiety disorders, mood disorders, psychotic disorders, personality disorders, and substance use disorders. Treating these conditions can help reduce your patients’ health anxiety–related distress and impairment.
Acknowledge that your patients’ symptoms are real to them and genuinely experienced.2 By focusing on worry as the most important symptom and recognizing how discomforting and serious that worry can be, you can validate your patients’ feelings and increase their motivation for continuing treatment.2
Avoid reassuring patients that they are medically healthy, because any relief your patients gain from this can quickly fade, and their anxiety may worsen.2 Instead, acknowledge their concerns by saying, “It’s clear that you are worried about your health. We have ways of helping this, and this will not affect any other treatment you are receiving.”2 This could allow your patients to recognize that they have health anxiety without believing that their medical problems will be disregarded or dismissed.2
Explain to patients that their perceptions could be symptoms of anxiety instead of an actual medical illness, equating health anxiety to a false alarm.2 Ask patients to summarize any information you present to them, because misinterpreting health information is a core feature of health anxiety.2
1. Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.
2. Hedman-Lagerlöf E, Tyrer P, Hague J, et al. Health anxiety. BMJ. 2019;364:I774. doi: 10.1136/bmj.I774.
3. Diagnostic and statistical manual of mental disorders. 4th ed, text rev. Washington, DC: American Psychiatric Association; 2000.
Up to 20% of patients in medical settings experience health anxiety.1,2 In DSM-IV-TR, this condition was called hypochondriasis, and its core feature was having a preoccupation with fears or the idea that one has a serious disease based on a misinterpretation of ≥1 bodily signs or symptoms despite undergoing appropriate medical evaluation.3 In DSM-5, hypochondriasis was removed, and somatic symptom disorder and illness anxiety disorder were introduced.1 Approximately 75% of patients with a previous diagnosis of hypochondriasis meet the diagnostic criteria for somatic symptom disorder, and approximately 25% meet the criteria for illness anxiety disorder.1 In clinical practice, the less pejorative and more commonly used term for these conditions is “health anxiety.”
Patients with health anxiety can be challenging to treat because they persist in believing they have an illness despite appropriate medical evaluation. Clinicians’ responses to such patients can range from feeling the need to do more to alleviate their suffering to strongly disliking them. Although these patients can elicit negative countertransference, we should remember that their lives are being adversely affected due to the substantial functional impairment they experience from their health worries. As psychiatrists, we can help our patients with health anxiety by employing the following strategies.
Maintain constant communication with other clinicians who manage the patient’s medical complaints. A clear line of communication with other clinicians can help minimize inconsistent or conflicting messages and potentially reduce splitting. This also can allow other clinicians to air their concerns, and for you to emphasize to them that patients with health anxiety can have an actual medical disease.
Allow patients to discuss their symptoms without interrupting them. This will help them understand that you are listening to them and taking their worries seriously.2 Elicit further discussion by asking them about2:
- their perception of their health
- how frequently they worry about their health
- fears about what could happen
- triggers for their worries
- how seriously they feel other clinicians regard their concerns
- behaviors they use to subdue their worries
- avoidance behaviors
- the impact their worries have on their lives.
Assess patients for the presence of comorbid mental health conditions such as anxiety disorders, mood disorders, psychotic disorders, personality disorders, and substance use disorders. Treating these conditions can help reduce your patients’ health anxiety–related distress and impairment.
Acknowledge that your patients’ symptoms are real to them and genuinely experienced.2 By focusing on worry as the most important symptom and recognizing how discomforting and serious that worry can be, you can validate your patients’ feelings and increase their motivation for continuing treatment.2
Avoid reassuring patients that they are medically healthy, because any relief your patients gain from this can quickly fade, and their anxiety may worsen.2 Instead, acknowledge their concerns by saying, “It’s clear that you are worried about your health. We have ways of helping this, and this will not affect any other treatment you are receiving.”2 This could allow your patients to recognize that they have health anxiety without believing that their medical problems will be disregarded or dismissed.2
Explain to patients that their perceptions could be symptoms of anxiety instead of an actual medical illness, equating health anxiety to a false alarm.2 Ask patients to summarize any information you present to them, because misinterpreting health information is a core feature of health anxiety.2
Up to 20% of patients in medical settings experience health anxiety.1,2 In DSM-IV-TR, this condition was called hypochondriasis, and its core feature was having a preoccupation with fears or the idea that one has a serious disease based on a misinterpretation of ≥1 bodily signs or symptoms despite undergoing appropriate medical evaluation.3 In DSM-5, hypochondriasis was removed, and somatic symptom disorder and illness anxiety disorder were introduced.1 Approximately 75% of patients with a previous diagnosis of hypochondriasis meet the diagnostic criteria for somatic symptom disorder, and approximately 25% meet the criteria for illness anxiety disorder.1 In clinical practice, the less pejorative and more commonly used term for these conditions is “health anxiety.”
Patients with health anxiety can be challenging to treat because they persist in believing they have an illness despite appropriate medical evaluation. Clinicians’ responses to such patients can range from feeling the need to do more to alleviate their suffering to strongly disliking them. Although these patients can elicit negative countertransference, we should remember that their lives are being adversely affected due to the substantial functional impairment they experience from their health worries. As psychiatrists, we can help our patients with health anxiety by employing the following strategies.
Maintain constant communication with other clinicians who manage the patient’s medical complaints. A clear line of communication with other clinicians can help minimize inconsistent or conflicting messages and potentially reduce splitting. This also can allow other clinicians to air their concerns, and for you to emphasize to them that patients with health anxiety can have an actual medical disease.
Allow patients to discuss their symptoms without interrupting them. This will help them understand that you are listening to them and taking their worries seriously.2 Elicit further discussion by asking them about2:
- their perception of their health
- how frequently they worry about their health
- fears about what could happen
- triggers for their worries
- how seriously they feel other clinicians regard their concerns
- behaviors they use to subdue their worries
- avoidance behaviors
- the impact their worries have on their lives.
Assess patients for the presence of comorbid mental health conditions such as anxiety disorders, mood disorders, psychotic disorders, personality disorders, and substance use disorders. Treating these conditions can help reduce your patients’ health anxiety–related distress and impairment.
Acknowledge that your patients’ symptoms are real to them and genuinely experienced.2 By focusing on worry as the most important symptom and recognizing how discomforting and serious that worry can be, you can validate your patients’ feelings and increase their motivation for continuing treatment.2
Avoid reassuring patients that they are medically healthy, because any relief your patients gain from this can quickly fade, and their anxiety may worsen.2 Instead, acknowledge their concerns by saying, “It’s clear that you are worried about your health. We have ways of helping this, and this will not affect any other treatment you are receiving.”2 This could allow your patients to recognize that they have health anxiety without believing that their medical problems will be disregarded or dismissed.2
Explain to patients that their perceptions could be symptoms of anxiety instead of an actual medical illness, equating health anxiety to a false alarm.2 Ask patients to summarize any information you present to them, because misinterpreting health information is a core feature of health anxiety.2
1. Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.
2. Hedman-Lagerlöf E, Tyrer P, Hague J, et al. Health anxiety. BMJ. 2019;364:I774. doi: 10.1136/bmj.I774.
3. Diagnostic and statistical manual of mental disorders. 4th ed, text rev. Washington, DC: American Psychiatric Association; 2000.
1. Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.
2. Hedman-Lagerlöf E, Tyrer P, Hague J, et al. Health anxiety. BMJ. 2019;364:I774. doi: 10.1136/bmj.I774.
3. Diagnostic and statistical manual of mental disorders. 4th ed, text rev. Washington, DC: American Psychiatric Association; 2000.
The power and promise of person-generated health data (Part II)
In Part I of our discussion we introduced the concept of person-generated health data (PGHD), defined as wellness and/or health-related data created, recorded, or gathered by individuals.
Such rich, longitudinal information is now being used in combination with traditional clinical information to predict, diagnose, and formulate treatment plans for diseases, as well as understand the safety and effectiveness of medical interventions.
Identifying a disease early
One novel example of digital technologies being used for early identification of disease was a promising 2019 study by Eli Lilly (in collaboration with Apple and Evidation Health) called the Lilly Exploratory Digital Assessment Study.
[embed:render:related:node:215691]
In this study, the feasibility of using PGHD for identifying physiological and behavioral signatures of cognitive impairment was examined for the purpose of seeking new methods to detect mild cognitive impairment (MCI) in a timely and cost-effective manner. The study enrolled 31 study participants with cognitive impairment and 82 without cognitive impairment. It used consumer-grade sensor technologies (the iPhone, Apple Watch, iPad, and Beddit sleep monitor) to continuously and unobtrusively collect data. Among the information the researchers collected were interaction with the phone keyboard, accelerometer data from the Apple Watch, volume of messages sent/received, and sleep cycles.1
A total of 16 terabytes of data were collected over the course of 12 weeks. Data were organized into a behaviorgram (See Figure 1) that gives a holistic picture of a day in a patient’s life. A machine learning model was used to distinguish between behaviorgrams of symptomatic versus healthy controls, identifying typing speed, circadian rhythm shifts, and reliance on helper apps, among other things, as differentiating cognitively impaired from healthy controls. These behaviorgrams may someday serve as “fingerprints” of different diseases, with specific diseases displaying predictable patterns. In the near future, digital measures like the ones investigated in this study are likely to be used to help clinicians predict and diagnose disease, as well as to better understand disease progression and treatment response.
Leading to better health outcomes
The potential of PGHD to detect diseases early and lead to better health outcomes is being investigated in the Heartline study, a collaboration between Johnson & Johnson and Apple, which is supported by Evidation.2
This study aims to enroll 150,000 adults age 65 years and over to analyze the impact of Apple Watch–based early detection of irregular heart rhythms consistent with atrial fibrillation (AFib). The researchers’ hypothesis is that jointly detecting atrial fibrillation early and providing cardiovascular health programs to new AFib patients, will lead to patients being treated by a medical provider for AFib that otherwise would not have been detected. This, in turn, would lead to these AFib patients decreasing their risks of stroke and other serious cardiovascular events, including death, the study authors speculated.
Presenting new challenges
While PGHD has the potential to help people, it also presents new challenges. It is highly sensitive and personal – it can be as identifying as DNA.3
The vast amount of data that PGHD can collect from interaction with consumer wearable devices poses serious privacy risks if done improperly. To address those risks, companies like Evidation have built in protections. Evidation has an app, Achievement, that has enlisted a connected population of more than 3.5 million members who earn rewards for performing health-related actions, as tracked by wearables devices and apps. Through the Achievement app (See Figure 2.), members are provided opportunities to join research studies. As part of these studies, data collected from sensors and apps is used by permission of the member so that it is clear how their data are contributing to specific research questions or use cases.
This is a collaborative model of data collection built upon trust and permission and is substantially different than the collection of data from electronic health records (EHRs) – which is typically aggregated, deidentified, and commercialized, often without the patients’ knowledge or consent. Stringent protections, explicit permission, and transparency are absolutely imperative until privacy frameworks for data outside of HIPAA regulation catches up and protects patients from discrimination and unintended uses of their data.
Large connected cohorts can help advance our understanding of public health. In one study run on Achievement during the 2017-2018 flu season, a survey was sent to the Achievement population every week asking about symptoms of influenza-like illness and requesting permission to access historical data from their wearable around the influenza-like illness event.4 With the data, it was possible to analyze patterns of activity, sleep, and resting heart rate change around flu events. Resting heart rate, in particular, is shown to increase during fever and at the population level. In fact, through the use of PGHD, it is possible to use the fraction of people with resting heart rate above their usual baseline as a proxy to quantify the number of infected people in a region.5 This resting heart rate–informed flu surveillance method, if refined to increased accuracy, can work in near real time. This means it may be able detect influenza outbreaks days earlier than current epidemiological methods.
Health data generated by connected populations are in the early stages of development. It is clear that it will yield novel insights into health and disease. Only time will tell if it will be able to help clinicians and patients better predict, diagnose, and formulate treatment plans for disease.
Neil Skolnik, M.D. is a professor of family and community medicine at Sidney Kimmel Medical College, Thomas Jefferson University, and associate director of the Family Medicine Residency Program at Abington Jefferson Health. Luca Foschini PhD, is co-founder & chief data scientist at Evidation Health. Bray Patrick-Lake, MFS, is a patient thought leader and director of strategic partnerships at Evidation Health.
References
1. Chen R et al. Developing measures of cognitive impairment in the real world from consumer-grade multimodal sensor streams. KDD ’19. August 4–8, 2019 Aug 4-8.
2. The Heartline Study. https://www.heartline.com.
3. Foschini L. Privacy of Wearable and Sensors Data (or, the Lack Thereof?). Data Driven Investor, Medium. 2019.
4. Bradshaw B et al. Influenza surveillance using wearable mobile health devices. Online J Public Health Inform. 2019;11(1):e249.
5. Radin JM et al. Harnessing wearable device data to improve state-level real-time surveillance of influenza-like illness in the USA: a population-based study. Lancet Digital Health. 2020. doi: 10.1016/S2589-7500(19)30222-5.
In Part I of our discussion we introduced the concept of person-generated health data (PGHD), defined as wellness and/or health-related data created, recorded, or gathered by individuals.
Such rich, longitudinal information is now being used in combination with traditional clinical information to predict, diagnose, and formulate treatment plans for diseases, as well as understand the safety and effectiveness of medical interventions.
Identifying a disease early
One novel example of digital technologies being used for early identification of disease was a promising 2019 study by Eli Lilly (in collaboration with Apple and Evidation Health) called the Lilly Exploratory Digital Assessment Study.
[embed:render:related:node:215691]
In this study, the feasibility of using PGHD for identifying physiological and behavioral signatures of cognitive impairment was examined for the purpose of seeking new methods to detect mild cognitive impairment (MCI) in a timely and cost-effective manner. The study enrolled 31 study participants with cognitive impairment and 82 without cognitive impairment. It used consumer-grade sensor technologies (the iPhone, Apple Watch, iPad, and Beddit sleep monitor) to continuously and unobtrusively collect data. Among the information the researchers collected were interaction with the phone keyboard, accelerometer data from the Apple Watch, volume of messages sent/received, and sleep cycles.1
A total of 16 terabytes of data were collected over the course of 12 weeks. Data were organized into a behaviorgram (See Figure 1) that gives a holistic picture of a day in a patient’s life. A machine learning model was used to distinguish between behaviorgrams of symptomatic versus healthy controls, identifying typing speed, circadian rhythm shifts, and reliance on helper apps, among other things, as differentiating cognitively impaired from healthy controls. These behaviorgrams may someday serve as “fingerprints” of different diseases, with specific diseases displaying predictable patterns. In the near future, digital measures like the ones investigated in this study are likely to be used to help clinicians predict and diagnose disease, as well as to better understand disease progression and treatment response.
Leading to better health outcomes
The potential of PGHD to detect diseases early and lead to better health outcomes is being investigated in the Heartline study, a collaboration between Johnson & Johnson and Apple, which is supported by Evidation.2
This study aims to enroll 150,000 adults age 65 years and over to analyze the impact of Apple Watch–based early detection of irregular heart rhythms consistent with atrial fibrillation (AFib). The researchers’ hypothesis is that jointly detecting atrial fibrillation early and providing cardiovascular health programs to new AFib patients, will lead to patients being treated by a medical provider for AFib that otherwise would not have been detected. This, in turn, would lead to these AFib patients decreasing their risks of stroke and other serious cardiovascular events, including death, the study authors speculated.
Presenting new challenges
While PGHD has the potential to help people, it also presents new challenges. It is highly sensitive and personal – it can be as identifying as DNA.3
The vast amount of data that PGHD can collect from interaction with consumer wearable devices poses serious privacy risks if done improperly. To address those risks, companies like Evidation have built in protections. Evidation has an app, Achievement, that has enlisted a connected population of more than 3.5 million members who earn rewards for performing health-related actions, as tracked by wearables devices and apps. Through the Achievement app (See Figure 2.), members are provided opportunities to join research studies. As part of these studies, data collected from sensors and apps is used by permission of the member so that it is clear how their data are contributing to specific research questions or use cases.
This is a collaborative model of data collection built upon trust and permission and is substantially different than the collection of data from electronic health records (EHRs) – which is typically aggregated, deidentified, and commercialized, often without the patients’ knowledge or consent. Stringent protections, explicit permission, and transparency are absolutely imperative until privacy frameworks for data outside of HIPAA regulation catches up and protects patients from discrimination and unintended uses of their data.
Large connected cohorts can help advance our understanding of public health. In one study run on Achievement during the 2017-2018 flu season, a survey was sent to the Achievement population every week asking about symptoms of influenza-like illness and requesting permission to access historical data from their wearable around the influenza-like illness event.4 With the data, it was possible to analyze patterns of activity, sleep, and resting heart rate change around flu events. Resting heart rate, in particular, is shown to increase during fever and at the population level. In fact, through the use of PGHD, it is possible to use the fraction of people with resting heart rate above their usual baseline as a proxy to quantify the number of infected people in a region.5 This resting heart rate–informed flu surveillance method, if refined to increased accuracy, can work in near real time. This means it may be able detect influenza outbreaks days earlier than current epidemiological methods.
Health data generated by connected populations are in the early stages of development. It is clear that it will yield novel insights into health and disease. Only time will tell if it will be able to help clinicians and patients better predict, diagnose, and formulate treatment plans for disease.
Neil Skolnik, M.D. is a professor of family and community medicine at Sidney Kimmel Medical College, Thomas Jefferson University, and associate director of the Family Medicine Residency Program at Abington Jefferson Health. Luca Foschini PhD, is co-founder & chief data scientist at Evidation Health. Bray Patrick-Lake, MFS, is a patient thought leader and director of strategic partnerships at Evidation Health.
References
1. Chen R et al. Developing measures of cognitive impairment in the real world from consumer-grade multimodal sensor streams. KDD ’19. August 4–8, 2019 Aug 4-8.
2. The Heartline Study. https://www.heartline.com.
3. Foschini L. Privacy of Wearable and Sensors Data (or, the Lack Thereof?). Data Driven Investor, Medium. 2019.
4. Bradshaw B et al. Influenza surveillance using wearable mobile health devices. Online J Public Health Inform. 2019;11(1):e249.
5. Radin JM et al. Harnessing wearable device data to improve state-level real-time surveillance of influenza-like illness in the USA: a population-based study. Lancet Digital Health. 2020. doi: 10.1016/S2589-7500(19)30222-5.
In Part I of our discussion we introduced the concept of person-generated health data (PGHD), defined as wellness and/or health-related data created, recorded, or gathered by individuals.
Such rich, longitudinal information is now being used in combination with traditional clinical information to predict, diagnose, and formulate treatment plans for diseases, as well as understand the safety and effectiveness of medical interventions.
Identifying a disease early
One novel example of digital technologies being used for early identification of disease was a promising 2019 study by Eli Lilly (in collaboration with Apple and Evidation Health) called the Lilly Exploratory Digital Assessment Study.
[embed:render:related:node:215691]
In this study, the feasibility of using PGHD for identifying physiological and behavioral signatures of cognitive impairment was examined for the purpose of seeking new methods to detect mild cognitive impairment (MCI) in a timely and cost-effective manner. The study enrolled 31 study participants with cognitive impairment and 82 without cognitive impairment. It used consumer-grade sensor technologies (the iPhone, Apple Watch, iPad, and Beddit sleep monitor) to continuously and unobtrusively collect data. Among the information the researchers collected were interaction with the phone keyboard, accelerometer data from the Apple Watch, volume of messages sent/received, and sleep cycles.1
A total of 16 terabytes of data were collected over the course of 12 weeks. Data were organized into a behaviorgram (See Figure 1) that gives a holistic picture of a day in a patient’s life. A machine learning model was used to distinguish between behaviorgrams of symptomatic versus healthy controls, identifying typing speed, circadian rhythm shifts, and reliance on helper apps, among other things, as differentiating cognitively impaired from healthy controls. These behaviorgrams may someday serve as “fingerprints” of different diseases, with specific diseases displaying predictable patterns. In the near future, digital measures like the ones investigated in this study are likely to be used to help clinicians predict and diagnose disease, as well as to better understand disease progression and treatment response.
Leading to better health outcomes
The potential of PGHD to detect diseases early and lead to better health outcomes is being investigated in the Heartline study, a collaboration between Johnson & Johnson and Apple, which is supported by Evidation.2
This study aims to enroll 150,000 adults age 65 years and over to analyze the impact of Apple Watch–based early detection of irregular heart rhythms consistent with atrial fibrillation (AFib). The researchers’ hypothesis is that jointly detecting atrial fibrillation early and providing cardiovascular health programs to new AFib patients, will lead to patients being treated by a medical provider for AFib that otherwise would not have been detected. This, in turn, would lead to these AFib patients decreasing their risks of stroke and other serious cardiovascular events, including death, the study authors speculated.
Presenting new challenges
While PGHD has the potential to help people, it also presents new challenges. It is highly sensitive and personal – it can be as identifying as DNA.3
The vast amount of data that PGHD can collect from interaction with consumer wearable devices poses serious privacy risks if done improperly. To address those risks, companies like Evidation have built in protections. Evidation has an app, Achievement, that has enlisted a connected population of more than 3.5 million members who earn rewards for performing health-related actions, as tracked by wearables devices and apps. Through the Achievement app (See Figure 2.), members are provided opportunities to join research studies. As part of these studies, data collected from sensors and apps is used by permission of the member so that it is clear how their data are contributing to specific research questions or use cases.
This is a collaborative model of data collection built upon trust and permission and is substantially different than the collection of data from electronic health records (EHRs) – which is typically aggregated, deidentified, and commercialized, often without the patients’ knowledge or consent. Stringent protections, explicit permission, and transparency are absolutely imperative until privacy frameworks for data outside of HIPAA regulation catches up and protects patients from discrimination and unintended uses of their data.
Large connected cohorts can help advance our understanding of public health. In one study run on Achievement during the 2017-2018 flu season, a survey was sent to the Achievement population every week asking about symptoms of influenza-like illness and requesting permission to access historical data from their wearable around the influenza-like illness event.4 With the data, it was possible to analyze patterns of activity, sleep, and resting heart rate change around flu events. Resting heart rate, in particular, is shown to increase during fever and at the population level. In fact, through the use of PGHD, it is possible to use the fraction of people with resting heart rate above their usual baseline as a proxy to quantify the number of infected people in a region.5 This resting heart rate–informed flu surveillance method, if refined to increased accuracy, can work in near real time. This means it may be able detect influenza outbreaks days earlier than current epidemiological methods.
Health data generated by connected populations are in the early stages of development. It is clear that it will yield novel insights into health and disease. Only time will tell if it will be able to help clinicians and patients better predict, diagnose, and formulate treatment plans for disease.
Neil Skolnik, M.D. is a professor of family and community medicine at Sidney Kimmel Medical College, Thomas Jefferson University, and associate director of the Family Medicine Residency Program at Abington Jefferson Health. Luca Foschini PhD, is co-founder & chief data scientist at Evidation Health. Bray Patrick-Lake, MFS, is a patient thought leader and director of strategic partnerships at Evidation Health.
References
1. Chen R et al. Developing measures of cognitive impairment in the real world from consumer-grade multimodal sensor streams. KDD ’19. August 4–8, 2019 Aug 4-8.
2. The Heartline Study. https://www.heartline.com.
3. Foschini L. Privacy of Wearable and Sensors Data (or, the Lack Thereof?). Data Driven Investor, Medium. 2019.
4. Bradshaw B et al. Influenza surveillance using wearable mobile health devices. Online J Public Health Inform. 2019;11(1):e249.
5. Radin JM et al. Harnessing wearable device data to improve state-level real-time surveillance of influenza-like illness in the USA: a population-based study. Lancet Digital Health. 2020. doi: 10.1016/S2589-7500(19)30222-5.
Is COVID-19 leading to a mental illness pandemic?
People living through this crisis are experiencing trauma
We are in the midst of an epidemic and possibly pandemic of anxiety and distress. The worry that folks have about themselves, families, finances, and work is overwhelming for millions.
I speak with people who report periods of racing thoughts jumping back in time and thinking of roads not taken. They also talk about their thoughts jumping forward with life plans of what they’ll do to change their lives in the future – if they survive COVID-19.
that is well-controlled with care (and even without care). Those people are suffering even more. Meanwhile, people with obsessive-compulsive disorder that had been under control appear to have worsened with the added stress.
Social distancing has disrupted our everyday routines. For many, there is no work, no spending time with people we care about, no going to movies or shows, no doing discretionary shopping, no going to school. Parents with children at home report frustration about balancing working from home with completing home-schooling packets. Physicians on the front lines of this unprecedented time report not having the proper protective equipment and worrying about the possibility of exposing their families to SARS-CoV-2.
We hear stories about the illness and even deaths of some young and middle-aged people with no underlying conditions, not to mention the loss of older adults. People are bursting into tears, and becoming easily frustrated and angry. Add in nightmares, ongoing anxiety states, insomnia, and decreased concentration.
We are seeing news reports of people stocking up on guns and ammunition and a case of one taking – and dying from – nonpharmaceutical grade chloroquine in an effort to prevent COVID-19.
I spoke with Juliana Tseng, PsyD, a clinical psychologist based in New York, and she said that the hype, half-truths, and false information from some outlets in the popular media are making things worse. Dr. Tseng added that the lack of coordination among local, state, and federal governments also is increasing fear and alienation.
As I see this period in time, my first thoughts are that we are witnessing a national epidemic of trauma. Specifically, what we have here is a clinical picture of PTSD.
PTSD is defined clearly as a traumatic disorder with a real or perceived fracture with life. Isolation (which we are creating as a way to “flatten the curve” or slow the spread of COVID-19), although that strategy is in our best personal and public health interests, is both painful and stressful. Frustration, flashbacks of past life experiences plus flashbacks of being ill are reported in people I’ve spoken with. Avoidance, even though it is planned in this instance, is part of the PTSD complex.
What can we as mental health professionals do to help alleviate this suffering?
First, of course, we must listen to the scientific experts and the data – and tell people to do the same. Most experts will say that COVID-19 is a mild or moderate illness for the vast majority of people. We also must encourage people to observe precautions outlined by the Centers for Disease Control and Prevention, such as distancing from people, hand washing, and avoiding those who are ill. Explain to people that, currently, there is no vaccine to prevent COVID-19. Treatment is mainly supportive, and some medication trials are being explored. However, we can empower people by helping them to develop skills aimed at increasing the ability to relax and focus on more positive aspects of life to break the chain of the stress and tension of anxiety as well as control the PTSD.
For more than 40 years, I have helped people master relaxation techniques and guided imagery. When taught properly, people are able to use these techniques on their own.
To begin, I teach people how to relax, using a simple three-point method:
- Get comfortable in a nice chair, and slowly count from one to three. At the count of one, do one thing: “roll your eyes up to the top of your head.”
- At the count of two, do two things, “close your lids on your eyes and take a deep breath.”
- At three, exhale slowly, relax your eyes, and concentrate on a restful feeling of floating.
- Do this for about 30 seconds to a minute.
- Count backward, from three to two to one and open your eyes.
The person will notice how nice and restful they will feel.
After that exercise, get the person to move to the graduate level and go beyond just relaxation. In the following exercise, people can go into a relaxed state by imagining a movie screen. Tell the person to do two things:
1. Look at the imagined movie screen and project on it any pleasant scene you wish; this is your screen. You will feel yourself becoming more and more relaxed. The person can do this one, two, three or whatever times a day. The exercise can last 1 minute or 5.
2. Incorporate the 1, 2, 3 relaxation described earlier, allowing yourself to float into this restful state and go to your movie screen. Now, on the screen, imagine a thick line down the center, and on the left side, project your worries and anxieties and fears. The idea is to see but not experience them. Then shift to the ride side of the screen, and again, visualize any pleasant scene you wish. Again, do this for 1 minute or 5 minutes, whatever works.
You will notice that the pleasant scene on the right will overcome the anxiety scene on the left, in that pleasantness, in most instances, overcomes anxiety. For many, these techniques have proved very useful – whether the problem is anxiety or fear – or both. In my experience, these techniques are a good beginning for controlling PTSD and successfully treating it.
We are in the midst of what could be the biggest public health crisis that America has faced since the 1918 pandemic, also known as the Spanish flu. The lockdowns, quarantines, and the myriad of other disruptions can lead to alienation. In fact, it would be strange for us not to experience strong emotions under these extreme conditions. Life will get better! In the meantime, let’s encourage people to hope, pray, and use relaxation techniques and guided imagery approaches to help control anxiety, worry, stress, and issues related to PTSD. These approaches can give our minds and bodies periods of relaxation and recovery, and ultimately, they can calm our minds.
Dr. London is a practicing psychiatrist and has been a newspaper columnist for 35 years, specializing in and writing about short-term therapy, including cognitive-behavioral therapy and guided imagery. He is author of “Find Freedom Fast” (New York: Kettlehole Publishing, 2019). He has no conflicts of interest.
People living through this crisis are experiencing trauma
People living through this crisis are experiencing trauma
We are in the midst of an epidemic and possibly pandemic of anxiety and distress. The worry that folks have about themselves, families, finances, and work is overwhelming for millions.
I speak with people who report periods of racing thoughts jumping back in time and thinking of roads not taken. They also talk about their thoughts jumping forward with life plans of what they’ll do to change their lives in the future – if they survive COVID-19.
that is well-controlled with care (and even without care). Those people are suffering even more. Meanwhile, people with obsessive-compulsive disorder that had been under control appear to have worsened with the added stress.
Social distancing has disrupted our everyday routines. For many, there is no work, no spending time with people we care about, no going to movies or shows, no doing discretionary shopping, no going to school. Parents with children at home report frustration about balancing working from home with completing home-schooling packets. Physicians on the front lines of this unprecedented time report not having the proper protective equipment and worrying about the possibility of exposing their families to SARS-CoV-2.
We hear stories about the illness and even deaths of some young and middle-aged people with no underlying conditions, not to mention the loss of older adults. People are bursting into tears, and becoming easily frustrated and angry. Add in nightmares, ongoing anxiety states, insomnia, and decreased concentration.
We are seeing news reports of people stocking up on guns and ammunition and a case of one taking – and dying from – nonpharmaceutical grade chloroquine in an effort to prevent COVID-19.
I spoke with Juliana Tseng, PsyD, a clinical psychologist based in New York, and she said that the hype, half-truths, and false information from some outlets in the popular media are making things worse. Dr. Tseng added that the lack of coordination among local, state, and federal governments also is increasing fear and alienation.
As I see this period in time, my first thoughts are that we are witnessing a national epidemic of trauma. Specifically, what we have here is a clinical picture of PTSD.
PTSD is defined clearly as a traumatic disorder with a real or perceived fracture with life. Isolation (which we are creating as a way to “flatten the curve” or slow the spread of COVID-19), although that strategy is in our best personal and public health interests, is both painful and stressful. Frustration, flashbacks of past life experiences plus flashbacks of being ill are reported in people I’ve spoken with. Avoidance, even though it is planned in this instance, is part of the PTSD complex.
What can we as mental health professionals do to help alleviate this suffering?
First, of course, we must listen to the scientific experts and the data – and tell people to do the same. Most experts will say that COVID-19 is a mild or moderate illness for the vast majority of people. We also must encourage people to observe precautions outlined by the Centers for Disease Control and Prevention, such as distancing from people, hand washing, and avoiding those who are ill. Explain to people that, currently, there is no vaccine to prevent COVID-19. Treatment is mainly supportive, and some medication trials are being explored. However, we can empower people by helping them to develop skills aimed at increasing the ability to relax and focus on more positive aspects of life to break the chain of the stress and tension of anxiety as well as control the PTSD.
For more than 40 years, I have helped people master relaxation techniques and guided imagery. When taught properly, people are able to use these techniques on their own.
To begin, I teach people how to relax, using a simple three-point method:
- Get comfortable in a nice chair, and slowly count from one to three. At the count of one, do one thing: “roll your eyes up to the top of your head.”
- At the count of two, do two things, “close your lids on your eyes and take a deep breath.”
- At three, exhale slowly, relax your eyes, and concentrate on a restful feeling of floating.
- Do this for about 30 seconds to a minute.
- Count backward, from three to two to one and open your eyes.
The person will notice how nice and restful they will feel.
After that exercise, get the person to move to the graduate level and go beyond just relaxation. In the following exercise, people can go into a relaxed state by imagining a movie screen. Tell the person to do two things:
1. Look at the imagined movie screen and project on it any pleasant scene you wish; this is your screen. You will feel yourself becoming more and more relaxed. The person can do this one, two, three or whatever times a day. The exercise can last 1 minute or 5.
2. Incorporate the 1, 2, 3 relaxation described earlier, allowing yourself to float into this restful state and go to your movie screen. Now, on the screen, imagine a thick line down the center, and on the left side, project your worries and anxieties and fears. The idea is to see but not experience them. Then shift to the ride side of the screen, and again, visualize any pleasant scene you wish. Again, do this for 1 minute or 5 minutes, whatever works.
You will notice that the pleasant scene on the right will overcome the anxiety scene on the left, in that pleasantness, in most instances, overcomes anxiety. For many, these techniques have proved very useful – whether the problem is anxiety or fear – or both. In my experience, these techniques are a good beginning for controlling PTSD and successfully treating it.
We are in the midst of what could be the biggest public health crisis that America has faced since the 1918 pandemic, also known as the Spanish flu. The lockdowns, quarantines, and the myriad of other disruptions can lead to alienation. In fact, it would be strange for us not to experience strong emotions under these extreme conditions. Life will get better! In the meantime, let’s encourage people to hope, pray, and use relaxation techniques and guided imagery approaches to help control anxiety, worry, stress, and issues related to PTSD. These approaches can give our minds and bodies periods of relaxation and recovery, and ultimately, they can calm our minds.
Dr. London is a practicing psychiatrist and has been a newspaper columnist for 35 years, specializing in and writing about short-term therapy, including cognitive-behavioral therapy and guided imagery. He is author of “Find Freedom Fast” (New York: Kettlehole Publishing, 2019). He has no conflicts of interest.
We are in the midst of an epidemic and possibly pandemic of anxiety and distress. The worry that folks have about themselves, families, finances, and work is overwhelming for millions.
I speak with people who report periods of racing thoughts jumping back in time and thinking of roads not taken. They also talk about their thoughts jumping forward with life plans of what they’ll do to change their lives in the future – if they survive COVID-19.
that is well-controlled with care (and even without care). Those people are suffering even more. Meanwhile, people with obsessive-compulsive disorder that had been under control appear to have worsened with the added stress.
Social distancing has disrupted our everyday routines. For many, there is no work, no spending time with people we care about, no going to movies or shows, no doing discretionary shopping, no going to school. Parents with children at home report frustration about balancing working from home with completing home-schooling packets. Physicians on the front lines of this unprecedented time report not having the proper protective equipment and worrying about the possibility of exposing their families to SARS-CoV-2.
We hear stories about the illness and even deaths of some young and middle-aged people with no underlying conditions, not to mention the loss of older adults. People are bursting into tears, and becoming easily frustrated and angry. Add in nightmares, ongoing anxiety states, insomnia, and decreased concentration.
We are seeing news reports of people stocking up on guns and ammunition and a case of one taking – and dying from – nonpharmaceutical grade chloroquine in an effort to prevent COVID-19.
I spoke with Juliana Tseng, PsyD, a clinical psychologist based in New York, and she said that the hype, half-truths, and false information from some outlets in the popular media are making things worse. Dr. Tseng added that the lack of coordination among local, state, and federal governments also is increasing fear and alienation.
As I see this period in time, my first thoughts are that we are witnessing a national epidemic of trauma. Specifically, what we have here is a clinical picture of PTSD.
PTSD is defined clearly as a traumatic disorder with a real or perceived fracture with life. Isolation (which we are creating as a way to “flatten the curve” or slow the spread of COVID-19), although that strategy is in our best personal and public health interests, is both painful and stressful. Frustration, flashbacks of past life experiences plus flashbacks of being ill are reported in people I’ve spoken with. Avoidance, even though it is planned in this instance, is part of the PTSD complex.
What can we as mental health professionals do to help alleviate this suffering?
First, of course, we must listen to the scientific experts and the data – and tell people to do the same. Most experts will say that COVID-19 is a mild or moderate illness for the vast majority of people. We also must encourage people to observe precautions outlined by the Centers for Disease Control and Prevention, such as distancing from people, hand washing, and avoiding those who are ill. Explain to people that, currently, there is no vaccine to prevent COVID-19. Treatment is mainly supportive, and some medication trials are being explored. However, we can empower people by helping them to develop skills aimed at increasing the ability to relax and focus on more positive aspects of life to break the chain of the stress and tension of anxiety as well as control the PTSD.
For more than 40 years, I have helped people master relaxation techniques and guided imagery. When taught properly, people are able to use these techniques on their own.
To begin, I teach people how to relax, using a simple three-point method:
- Get comfortable in a nice chair, and slowly count from one to three. At the count of one, do one thing: “roll your eyes up to the top of your head.”
- At the count of two, do two things, “close your lids on your eyes and take a deep breath.”
- At three, exhale slowly, relax your eyes, and concentrate on a restful feeling of floating.
- Do this for about 30 seconds to a minute.
- Count backward, from three to two to one and open your eyes.
The person will notice how nice and restful they will feel.
After that exercise, get the person to move to the graduate level and go beyond just relaxation. In the following exercise, people can go into a relaxed state by imagining a movie screen. Tell the person to do two things:
1. Look at the imagined movie screen and project on it any pleasant scene you wish; this is your screen. You will feel yourself becoming more and more relaxed. The person can do this one, two, three or whatever times a day. The exercise can last 1 minute or 5.
2. Incorporate the 1, 2, 3 relaxation described earlier, allowing yourself to float into this restful state and go to your movie screen. Now, on the screen, imagine a thick line down the center, and on the left side, project your worries and anxieties and fears. The idea is to see but not experience them. Then shift to the ride side of the screen, and again, visualize any pleasant scene you wish. Again, do this for 1 minute or 5 minutes, whatever works.
You will notice that the pleasant scene on the right will overcome the anxiety scene on the left, in that pleasantness, in most instances, overcomes anxiety. For many, these techniques have proved very useful – whether the problem is anxiety or fear – or both. In my experience, these techniques are a good beginning for controlling PTSD and successfully treating it.
We are in the midst of what could be the biggest public health crisis that America has faced since the 1918 pandemic, also known as the Spanish flu. The lockdowns, quarantines, and the myriad of other disruptions can lead to alienation. In fact, it would be strange for us not to experience strong emotions under these extreme conditions. Life will get better! In the meantime, let’s encourage people to hope, pray, and use relaxation techniques and guided imagery approaches to help control anxiety, worry, stress, and issues related to PTSD. These approaches can give our minds and bodies periods of relaxation and recovery, and ultimately, they can calm our minds.
Dr. London is a practicing psychiatrist and has been a newspaper columnist for 35 years, specializing in and writing about short-term therapy, including cognitive-behavioral therapy and guided imagery. He is author of “Find Freedom Fast” (New York: Kettlehole Publishing, 2019). He has no conflicts of interest.
COVID-19 guidance for children’s health care providers
We are in uncharted waters with national and local states of emergency, schools and most activities being shut down, and rapidly evolving strategies on managing the COVID-19 outbreak. Everyone’s anxiety is appropriately high. As health care providers for children, you are facing changes in your personal life at home and in practice, likely including setting up televisits, trying to assess which patients to see, managing staffing challenges, and facing potential cash flow issues as expenses continue but revenue may fall short. And, of course, you will address a host of novel questions and concerns from the families you care for.
Your top priorities are to stay calm while offering clear recommendations on testing, quarantine, and treatment with guidance from our federal and local public health agencies. By providing clear guidance on the medical issues, you will offer substantial reassurance to families. But even with a medical plan in place, this remains a confusing and anxiety-provoking moment, one without much precedent in most people’s lives or in our national experience. Our aim is to complement that guidance by offering you some principles to help families manage the stress and anxiety that the disruptions and uncertainties that this public health emergency has created.
Offer clear, open, regular, and child-centered communication
If you have an email mailing list of your parents, you may want to summarize information you are gathering with a note they can expect at a specified time each day. You could request them to email you questions that then can be included as an FAQ (frequently asked questions).
Most children will have noticed people wearing face masks, or dramatic scenes on the news with hospital workers in full protective gear, breathlessly reporting growing numbers of the infected and the deceased. At a minimum, they are being commanded to wash hands and to not touch their faces (which is challenging enough for adults!), and are probably overhearing conversations about quarantines and contagion as well as family concerns about jobs and family finances. Many children are managing extended school closures and some are even managing the quarantine or serious illness of a loved one. When children overhear frightening news from distressed adults, they are going to become anxious and afraid themselves. Parents should remember to find out what their children have seen, heard, or understood about what is going on, and they should correct misinformation or misunderstandings with clear explanations. They also should find out what their children are curious about. “What has you wondering about that?” is a great response when children have questions, in order to make sure you get at any underlying worry.
It is fine to not have an answer to every question. It is difficult to offer clear explanations about something that we don’t yet fully understand, and it is fine to acknowledge what we don’t know. “That’s a great question. Let’s look together at the CDC [Centers for Disease Control and Prevention] website.” Offering to look for answers or information together can be a powerful way to model how to handle uncertainty. And always couch answers with appropriate (not false) reassurance: “Children and young adults appear to be very safe from this illness, but we want to take care to protect those that are older or already sick.”
Remember most children set their anxiety level based on their parent’s anxiety, and part of being child centered in your communication includes offering information in an age-appropriate manner. Preschool-aged children (up to 5 years) still have magical thinking. They are prone to finding masks and gowns scary and to assume that school stopping may be because they did something wrong. Tell them about the new illness, and about the doctors and officials working hard to keep people safe. Reassure them about all of the adults working hard together to understand the illness and take care of people who are sick. Their sense of time is less logical, so you may have to tell them more than once. Reassure them that children do not get very sick from this illness, but they can carry and spread it, like having paint on their hands, so they need to wash their hands often to take good care of other people.
School-age children (aged roughly 5-12 years) are better equipped cognitively to understand the seriousness of this outbreak. They are built to master new situations, but are prone to anxiety as they don’t yet have the emotional maturity to tolerate uncertainty or unfairness. Explain what is known without euphemisms, be truly curious about what their questions are, and look for answers together. Often what they need is to see you being calm in the face of uncertainty, bearing the strong feelings that may come, and preserving curiosity and compassion for others.
Adolescents also will need all of this support, and can be curious about more abstract implications (political, ethical, financial). Do not be surprised when they ask sophisticated questions, but still are focused on the personal disruptions or sacrifices (a canceled dance or sports meet, concerns about academic performance). Adolescence is a time of intense preoccupation with their emerging identity and relationships; it is normal for them to experience events in a way that may seem selfish, especially if it disrupts their time with friends. Remind parents to offer compassion and validation, while acknowledging that shared sacrifice and discomfort are a part of every individual’s experience when a society must respond to such a large challenge.
Be mindful of children’s vulnerabilities
Being child centered goes beyond thinking about their age and developmental stage. Parents are the experts on their children and will know about any particular vulnerabilities to the stresses of this serious outbreak. Children who are prone to anxiety or suffer from anxiety disorders may be more prone to silent worry. It is especially important to check in with them often, find out what they know and what they are worried about, and remind them to “never worry alone.” It also is important to continue with any recommended treatment, avoiding accommodation of their anxieties, except when it is required by public health protocols (i.e., staying home from school). Children with developmental disabilities may require additional support to change behaviors (hand washing) and may be more sensitive to changes in routine. And children with learning disabilities or special services in school may require additional support or structure during a prolonged period at home.
Preserve routines and structure
Routines and predictability are important to the sense of stability and well-being of most children (and adults). While disruptions are unavoidable, preserve what routines you can, and establish some new ones. For children who are out of school for several weeks, set up a consistent home routine, with a similar wake-up and bedtime, and a “school schedule.” There may be academic activities like reading or work sheets. If the parents’ work is disrupted, they can homeschool, shoring up weak academic areas or enhancing areas of interest. Be sure to preserve time for physical activity and social connections within this new framework. Social time does not require physical proximity, and can happen by screen or phone. Physical activity should be outside if at all possible. Predictability, preserved expectations (academic and otherwise), physical exercise, social connection, and consistent sleep will go a long way in protecting everyone’s ability to manage the disruptions of this epidemic.
Find opportunity in the disruption
Many families have been on a treadmill of work, school, and activities that have left little unscheduled time or spontaneity. Recommend looking at this disruption as a rare opportunity to slow down, spend time together, listen, learn more about one another, and even to have fun. Families could play board games, card games, watch movies together, or even read aloud. They might discover it is the time to try new hobbies (knitting, learning a new language or instrument), or to teach each other new skills. You might learn something new, or something new about your children. You also will offer a model of finding the opportunity in adversity, and even offer them some wonderful memories from a difficult time.
Take care of the vulnerable and ease others’ hardships
Without a doubt, this will be a difficult time for many people, medically, financially, and emotionally. One powerful strategy to build resilience in our children and strengthen our communities is to think with children about ways to help those who are most at risk or burdened by this challenge. Perhaps they want to make cards or FaceTime calls to older relatives who may be otherwise isolated. They may want to consider ways to support the work of first responders, even just with appreciation. They may want to reach out to elderly neighbors and offer to get groceries or other needed supplies for them. Balancing appropriate self-care with a focus on the needs of those who are more vulnerable or burdened than ourselves is a powerful way to show our children how communities pull together in a challenging time; enhance their feeling of connectedness; and build resilience in them, in our families, and in our communities.
Dr. Swick is physician in chief at Ohana, Center for Child and Adolescent Behavioral Health, Community Hospital of the Monterey (Calif.) Peninsula. Dr. Jellinek is professor emeritus of psychiatry and pediatrics, Harvard Medical School, Boston. Email them at pdnews@mdedge.com
We are in uncharted waters with national and local states of emergency, schools and most activities being shut down, and rapidly evolving strategies on managing the COVID-19 outbreak. Everyone’s anxiety is appropriately high. As health care providers for children, you are facing changes in your personal life at home and in practice, likely including setting up televisits, trying to assess which patients to see, managing staffing challenges, and facing potential cash flow issues as expenses continue but revenue may fall short. And, of course, you will address a host of novel questions and concerns from the families you care for.
Your top priorities are to stay calm while offering clear recommendations on testing, quarantine, and treatment with guidance from our federal and local public health agencies. By providing clear guidance on the medical issues, you will offer substantial reassurance to families. But even with a medical plan in place, this remains a confusing and anxiety-provoking moment, one without much precedent in most people’s lives or in our national experience. Our aim is to complement that guidance by offering you some principles to help families manage the stress and anxiety that the disruptions and uncertainties that this public health emergency has created.
Offer clear, open, regular, and child-centered communication
If you have an email mailing list of your parents, you may want to summarize information you are gathering with a note they can expect at a specified time each day. You could request them to email you questions that then can be included as an FAQ (frequently asked questions).
Most children will have noticed people wearing face masks, or dramatic scenes on the news with hospital workers in full protective gear, breathlessly reporting growing numbers of the infected and the deceased. At a minimum, they are being commanded to wash hands and to not touch their faces (which is challenging enough for adults!), and are probably overhearing conversations about quarantines and contagion as well as family concerns about jobs and family finances. Many children are managing extended school closures and some are even managing the quarantine or serious illness of a loved one. When children overhear frightening news from distressed adults, they are going to become anxious and afraid themselves. Parents should remember to find out what their children have seen, heard, or understood about what is going on, and they should correct misinformation or misunderstandings with clear explanations. They also should find out what their children are curious about. “What has you wondering about that?” is a great response when children have questions, in order to make sure you get at any underlying worry.
It is fine to not have an answer to every question. It is difficult to offer clear explanations about something that we don’t yet fully understand, and it is fine to acknowledge what we don’t know. “That’s a great question. Let’s look together at the CDC [Centers for Disease Control and Prevention] website.” Offering to look for answers or information together can be a powerful way to model how to handle uncertainty. And always couch answers with appropriate (not false) reassurance: “Children and young adults appear to be very safe from this illness, but we want to take care to protect those that are older or already sick.”
Remember most children set their anxiety level based on their parent’s anxiety, and part of being child centered in your communication includes offering information in an age-appropriate manner. Preschool-aged children (up to 5 years) still have magical thinking. They are prone to finding masks and gowns scary and to assume that school stopping may be because they did something wrong. Tell them about the new illness, and about the doctors and officials working hard to keep people safe. Reassure them about all of the adults working hard together to understand the illness and take care of people who are sick. Their sense of time is less logical, so you may have to tell them more than once. Reassure them that children do not get very sick from this illness, but they can carry and spread it, like having paint on their hands, so they need to wash their hands often to take good care of other people.
School-age children (aged roughly 5-12 years) are better equipped cognitively to understand the seriousness of this outbreak. They are built to master new situations, but are prone to anxiety as they don’t yet have the emotional maturity to tolerate uncertainty or unfairness. Explain what is known without euphemisms, be truly curious about what their questions are, and look for answers together. Often what they need is to see you being calm in the face of uncertainty, bearing the strong feelings that may come, and preserving curiosity and compassion for others.
Adolescents also will need all of this support, and can be curious about more abstract implications (political, ethical, financial). Do not be surprised when they ask sophisticated questions, but still are focused on the personal disruptions or sacrifices (a canceled dance or sports meet, concerns about academic performance). Adolescence is a time of intense preoccupation with their emerging identity and relationships; it is normal for them to experience events in a way that may seem selfish, especially if it disrupts their time with friends. Remind parents to offer compassion and validation, while acknowledging that shared sacrifice and discomfort are a part of every individual’s experience when a society must respond to such a large challenge.
Be mindful of children’s vulnerabilities
Being child centered goes beyond thinking about their age and developmental stage. Parents are the experts on their children and will know about any particular vulnerabilities to the stresses of this serious outbreak. Children who are prone to anxiety or suffer from anxiety disorders may be more prone to silent worry. It is especially important to check in with them often, find out what they know and what they are worried about, and remind them to “never worry alone.” It also is important to continue with any recommended treatment, avoiding accommodation of their anxieties, except when it is required by public health protocols (i.e., staying home from school). Children with developmental disabilities may require additional support to change behaviors (hand washing) and may be more sensitive to changes in routine. And children with learning disabilities or special services in school may require additional support or structure during a prolonged period at home.
Preserve routines and structure
Routines and predictability are important to the sense of stability and well-being of most children (and adults). While disruptions are unavoidable, preserve what routines you can, and establish some new ones. For children who are out of school for several weeks, set up a consistent home routine, with a similar wake-up and bedtime, and a “school schedule.” There may be academic activities like reading or work sheets. If the parents’ work is disrupted, they can homeschool, shoring up weak academic areas or enhancing areas of interest. Be sure to preserve time for physical activity and social connections within this new framework. Social time does not require physical proximity, and can happen by screen or phone. Physical activity should be outside if at all possible. Predictability, preserved expectations (academic and otherwise), physical exercise, social connection, and consistent sleep will go a long way in protecting everyone’s ability to manage the disruptions of this epidemic.
Find opportunity in the disruption
Many families have been on a treadmill of work, school, and activities that have left little unscheduled time or spontaneity. Recommend looking at this disruption as a rare opportunity to slow down, spend time together, listen, learn more about one another, and even to have fun. Families could play board games, card games, watch movies together, or even read aloud. They might discover it is the time to try new hobbies (knitting, learning a new language or instrument), or to teach each other new skills. You might learn something new, or something new about your children. You also will offer a model of finding the opportunity in adversity, and even offer them some wonderful memories from a difficult time.
Take care of the vulnerable and ease others’ hardships
Without a doubt, this will be a difficult time for many people, medically, financially, and emotionally. One powerful strategy to build resilience in our children and strengthen our communities is to think with children about ways to help those who are most at risk or burdened by this challenge. Perhaps they want to make cards or FaceTime calls to older relatives who may be otherwise isolated. They may want to consider ways to support the work of first responders, even just with appreciation. They may want to reach out to elderly neighbors and offer to get groceries or other needed supplies for them. Balancing appropriate self-care with a focus on the needs of those who are more vulnerable or burdened than ourselves is a powerful way to show our children how communities pull together in a challenging time; enhance their feeling of connectedness; and build resilience in them, in our families, and in our communities.
Dr. Swick is physician in chief at Ohana, Center for Child and Adolescent Behavioral Health, Community Hospital of the Monterey (Calif.) Peninsula. Dr. Jellinek is professor emeritus of psychiatry and pediatrics, Harvard Medical School, Boston. Email them at pdnews@mdedge.com
We are in uncharted waters with national and local states of emergency, schools and most activities being shut down, and rapidly evolving strategies on managing the COVID-19 outbreak. Everyone’s anxiety is appropriately high. As health care providers for children, you are facing changes in your personal life at home and in practice, likely including setting up televisits, trying to assess which patients to see, managing staffing challenges, and facing potential cash flow issues as expenses continue but revenue may fall short. And, of course, you will address a host of novel questions and concerns from the families you care for.
Your top priorities are to stay calm while offering clear recommendations on testing, quarantine, and treatment with guidance from our federal and local public health agencies. By providing clear guidance on the medical issues, you will offer substantial reassurance to families. But even with a medical plan in place, this remains a confusing and anxiety-provoking moment, one without much precedent in most people’s lives or in our national experience. Our aim is to complement that guidance by offering you some principles to help families manage the stress and anxiety that the disruptions and uncertainties that this public health emergency has created.
Offer clear, open, regular, and child-centered communication
If you have an email mailing list of your parents, you may want to summarize information you are gathering with a note they can expect at a specified time each day. You could request them to email you questions that then can be included as an FAQ (frequently asked questions).
Most children will have noticed people wearing face masks, or dramatic scenes on the news with hospital workers in full protective gear, breathlessly reporting growing numbers of the infected and the deceased. At a minimum, they are being commanded to wash hands and to not touch their faces (which is challenging enough for adults!), and are probably overhearing conversations about quarantines and contagion as well as family concerns about jobs and family finances. Many children are managing extended school closures and some are even managing the quarantine or serious illness of a loved one. When children overhear frightening news from distressed adults, they are going to become anxious and afraid themselves. Parents should remember to find out what their children have seen, heard, or understood about what is going on, and they should correct misinformation or misunderstandings with clear explanations. They also should find out what their children are curious about. “What has you wondering about that?” is a great response when children have questions, in order to make sure you get at any underlying worry.
It is fine to not have an answer to every question. It is difficult to offer clear explanations about something that we don’t yet fully understand, and it is fine to acknowledge what we don’t know. “That’s a great question. Let’s look together at the CDC [Centers for Disease Control and Prevention] website.” Offering to look for answers or information together can be a powerful way to model how to handle uncertainty. And always couch answers with appropriate (not false) reassurance: “Children and young adults appear to be very safe from this illness, but we want to take care to protect those that are older or already sick.”
Remember most children set their anxiety level based on their parent’s anxiety, and part of being child centered in your communication includes offering information in an age-appropriate manner. Preschool-aged children (up to 5 years) still have magical thinking. They are prone to finding masks and gowns scary and to assume that school stopping may be because they did something wrong. Tell them about the new illness, and about the doctors and officials working hard to keep people safe. Reassure them about all of the adults working hard together to understand the illness and take care of people who are sick. Their sense of time is less logical, so you may have to tell them more than once. Reassure them that children do not get very sick from this illness, but they can carry and spread it, like having paint on their hands, so they need to wash their hands often to take good care of other people.
School-age children (aged roughly 5-12 years) are better equipped cognitively to understand the seriousness of this outbreak. They are built to master new situations, but are prone to anxiety as they don’t yet have the emotional maturity to tolerate uncertainty or unfairness. Explain what is known without euphemisms, be truly curious about what their questions are, and look for answers together. Often what they need is to see you being calm in the face of uncertainty, bearing the strong feelings that may come, and preserving curiosity and compassion for others.
Adolescents also will need all of this support, and can be curious about more abstract implications (political, ethical, financial). Do not be surprised when they ask sophisticated questions, but still are focused on the personal disruptions or sacrifices (a canceled dance or sports meet, concerns about academic performance). Adolescence is a time of intense preoccupation with their emerging identity and relationships; it is normal for them to experience events in a way that may seem selfish, especially if it disrupts their time with friends. Remind parents to offer compassion and validation, while acknowledging that shared sacrifice and discomfort are a part of every individual’s experience when a society must respond to such a large challenge.
Be mindful of children’s vulnerabilities
Being child centered goes beyond thinking about their age and developmental stage. Parents are the experts on their children and will know about any particular vulnerabilities to the stresses of this serious outbreak. Children who are prone to anxiety or suffer from anxiety disorders may be more prone to silent worry. It is especially important to check in with them often, find out what they know and what they are worried about, and remind them to “never worry alone.” It also is important to continue with any recommended treatment, avoiding accommodation of their anxieties, except when it is required by public health protocols (i.e., staying home from school). Children with developmental disabilities may require additional support to change behaviors (hand washing) and may be more sensitive to changes in routine. And children with learning disabilities or special services in school may require additional support or structure during a prolonged period at home.
Preserve routines and structure
Routines and predictability are important to the sense of stability and well-being of most children (and adults). While disruptions are unavoidable, preserve what routines you can, and establish some new ones. For children who are out of school for several weeks, set up a consistent home routine, with a similar wake-up and bedtime, and a “school schedule.” There may be academic activities like reading or work sheets. If the parents’ work is disrupted, they can homeschool, shoring up weak academic areas or enhancing areas of interest. Be sure to preserve time for physical activity and social connections within this new framework. Social time does not require physical proximity, and can happen by screen or phone. Physical activity should be outside if at all possible. Predictability, preserved expectations (academic and otherwise), physical exercise, social connection, and consistent sleep will go a long way in protecting everyone’s ability to manage the disruptions of this epidemic.
Find opportunity in the disruption
Many families have been on a treadmill of work, school, and activities that have left little unscheduled time or spontaneity. Recommend looking at this disruption as a rare opportunity to slow down, spend time together, listen, learn more about one another, and even to have fun. Families could play board games, card games, watch movies together, or even read aloud. They might discover it is the time to try new hobbies (knitting, learning a new language or instrument), or to teach each other new skills. You might learn something new, or something new about your children. You also will offer a model of finding the opportunity in adversity, and even offer them some wonderful memories from a difficult time.
Take care of the vulnerable and ease others’ hardships
Without a doubt, this will be a difficult time for many people, medically, financially, and emotionally. One powerful strategy to build resilience in our children and strengthen our communities is to think with children about ways to help those who are most at risk or burdened by this challenge. Perhaps they want to make cards or FaceTime calls to older relatives who may be otherwise isolated. They may want to consider ways to support the work of first responders, even just with appreciation. They may want to reach out to elderly neighbors and offer to get groceries or other needed supplies for them. Balancing appropriate self-care with a focus on the needs of those who are more vulnerable or burdened than ourselves is a powerful way to show our children how communities pull together in a challenging time; enhance their feeling of connectedness; and build resilience in them, in our families, and in our communities.
Dr. Swick is physician in chief at Ohana, Center for Child and Adolescent Behavioral Health, Community Hospital of the Monterey (Calif.) Peninsula. Dr. Jellinek is professor emeritus of psychiatry and pediatrics, Harvard Medical School, Boston. Email them at pdnews@mdedge.com
Loneliness, social isolation in seniors need urgent attention
Health care systems need to take urgent action to address social isolation and loneliness among U.S. seniors, experts say.
A new report from the National Academies of Sciences, Engineering, and Medicine (NAS) points out that social isolation in this population is a major public health concern that contributes to heart disease, depression, and premature death.
The report authors note that the health care system remains an underused partner in preventing, identifying, and intervening in social isolation and loneliness among adults over age 50.
For seniors who are homebound, have no family, or do not belong to community or faith groups, a medical appointment or home health visit may be one of the few social interactions they have, the report notes.
Health care providers and systems may be “first responders” in recognizing lonely or socially isolated patients, committee chair Dan Blazer, MD, from Duke University School of Medicine, Durham, N.C., said during a press briefing.
As deadly as obesity, smoking
Committee member Julianne Holt-Lunstad, PhD, from Brigham Young University, Provo, Utah, noted that social isolation and loneliness are “distinctly different.”
Social isolation is defined as an objective lack of (or limited) social connections, while loneliness is a subjective perception of social isolation or the subjective feeling of being lonely.
Not all older adults are isolated or lonely, but they are more likely to face predisposing factors such as living alone and the loss of loved ones, she explained.
The issue may be compounded for LGBT, minority, and immigrant older adults, who may already face barriers to care, stigma, and discrimination. Social isolation and loneliness may also directly stem from chronic illness, hearing or vision loss, or mobility issues. In these cases, health care providers might be able to help prevent or reduce social isolation and loneliness by directly addressing the underlying health-related causes.
Holt-Lunstad told the briefing. The report offers a vision for how the health care system can identify people at risk of social isolation and loneliness, intervene, and engage other community partners.
It recommends that providers use validated tools to periodically assess patients who may be at risk for social isolation and loneliness and connect them to community resources for help.
The report also calls for greater education and training among health providers. Schools of health professions and training programs for direct care workers (eg, home health aides, nurse aides, and personal care aides) should incorporate social isolation and loneliness in their curricula, the report says.
It also offers recommendations for leveraging digital health and health technology, improving community partnerships, increasing funding for research, and creation of a national resource center under the Department of Health and Human Services.
Blazer said there remains “much to be learned” about what approaches to mitigating social isolation and loneliness work best in which populations.
The report, from the Committee on the Health and Medical Dimensions of Social Isolation and Loneliness in Older Adults, was sponsored by the AARP Foundation.
This article first appeared on Medscape.com.
Health care systems need to take urgent action to address social isolation and loneliness among U.S. seniors, experts say.
A new report from the National Academies of Sciences, Engineering, and Medicine (NAS) points out that social isolation in this population is a major public health concern that contributes to heart disease, depression, and premature death.
The report authors note that the health care system remains an underused partner in preventing, identifying, and intervening in social isolation and loneliness among adults over age 50.
For seniors who are homebound, have no family, or do not belong to community or faith groups, a medical appointment or home health visit may be one of the few social interactions they have, the report notes.
Health care providers and systems may be “first responders” in recognizing lonely or socially isolated patients, committee chair Dan Blazer, MD, from Duke University School of Medicine, Durham, N.C., said during a press briefing.
As deadly as obesity, smoking
Committee member Julianne Holt-Lunstad, PhD, from Brigham Young University, Provo, Utah, noted that social isolation and loneliness are “distinctly different.”
Social isolation is defined as an objective lack of (or limited) social connections, while loneliness is a subjective perception of social isolation or the subjective feeling of being lonely.
Not all older adults are isolated or lonely, but they are more likely to face predisposing factors such as living alone and the loss of loved ones, she explained.
The issue may be compounded for LGBT, minority, and immigrant older adults, who may already face barriers to care, stigma, and discrimination. Social isolation and loneliness may also directly stem from chronic illness, hearing or vision loss, or mobility issues. In these cases, health care providers might be able to help prevent or reduce social isolation and loneliness by directly addressing the underlying health-related causes.
Holt-Lunstad told the briefing. The report offers a vision for how the health care system can identify people at risk of social isolation and loneliness, intervene, and engage other community partners.
It recommends that providers use validated tools to periodically assess patients who may be at risk for social isolation and loneliness and connect them to community resources for help.
The report also calls for greater education and training among health providers. Schools of health professions and training programs for direct care workers (eg, home health aides, nurse aides, and personal care aides) should incorporate social isolation and loneliness in their curricula, the report says.
It also offers recommendations for leveraging digital health and health technology, improving community partnerships, increasing funding for research, and creation of a national resource center under the Department of Health and Human Services.
Blazer said there remains “much to be learned” about what approaches to mitigating social isolation and loneliness work best in which populations.
The report, from the Committee on the Health and Medical Dimensions of Social Isolation and Loneliness in Older Adults, was sponsored by the AARP Foundation.
This article first appeared on Medscape.com.
Health care systems need to take urgent action to address social isolation and loneliness among U.S. seniors, experts say.
A new report from the National Academies of Sciences, Engineering, and Medicine (NAS) points out that social isolation in this population is a major public health concern that contributes to heart disease, depression, and premature death.
The report authors note that the health care system remains an underused partner in preventing, identifying, and intervening in social isolation and loneliness among adults over age 50.
For seniors who are homebound, have no family, or do not belong to community or faith groups, a medical appointment or home health visit may be one of the few social interactions they have, the report notes.
Health care providers and systems may be “first responders” in recognizing lonely or socially isolated patients, committee chair Dan Blazer, MD, from Duke University School of Medicine, Durham, N.C., said during a press briefing.
As deadly as obesity, smoking
Committee member Julianne Holt-Lunstad, PhD, from Brigham Young University, Provo, Utah, noted that social isolation and loneliness are “distinctly different.”
Social isolation is defined as an objective lack of (or limited) social connections, while loneliness is a subjective perception of social isolation or the subjective feeling of being lonely.
Not all older adults are isolated or lonely, but they are more likely to face predisposing factors such as living alone and the loss of loved ones, she explained.
The issue may be compounded for LGBT, minority, and immigrant older adults, who may already face barriers to care, stigma, and discrimination. Social isolation and loneliness may also directly stem from chronic illness, hearing or vision loss, or mobility issues. In these cases, health care providers might be able to help prevent or reduce social isolation and loneliness by directly addressing the underlying health-related causes.
Holt-Lunstad told the briefing. The report offers a vision for how the health care system can identify people at risk of social isolation and loneliness, intervene, and engage other community partners.
It recommends that providers use validated tools to periodically assess patients who may be at risk for social isolation and loneliness and connect them to community resources for help.
The report also calls for greater education and training among health providers. Schools of health professions and training programs for direct care workers (eg, home health aides, nurse aides, and personal care aides) should incorporate social isolation and loneliness in their curricula, the report says.
It also offers recommendations for leveraging digital health and health technology, improving community partnerships, increasing funding for research, and creation of a national resource center under the Department of Health and Human Services.
Blazer said there remains “much to be learned” about what approaches to mitigating social isolation and loneliness work best in which populations.
The report, from the Committee on the Health and Medical Dimensions of Social Isolation and Loneliness in Older Adults, was sponsored by the AARP Foundation.
This article first appeared on Medscape.com.
An epidemic of fear and misinformation
As I write this, the 2019 novel coronavirus* continues to spread, exceeding 59,000 cases and 1,300 deaths worldwide. With it spreads fear. In the modern world of social media, misinformation spreads even faster than disease.
The news about a novel and deadly illness crowds out more substantial worries. Humans are not particularly good at assessing risk or responding rationally and consistently to it. Risk is hard to fully define. If you look up “risk” in Merriam Webster’s online dictionary, you get the simple definition of “possibility of loss or injury; peril.” If you look up risk in Wikipedia, you get 12 pages of explanation and 8 more pages of links and references.
People handle risk differently. Some people are more risk adverse than others. Some get a pleasurable thrill from risk, whether a slot machine or a parachute jump. Most people really don’t comprehend small probabilities, with tens of billions of dollars spent annually on U.S. lotteries.
Because 98% of people who get COVID-19 are recovering, this is not an extinction-level event or the zombie apocalypse. It is a major health hazard, and one where morbidity and mortality might be assuaged by an early and effective public health response, including the population’s adoption of good habits such as hand washing, cough etiquette, and staying home when ill.
Three key factors may help reduce the fear factor.
One key factor is accurate communication of health information to the public. This has been severely harmed in the last few years by the promotion of gossip on social media, such as Facebook, within newsfeeds without any vetting, along with a smaller component of deliberate misinformation from untraceable sources. Compare this situation with the decision in May 1988 when Surgeon General C. Everett Koop chose to snail mail a brochure on AIDS to every household in America. It was unprecedented. One element of this communication is the public’s belief that government and health care officials will responsibly and timely convey the information. There are accusations that the Chinese government initially impeded early warnings about COVID-19. Dr. Koop, to his great credit and lifesaving leadership, overcame queasiness within the Reagan administration about issues of morality and taste in discussing some of the HIV information. Alas, no similar leadership occurred in the decade of the 2010s when deaths from the opioid epidemic in the United States skyrocketed to claim more lives annually than car accidents or suicide.
A second factor is the credibility of the scientists. Antivaxxers, climate change deniers, and mercenary scientists have severely damaged that credibility of science, compared with the trust in scientists 50 years ago during the Apollo moon shot.
A third factor is perspective. Poor journalism and clickbait can focus excessively on the rare events as news. Airline crashes make the front page while fatal car accidents, claiming a hundred times more lives annually, don’t even merit a story in local media. Someone wins the lottery weekly but few pay attention to those suffering from gambling debts.
Influenza is killing many times more people than the 2019 novel coronavirus, but the news is focused on cruise ships. In the United States, influenza annually will strike tens of millions, with about 10 per 1,000 hospitalized and 0.5 per 1,000 dying. The novel coronavirus is more lethal. SARS (a coronavirus epidemic in 2003) had 8,000 cases with a mortality rate of 96 per 1,000 while the novel 2019 strain so far is killing about 20 per 1,000. That value may be an overestimate, because there may be a significant fraction of COVID-19 patients with symptoms mild enough that they do not seek medical care and do not get tested and counted.
For perspective, in 1952 the United States reported 50,000 cases of polio (meningitis or paralytic) annually with 3,000 deaths. As many as 95% of cases of poliovirus infection have no or mild symptoms and would not have been reported, so the case fatality rate estimate is skewed. In the 1950s, the United States averaged about 500,000 cases of measles per year, with about 500 deaths annually for a case fatality rate of about 1 per 1,000 in a population that was well nourished with good medical care. In malnourished children without access to modern health care, the case fatality rate can be as high as 100 per 1,000, which is why globally measles killed 142,000 people in 2018, a substantial improvement from 536,000 deaths globally in 2000, but still a leading killer of children worldwide. Vaccines had reduced the annual death toll of polio and measles in the U.S. to zero.
In comparison, in this country the annual incidences are about 70,000 overdose deaths, 50,000 suicides, and 40,000 traffic deaths.
Reassurance is the most common product sold by pediatricians. We look for low-probability, high-impact bad things. Usually we don’t find them and can reassure parents that the child will be okay. Sometimes we spot a higher-risk situation and intervene. My job is to worry professionally so that parents can worry less.
COVID-19 worries me, but irrational people worry me more. The real enemies are fear, disinformation, discrimination, and economic warfare.
Dr. Powell is a pediatric hospitalist and clinical ethics consultant living in St. Louis. Email him at pdnews@mdedge.com.
*This article was updated 2/21/2020.
As I write this, the 2019 novel coronavirus* continues to spread, exceeding 59,000 cases and 1,300 deaths worldwide. With it spreads fear. In the modern world of social media, misinformation spreads even faster than disease.
The news about a novel and deadly illness crowds out more substantial worries. Humans are not particularly good at assessing risk or responding rationally and consistently to it. Risk is hard to fully define. If you look up “risk” in Merriam Webster’s online dictionary, you get the simple definition of “possibility of loss or injury; peril.” If you look up risk in Wikipedia, you get 12 pages of explanation and 8 more pages of links and references.
People handle risk differently. Some people are more risk adverse than others. Some get a pleasurable thrill from risk, whether a slot machine or a parachute jump. Most people really don’t comprehend small probabilities, with tens of billions of dollars spent annually on U.S. lotteries.
Because 98% of people who get COVID-19 are recovering, this is not an extinction-level event or the zombie apocalypse. It is a major health hazard, and one where morbidity and mortality might be assuaged by an early and effective public health response, including the population’s adoption of good habits such as hand washing, cough etiquette, and staying home when ill.
Three key factors may help reduce the fear factor.
One key factor is accurate communication of health information to the public. This has been severely harmed in the last few years by the promotion of gossip on social media, such as Facebook, within newsfeeds without any vetting, along with a smaller component of deliberate misinformation from untraceable sources. Compare this situation with the decision in May 1988 when Surgeon General C. Everett Koop chose to snail mail a brochure on AIDS to every household in America. It was unprecedented. One element of this communication is the public’s belief that government and health care officials will responsibly and timely convey the information. There are accusations that the Chinese government initially impeded early warnings about COVID-19. Dr. Koop, to his great credit and lifesaving leadership, overcame queasiness within the Reagan administration about issues of morality and taste in discussing some of the HIV information. Alas, no similar leadership occurred in the decade of the 2010s when deaths from the opioid epidemic in the United States skyrocketed to claim more lives annually than car accidents or suicide.
A second factor is the credibility of the scientists. Antivaxxers, climate change deniers, and mercenary scientists have severely damaged that credibility of science, compared with the trust in scientists 50 years ago during the Apollo moon shot.
A third factor is perspective. Poor journalism and clickbait can focus excessively on the rare events as news. Airline crashes make the front page while fatal car accidents, claiming a hundred times more lives annually, don’t even merit a story in local media. Someone wins the lottery weekly but few pay attention to those suffering from gambling debts.
Influenza is killing many times more people than the 2019 novel coronavirus, but the news is focused on cruise ships. In the United States, influenza annually will strike tens of millions, with about 10 per 1,000 hospitalized and 0.5 per 1,000 dying. The novel coronavirus is more lethal. SARS (a coronavirus epidemic in 2003) had 8,000 cases with a mortality rate of 96 per 1,000 while the novel 2019 strain so far is killing about 20 per 1,000. That value may be an overestimate, because there may be a significant fraction of COVID-19 patients with symptoms mild enough that they do not seek medical care and do not get tested and counted.
For perspective, in 1952 the United States reported 50,000 cases of polio (meningitis or paralytic) annually with 3,000 deaths. As many as 95% of cases of poliovirus infection have no or mild symptoms and would not have been reported, so the case fatality rate estimate is skewed. In the 1950s, the United States averaged about 500,000 cases of measles per year, with about 500 deaths annually for a case fatality rate of about 1 per 1,000 in a population that was well nourished with good medical care. In malnourished children without access to modern health care, the case fatality rate can be as high as 100 per 1,000, which is why globally measles killed 142,000 people in 2018, a substantial improvement from 536,000 deaths globally in 2000, but still a leading killer of children worldwide. Vaccines had reduced the annual death toll of polio and measles in the U.S. to zero.
In comparison, in this country the annual incidences are about 70,000 overdose deaths, 50,000 suicides, and 40,000 traffic deaths.
Reassurance is the most common product sold by pediatricians. We look for low-probability, high-impact bad things. Usually we don’t find them and can reassure parents that the child will be okay. Sometimes we spot a higher-risk situation and intervene. My job is to worry professionally so that parents can worry less.
COVID-19 worries me, but irrational people worry me more. The real enemies are fear, disinformation, discrimination, and economic warfare.
Dr. Powell is a pediatric hospitalist and clinical ethics consultant living in St. Louis. Email him at pdnews@mdedge.com.
*This article was updated 2/21/2020.
As I write this, the 2019 novel coronavirus* continues to spread, exceeding 59,000 cases and 1,300 deaths worldwide. With it spreads fear. In the modern world of social media, misinformation spreads even faster than disease.
The news about a novel and deadly illness crowds out more substantial worries. Humans are not particularly good at assessing risk or responding rationally and consistently to it. Risk is hard to fully define. If you look up “risk” in Merriam Webster’s online dictionary, you get the simple definition of “possibility of loss or injury; peril.” If you look up risk in Wikipedia, you get 12 pages of explanation and 8 more pages of links and references.
People handle risk differently. Some people are more risk adverse than others. Some get a pleasurable thrill from risk, whether a slot machine or a parachute jump. Most people really don’t comprehend small probabilities, with tens of billions of dollars spent annually on U.S. lotteries.
Because 98% of people who get COVID-19 are recovering, this is not an extinction-level event or the zombie apocalypse. It is a major health hazard, and one where morbidity and mortality might be assuaged by an early and effective public health response, including the population’s adoption of good habits such as hand washing, cough etiquette, and staying home when ill.
Three key factors may help reduce the fear factor.
One key factor is accurate communication of health information to the public. This has been severely harmed in the last few years by the promotion of gossip on social media, such as Facebook, within newsfeeds without any vetting, along with a smaller component of deliberate misinformation from untraceable sources. Compare this situation with the decision in May 1988 when Surgeon General C. Everett Koop chose to snail mail a brochure on AIDS to every household in America. It was unprecedented. One element of this communication is the public’s belief that government and health care officials will responsibly and timely convey the information. There are accusations that the Chinese government initially impeded early warnings about COVID-19. Dr. Koop, to his great credit and lifesaving leadership, overcame queasiness within the Reagan administration about issues of morality and taste in discussing some of the HIV information. Alas, no similar leadership occurred in the decade of the 2010s when deaths from the opioid epidemic in the United States skyrocketed to claim more lives annually than car accidents or suicide.
A second factor is the credibility of the scientists. Antivaxxers, climate change deniers, and mercenary scientists have severely damaged that credibility of science, compared with the trust in scientists 50 years ago during the Apollo moon shot.
A third factor is perspective. Poor journalism and clickbait can focus excessively on the rare events as news. Airline crashes make the front page while fatal car accidents, claiming a hundred times more lives annually, don’t even merit a story in local media. Someone wins the lottery weekly but few pay attention to those suffering from gambling debts.
Influenza is killing many times more people than the 2019 novel coronavirus, but the news is focused on cruise ships. In the United States, influenza annually will strike tens of millions, with about 10 per 1,000 hospitalized and 0.5 per 1,000 dying. The novel coronavirus is more lethal. SARS (a coronavirus epidemic in 2003) had 8,000 cases with a mortality rate of 96 per 1,000 while the novel 2019 strain so far is killing about 20 per 1,000. That value may be an overestimate, because there may be a significant fraction of COVID-19 patients with symptoms mild enough that they do not seek medical care and do not get tested and counted.
For perspective, in 1952 the United States reported 50,000 cases of polio (meningitis or paralytic) annually with 3,000 deaths. As many as 95% of cases of poliovirus infection have no or mild symptoms and would not have been reported, so the case fatality rate estimate is skewed. In the 1950s, the United States averaged about 500,000 cases of measles per year, with about 500 deaths annually for a case fatality rate of about 1 per 1,000 in a population that was well nourished with good medical care. In malnourished children without access to modern health care, the case fatality rate can be as high as 100 per 1,000, which is why globally measles killed 142,000 people in 2018, a substantial improvement from 536,000 deaths globally in 2000, but still a leading killer of children worldwide. Vaccines had reduced the annual death toll of polio and measles in the U.S. to zero.
In comparison, in this country the annual incidences are about 70,000 overdose deaths, 50,000 suicides, and 40,000 traffic deaths.
Reassurance is the most common product sold by pediatricians. We look for low-probability, high-impact bad things. Usually we don’t find them and can reassure parents that the child will be okay. Sometimes we spot a higher-risk situation and intervene. My job is to worry professionally so that parents can worry less.
COVID-19 worries me, but irrational people worry me more. The real enemies are fear, disinformation, discrimination, and economic warfare.
Dr. Powell is a pediatric hospitalist and clinical ethics consultant living in St. Louis. Email him at pdnews@mdedge.com.
*This article was updated 2/21/2020.
Psoriasis: A look back over the past 50 years, and forward to next steps
Imagine a patient suffering with horrible psoriasis for decades having failed “every available treatment.” Imagine him living all that time with “flaking, cracking, painful, itchy skin,” only to develop cirrhosis after exposure to toxic therapies.
Then imagine the experience for that patient when, 2 weeks after initiating treatment with a new interleukin-17 inhibitor, his skin clears completely.
“Two weeks later it’s all gone – it was a moment to behold,” said Joel M. Gelfand, MD, professor of dermatology and epidemiology at the University of Pennsylvania, Philadelphia, who had cared for the man for many years before a psoriasis treatment revolution of sorts took the field of dermatology by storm.
“The progress has been breathtaking – there’s no other way to describe it – and it feels like a miracle every time I see a new patient who has tough disease and I have all these things to offer them,” he continued. “For most patients, I can really help them and make a major difference in their life.”
said Mark Lebwohl, MD, Waldman professor of dermatology and chair of the Kimberly and Eric J. Waldman department of dermatology at the Icahn School of Medicine at Mount Sinai, New York.
Dr. Lebwohl recounted some of his own experiences with psoriasis patients before the advent of treatments – particularly biologics – that have transformed practice.
There was a time when psoriasis patients had little more to turn to than the effective – but “disgusting” – Goeckerman Regimen involving cycles of UVB light exposure and topical crude coal tar application. Initially, the regimen, which was introduced in the 1920s, was used around the clock on an inpatient basis until the skin cleared, Dr. Lebwohl said.
In the 1970s, the immunosuppressive chemotherapy drug methotrexate became the first oral systemic therapy approved for severe psoriasis. For those with disabling disease, it offered some hope for relief, but only about 40% of patients achieved at least a 75% reduction in the Psoriasis Area and Severity Index score (PASI 75), he said, adding that they did so at the expense of the liver and bone marrow. “But it was the only thing we had for severe psoriasis other than light treatments.”
In the 1980s and 1990s, oral retinoids emerged as a treatment for psoriasis, and the immunosuppressive drug cyclosporine used to prevent organ rejection in some transplant patients was found to clear psoriasis in affected transplant recipients. Although they brought relief to some patients with severe, disabling disease, these also came with a high price. “It’s not that effective, and it has lots of side effects ... and causes kidney damage in essentially 100% of patients,” Dr. Lebwohl said of cyclosporine.
“So we had treatments that worked, but because the side effects were sufficiently severe, a lot of patients were not treated,” he said.
Enter the biologics era
The early 2000s brought the first two approvals for psoriasis: alefacept (Amevive), a “modestly effective, but quite safe” immunosuppressive dimeric fusion protein approved in early 2003 for moderate to severe plaque psoriasis, and efalizumab (Raptiva), a recombinant humanized monoclonal antibody approved in October 2003; both were T-cell–targeted therapies. The former was withdrawn from the market voluntarily as newer agents became available, and the latter was withdrawn in 2009 because of a link with development of progressive multifocal leukoencephalopathy.
Tumor necrosis factor (TNF) blockers, which had been used effectively for RA and Crohn’s disease, emerged next, and were highly effective, much safer than the systemic treatments, and gained “very widespread use,” Dr. Lebwohl said.
His colleague Alice B. Gottlieb, MD, PhD, was among the pioneers in the development of TNF blockers for the treatment of psoriasis. Her seminal, investigator-initiated paper on the efficacy and safety of infliximab (Remicade) monotherapy for plaque-type psoriasis published in the Lancet in 2001 helped launch the current era in which many psoriasis patients achieve 100% PASI responses with limited side effects, he said, explaining that subsequent research elucidated the role of IL-12 and -23 – leading to effective treatments like ustekinumab (Stelara), and later IL-17, which is, “in fact, the molecule closest to the pathogenesis of psoriasis.”
“If you block IL-17, you get rid of psoriasis,” he said, noting that there are now several companies with approved antibodies to IL-17. “Taltz [ixekizumab] and Cosentyx [secukinumab] are the leading ones, and Siliq [brodalumab] blocks the receptor for IL-17, so it is very effective.”
Another novel biologic – bimekizumab – is on the horizon. It blocks both IL-17a and IL-17f, and appears highly effective in psoriasis and psoriatic arthritis (PsA). “Biologics were the real start of the [psoriasis treatment] revolution,” he said. “When I started out I would speak at patient meetings and the patients were angry at their physicians; they thought they weren’t aggressive enough, they were very frustrated.”
Dr. Lebwohl described patients he would see at annual National Psoriasis Foundation meetings: “There were patients in wheel chairs, because they couldn’t walk. They would be red and scaly all over ... you could have literally swept up scale like it was snow after one of those meetings.
“You go forward to around 2010 – nobody’s in wheelchairs anymore, everybody has clear skin, and it’s become a party; patients are no longer angry – they are thrilled with the results they are getting from much safer and much more effective drugs,” he said. “So it’s been a pleasure taking care of those patients and going from a very difficult time of treating them, to a time where we’ve done a great job treating them.”
Dr. Lebwohl noted that a “large number of dermatologists have been involved with the development of these drugs and making sure they succeed, and that has also been a pleasure to see.”
Dr. Gottlieb, who Dr. Lebwohl has described as “a superstar” in the fields of dermatology and rheumatology, is one such researcher. In an interview, she looked back on her work and the ways that her work “opened the field,” led to many of her trainees also doing “great work,” and changed the lives of patients.
“It’s nice to feel that I really did change, fundamentally, how psoriasis patients are treated,” said Dr. Gottlieb, who is a clinical professor in the department of dermatology at the Icahn School of Medicine at Mount Sinai. “That obviously feels great.”
She recalled a patient – “a 6-foot-5 biker with bad psoriasis” – who “literally, the minute the door closed, he was crying about how horrible his disease was.”
“And I cleared him ... and then you get big hugs – it just feels extremely good ... giving somebody their life back,” she said.
Dr. Gottlieb has been involved in much of the work in developing biologics for psoriasis, including the ongoing work with bimekizumab for PsA as mentioned by Dr. Lebwohl.
If the phase 2 data with bimekizumab are replicated in the ongoing phase 3 trials now underway at her center, “that can really raise the bar ... so if it’s reproducible, it’s very exciting.”
“It’s exciting to have an IL-23 blocker that, at least in clinical trials, showed inhibition of radiographic progression [in PsA],” she said. “That’s guselkumab those data are already out, and I was involved with that.”
The early work of Dr. Gottlieb and others has also “spread to other diseases,” like hidradenitis suppurativa and atopic dermatitis, she said, noting that numerous studies are underway.
Aside from curing all patients, her ultimate goal is getting to a point where psoriasis has no effect on patients’ quality of life.
“And I see it already,” she said. “It’s happening, and it’s nice to see that it’s happening in children now, too; several of the drugs are approved in kids.”
Alan Menter, MD, chairman of the division of dermatology at Baylor University Medical Center, Dallas, also a prolific researcher – and chair of the guidelines committee that published two new sets of guidelines for psoriasis treatment in 2019 – said that the field of dermatology was “late to the biologic evolution,” as many of the early biologics were first approved for PsA.
“But over the last 10 years, things have changed dramatically,” he said. “After that we suddenly leapt ahead of everybody. ... We now have 11 biologic drugs approved for psoriasis, which is more than any other disease has available.”
It’s been “highly exciting” to see this “evolution and revolution,” he commented, adding that one of the next challenges is to address the comorbidities, such as cardiovascular disease, associated with psoriasis.
“The big question now ... is if you improve skin and you improve joints, can you potentially reduce the risk of coronary artery disease,” he said. “Everybody is looking at that, and to me it’s one of the most exciting things that we’re doing.”
Work is ongoing to look at whether the IL-17s and IL-23s have “other indications outside of the skin and joints,” both within and outside of dermatology.
Like Dr. Gottlieb, Dr. Menter also mentioned the potential for hidradenitis suppurativa, and also for a condition that is rarely discussed or studied: genital psoriasis. Ixekizumab has recently been shown to work in about 75% of patients with genital psoriasis, he noted.
Another important area of research is the identification of biomarkers for predicting response and relapse, he said. For now, biomarker research has disappointed, he added, predicting that it will take at least 3-5 years before biomarkers to help guide treatment are identified.
Indeed, Dr. Gelfand, who also is director of the Psoriasis and Phototherapy Treatment Center, vice chair of clinical research, and medical director of the dermatology clinical studies unit at the University of Pennsylvania, agreed there is a need for research to improve treatment selection.
Advances are being made in genetics – with more than 80 different genes now identified as being related to psoriasis – and in medical informatics – which allow thousands of patients to be followed for years, he said, noting that this could elucidate immunopathological features that can improve treatments, predict and prevent comorbidity, and further improve outcomes.
“We also need care that is more patient centered,” he said, describing the ongoing pragmatic LITE trial of home- or office-based phototherapy for which he is the lead investigator, and other studies that he hopes will expand access to care.
Kenneth Brian Gordon, MD, chair and professor of dermatology at the Medical College of Wisconsin, Milwaukee, whose career started in the basic science immunology arena, added the need for expanding benefit to patients with more-moderate disease. Like Dr. Menter, he identified psoriasis as the area in medicine that has had the greatest degree of advancement, except perhaps for hepatitis C.
He described the process not as a “bench-to-bedside” story, but as a bedside-to-bench, then “back-to-bedside” story.
It was really about taking those early T-cell–targeted biologics and anti-TNF agents from bedside to bench with the realization of the importance of the IL-23 and IL-17 pathways, and that understanding led back to the bedside with the development of the newest agents – and to a “huge difference in patient’s lives.”
“But we’ve gotten so good at treating patients with severe disease ... the question now is how to take care of those with more-moderate disease,” he said, noting that a focus on cost and better delivery systems will be needed for that population.
That research is underway, and the future looks bright – and clear.
“I think with psoriasis therapy and where we’ve come in the last 20 years ... we have a hard time remembering what it was like before we had biologic agents” he said. “Our perspective has changed a lot, and sometimes we forget that.”
In fact, “psoriasis has sort of dragged dermatology into the world of modern clinical trial science, and we can now apply that to all sorts of other diseases,” he said. “The psoriasis trials were the first really well-done large-scale trials in dermatology, and I think that has given dermatology a real leg up in how we do clinical research and how we do evidence-based medicine.”
All of the doctors interviewed for this story have received funds and/or honoraria from, consulted with, are employed with, or served on the advisory boards of manufacturers of biologics. Dr. Gelfand is a copatent holder of resiquimod for treatment of cutaneous T-cell lymphoma and is deputy editor of the Journal of Investigative Dermatology.
Imagine a patient suffering with horrible psoriasis for decades having failed “every available treatment.” Imagine him living all that time with “flaking, cracking, painful, itchy skin,” only to develop cirrhosis after exposure to toxic therapies.
Then imagine the experience for that patient when, 2 weeks after initiating treatment with a new interleukin-17 inhibitor, his skin clears completely.
“Two weeks later it’s all gone – it was a moment to behold,” said Joel M. Gelfand, MD, professor of dermatology and epidemiology at the University of Pennsylvania, Philadelphia, who had cared for the man for many years before a psoriasis treatment revolution of sorts took the field of dermatology by storm.
“The progress has been breathtaking – there’s no other way to describe it – and it feels like a miracle every time I see a new patient who has tough disease and I have all these things to offer them,” he continued. “For most patients, I can really help them and make a major difference in their life.”
said Mark Lebwohl, MD, Waldman professor of dermatology and chair of the Kimberly and Eric J. Waldman department of dermatology at the Icahn School of Medicine at Mount Sinai, New York.
Dr. Lebwohl recounted some of his own experiences with psoriasis patients before the advent of treatments – particularly biologics – that have transformed practice.
There was a time when psoriasis patients had little more to turn to than the effective – but “disgusting” – Goeckerman Regimen involving cycles of UVB light exposure and topical crude coal tar application. Initially, the regimen, which was introduced in the 1920s, was used around the clock on an inpatient basis until the skin cleared, Dr. Lebwohl said.
In the 1970s, the immunosuppressive chemotherapy drug methotrexate became the first oral systemic therapy approved for severe psoriasis. For those with disabling disease, it offered some hope for relief, but only about 40% of patients achieved at least a 75% reduction in the Psoriasis Area and Severity Index score (PASI 75), he said, adding that they did so at the expense of the liver and bone marrow. “But it was the only thing we had for severe psoriasis other than light treatments.”
In the 1980s and 1990s, oral retinoids emerged as a treatment for psoriasis, and the immunosuppressive drug cyclosporine used to prevent organ rejection in some transplant patients was found to clear psoriasis in affected transplant recipients. Although they brought relief to some patients with severe, disabling disease, these also came with a high price. “It’s not that effective, and it has lots of side effects ... and causes kidney damage in essentially 100% of patients,” Dr. Lebwohl said of cyclosporine.
“So we had treatments that worked, but because the side effects were sufficiently severe, a lot of patients were not treated,” he said.
Enter the biologics era
The early 2000s brought the first two approvals for psoriasis: alefacept (Amevive), a “modestly effective, but quite safe” immunosuppressive dimeric fusion protein approved in early 2003 for moderate to severe plaque psoriasis, and efalizumab (Raptiva), a recombinant humanized monoclonal antibody approved in October 2003; both were T-cell–targeted therapies. The former was withdrawn from the market voluntarily as newer agents became available, and the latter was withdrawn in 2009 because of a link with development of progressive multifocal leukoencephalopathy.
Tumor necrosis factor (TNF) blockers, which had been used effectively for RA and Crohn’s disease, emerged next, and were highly effective, much safer than the systemic treatments, and gained “very widespread use,” Dr. Lebwohl said.
His colleague Alice B. Gottlieb, MD, PhD, was among the pioneers in the development of TNF blockers for the treatment of psoriasis. Her seminal, investigator-initiated paper on the efficacy and safety of infliximab (Remicade) monotherapy for plaque-type psoriasis published in the Lancet in 2001 helped launch the current era in which many psoriasis patients achieve 100% PASI responses with limited side effects, he said, explaining that subsequent research elucidated the role of IL-12 and -23 – leading to effective treatments like ustekinumab (Stelara), and later IL-17, which is, “in fact, the molecule closest to the pathogenesis of psoriasis.”
“If you block IL-17, you get rid of psoriasis,” he said, noting that there are now several companies with approved antibodies to IL-17. “Taltz [ixekizumab] and Cosentyx [secukinumab] are the leading ones, and Siliq [brodalumab] blocks the receptor for IL-17, so it is very effective.”
Another novel biologic – bimekizumab – is on the horizon. It blocks both IL-17a and IL-17f, and appears highly effective in psoriasis and psoriatic arthritis (PsA). “Biologics were the real start of the [psoriasis treatment] revolution,” he said. “When I started out I would speak at patient meetings and the patients were angry at their physicians; they thought they weren’t aggressive enough, they were very frustrated.”
Dr. Lebwohl described patients he would see at annual National Psoriasis Foundation meetings: “There were patients in wheel chairs, because they couldn’t walk. They would be red and scaly all over ... you could have literally swept up scale like it was snow after one of those meetings.
“You go forward to around 2010 – nobody’s in wheelchairs anymore, everybody has clear skin, and it’s become a party; patients are no longer angry – they are thrilled with the results they are getting from much safer and much more effective drugs,” he said. “So it’s been a pleasure taking care of those patients and going from a very difficult time of treating them, to a time where we’ve done a great job treating them.”
Dr. Lebwohl noted that a “large number of dermatologists have been involved with the development of these drugs and making sure they succeed, and that has also been a pleasure to see.”
Dr. Gottlieb, who Dr. Lebwohl has described as “a superstar” in the fields of dermatology and rheumatology, is one such researcher. In an interview, she looked back on her work and the ways that her work “opened the field,” led to many of her trainees also doing “great work,” and changed the lives of patients.
“It’s nice to feel that I really did change, fundamentally, how psoriasis patients are treated,” said Dr. Gottlieb, who is a clinical professor in the department of dermatology at the Icahn School of Medicine at Mount Sinai. “That obviously feels great.”
She recalled a patient – “a 6-foot-5 biker with bad psoriasis” – who “literally, the minute the door closed, he was crying about how horrible his disease was.”
“And I cleared him ... and then you get big hugs – it just feels extremely good ... giving somebody their life back,” she said.
Dr. Gottlieb has been involved in much of the work in developing biologics for psoriasis, including the ongoing work with bimekizumab for PsA as mentioned by Dr. Lebwohl.
If the phase 2 data with bimekizumab are replicated in the ongoing phase 3 trials now underway at her center, “that can really raise the bar ... so if it’s reproducible, it’s very exciting.”
“It’s exciting to have an IL-23 blocker that, at least in clinical trials, showed inhibition of radiographic progression [in PsA],” she said. “That’s guselkumab those data are already out, and I was involved with that.”
The early work of Dr. Gottlieb and others has also “spread to other diseases,” like hidradenitis suppurativa and atopic dermatitis, she said, noting that numerous studies are underway.
Aside from curing all patients, her ultimate goal is getting to a point where psoriasis has no effect on patients’ quality of life.
“And I see it already,” she said. “It’s happening, and it’s nice to see that it’s happening in children now, too; several of the drugs are approved in kids.”
Alan Menter, MD, chairman of the division of dermatology at Baylor University Medical Center, Dallas, also a prolific researcher – and chair of the guidelines committee that published two new sets of guidelines for psoriasis treatment in 2019 – said that the field of dermatology was “late to the biologic evolution,” as many of the early biologics were first approved for PsA.
“But over the last 10 years, things have changed dramatically,” he said. “After that we suddenly leapt ahead of everybody. ... We now have 11 biologic drugs approved for psoriasis, which is more than any other disease has available.”
It’s been “highly exciting” to see this “evolution and revolution,” he commented, adding that one of the next challenges is to address the comorbidities, such as cardiovascular disease, associated with psoriasis.
“The big question now ... is if you improve skin and you improve joints, can you potentially reduce the risk of coronary artery disease,” he said. “Everybody is looking at that, and to me it’s one of the most exciting things that we’re doing.”
Work is ongoing to look at whether the IL-17s and IL-23s have “other indications outside of the skin and joints,” both within and outside of dermatology.
Like Dr. Gottlieb, Dr. Menter also mentioned the potential for hidradenitis suppurativa, and also for a condition that is rarely discussed or studied: genital psoriasis. Ixekizumab has recently been shown to work in about 75% of patients with genital psoriasis, he noted.
Another important area of research is the identification of biomarkers for predicting response and relapse, he said. For now, biomarker research has disappointed, he added, predicting that it will take at least 3-5 years before biomarkers to help guide treatment are identified.
Indeed, Dr. Gelfand, who also is director of the Psoriasis and Phototherapy Treatment Center, vice chair of clinical research, and medical director of the dermatology clinical studies unit at the University of Pennsylvania, agreed there is a need for research to improve treatment selection.
Advances are being made in genetics – with more than 80 different genes now identified as being related to psoriasis – and in medical informatics – which allow thousands of patients to be followed for years, he said, noting that this could elucidate immunopathological features that can improve treatments, predict and prevent comorbidity, and further improve outcomes.
“We also need care that is more patient centered,” he said, describing the ongoing pragmatic LITE trial of home- or office-based phototherapy for which he is the lead investigator, and other studies that he hopes will expand access to care.
Kenneth Brian Gordon, MD, chair and professor of dermatology at the Medical College of Wisconsin, Milwaukee, whose career started in the basic science immunology arena, added the need for expanding benefit to patients with more-moderate disease. Like Dr. Menter, he identified psoriasis as the area in medicine that has had the greatest degree of advancement, except perhaps for hepatitis C.
He described the process not as a “bench-to-bedside” story, but as a bedside-to-bench, then “back-to-bedside” story.
It was really about taking those early T-cell–targeted biologics and anti-TNF agents from bedside to bench with the realization of the importance of the IL-23 and IL-17 pathways, and that understanding led back to the bedside with the development of the newest agents – and to a “huge difference in patient’s lives.”
“But we’ve gotten so good at treating patients with severe disease ... the question now is how to take care of those with more-moderate disease,” he said, noting that a focus on cost and better delivery systems will be needed for that population.
That research is underway, and the future looks bright – and clear.
“I think with psoriasis therapy and where we’ve come in the last 20 years ... we have a hard time remembering what it was like before we had biologic agents” he said. “Our perspective has changed a lot, and sometimes we forget that.”
In fact, “psoriasis has sort of dragged dermatology into the world of modern clinical trial science, and we can now apply that to all sorts of other diseases,” he said. “The psoriasis trials were the first really well-done large-scale trials in dermatology, and I think that has given dermatology a real leg up in how we do clinical research and how we do evidence-based medicine.”
All of the doctors interviewed for this story have received funds and/or honoraria from, consulted with, are employed with, or served on the advisory boards of manufacturers of biologics. Dr. Gelfand is a copatent holder of resiquimod for treatment of cutaneous T-cell lymphoma and is deputy editor of the Journal of Investigative Dermatology.
Imagine a patient suffering with horrible psoriasis for decades having failed “every available treatment.” Imagine him living all that time with “flaking, cracking, painful, itchy skin,” only to develop cirrhosis after exposure to toxic therapies.
Then imagine the experience for that patient when, 2 weeks after initiating treatment with a new interleukin-17 inhibitor, his skin clears completely.
“Two weeks later it’s all gone – it was a moment to behold,” said Joel M. Gelfand, MD, professor of dermatology and epidemiology at the University of Pennsylvania, Philadelphia, who had cared for the man for many years before a psoriasis treatment revolution of sorts took the field of dermatology by storm.
“The progress has been breathtaking – there’s no other way to describe it – and it feels like a miracle every time I see a new patient who has tough disease and I have all these things to offer them,” he continued. “For most patients, I can really help them and make a major difference in their life.”
said Mark Lebwohl, MD, Waldman professor of dermatology and chair of the Kimberly and Eric J. Waldman department of dermatology at the Icahn School of Medicine at Mount Sinai, New York.
Dr. Lebwohl recounted some of his own experiences with psoriasis patients before the advent of treatments – particularly biologics – that have transformed practice.
There was a time when psoriasis patients had little more to turn to than the effective – but “disgusting” – Goeckerman Regimen involving cycles of UVB light exposure and topical crude coal tar application. Initially, the regimen, which was introduced in the 1920s, was used around the clock on an inpatient basis until the skin cleared, Dr. Lebwohl said.
In the 1970s, the immunosuppressive chemotherapy drug methotrexate became the first oral systemic therapy approved for severe psoriasis. For those with disabling disease, it offered some hope for relief, but only about 40% of patients achieved at least a 75% reduction in the Psoriasis Area and Severity Index score (PASI 75), he said, adding that they did so at the expense of the liver and bone marrow. “But it was the only thing we had for severe psoriasis other than light treatments.”
In the 1980s and 1990s, oral retinoids emerged as a treatment for psoriasis, and the immunosuppressive drug cyclosporine used to prevent organ rejection in some transplant patients was found to clear psoriasis in affected transplant recipients. Although they brought relief to some patients with severe, disabling disease, these also came with a high price. “It’s not that effective, and it has lots of side effects ... and causes kidney damage in essentially 100% of patients,” Dr. Lebwohl said of cyclosporine.
“So we had treatments that worked, but because the side effects were sufficiently severe, a lot of patients were not treated,” he said.
Enter the biologics era
The early 2000s brought the first two approvals for psoriasis: alefacept (Amevive), a “modestly effective, but quite safe” immunosuppressive dimeric fusion protein approved in early 2003 for moderate to severe plaque psoriasis, and efalizumab (Raptiva), a recombinant humanized monoclonal antibody approved in October 2003; both were T-cell–targeted therapies. The former was withdrawn from the market voluntarily as newer agents became available, and the latter was withdrawn in 2009 because of a link with development of progressive multifocal leukoencephalopathy.
Tumor necrosis factor (TNF) blockers, which had been used effectively for RA and Crohn’s disease, emerged next, and were highly effective, much safer than the systemic treatments, and gained “very widespread use,” Dr. Lebwohl said.
His colleague Alice B. Gottlieb, MD, PhD, was among the pioneers in the development of TNF blockers for the treatment of psoriasis. Her seminal, investigator-initiated paper on the efficacy and safety of infliximab (Remicade) monotherapy for plaque-type psoriasis published in the Lancet in 2001 helped launch the current era in which many psoriasis patients achieve 100% PASI responses with limited side effects, he said, explaining that subsequent research elucidated the role of IL-12 and -23 – leading to effective treatments like ustekinumab (Stelara), and later IL-17, which is, “in fact, the molecule closest to the pathogenesis of psoriasis.”
“If you block IL-17, you get rid of psoriasis,” he said, noting that there are now several companies with approved antibodies to IL-17. “Taltz [ixekizumab] and Cosentyx [secukinumab] are the leading ones, and Siliq [brodalumab] blocks the receptor for IL-17, so it is very effective.”
Another novel biologic – bimekizumab – is on the horizon. It blocks both IL-17a and IL-17f, and appears highly effective in psoriasis and psoriatic arthritis (PsA). “Biologics were the real start of the [psoriasis treatment] revolution,” he said. “When I started out I would speak at patient meetings and the patients were angry at their physicians; they thought they weren’t aggressive enough, they were very frustrated.”
Dr. Lebwohl described patients he would see at annual National Psoriasis Foundation meetings: “There were patients in wheel chairs, because they couldn’t walk. They would be red and scaly all over ... you could have literally swept up scale like it was snow after one of those meetings.
“You go forward to around 2010 – nobody’s in wheelchairs anymore, everybody has clear skin, and it’s become a party; patients are no longer angry – they are thrilled with the results they are getting from much safer and much more effective drugs,” he said. “So it’s been a pleasure taking care of those patients and going from a very difficult time of treating them, to a time where we’ve done a great job treating them.”
Dr. Lebwohl noted that a “large number of dermatologists have been involved with the development of these drugs and making sure they succeed, and that has also been a pleasure to see.”
Dr. Gottlieb, who Dr. Lebwohl has described as “a superstar” in the fields of dermatology and rheumatology, is one such researcher. In an interview, she looked back on her work and the ways that her work “opened the field,” led to many of her trainees also doing “great work,” and changed the lives of patients.
“It’s nice to feel that I really did change, fundamentally, how psoriasis patients are treated,” said Dr. Gottlieb, who is a clinical professor in the department of dermatology at the Icahn School of Medicine at Mount Sinai. “That obviously feels great.”
She recalled a patient – “a 6-foot-5 biker with bad psoriasis” – who “literally, the minute the door closed, he was crying about how horrible his disease was.”
“And I cleared him ... and then you get big hugs – it just feels extremely good ... giving somebody their life back,” she said.
Dr. Gottlieb has been involved in much of the work in developing biologics for psoriasis, including the ongoing work with bimekizumab for PsA as mentioned by Dr. Lebwohl.
If the phase 2 data with bimekizumab are replicated in the ongoing phase 3 trials now underway at her center, “that can really raise the bar ... so if it’s reproducible, it’s very exciting.”
“It’s exciting to have an IL-23 blocker that, at least in clinical trials, showed inhibition of radiographic progression [in PsA],” she said. “That’s guselkumab those data are already out, and I was involved with that.”
The early work of Dr. Gottlieb and others has also “spread to other diseases,” like hidradenitis suppurativa and atopic dermatitis, she said, noting that numerous studies are underway.
Aside from curing all patients, her ultimate goal is getting to a point where psoriasis has no effect on patients’ quality of life.
“And I see it already,” she said. “It’s happening, and it’s nice to see that it’s happening in children now, too; several of the drugs are approved in kids.”
Alan Menter, MD, chairman of the division of dermatology at Baylor University Medical Center, Dallas, also a prolific researcher – and chair of the guidelines committee that published two new sets of guidelines for psoriasis treatment in 2019 – said that the field of dermatology was “late to the biologic evolution,” as many of the early biologics were first approved for PsA.
“But over the last 10 years, things have changed dramatically,” he said. “After that we suddenly leapt ahead of everybody. ... We now have 11 biologic drugs approved for psoriasis, which is more than any other disease has available.”
It’s been “highly exciting” to see this “evolution and revolution,” he commented, adding that one of the next challenges is to address the comorbidities, such as cardiovascular disease, associated with psoriasis.
“The big question now ... is if you improve skin and you improve joints, can you potentially reduce the risk of coronary artery disease,” he said. “Everybody is looking at that, and to me it’s one of the most exciting things that we’re doing.”
Work is ongoing to look at whether the IL-17s and IL-23s have “other indications outside of the skin and joints,” both within and outside of dermatology.
Like Dr. Gottlieb, Dr. Menter also mentioned the potential for hidradenitis suppurativa, and also for a condition that is rarely discussed or studied: genital psoriasis. Ixekizumab has recently been shown to work in about 75% of patients with genital psoriasis, he noted.
Another important area of research is the identification of biomarkers for predicting response and relapse, he said. For now, biomarker research has disappointed, he added, predicting that it will take at least 3-5 years before biomarkers to help guide treatment are identified.
Indeed, Dr. Gelfand, who also is director of the Psoriasis and Phototherapy Treatment Center, vice chair of clinical research, and medical director of the dermatology clinical studies unit at the University of Pennsylvania, agreed there is a need for research to improve treatment selection.
Advances are being made in genetics – with more than 80 different genes now identified as being related to psoriasis – and in medical informatics – which allow thousands of patients to be followed for years, he said, noting that this could elucidate immunopathological features that can improve treatments, predict and prevent comorbidity, and further improve outcomes.
“We also need care that is more patient centered,” he said, describing the ongoing pragmatic LITE trial of home- or office-based phototherapy for which he is the lead investigator, and other studies that he hopes will expand access to care.
Kenneth Brian Gordon, MD, chair and professor of dermatology at the Medical College of Wisconsin, Milwaukee, whose career started in the basic science immunology arena, added the need for expanding benefit to patients with more-moderate disease. Like Dr. Menter, he identified psoriasis as the area in medicine that has had the greatest degree of advancement, except perhaps for hepatitis C.
He described the process not as a “bench-to-bedside” story, but as a bedside-to-bench, then “back-to-bedside” story.
It was really about taking those early T-cell–targeted biologics and anti-TNF agents from bedside to bench with the realization of the importance of the IL-23 and IL-17 pathways, and that understanding led back to the bedside with the development of the newest agents – and to a “huge difference in patient’s lives.”
“But we’ve gotten so good at treating patients with severe disease ... the question now is how to take care of those with more-moderate disease,” he said, noting that a focus on cost and better delivery systems will be needed for that population.
That research is underway, and the future looks bright – and clear.
“I think with psoriasis therapy and where we’ve come in the last 20 years ... we have a hard time remembering what it was like before we had biologic agents” he said. “Our perspective has changed a lot, and sometimes we forget that.”
In fact, “psoriasis has sort of dragged dermatology into the world of modern clinical trial science, and we can now apply that to all sorts of other diseases,” he said. “The psoriasis trials were the first really well-done large-scale trials in dermatology, and I think that has given dermatology a real leg up in how we do clinical research and how we do evidence-based medicine.”
All of the doctors interviewed for this story have received funds and/or honoraria from, consulted with, are employed with, or served on the advisory boards of manufacturers of biologics. Dr. Gelfand is a copatent holder of resiquimod for treatment of cutaneous T-cell lymphoma and is deputy editor of the Journal of Investigative Dermatology.
Actor Alan Alda discusses using empathy as an antidote to burnout
LA JOLLA, CALIF. – Physicians and other medical professionals who routinely foster empathic connections with patients may be helping themselves steer clear of burnout.
That’s what iconic actor Alan Alda suggested during a media briefing at Scripps Research on Jan. 16, 2020.
“There’s a tremendous pressure on doctors now to have shorter and shorter visits with their patients,” said the 83-year-old Mr. Alda, who received the Public Welfare Medal from the National Academy of Sciences in 2016 for his work as a champion of science. “A lot of that time is taken up with recording on a computer, which can only put pressure on the doctor.”
Practicing empathy, he continued, “kind of opens people up to one another, which inspirits them.”
Mr. Alda appeared on the research campus to announce that Scripps Research will serve as the new West Coast home of Alda Communication Training, which will work in tandem with the Alan Alda Center for Communicating Science at Stony Brook (N.Y.) University, a nonprofit organization that Mr. Alda helped found in 2009.
“This will be a center where people can come to get training in effective communication,” Mr. Alda, who is the winner of six Emmy Awards and six Golden Globe awards, told an audience of scientists and medical professionals prior to the media briefing.
“It’s an experiential kind of training,” he explained. “We don’t give tips. We don’t give lectures. We put you through exercises that are fun and actually make you laugh, but turn you into a better communicator, so you’re better able to connect to the people you’re talking to.”
During a question-and-answer session, Mr. Alda opened up about his Parkinson’s disease, which he said was diagnosed about 5 years ago. In 2018, he decided to speak publicly about his diagnosis for the first time.
“The reason was that I wanted to communicate to people who had recently been diagnosed not to believe or give into the stereotype that, when you get a diagnosis, your life is over,” said Mr. Alda, who played army surgeon “Hawkeye” Pierce on the TV series “M*A*S*H.”
“Under the burden of that belief, some people won’t tell their family or workplace colleagues,” he said. “There are exercises you can do and medications you can take to prolong the time it takes before Parkinson’s gets much more serious. It’s not to diminish the fact that it can get really bad; but to think that your life is over as soon as you get a diagnosis is wrong.”
The first 2-day training session at Scripps Research will be held in June 2020. Additional sessions are scheduled to take place in October and December. Registration is available at aldacommunicationtraining.com/workshops.
LA JOLLA, CALIF. – Physicians and other medical professionals who routinely foster empathic connections with patients may be helping themselves steer clear of burnout.
That’s what iconic actor Alan Alda suggested during a media briefing at Scripps Research on Jan. 16, 2020.
“There’s a tremendous pressure on doctors now to have shorter and shorter visits with their patients,” said the 83-year-old Mr. Alda, who received the Public Welfare Medal from the National Academy of Sciences in 2016 for his work as a champion of science. “A lot of that time is taken up with recording on a computer, which can only put pressure on the doctor.”
Practicing empathy, he continued, “kind of opens people up to one another, which inspirits them.”
Mr. Alda appeared on the research campus to announce that Scripps Research will serve as the new West Coast home of Alda Communication Training, which will work in tandem with the Alan Alda Center for Communicating Science at Stony Brook (N.Y.) University, a nonprofit organization that Mr. Alda helped found in 2009.
“This will be a center where people can come to get training in effective communication,” Mr. Alda, who is the winner of six Emmy Awards and six Golden Globe awards, told an audience of scientists and medical professionals prior to the media briefing.
“It’s an experiential kind of training,” he explained. “We don’t give tips. We don’t give lectures. We put you through exercises that are fun and actually make you laugh, but turn you into a better communicator, so you’re better able to connect to the people you’re talking to.”
During a question-and-answer session, Mr. Alda opened up about his Parkinson’s disease, which he said was diagnosed about 5 years ago. In 2018, he decided to speak publicly about his diagnosis for the first time.
“The reason was that I wanted to communicate to people who had recently been diagnosed not to believe or give into the stereotype that, when you get a diagnosis, your life is over,” said Mr. Alda, who played army surgeon “Hawkeye” Pierce on the TV series “M*A*S*H.”
“Under the burden of that belief, some people won’t tell their family or workplace colleagues,” he said. “There are exercises you can do and medications you can take to prolong the time it takes before Parkinson’s gets much more serious. It’s not to diminish the fact that it can get really bad; but to think that your life is over as soon as you get a diagnosis is wrong.”
The first 2-day training session at Scripps Research will be held in June 2020. Additional sessions are scheduled to take place in October and December. Registration is available at aldacommunicationtraining.com/workshops.
LA JOLLA, CALIF. – Physicians and other medical professionals who routinely foster empathic connections with patients may be helping themselves steer clear of burnout.
That’s what iconic actor Alan Alda suggested during a media briefing at Scripps Research on Jan. 16, 2020.
“There’s a tremendous pressure on doctors now to have shorter and shorter visits with their patients,” said the 83-year-old Mr. Alda, who received the Public Welfare Medal from the National Academy of Sciences in 2016 for his work as a champion of science. “A lot of that time is taken up with recording on a computer, which can only put pressure on the doctor.”
Practicing empathy, he continued, “kind of opens people up to one another, which inspirits them.”
Mr. Alda appeared on the research campus to announce that Scripps Research will serve as the new West Coast home of Alda Communication Training, which will work in tandem with the Alan Alda Center for Communicating Science at Stony Brook (N.Y.) University, a nonprofit organization that Mr. Alda helped found in 2009.
“This will be a center where people can come to get training in effective communication,” Mr. Alda, who is the winner of six Emmy Awards and six Golden Globe awards, told an audience of scientists and medical professionals prior to the media briefing.
“It’s an experiential kind of training,” he explained. “We don’t give tips. We don’t give lectures. We put you through exercises that are fun and actually make you laugh, but turn you into a better communicator, so you’re better able to connect to the people you’re talking to.”
During a question-and-answer session, Mr. Alda opened up about his Parkinson’s disease, which he said was diagnosed about 5 years ago. In 2018, he decided to speak publicly about his diagnosis for the first time.
“The reason was that I wanted to communicate to people who had recently been diagnosed not to believe or give into the stereotype that, when you get a diagnosis, your life is over,” said Mr. Alda, who played army surgeon “Hawkeye” Pierce on the TV series “M*A*S*H.”
“Under the burden of that belief, some people won’t tell their family or workplace colleagues,” he said. “There are exercises you can do and medications you can take to prolong the time it takes before Parkinson’s gets much more serious. It’s not to diminish the fact that it can get really bad; but to think that your life is over as soon as you get a diagnosis is wrong.”
The first 2-day training session at Scripps Research will be held in June 2020. Additional sessions are scheduled to take place in October and December. Registration is available at aldacommunicationtraining.com/workshops.
