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Transgender youth: Bringing evidence to the political debates
In 2021, state lawmakers introduced a record number of bills that would affect transgender and gender-diverse people. The vast majority were focused on transgender and gender-diverse youth in particular. We’ve seen bills that would take away gender-affirming medical care for minors, ones that would force trans kids to play on sports teams that don’t match their gender identity, and others that would ban trans kids from public facilities like bathrooms that match their gender identities.
These bills aren’t particularly new, but state lawmakers are putting more energy into them than ever. In response, some public figures have started pushing back. Ariana Grande just pledged to match up to 1.5 million dollars in donations to combat anti–trans youth legislative initiatives. However, doctors have been underrepresented in the political discourse.
Sadly, much of the discussion in this area has been driven by wild speculation and emotional rhetoric. It’s rare that we see actual data brought to the table. As clinicians and scientists, we have a responsibility to highlight the data relevant to these legislative debates, and to share them with our representatives. I’m going to break down what we know quantitatively about each of these issues, so that you’ll feel empowered to bring that information to these debates. My hope is that we can move toward evidence-based public policy instead of rhetoric-based public policy, so that we can ensure the best health possible for young people around the country.
Bathroom bills
Though they’ve been less of a focus recently, politicians for years have argued that trans people should be forced to use bathrooms and other public facilities that match their sex assigned at birth, not their gender identity. Their central argument is that trans-inclusive public facility policies will result in higher rates of assault. Published peer-review data show this isn’t true. A 2019 study in Sexuality Research and Social Policy examined the impacts of trans-inclusive public facility policies and found they resulted in no increase in assaults among the general (mostly cisgender) population. Another 2019 study in Pediatrics found that trans-inclusive facility policies were associated with lower odds of sexual assault victimization against transgender youth. The myth that trans-inclusive public facilities increase assault risk is simply that: a myth. All existing data indicate that trans-inclusive policies will improve public safety.
Sports bills
One of the hottest debates recently involves whether transgender girls should be allowed to participate in girls’ sports teams. Those in favor of these bills argue that transgender girls have an innate biological sports advantage over cisgender girls, and if allowed to compete in girls’ sports leagues, they will dominate the events, and cisgender girls will no longer win sports titles. The bills feed into longstanding assumptions – those who were assigned male at birth are strong, and those who were assigned female at birth are weak.
But evidence doesn’t show that trans women dominate female sports leagues. It turns out, there are shockingly few transgender athletes competing in sports leagues around the United States, and even fewer winning major titles. When the Associated Press conducted an investigation asking lawmakers introducing such sports bills to name trans athletes in their states, most couldn’t point to a single one. After Utah state legislators passed a trans sports ban, Governor Spencer Cox vetoed it, pointing out that, of 75,000 high school kids participating in sports in Utah, there was only a single transgender girl (the state legislature overrode the veto anyway).
California has explicitly protected the rights of trans athletes to compete on sports teams that match their gender identity since 2013. There’s still an underrepresentation of trans athletes in sports participation and titles. This is likely because the deck is stacked against these young people in so many other ways that are unrelated to testosterone levels. Trans youth suffer from high rates of harassment, discrimination, and subsequent anxiety and depression that make it difficult to compete in and excel in sports.
Medical bills
State legislators have introduced bills around the country that would criminalize the provision of gender-affirming medical care for transgender youth. Though such bills are opposed by all major medical organizations (including the American Medical Association, the American Academy of Pediatrics, the American Academy of Child & Adolescent Psychiatry, and the American Psychiatric Association), misinformation continues to spread, and in some instances the bills have become law (though none are currently active due to legal challenges).
Clinicians should be aware that there have been sixteen studies to date, each with unique study designs, that have overall linked gender-affirming medical care for transgender youth to better mental health outcomes. While these interventions do (as with all medications) carry some risks (like delayed bone mineralization with pubertal suppression), the risks must be weighed against potential benefits. Unfortunately, these risks and benefits have not been accurately portrayed in state legislative debates. Politicians have spread a great deal of misinformation about gender-affirming medical care for transgender youth, including false assertions that puberty blockers cause infertility and that most transgender adolescents will grow up to identify as cisgender and regret gender-affirming medical interventions.
Minority stress
These bills have direct consequences for pediatric patients. For example, trans-inclusive bathroom policies are associated with lower rates of sexual assault. However, there are also important indirect effects to consider. The gender minority stress framework explains the ways in which stigmatizing national discourse drives higher rates of anxiety, depression, and suicidality among transgender youth. Under this model, so-called “distal factors” like the recent conversations at the national level that marginalize trans young people, are expected to drive higher rates of adverse mental health outcomes. As transgender youth hear high-profile politicians argue that they’re dangerous to their peers in bathrooms and on sports teams, it’s difficult to imagine their mental health would not worsen. Over time, such “distal factors” also lead to “proximal factors” like internalized transphobia in which youth begin to believe the negative things that are said about them. These dangerous processes can have dramatic negative impacts on self-esteem and emotional development. There is strong precedence that public policies have strong indirect mental health effects on LGBTQ youth.
We’ve entered a dangerous era in which politicians are legislating medical care and other aspects of public policy with the potential to hurt the mental health of our young patients. It’s imperative that clinicians and scientists contact their legislators to make sure they are voting for public policy based on data and fact, not misinformation and political rhetoric. The health of American children depends on it.
Dr. Turban (twitter.com/jack_turban) is a chief fellow in child and adolescent psychiatry at Stanford (Calif.) University.
In 2021, state lawmakers introduced a record number of bills that would affect transgender and gender-diverse people. The vast majority were focused on transgender and gender-diverse youth in particular. We’ve seen bills that would take away gender-affirming medical care for minors, ones that would force trans kids to play on sports teams that don’t match their gender identity, and others that would ban trans kids from public facilities like bathrooms that match their gender identities.
These bills aren’t particularly new, but state lawmakers are putting more energy into them than ever. In response, some public figures have started pushing back. Ariana Grande just pledged to match up to 1.5 million dollars in donations to combat anti–trans youth legislative initiatives. However, doctors have been underrepresented in the political discourse.
Sadly, much of the discussion in this area has been driven by wild speculation and emotional rhetoric. It’s rare that we see actual data brought to the table. As clinicians and scientists, we have a responsibility to highlight the data relevant to these legislative debates, and to share them with our representatives. I’m going to break down what we know quantitatively about each of these issues, so that you’ll feel empowered to bring that information to these debates. My hope is that we can move toward evidence-based public policy instead of rhetoric-based public policy, so that we can ensure the best health possible for young people around the country.
Bathroom bills
Though they’ve been less of a focus recently, politicians for years have argued that trans people should be forced to use bathrooms and other public facilities that match their sex assigned at birth, not their gender identity. Their central argument is that trans-inclusive public facility policies will result in higher rates of assault. Published peer-review data show this isn’t true. A 2019 study in Sexuality Research and Social Policy examined the impacts of trans-inclusive public facility policies and found they resulted in no increase in assaults among the general (mostly cisgender) population. Another 2019 study in Pediatrics found that trans-inclusive facility policies were associated with lower odds of sexual assault victimization against transgender youth. The myth that trans-inclusive public facilities increase assault risk is simply that: a myth. All existing data indicate that trans-inclusive policies will improve public safety.
Sports bills
One of the hottest debates recently involves whether transgender girls should be allowed to participate in girls’ sports teams. Those in favor of these bills argue that transgender girls have an innate biological sports advantage over cisgender girls, and if allowed to compete in girls’ sports leagues, they will dominate the events, and cisgender girls will no longer win sports titles. The bills feed into longstanding assumptions – those who were assigned male at birth are strong, and those who were assigned female at birth are weak.
But evidence doesn’t show that trans women dominate female sports leagues. It turns out, there are shockingly few transgender athletes competing in sports leagues around the United States, and even fewer winning major titles. When the Associated Press conducted an investigation asking lawmakers introducing such sports bills to name trans athletes in their states, most couldn’t point to a single one. After Utah state legislators passed a trans sports ban, Governor Spencer Cox vetoed it, pointing out that, of 75,000 high school kids participating in sports in Utah, there was only a single transgender girl (the state legislature overrode the veto anyway).
California has explicitly protected the rights of trans athletes to compete on sports teams that match their gender identity since 2013. There’s still an underrepresentation of trans athletes in sports participation and titles. This is likely because the deck is stacked against these young people in so many other ways that are unrelated to testosterone levels. Trans youth suffer from high rates of harassment, discrimination, and subsequent anxiety and depression that make it difficult to compete in and excel in sports.
Medical bills
State legislators have introduced bills around the country that would criminalize the provision of gender-affirming medical care for transgender youth. Though such bills are opposed by all major medical organizations (including the American Medical Association, the American Academy of Pediatrics, the American Academy of Child & Adolescent Psychiatry, and the American Psychiatric Association), misinformation continues to spread, and in some instances the bills have become law (though none are currently active due to legal challenges).
Clinicians should be aware that there have been sixteen studies to date, each with unique study designs, that have overall linked gender-affirming medical care for transgender youth to better mental health outcomes. While these interventions do (as with all medications) carry some risks (like delayed bone mineralization with pubertal suppression), the risks must be weighed against potential benefits. Unfortunately, these risks and benefits have not been accurately portrayed in state legislative debates. Politicians have spread a great deal of misinformation about gender-affirming medical care for transgender youth, including false assertions that puberty blockers cause infertility and that most transgender adolescents will grow up to identify as cisgender and regret gender-affirming medical interventions.
Minority stress
These bills have direct consequences for pediatric patients. For example, trans-inclusive bathroom policies are associated with lower rates of sexual assault. However, there are also important indirect effects to consider. The gender minority stress framework explains the ways in which stigmatizing national discourse drives higher rates of anxiety, depression, and suicidality among transgender youth. Under this model, so-called “distal factors” like the recent conversations at the national level that marginalize trans young people, are expected to drive higher rates of adverse mental health outcomes. As transgender youth hear high-profile politicians argue that they’re dangerous to their peers in bathrooms and on sports teams, it’s difficult to imagine their mental health would not worsen. Over time, such “distal factors” also lead to “proximal factors” like internalized transphobia in which youth begin to believe the negative things that are said about them. These dangerous processes can have dramatic negative impacts on self-esteem and emotional development. There is strong precedence that public policies have strong indirect mental health effects on LGBTQ youth.
We’ve entered a dangerous era in which politicians are legislating medical care and other aspects of public policy with the potential to hurt the mental health of our young patients. It’s imperative that clinicians and scientists contact their legislators to make sure they are voting for public policy based on data and fact, not misinformation and political rhetoric. The health of American children depends on it.
Dr. Turban (twitter.com/jack_turban) is a chief fellow in child and adolescent psychiatry at Stanford (Calif.) University.
In 2021, state lawmakers introduced a record number of bills that would affect transgender and gender-diverse people. The vast majority were focused on transgender and gender-diverse youth in particular. We’ve seen bills that would take away gender-affirming medical care for minors, ones that would force trans kids to play on sports teams that don’t match their gender identity, and others that would ban trans kids from public facilities like bathrooms that match their gender identities.
These bills aren’t particularly new, but state lawmakers are putting more energy into them than ever. In response, some public figures have started pushing back. Ariana Grande just pledged to match up to 1.5 million dollars in donations to combat anti–trans youth legislative initiatives. However, doctors have been underrepresented in the political discourse.
Sadly, much of the discussion in this area has been driven by wild speculation and emotional rhetoric. It’s rare that we see actual data brought to the table. As clinicians and scientists, we have a responsibility to highlight the data relevant to these legislative debates, and to share them with our representatives. I’m going to break down what we know quantitatively about each of these issues, so that you’ll feel empowered to bring that information to these debates. My hope is that we can move toward evidence-based public policy instead of rhetoric-based public policy, so that we can ensure the best health possible for young people around the country.
Bathroom bills
Though they’ve been less of a focus recently, politicians for years have argued that trans people should be forced to use bathrooms and other public facilities that match their sex assigned at birth, not their gender identity. Their central argument is that trans-inclusive public facility policies will result in higher rates of assault. Published peer-review data show this isn’t true. A 2019 study in Sexuality Research and Social Policy examined the impacts of trans-inclusive public facility policies and found they resulted in no increase in assaults among the general (mostly cisgender) population. Another 2019 study in Pediatrics found that trans-inclusive facility policies were associated with lower odds of sexual assault victimization against transgender youth. The myth that trans-inclusive public facilities increase assault risk is simply that: a myth. All existing data indicate that trans-inclusive policies will improve public safety.
Sports bills
One of the hottest debates recently involves whether transgender girls should be allowed to participate in girls’ sports teams. Those in favor of these bills argue that transgender girls have an innate biological sports advantage over cisgender girls, and if allowed to compete in girls’ sports leagues, they will dominate the events, and cisgender girls will no longer win sports titles. The bills feed into longstanding assumptions – those who were assigned male at birth are strong, and those who were assigned female at birth are weak.
But evidence doesn’t show that trans women dominate female sports leagues. It turns out, there are shockingly few transgender athletes competing in sports leagues around the United States, and even fewer winning major titles. When the Associated Press conducted an investigation asking lawmakers introducing such sports bills to name trans athletes in their states, most couldn’t point to a single one. After Utah state legislators passed a trans sports ban, Governor Spencer Cox vetoed it, pointing out that, of 75,000 high school kids participating in sports in Utah, there was only a single transgender girl (the state legislature overrode the veto anyway).
California has explicitly protected the rights of trans athletes to compete on sports teams that match their gender identity since 2013. There’s still an underrepresentation of trans athletes in sports participation and titles. This is likely because the deck is stacked against these young people in so many other ways that are unrelated to testosterone levels. Trans youth suffer from high rates of harassment, discrimination, and subsequent anxiety and depression that make it difficult to compete in and excel in sports.
Medical bills
State legislators have introduced bills around the country that would criminalize the provision of gender-affirming medical care for transgender youth. Though such bills are opposed by all major medical organizations (including the American Medical Association, the American Academy of Pediatrics, the American Academy of Child & Adolescent Psychiatry, and the American Psychiatric Association), misinformation continues to spread, and in some instances the bills have become law (though none are currently active due to legal challenges).
Clinicians should be aware that there have been sixteen studies to date, each with unique study designs, that have overall linked gender-affirming medical care for transgender youth to better mental health outcomes. While these interventions do (as with all medications) carry some risks (like delayed bone mineralization with pubertal suppression), the risks must be weighed against potential benefits. Unfortunately, these risks and benefits have not been accurately portrayed in state legislative debates. Politicians have spread a great deal of misinformation about gender-affirming medical care for transgender youth, including false assertions that puberty blockers cause infertility and that most transgender adolescents will grow up to identify as cisgender and regret gender-affirming medical interventions.
Minority stress
These bills have direct consequences for pediatric patients. For example, trans-inclusive bathroom policies are associated with lower rates of sexual assault. However, there are also important indirect effects to consider. The gender minority stress framework explains the ways in which stigmatizing national discourse drives higher rates of anxiety, depression, and suicidality among transgender youth. Under this model, so-called “distal factors” like the recent conversations at the national level that marginalize trans young people, are expected to drive higher rates of adverse mental health outcomes. As transgender youth hear high-profile politicians argue that they’re dangerous to their peers in bathrooms and on sports teams, it’s difficult to imagine their mental health would not worsen. Over time, such “distal factors” also lead to “proximal factors” like internalized transphobia in which youth begin to believe the negative things that are said about them. These dangerous processes can have dramatic negative impacts on self-esteem and emotional development. There is strong precedence that public policies have strong indirect mental health effects on LGBTQ youth.
We’ve entered a dangerous era in which politicians are legislating medical care and other aspects of public policy with the potential to hurt the mental health of our young patients. It’s imperative that clinicians and scientists contact their legislators to make sure they are voting for public policy based on data and fact, not misinformation and political rhetoric. The health of American children depends on it.
Dr. Turban (twitter.com/jack_turban) is a chief fellow in child and adolescent psychiatry at Stanford (Calif.) University.
On the receiving end of care
It’s tough being on the receiving end of care. I’ve tried to avoid it as much as possible, being ever mindful of the law from Samuel Shem’s The House of God: “They can always hurt you more.”
Fortunately, each procedure went more smoothly than the prior one.
The first was not so elective. I had some uncomfortable symptoms while exercising and, not wanting to totally be in denial, contacted my doctor to ensure that it was not cardiac in origin since symptoms are often atypical in women.
My physician promptly saw me, then scheduled a nuclear stress test. There was a series of needless glitches. Registration at the diagnostic center had me on their schedule but did not have an order. They would have canceled the procedure had I not been able to get hold of the doctor’s office. Why isn’t an order automatically entered when the physician schedules the test?
While I was given the euphemistic “Patient Rights” brochure, asking to have reports sent to a physician outside of the University of Pittsburgh Medical Center empire is apparently not included.
The staff canceled the stress test because I was not fasting. I had received no instructions from diagnostic cardiology. They suggested it was my internist’s responsibility.
I deliberately ate (2 hours earlier) because my trainer always wants me to eat a light meal so I don’t get hypoglycemic during our workouts, and an exercise stress test, is, of course, a workout. The nurse practitioner said that they were concerned I would vomit. I offered to sign a waiver. She parried, saying they would not be able to get adequate images, so I was out of luck.
When I expressed concern about getting hypoglycemic and having difficulty with the test if fasting, the tech said I should bring a soda and snack. Who tells a “borderline” diabetic to bring a soda?
The tech also said she had called our home to give instructions but encountered a busy signal and had not had time to call back. I had not left the house during the prior week (or most of the past 2 years), so this was a pretty lame excuse.
I suggested to the administration that the hospital offer to email the patient instructions well ahead of time (and perhaps ask for confirmation of receipt). If calling, they should try more than once. They should also have patient instruction sheets at the physician’s office and perhaps have them on their website.
It turns out that the hospital mailed me instructions, not on the date it was ordered, but with the postmark being the day of the procedure itself. With Trump donor Louis DeJoy in charge of the U.S. Postal Service, mail across town now has to travel to Baltimore, 3 hours away, be sorted, and returned.
I did finally have the stress test, which was reassuringly normal. I was not surprised, given that the fury I felt on the first attempt had not precipitated symptoms. The hospital sent a patient ombudsman to meet me there to discuss my previous complaints. I have no idea if they implemented any of the changes I had suggested. In 2021, when I urgently had to take my husband to the ED, I couldn’t see the sign pointing toward the ED and had to ask for directions at the main entrance. They said they would fix that promptly but still have not improved the signage. How I miss the friendly community hospital we had before!
Next was trigger-finger surgery. I had developed that in 1978 from using crutches after a fall. I figured that the relative lull in COVID and my activities made it as good a time as any to finally have it fixed. The surgicenter was great; the surgeon was someone I had worked with and respected for decades. The only glitch was not really knowing how long I was going to be out of commission.
The third encounter (at yet another institution) went really well, despite some early administrative glitches. My major complaint was with the lack of communication between preoperative anesthesia and the operating room and the lack of personalization of preoperative instructions. Despite EPIC, medicines were not correctly reconciled between the different encounters, even on the same day!
After about 15 years of diplopia, which has been gradually worsening, my eye doc had suggested that I consider strabismus surgery as a sort of last-ditch effort to improve my quality of life.
Anesthesiology has stock instructions, which they made no effort to individualize. For example, there is no reason to stop NSAIDs a week before such minor surgery. That’s a problem if you depend on NSAIDs for pain control. Similarly, nothing by mouth after midnight is passé and could be tailored for the patient. I felt particularly inconvenienced that I had to go out of town for the preoperative visit and then have a redundant preoperative clearance by my physician.
The nurses in the preoperative area made me feel quite comfortable and as relaxed as I could be under the circumstances. They had a good sense of humor, which helped too. And from the time I met him a few weeks earlier, I instantly liked my surgeon and felt very comfortable with him and had complete trust.
I was pleased that the chief anesthesiologist responded promptly and undefensively to my letter expressing concerns. I do believe that he will try to improve the systemic problems.
The best part: The surgery appears to have been successful and I should have a significantly improved quality of life.
Hospitals could do so much better by improving communications with patients and by viewing them as customers whose loyalty they must earn and will value. With monopolies growing, memories of such care are quickly fading, soon to be as extinct as the family doc who made house calls.
Dr. Stone is an infectious disease specialist and author of Resilience: One Family’s Story of Hope and Triumph over Evil and Conducting Clinical Research: A Practical Guide. She disclosed no relevant financial relationships. A version of this article first appeared on Medscape.com.
It’s tough being on the receiving end of care. I’ve tried to avoid it as much as possible, being ever mindful of the law from Samuel Shem’s The House of God: “They can always hurt you more.”
Fortunately, each procedure went more smoothly than the prior one.
The first was not so elective. I had some uncomfortable symptoms while exercising and, not wanting to totally be in denial, contacted my doctor to ensure that it was not cardiac in origin since symptoms are often atypical in women.
My physician promptly saw me, then scheduled a nuclear stress test. There was a series of needless glitches. Registration at the diagnostic center had me on their schedule but did not have an order. They would have canceled the procedure had I not been able to get hold of the doctor’s office. Why isn’t an order automatically entered when the physician schedules the test?
While I was given the euphemistic “Patient Rights” brochure, asking to have reports sent to a physician outside of the University of Pittsburgh Medical Center empire is apparently not included.
The staff canceled the stress test because I was not fasting. I had received no instructions from diagnostic cardiology. They suggested it was my internist’s responsibility.
I deliberately ate (2 hours earlier) because my trainer always wants me to eat a light meal so I don’t get hypoglycemic during our workouts, and an exercise stress test, is, of course, a workout. The nurse practitioner said that they were concerned I would vomit. I offered to sign a waiver. She parried, saying they would not be able to get adequate images, so I was out of luck.
When I expressed concern about getting hypoglycemic and having difficulty with the test if fasting, the tech said I should bring a soda and snack. Who tells a “borderline” diabetic to bring a soda?
The tech also said she had called our home to give instructions but encountered a busy signal and had not had time to call back. I had not left the house during the prior week (or most of the past 2 years), so this was a pretty lame excuse.
I suggested to the administration that the hospital offer to email the patient instructions well ahead of time (and perhaps ask for confirmation of receipt). If calling, they should try more than once. They should also have patient instruction sheets at the physician’s office and perhaps have them on their website.
It turns out that the hospital mailed me instructions, not on the date it was ordered, but with the postmark being the day of the procedure itself. With Trump donor Louis DeJoy in charge of the U.S. Postal Service, mail across town now has to travel to Baltimore, 3 hours away, be sorted, and returned.
I did finally have the stress test, which was reassuringly normal. I was not surprised, given that the fury I felt on the first attempt had not precipitated symptoms. The hospital sent a patient ombudsman to meet me there to discuss my previous complaints. I have no idea if they implemented any of the changes I had suggested. In 2021, when I urgently had to take my husband to the ED, I couldn’t see the sign pointing toward the ED and had to ask for directions at the main entrance. They said they would fix that promptly but still have not improved the signage. How I miss the friendly community hospital we had before!
Next was trigger-finger surgery. I had developed that in 1978 from using crutches after a fall. I figured that the relative lull in COVID and my activities made it as good a time as any to finally have it fixed. The surgicenter was great; the surgeon was someone I had worked with and respected for decades. The only glitch was not really knowing how long I was going to be out of commission.
The third encounter (at yet another institution) went really well, despite some early administrative glitches. My major complaint was with the lack of communication between preoperative anesthesia and the operating room and the lack of personalization of preoperative instructions. Despite EPIC, medicines were not correctly reconciled between the different encounters, even on the same day!
After about 15 years of diplopia, which has been gradually worsening, my eye doc had suggested that I consider strabismus surgery as a sort of last-ditch effort to improve my quality of life.
Anesthesiology has stock instructions, which they made no effort to individualize. For example, there is no reason to stop NSAIDs a week before such minor surgery. That’s a problem if you depend on NSAIDs for pain control. Similarly, nothing by mouth after midnight is passé and could be tailored for the patient. I felt particularly inconvenienced that I had to go out of town for the preoperative visit and then have a redundant preoperative clearance by my physician.
The nurses in the preoperative area made me feel quite comfortable and as relaxed as I could be under the circumstances. They had a good sense of humor, which helped too. And from the time I met him a few weeks earlier, I instantly liked my surgeon and felt very comfortable with him and had complete trust.
I was pleased that the chief anesthesiologist responded promptly and undefensively to my letter expressing concerns. I do believe that he will try to improve the systemic problems.
The best part: The surgery appears to have been successful and I should have a significantly improved quality of life.
Hospitals could do so much better by improving communications with patients and by viewing them as customers whose loyalty they must earn and will value. With monopolies growing, memories of such care are quickly fading, soon to be as extinct as the family doc who made house calls.
Dr. Stone is an infectious disease specialist and author of Resilience: One Family’s Story of Hope and Triumph over Evil and Conducting Clinical Research: A Practical Guide. She disclosed no relevant financial relationships. A version of this article first appeared on Medscape.com.
It’s tough being on the receiving end of care. I’ve tried to avoid it as much as possible, being ever mindful of the law from Samuel Shem’s The House of God: “They can always hurt you more.”
Fortunately, each procedure went more smoothly than the prior one.
The first was not so elective. I had some uncomfortable symptoms while exercising and, not wanting to totally be in denial, contacted my doctor to ensure that it was not cardiac in origin since symptoms are often atypical in women.
My physician promptly saw me, then scheduled a nuclear stress test. There was a series of needless glitches. Registration at the diagnostic center had me on their schedule but did not have an order. They would have canceled the procedure had I not been able to get hold of the doctor’s office. Why isn’t an order automatically entered when the physician schedules the test?
While I was given the euphemistic “Patient Rights” brochure, asking to have reports sent to a physician outside of the University of Pittsburgh Medical Center empire is apparently not included.
The staff canceled the stress test because I was not fasting. I had received no instructions from diagnostic cardiology. They suggested it was my internist’s responsibility.
I deliberately ate (2 hours earlier) because my trainer always wants me to eat a light meal so I don’t get hypoglycemic during our workouts, and an exercise stress test, is, of course, a workout. The nurse practitioner said that they were concerned I would vomit. I offered to sign a waiver. She parried, saying they would not be able to get adequate images, so I was out of luck.
When I expressed concern about getting hypoglycemic and having difficulty with the test if fasting, the tech said I should bring a soda and snack. Who tells a “borderline” diabetic to bring a soda?
The tech also said she had called our home to give instructions but encountered a busy signal and had not had time to call back. I had not left the house during the prior week (or most of the past 2 years), so this was a pretty lame excuse.
I suggested to the administration that the hospital offer to email the patient instructions well ahead of time (and perhaps ask for confirmation of receipt). If calling, they should try more than once. They should also have patient instruction sheets at the physician’s office and perhaps have them on their website.
It turns out that the hospital mailed me instructions, not on the date it was ordered, but with the postmark being the day of the procedure itself. With Trump donor Louis DeJoy in charge of the U.S. Postal Service, mail across town now has to travel to Baltimore, 3 hours away, be sorted, and returned.
I did finally have the stress test, which was reassuringly normal. I was not surprised, given that the fury I felt on the first attempt had not precipitated symptoms. The hospital sent a patient ombudsman to meet me there to discuss my previous complaints. I have no idea if they implemented any of the changes I had suggested. In 2021, when I urgently had to take my husband to the ED, I couldn’t see the sign pointing toward the ED and had to ask for directions at the main entrance. They said they would fix that promptly but still have not improved the signage. How I miss the friendly community hospital we had before!
Next was trigger-finger surgery. I had developed that in 1978 from using crutches after a fall. I figured that the relative lull in COVID and my activities made it as good a time as any to finally have it fixed. The surgicenter was great; the surgeon was someone I had worked with and respected for decades. The only glitch was not really knowing how long I was going to be out of commission.
The third encounter (at yet another institution) went really well, despite some early administrative glitches. My major complaint was with the lack of communication between preoperative anesthesia and the operating room and the lack of personalization of preoperative instructions. Despite EPIC, medicines were not correctly reconciled between the different encounters, even on the same day!
After about 15 years of diplopia, which has been gradually worsening, my eye doc had suggested that I consider strabismus surgery as a sort of last-ditch effort to improve my quality of life.
Anesthesiology has stock instructions, which they made no effort to individualize. For example, there is no reason to stop NSAIDs a week before such minor surgery. That’s a problem if you depend on NSAIDs for pain control. Similarly, nothing by mouth after midnight is passé and could be tailored for the patient. I felt particularly inconvenienced that I had to go out of town for the preoperative visit and then have a redundant preoperative clearance by my physician.
The nurses in the preoperative area made me feel quite comfortable and as relaxed as I could be under the circumstances. They had a good sense of humor, which helped too. And from the time I met him a few weeks earlier, I instantly liked my surgeon and felt very comfortable with him and had complete trust.
I was pleased that the chief anesthesiologist responded promptly and undefensively to my letter expressing concerns. I do believe that he will try to improve the systemic problems.
The best part: The surgery appears to have been successful and I should have a significantly improved quality of life.
Hospitals could do so much better by improving communications with patients and by viewing them as customers whose loyalty they must earn and will value. With monopolies growing, memories of such care are quickly fading, soon to be as extinct as the family doc who made house calls.
Dr. Stone is an infectious disease specialist and author of Resilience: One Family’s Story of Hope and Triumph over Evil and Conducting Clinical Research: A Practical Guide. She disclosed no relevant financial relationships. A version of this article first appeared on Medscape.com.
We all struggle with the unwritten rules of medical culture
There is a two-lane bridge in my town. It is quaint and picturesque, and when we first moved here, I would gaze out at the water as I drove, letting my mind wander along with the seagulls drifting alongside the car. Until one day, crossing back over, I passed a school bus stopped in the other lane, and instead of waving back, the driver gave me such a fierce look of disapproval I felt like I’d been to the principal’s office. What had I done?
I started paying more attention to the pattern of the other cars on the bridge. Although it appeared to be a standard two-lane width, the lanes weren’t quite wide enough if a school bus or large truck needed to cross at the same time as a car coming from the opposite direction. They had to wait until the other lane was clear. It was an unwritten rule of the town that if you saw a school bus on the other side, you stopped your car and yielded the bridge to the bus. It took me weeks to figure this out. When I did, I felt like I finally belonged in the community. Before, I’d been an outsider.
This got me thinking about culture. Every place has its unwritten rules, whether a community or a workplace. But how do we know the culture of a place? It’s pretty much impossible until we experience it for ourselves.
When I did figure out the bridge, I had a little bit of anger, to be honest. How was I supposed to know about the lanes? There weren’t any signs. Geez.
Now, when I approach the bridge, I don’t even think about it. I know what to do if I see a bus coming.
But sometimes I remember that time of confusion before I deciphered the unwritten rule. I still have a twinge of guilt for having done something wrong, even though it hadn’t been my fault.
It reminded me of a memory from medical training. I was an MS4, and my ER rotation was in a busy county hospital with a level I trauma center. To say that the place was chaotic would be an understatement.
On the first morning, I was shown the chart rack (yes, this was back in the day of paper charts). Charts were placed in the order that patients arrived. Med students and residents were to take a chart in chronological order, go triage and assess the patient, and then find an attending. Once finished, you put the chart back on the rack and picked up the next one. This was the extent of my orientation to the ER.
The days and weeks of the rotation flew by. It was a busy and exciting time. By the end of the month, I’d come to feel a part of the team.
Until one day, after finishing discharging a patient, an attending asked me, “Where’s the billing sheet?”
I had no idea what she was talking about. No one had ever shown me a billing sheet. But by this point, as an MS4, I knew well that if an attending asked you something you didn’t know the answer to, you shouldn’t just say that you didn’t know. You should try to figure out if you could at least approximate an answer first.
As I scrambled in my mind to figure out what she was asking me, she took one look at the apprehension in my eyes and asked again, raising her voice, “You haven’t been doing the billing sheets?”
I thought back to the first day of the rotation. The cursory 30-second orientation. Chart rack. Take one. See the patient. Put it back. See the next patient. Nothing about billing sheets.
“No,” I said. “No one ever told me about – ”
But the attending didn’t care that I hadn’t been instructed on the billing sheets. She ripped into me, yelling about how she couldn’t believe I’d been working there the entire month and was not doing the billing sheets. She showed me what they were and where they were supposed to be going and, in front of the whole staff, treated me like not only the biggest idiot she’d ever worked with but that the hospital had ever seen.
As she berated me, I thought about all the patients I’d seen that month. All the billing sheets I hadn’t placed in the pile. All the attendings who hadn’t gotten credit for the patients they’d staffed with me.
But how could I have known? I wanted to ask. How could I have known if nobody showed me or told me?
It was like the bridge. I was in a new environment and somehow expected to know the rules without anyone telling me; and when I didn’t know, people treated me like I’d done it the wrong way on purpose.
I didn’t end up saying anything more to that attending. What could I have said? She had already unleashed a mountain of her pent-up anger at me.
What I did decide in that moment was that I would never be an attending like that.
Like the bridge, this memory years later can still make me feel guilt and shame for doing something wrong. Even though it wasn’t my fault.
I was thinking about this recently with the Match. Thousands of freshly graduated medical students embarking on their new positions as interns in teaching hospitals across the country.
If someone treats you poorly for not knowing something, you are not an idiot. You’ve worked incredibly hard to get where you are, and you deserve to be there.
For attendings and more senior trainees, remember what it was like to be starting in a new place. We all make mistakes, and often it’s simply because of a lack of information.
Trainees shouldn’t have to suffer and be made to feel like outsiders until they figure out the unwritten rules of the place. They belong.
Dr. Lycette is medical director of Providence Oncology and Hematology Care Clinic, Seaside, Ore. She disclosed no relevant conflicts of interest. A version of this article first appeared on Medscape.com.
There is a two-lane bridge in my town. It is quaint and picturesque, and when we first moved here, I would gaze out at the water as I drove, letting my mind wander along with the seagulls drifting alongside the car. Until one day, crossing back over, I passed a school bus stopped in the other lane, and instead of waving back, the driver gave me such a fierce look of disapproval I felt like I’d been to the principal’s office. What had I done?
I started paying more attention to the pattern of the other cars on the bridge. Although it appeared to be a standard two-lane width, the lanes weren’t quite wide enough if a school bus or large truck needed to cross at the same time as a car coming from the opposite direction. They had to wait until the other lane was clear. It was an unwritten rule of the town that if you saw a school bus on the other side, you stopped your car and yielded the bridge to the bus. It took me weeks to figure this out. When I did, I felt like I finally belonged in the community. Before, I’d been an outsider.
This got me thinking about culture. Every place has its unwritten rules, whether a community or a workplace. But how do we know the culture of a place? It’s pretty much impossible until we experience it for ourselves.
When I did figure out the bridge, I had a little bit of anger, to be honest. How was I supposed to know about the lanes? There weren’t any signs. Geez.
Now, when I approach the bridge, I don’t even think about it. I know what to do if I see a bus coming.
But sometimes I remember that time of confusion before I deciphered the unwritten rule. I still have a twinge of guilt for having done something wrong, even though it hadn’t been my fault.
It reminded me of a memory from medical training. I was an MS4, and my ER rotation was in a busy county hospital with a level I trauma center. To say that the place was chaotic would be an understatement.
On the first morning, I was shown the chart rack (yes, this was back in the day of paper charts). Charts were placed in the order that patients arrived. Med students and residents were to take a chart in chronological order, go triage and assess the patient, and then find an attending. Once finished, you put the chart back on the rack and picked up the next one. This was the extent of my orientation to the ER.
The days and weeks of the rotation flew by. It was a busy and exciting time. By the end of the month, I’d come to feel a part of the team.
Until one day, after finishing discharging a patient, an attending asked me, “Where’s the billing sheet?”
I had no idea what she was talking about. No one had ever shown me a billing sheet. But by this point, as an MS4, I knew well that if an attending asked you something you didn’t know the answer to, you shouldn’t just say that you didn’t know. You should try to figure out if you could at least approximate an answer first.
As I scrambled in my mind to figure out what she was asking me, she took one look at the apprehension in my eyes and asked again, raising her voice, “You haven’t been doing the billing sheets?”
I thought back to the first day of the rotation. The cursory 30-second orientation. Chart rack. Take one. See the patient. Put it back. See the next patient. Nothing about billing sheets.
“No,” I said. “No one ever told me about – ”
But the attending didn’t care that I hadn’t been instructed on the billing sheets. She ripped into me, yelling about how she couldn’t believe I’d been working there the entire month and was not doing the billing sheets. She showed me what they were and where they were supposed to be going and, in front of the whole staff, treated me like not only the biggest idiot she’d ever worked with but that the hospital had ever seen.
As she berated me, I thought about all the patients I’d seen that month. All the billing sheets I hadn’t placed in the pile. All the attendings who hadn’t gotten credit for the patients they’d staffed with me.
But how could I have known? I wanted to ask. How could I have known if nobody showed me or told me?
It was like the bridge. I was in a new environment and somehow expected to know the rules without anyone telling me; and when I didn’t know, people treated me like I’d done it the wrong way on purpose.
I didn’t end up saying anything more to that attending. What could I have said? She had already unleashed a mountain of her pent-up anger at me.
What I did decide in that moment was that I would never be an attending like that.
Like the bridge, this memory years later can still make me feel guilt and shame for doing something wrong. Even though it wasn’t my fault.
I was thinking about this recently with the Match. Thousands of freshly graduated medical students embarking on their new positions as interns in teaching hospitals across the country.
If someone treats you poorly for not knowing something, you are not an idiot. You’ve worked incredibly hard to get where you are, and you deserve to be there.
For attendings and more senior trainees, remember what it was like to be starting in a new place. We all make mistakes, and often it’s simply because of a lack of information.
Trainees shouldn’t have to suffer and be made to feel like outsiders until they figure out the unwritten rules of the place. They belong.
Dr. Lycette is medical director of Providence Oncology and Hematology Care Clinic, Seaside, Ore. She disclosed no relevant conflicts of interest. A version of this article first appeared on Medscape.com.
There is a two-lane bridge in my town. It is quaint and picturesque, and when we first moved here, I would gaze out at the water as I drove, letting my mind wander along with the seagulls drifting alongside the car. Until one day, crossing back over, I passed a school bus stopped in the other lane, and instead of waving back, the driver gave me such a fierce look of disapproval I felt like I’d been to the principal’s office. What had I done?
I started paying more attention to the pattern of the other cars on the bridge. Although it appeared to be a standard two-lane width, the lanes weren’t quite wide enough if a school bus or large truck needed to cross at the same time as a car coming from the opposite direction. They had to wait until the other lane was clear. It was an unwritten rule of the town that if you saw a school bus on the other side, you stopped your car and yielded the bridge to the bus. It took me weeks to figure this out. When I did, I felt like I finally belonged in the community. Before, I’d been an outsider.
This got me thinking about culture. Every place has its unwritten rules, whether a community or a workplace. But how do we know the culture of a place? It’s pretty much impossible until we experience it for ourselves.
When I did figure out the bridge, I had a little bit of anger, to be honest. How was I supposed to know about the lanes? There weren’t any signs. Geez.
Now, when I approach the bridge, I don’t even think about it. I know what to do if I see a bus coming.
But sometimes I remember that time of confusion before I deciphered the unwritten rule. I still have a twinge of guilt for having done something wrong, even though it hadn’t been my fault.
It reminded me of a memory from medical training. I was an MS4, and my ER rotation was in a busy county hospital with a level I trauma center. To say that the place was chaotic would be an understatement.
On the first morning, I was shown the chart rack (yes, this was back in the day of paper charts). Charts were placed in the order that patients arrived. Med students and residents were to take a chart in chronological order, go triage and assess the patient, and then find an attending. Once finished, you put the chart back on the rack and picked up the next one. This was the extent of my orientation to the ER.
The days and weeks of the rotation flew by. It was a busy and exciting time. By the end of the month, I’d come to feel a part of the team.
Until one day, after finishing discharging a patient, an attending asked me, “Where’s the billing sheet?”
I had no idea what she was talking about. No one had ever shown me a billing sheet. But by this point, as an MS4, I knew well that if an attending asked you something you didn’t know the answer to, you shouldn’t just say that you didn’t know. You should try to figure out if you could at least approximate an answer first.
As I scrambled in my mind to figure out what she was asking me, she took one look at the apprehension in my eyes and asked again, raising her voice, “You haven’t been doing the billing sheets?”
I thought back to the first day of the rotation. The cursory 30-second orientation. Chart rack. Take one. See the patient. Put it back. See the next patient. Nothing about billing sheets.
“No,” I said. “No one ever told me about – ”
But the attending didn’t care that I hadn’t been instructed on the billing sheets. She ripped into me, yelling about how she couldn’t believe I’d been working there the entire month and was not doing the billing sheets. She showed me what they were and where they were supposed to be going and, in front of the whole staff, treated me like not only the biggest idiot she’d ever worked with but that the hospital had ever seen.
As she berated me, I thought about all the patients I’d seen that month. All the billing sheets I hadn’t placed in the pile. All the attendings who hadn’t gotten credit for the patients they’d staffed with me.
But how could I have known? I wanted to ask. How could I have known if nobody showed me or told me?
It was like the bridge. I was in a new environment and somehow expected to know the rules without anyone telling me; and when I didn’t know, people treated me like I’d done it the wrong way on purpose.
I didn’t end up saying anything more to that attending. What could I have said? She had already unleashed a mountain of her pent-up anger at me.
What I did decide in that moment was that I would never be an attending like that.
Like the bridge, this memory years later can still make me feel guilt and shame for doing something wrong. Even though it wasn’t my fault.
I was thinking about this recently with the Match. Thousands of freshly graduated medical students embarking on their new positions as interns in teaching hospitals across the country.
If someone treats you poorly for not knowing something, you are not an idiot. You’ve worked incredibly hard to get where you are, and you deserve to be there.
For attendings and more senior trainees, remember what it was like to be starting in a new place. We all make mistakes, and often it’s simply because of a lack of information.
Trainees shouldn’t have to suffer and be made to feel like outsiders until they figure out the unwritten rules of the place. They belong.
Dr. Lycette is medical director of Providence Oncology and Hematology Care Clinic, Seaside, Ore. She disclosed no relevant conflicts of interest. A version of this article first appeared on Medscape.com.
The importance of treating insomnia in psychiatric illness
Data suggests this symptom, defined as chronic sleep onset and/or sleep continuity problems associated with impaired daytime functioning, is common in psychiatric illnesses, and can worsen their course.2
The incidence of psychiatric illness in patients with insomnia is estimated at near 50%, with the highest rates found in mood disorders such as depression and bipolar disorder, as well as anxiety disorders.3 In patients with diagnosed major depressive disorder, insomnia rates can approach 90%.4-6
Insomnia has been identified as a risk factor for development of mental illness, including doubling the risk of major depressive disorder and tripling the risk of any depressive or anxiety disorder.7,8 It can also significantly increase the risk of alcohol abuse and psychosis.8
Sleep disturbances can worsen symptoms of diagnosed mental illness, including substance abuse, mood and psychotic disorders.9-10 In one study, nearly 75% of patients with a diagnosis of schizophrenia or bipolar spectrum disorder had at least one type of sleep disturbance (insomnia, hypersomnia, or delayed sleep phase).10 This was almost twice the rate in healthy controls. Importantly, compared with well-rested subjects with mental illness in this study, sleep-disordered participants had higher rates of negative and depressive symptoms on the Positive and Negative Syndrome Scale, as well as significantly lower function via the global assessment of functioning.11,12
Additional data suggests simply being awake during the night (00:00-05:59) elevates risk of suicide. The mean incident rate of completed suicide in one study was a striking four times the rate noted during daytime hours (06:00-23:59 ) (P < .001).13
Although insomnia symptoms can resolve after relief from a particular life stressor, as many as half of patients with more severe symptoms develop a chronic course.14 This then leads to an extended use of many types of sedative-hypnotics designed and studied primarily for short-term use.15 In a survey reviewing national use of prescription drugs for insomnia, as many as 20% of individuals use a medication to target insomnia in a given month.16
Fortunately, despite the many challenges posed by COVID-19, particularly for those with psychiatric illness and limited access to care, telehealth has become more readily available. Additionally, digital versions of evidence-based treatments specifically for sleep problems, such as cognitive-behavioral therapy for insomnia (CBT-I), are regularly being developed.
The benefits of CBT-I have been demonstrated repeatedly and it is recommended as the first line treatment for insomnia by the Clinical Guidelines of the American Academy of Sleep Medicine, the Centers for Disease Control and Prevention, and the National Institutes of Health.17-21 Studies suggest benefits persist long-term, even after completing the therapy sessions, which differ in durability from medication choices.18
One group that may be particularly suited for treatment with CBT-I is women with insomnia during pregnancy or the postpartum period. In these women, options for treatment may be limited by risk of medication during breastfeeding, as well as difficulty traveling to a physician’s or therapist’s office to receive psychotherapy. However, two recent studies evaluated the use of digital CBT-I to treat insomnia during pregnancy and in the postpartum period, respectively.22-23
In both studies,the same group of women with insomnia diagnosed during pregnancy were given six weekly 20-minute sessions of digital CBT-I or standard treatment for insomnia, including medication and psychotherapy per their usual provider.
By study end, the pregnant women receiving the CBT-I intervention not only had significantly improved severity of insomnia, they also experienced improved depression and anxiety symptoms, and a decrease in the use of prescription or over-the-counter sleep aides, compared with the standard treatment group, lowering the fetal exposure to medication during pregnancy.22
In the more recent study, the same group was followed for 6 months post partum.23 Results were again notable, with the women who received CBT-I reporting significantly less insomnia, as well as significantly lower rates of probable major depression at 3 and 6 months (18% vs. 4%, 10% vs. 0%, respectively.) They also exhibited lower rates of moderate to severe anxiety (17% vs. 4%) at 3 months, compared with those receiving standard care. With as many as one in seven women suffering from postpartum depression, these findings represent a substantial public health benefit.
In summary, insomnia is a critical area of focus for any provider diagnosing and treating psychiatric illness. Attempts to optimize sleep, whether through CBT-I or other psychotherapy approaches, or evidence-based medications dosed for appropriate lengths and at safe doses, should be a part of most, if not all, clinical encounters.
Dr. Reid is a board-certified psychiatrist and award-winning medical educator with a private practice in Philadelphia, as well as a clinical faculty role at the University of Pennsylvania, also in Philadelphia. She attended medical school at Columbia University, New York, and completed her psychiatry residency at the University of California, Los Angeles. Dr. Reid is a regular contributor to Psychology Today with her blog, “Think Like a Shrink,” and writes and podcasts as The Reflective Doc.
References
1. Voitsidis P et al. Psychiatry Res. 2020 Jul;289:113076. doi: 10.1016/j.psychres.2020.113076.
2. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, Va.: American Psychiatric Publishing, 2013.
3. Ford DE and Kamerow DB. JAMA. 1989;262(11):1479-84. doi: 10.1001/jama.1989.03430110069030.
4. Ohayon MM and Roth T. J Psychiatr Res. Jan-Feb 2003;37(1):9-15. doi: 10.1016/s0022-3956(02)00052-3.
5. Seow LSE et al. J Ment Health. 2016 Dec;25(6):492-9. doi: 10.3109/09638237.2015.1124390.
6. Thase ME. J Clin Psychiatry. 1999;60 Suppl 17:28-31; discussion 46-8.
7. Baglioni C et al. J Affect Disord. 2011 Dec;135(1-3):10-9. doi: 10.1016/j.jad.2011.01.011.
8. Hertenstein E et al. Sleep Med Rev. 2019 Feb;43:96-105. doi: 10.1016/j.smrv.2018.10.006.
9. Brower KJ et al. Medical Hypotheses. 2010;74(5):928-33. doi: 10.1016/j.mehy.2009.10.020.
10. Laskemoen JF et al. Compr Psychiatry. 2019 May;91:6-12. doi: 10.1016/j.comppsych.2019.02.006.
11. Kay SR et al. Schizophr Bull. 1987;13(2):261-76. doi: 10.1093/schbul/13.2.261.
12. Hall R. Psychosomatics. May-Jun 1995;36(3):267-75. doi: 10.1016/S0033-3182(95)71666-8.
13. Perlis ML et al. J Clin Psychiatry. 2016 Jun;77(6):e726-33. doi: 10.4088/JCP.15m10131.
14. Morin CM et al. Arch Intern Med. 2009 Mar 9. doi: 10.1001/archinternmed.2008.610.
15. Cheung J et al. Sleep Med Clin. 2019 Jun;14(2):253-65. doi: 10.1016/j.jsmc.2019.01.006.
16. Bertisch SM et al. Sleep. 2014 Feb 1. doi: 10.5665/sleep.3410.
17. Okajima I et al. Sleep Biol Rhythms. 2010 Nov 28. doi: 10.1111/j.1479-8425.2010.00481.x.
18. Trauer JM et al. Ann Intern Med. 2015 Aug 4. doi: 10.7326/M14-2841.
19. Edinger J et al. J Clin Sleep Med. 2021 Feb 1. doi: 10.5664/jcsm.8986.
20. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/sleep/for-clinicians.html.
21. National Institutes of Health. Sleep Health. https://www.nhlbi.nih.gov/health-topics/education-and-awareness/sleep-health.
22. Felder JN et al. JAMA Psychiatry. 2020;77(5):484-92. doi:10.1001/jamapsychiatry.2019.4491.
23. Felder JN et al. Sleep. 2022 Feb 14. doi: 10.1093/sleep/zsab280.
Data suggests this symptom, defined as chronic sleep onset and/or sleep continuity problems associated with impaired daytime functioning, is common in psychiatric illnesses, and can worsen their course.2
The incidence of psychiatric illness in patients with insomnia is estimated at near 50%, with the highest rates found in mood disorders such as depression and bipolar disorder, as well as anxiety disorders.3 In patients with diagnosed major depressive disorder, insomnia rates can approach 90%.4-6
Insomnia has been identified as a risk factor for development of mental illness, including doubling the risk of major depressive disorder and tripling the risk of any depressive or anxiety disorder.7,8 It can also significantly increase the risk of alcohol abuse and psychosis.8
Sleep disturbances can worsen symptoms of diagnosed mental illness, including substance abuse, mood and psychotic disorders.9-10 In one study, nearly 75% of patients with a diagnosis of schizophrenia or bipolar spectrum disorder had at least one type of sleep disturbance (insomnia, hypersomnia, or delayed sleep phase).10 This was almost twice the rate in healthy controls. Importantly, compared with well-rested subjects with mental illness in this study, sleep-disordered participants had higher rates of negative and depressive symptoms on the Positive and Negative Syndrome Scale, as well as significantly lower function via the global assessment of functioning.11,12
Additional data suggests simply being awake during the night (00:00-05:59) elevates risk of suicide. The mean incident rate of completed suicide in one study was a striking four times the rate noted during daytime hours (06:00-23:59 ) (P < .001).13
Although insomnia symptoms can resolve after relief from a particular life stressor, as many as half of patients with more severe symptoms develop a chronic course.14 This then leads to an extended use of many types of sedative-hypnotics designed and studied primarily for short-term use.15 In a survey reviewing national use of prescription drugs for insomnia, as many as 20% of individuals use a medication to target insomnia in a given month.16
Fortunately, despite the many challenges posed by COVID-19, particularly for those with psychiatric illness and limited access to care, telehealth has become more readily available. Additionally, digital versions of evidence-based treatments specifically for sleep problems, such as cognitive-behavioral therapy for insomnia (CBT-I), are regularly being developed.
The benefits of CBT-I have been demonstrated repeatedly and it is recommended as the first line treatment for insomnia by the Clinical Guidelines of the American Academy of Sleep Medicine, the Centers for Disease Control and Prevention, and the National Institutes of Health.17-21 Studies suggest benefits persist long-term, even after completing the therapy sessions, which differ in durability from medication choices.18
One group that may be particularly suited for treatment with CBT-I is women with insomnia during pregnancy or the postpartum period. In these women, options for treatment may be limited by risk of medication during breastfeeding, as well as difficulty traveling to a physician’s or therapist’s office to receive psychotherapy. However, two recent studies evaluated the use of digital CBT-I to treat insomnia during pregnancy and in the postpartum period, respectively.22-23
In both studies,the same group of women with insomnia diagnosed during pregnancy were given six weekly 20-minute sessions of digital CBT-I or standard treatment for insomnia, including medication and psychotherapy per their usual provider.
By study end, the pregnant women receiving the CBT-I intervention not only had significantly improved severity of insomnia, they also experienced improved depression and anxiety symptoms, and a decrease in the use of prescription or over-the-counter sleep aides, compared with the standard treatment group, lowering the fetal exposure to medication during pregnancy.22
In the more recent study, the same group was followed for 6 months post partum.23 Results were again notable, with the women who received CBT-I reporting significantly less insomnia, as well as significantly lower rates of probable major depression at 3 and 6 months (18% vs. 4%, 10% vs. 0%, respectively.) They also exhibited lower rates of moderate to severe anxiety (17% vs. 4%) at 3 months, compared with those receiving standard care. With as many as one in seven women suffering from postpartum depression, these findings represent a substantial public health benefit.
In summary, insomnia is a critical area of focus for any provider diagnosing and treating psychiatric illness. Attempts to optimize sleep, whether through CBT-I or other psychotherapy approaches, or evidence-based medications dosed for appropriate lengths and at safe doses, should be a part of most, if not all, clinical encounters.
Dr. Reid is a board-certified psychiatrist and award-winning medical educator with a private practice in Philadelphia, as well as a clinical faculty role at the University of Pennsylvania, also in Philadelphia. She attended medical school at Columbia University, New York, and completed her psychiatry residency at the University of California, Los Angeles. Dr. Reid is a regular contributor to Psychology Today with her blog, “Think Like a Shrink,” and writes and podcasts as The Reflective Doc.
References
1. Voitsidis P et al. Psychiatry Res. 2020 Jul;289:113076. doi: 10.1016/j.psychres.2020.113076.
2. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, Va.: American Psychiatric Publishing, 2013.
3. Ford DE and Kamerow DB. JAMA. 1989;262(11):1479-84. doi: 10.1001/jama.1989.03430110069030.
4. Ohayon MM and Roth T. J Psychiatr Res. Jan-Feb 2003;37(1):9-15. doi: 10.1016/s0022-3956(02)00052-3.
5. Seow LSE et al. J Ment Health. 2016 Dec;25(6):492-9. doi: 10.3109/09638237.2015.1124390.
6. Thase ME. J Clin Psychiatry. 1999;60 Suppl 17:28-31; discussion 46-8.
7. Baglioni C et al. J Affect Disord. 2011 Dec;135(1-3):10-9. doi: 10.1016/j.jad.2011.01.011.
8. Hertenstein E et al. Sleep Med Rev. 2019 Feb;43:96-105. doi: 10.1016/j.smrv.2018.10.006.
9. Brower KJ et al. Medical Hypotheses. 2010;74(5):928-33. doi: 10.1016/j.mehy.2009.10.020.
10. Laskemoen JF et al. Compr Psychiatry. 2019 May;91:6-12. doi: 10.1016/j.comppsych.2019.02.006.
11. Kay SR et al. Schizophr Bull. 1987;13(2):261-76. doi: 10.1093/schbul/13.2.261.
12. Hall R. Psychosomatics. May-Jun 1995;36(3):267-75. doi: 10.1016/S0033-3182(95)71666-8.
13. Perlis ML et al. J Clin Psychiatry. 2016 Jun;77(6):e726-33. doi: 10.4088/JCP.15m10131.
14. Morin CM et al. Arch Intern Med. 2009 Mar 9. doi: 10.1001/archinternmed.2008.610.
15. Cheung J et al. Sleep Med Clin. 2019 Jun;14(2):253-65. doi: 10.1016/j.jsmc.2019.01.006.
16. Bertisch SM et al. Sleep. 2014 Feb 1. doi: 10.5665/sleep.3410.
17. Okajima I et al. Sleep Biol Rhythms. 2010 Nov 28. doi: 10.1111/j.1479-8425.2010.00481.x.
18. Trauer JM et al. Ann Intern Med. 2015 Aug 4. doi: 10.7326/M14-2841.
19. Edinger J et al. J Clin Sleep Med. 2021 Feb 1. doi: 10.5664/jcsm.8986.
20. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/sleep/for-clinicians.html.
21. National Institutes of Health. Sleep Health. https://www.nhlbi.nih.gov/health-topics/education-and-awareness/sleep-health.
22. Felder JN et al. JAMA Psychiatry. 2020;77(5):484-92. doi:10.1001/jamapsychiatry.2019.4491.
23. Felder JN et al. Sleep. 2022 Feb 14. doi: 10.1093/sleep/zsab280.
Data suggests this symptom, defined as chronic sleep onset and/or sleep continuity problems associated with impaired daytime functioning, is common in psychiatric illnesses, and can worsen their course.2
The incidence of psychiatric illness in patients with insomnia is estimated at near 50%, with the highest rates found in mood disorders such as depression and bipolar disorder, as well as anxiety disorders.3 In patients with diagnosed major depressive disorder, insomnia rates can approach 90%.4-6
Insomnia has been identified as a risk factor for development of mental illness, including doubling the risk of major depressive disorder and tripling the risk of any depressive or anxiety disorder.7,8 It can also significantly increase the risk of alcohol abuse and psychosis.8
Sleep disturbances can worsen symptoms of diagnosed mental illness, including substance abuse, mood and psychotic disorders.9-10 In one study, nearly 75% of patients with a diagnosis of schizophrenia or bipolar spectrum disorder had at least one type of sleep disturbance (insomnia, hypersomnia, or delayed sleep phase).10 This was almost twice the rate in healthy controls. Importantly, compared with well-rested subjects with mental illness in this study, sleep-disordered participants had higher rates of negative and depressive symptoms on the Positive and Negative Syndrome Scale, as well as significantly lower function via the global assessment of functioning.11,12
Additional data suggests simply being awake during the night (00:00-05:59) elevates risk of suicide. The mean incident rate of completed suicide in one study was a striking four times the rate noted during daytime hours (06:00-23:59 ) (P < .001).13
Although insomnia symptoms can resolve after relief from a particular life stressor, as many as half of patients with more severe symptoms develop a chronic course.14 This then leads to an extended use of many types of sedative-hypnotics designed and studied primarily for short-term use.15 In a survey reviewing national use of prescription drugs for insomnia, as many as 20% of individuals use a medication to target insomnia in a given month.16
Fortunately, despite the many challenges posed by COVID-19, particularly for those with psychiatric illness and limited access to care, telehealth has become more readily available. Additionally, digital versions of evidence-based treatments specifically for sleep problems, such as cognitive-behavioral therapy for insomnia (CBT-I), are regularly being developed.
The benefits of CBT-I have been demonstrated repeatedly and it is recommended as the first line treatment for insomnia by the Clinical Guidelines of the American Academy of Sleep Medicine, the Centers for Disease Control and Prevention, and the National Institutes of Health.17-21 Studies suggest benefits persist long-term, even after completing the therapy sessions, which differ in durability from medication choices.18
One group that may be particularly suited for treatment with CBT-I is women with insomnia during pregnancy or the postpartum period. In these women, options for treatment may be limited by risk of medication during breastfeeding, as well as difficulty traveling to a physician’s or therapist’s office to receive psychotherapy. However, two recent studies evaluated the use of digital CBT-I to treat insomnia during pregnancy and in the postpartum period, respectively.22-23
In both studies,the same group of women with insomnia diagnosed during pregnancy were given six weekly 20-minute sessions of digital CBT-I or standard treatment for insomnia, including medication and psychotherapy per their usual provider.
By study end, the pregnant women receiving the CBT-I intervention not only had significantly improved severity of insomnia, they also experienced improved depression and anxiety symptoms, and a decrease in the use of prescription or over-the-counter sleep aides, compared with the standard treatment group, lowering the fetal exposure to medication during pregnancy.22
In the more recent study, the same group was followed for 6 months post partum.23 Results were again notable, with the women who received CBT-I reporting significantly less insomnia, as well as significantly lower rates of probable major depression at 3 and 6 months (18% vs. 4%, 10% vs. 0%, respectively.) They also exhibited lower rates of moderate to severe anxiety (17% vs. 4%) at 3 months, compared with those receiving standard care. With as many as one in seven women suffering from postpartum depression, these findings represent a substantial public health benefit.
In summary, insomnia is a critical area of focus for any provider diagnosing and treating psychiatric illness. Attempts to optimize sleep, whether through CBT-I or other psychotherapy approaches, or evidence-based medications dosed for appropriate lengths and at safe doses, should be a part of most, if not all, clinical encounters.
Dr. Reid is a board-certified psychiatrist and award-winning medical educator with a private practice in Philadelphia, as well as a clinical faculty role at the University of Pennsylvania, also in Philadelphia. She attended medical school at Columbia University, New York, and completed her psychiatry residency at the University of California, Los Angeles. Dr. Reid is a regular contributor to Psychology Today with her blog, “Think Like a Shrink,” and writes and podcasts as The Reflective Doc.
References
1. Voitsidis P et al. Psychiatry Res. 2020 Jul;289:113076. doi: 10.1016/j.psychres.2020.113076.
2. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, Va.: American Psychiatric Publishing, 2013.
3. Ford DE and Kamerow DB. JAMA. 1989;262(11):1479-84. doi: 10.1001/jama.1989.03430110069030.
4. Ohayon MM and Roth T. J Psychiatr Res. Jan-Feb 2003;37(1):9-15. doi: 10.1016/s0022-3956(02)00052-3.
5. Seow LSE et al. J Ment Health. 2016 Dec;25(6):492-9. doi: 10.3109/09638237.2015.1124390.
6. Thase ME. J Clin Psychiatry. 1999;60 Suppl 17:28-31; discussion 46-8.
7. Baglioni C et al. J Affect Disord. 2011 Dec;135(1-3):10-9. doi: 10.1016/j.jad.2011.01.011.
8. Hertenstein E et al. Sleep Med Rev. 2019 Feb;43:96-105. doi: 10.1016/j.smrv.2018.10.006.
9. Brower KJ et al. Medical Hypotheses. 2010;74(5):928-33. doi: 10.1016/j.mehy.2009.10.020.
10. Laskemoen JF et al. Compr Psychiatry. 2019 May;91:6-12. doi: 10.1016/j.comppsych.2019.02.006.
11. Kay SR et al. Schizophr Bull. 1987;13(2):261-76. doi: 10.1093/schbul/13.2.261.
12. Hall R. Psychosomatics. May-Jun 1995;36(3):267-75. doi: 10.1016/S0033-3182(95)71666-8.
13. Perlis ML et al. J Clin Psychiatry. 2016 Jun;77(6):e726-33. doi: 10.4088/JCP.15m10131.
14. Morin CM et al. Arch Intern Med. 2009 Mar 9. doi: 10.1001/archinternmed.2008.610.
15. Cheung J et al. Sleep Med Clin. 2019 Jun;14(2):253-65. doi: 10.1016/j.jsmc.2019.01.006.
16. Bertisch SM et al. Sleep. 2014 Feb 1. doi: 10.5665/sleep.3410.
17. Okajima I et al. Sleep Biol Rhythms. 2010 Nov 28. doi: 10.1111/j.1479-8425.2010.00481.x.
18. Trauer JM et al. Ann Intern Med. 2015 Aug 4. doi: 10.7326/M14-2841.
19. Edinger J et al. J Clin Sleep Med. 2021 Feb 1. doi: 10.5664/jcsm.8986.
20. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/sleep/for-clinicians.html.
21. National Institutes of Health. Sleep Health. https://www.nhlbi.nih.gov/health-topics/education-and-awareness/sleep-health.
22. Felder JN et al. JAMA Psychiatry. 2020;77(5):484-92. doi:10.1001/jamapsychiatry.2019.4491.
23. Felder JN et al. Sleep. 2022 Feb 14. doi: 10.1093/sleep/zsab280.
It’s a gimmick
March 30 was National Doctor’s Day, which resulted in my getting all kinds of generic emails from pharmaceutical reps, market research places, insurance companies, and the two hospitals I’m on staff at.
They all had similar meaningless platitudes thanking me for what I do, reassuring me that I’m appreciated, that I make the world a better place, yadda yadda yadda. The hospital even said I could swing by the medical staff office and pick up an “appreciation bag,” which I’m told contained a T-shirt, bottle of hand sanitizer, and a few other trinkets.
Spare me.
I’m not looking for any of that. In fact, I really don’t care.
Wishing me a “Happy Doctors Day” after spending the other 364 days denying my claims, refusing to cover tests or medications for my patients who need them (I don’t order these things for the hell of it, you know), telling me that I’m bringing down your Press Ganey scores, complaining about the copay that I have no control over, yelling at my staff for doing their jobs ... is pretty damn hollow.
It’s kind of like Mother’s Day: If you’re a jackass to your mom most of the year, sending her flowers on a Sunday in May doesn’t make it all right.
People also seem to forget that, in a small practice, my awesome staff is an extension of myself. Mistreating them, then wishing me a “Happy Doctor’s Day,” is also worthless.
I still like what I do. All the hassles from insurance companies, various administrators, the occasional angry patient … after all these years, they put a dent in it, but I still have no regrets about the course I’ve chosen. They can’t take away the happiness I get from helping those who need me.
It’s a job I love that’s allowed me to support my family and work with two wonderful staff members I’d never have met otherwise.
And that’s all I need.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
March 30 was National Doctor’s Day, which resulted in my getting all kinds of generic emails from pharmaceutical reps, market research places, insurance companies, and the two hospitals I’m on staff at.
They all had similar meaningless platitudes thanking me for what I do, reassuring me that I’m appreciated, that I make the world a better place, yadda yadda yadda. The hospital even said I could swing by the medical staff office and pick up an “appreciation bag,” which I’m told contained a T-shirt, bottle of hand sanitizer, and a few other trinkets.
Spare me.
I’m not looking for any of that. In fact, I really don’t care.
Wishing me a “Happy Doctors Day” after spending the other 364 days denying my claims, refusing to cover tests or medications for my patients who need them (I don’t order these things for the hell of it, you know), telling me that I’m bringing down your Press Ganey scores, complaining about the copay that I have no control over, yelling at my staff for doing their jobs ... is pretty damn hollow.
It’s kind of like Mother’s Day: If you’re a jackass to your mom most of the year, sending her flowers on a Sunday in May doesn’t make it all right.
People also seem to forget that, in a small practice, my awesome staff is an extension of myself. Mistreating them, then wishing me a “Happy Doctor’s Day,” is also worthless.
I still like what I do. All the hassles from insurance companies, various administrators, the occasional angry patient … after all these years, they put a dent in it, but I still have no regrets about the course I’ve chosen. They can’t take away the happiness I get from helping those who need me.
It’s a job I love that’s allowed me to support my family and work with two wonderful staff members I’d never have met otherwise.
And that’s all I need.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
March 30 was National Doctor’s Day, which resulted in my getting all kinds of generic emails from pharmaceutical reps, market research places, insurance companies, and the two hospitals I’m on staff at.
They all had similar meaningless platitudes thanking me for what I do, reassuring me that I’m appreciated, that I make the world a better place, yadda yadda yadda. The hospital even said I could swing by the medical staff office and pick up an “appreciation bag,” which I’m told contained a T-shirt, bottle of hand sanitizer, and a few other trinkets.
Spare me.
I’m not looking for any of that. In fact, I really don’t care.
Wishing me a “Happy Doctors Day” after spending the other 364 days denying my claims, refusing to cover tests or medications for my patients who need them (I don’t order these things for the hell of it, you know), telling me that I’m bringing down your Press Ganey scores, complaining about the copay that I have no control over, yelling at my staff for doing their jobs ... is pretty damn hollow.
It’s kind of like Mother’s Day: If you’re a jackass to your mom most of the year, sending her flowers on a Sunday in May doesn’t make it all right.
People also seem to forget that, in a small practice, my awesome staff is an extension of myself. Mistreating them, then wishing me a “Happy Doctor’s Day,” is also worthless.
I still like what I do. All the hassles from insurance companies, various administrators, the occasional angry patient … after all these years, they put a dent in it, but I still have no regrets about the course I’ve chosen. They can’t take away the happiness I get from helping those who need me.
It’s a job I love that’s allowed me to support my family and work with two wonderful staff members I’d never have met otherwise.
And that’s all I need.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
Give patients can’ts but also can do’s
On his last shift in the last hockey game of the regular season, our 14-year-old grandson broke his arm. Although this was his first fracture, the rest of the nuclear family has had ample experience with orthopedic trauma over the last year, both planned and unplanned.
As I drove Peter and my daughter-in-law to his first postsetting and casting appointment I told him how sorry I was that he had been told “no contact sports for the next 3 months.” This was a tough pill for a kid eager to begin his first high school lacrosse season. Then I asked him what the doctor had told him he could do in the way of activity.
Based on personal and professional experience I was not surprised when he told me that no one had suggested things he could be doing. In fact, being a cautious and thoughtful kid, he was concerned about what he should be doing around the house let alone any athletic activities. It turns out he wasn’t even lifting his laptop computer with two hands because some nurse had told him not to lift anything over 2 pounds.
I told him “Peter, even some of the most experienced doctors focus on the ‘can’ts’ and forget to tell you the ‘cans’ and ‘shoulds.’ While you’re in the waiting room make up a mental list of what you would like to be doing that you aren’t.”
As he climbed back in the car for the ride home I asked how the visit went. The x-ray showed good alignment and the doctor was pleased. But, as I predicted, they were already on the launch pad to the receptionist to make a follow-up appointment without the physician uttering a single word about what activities he could resume. Always a very coachable kid, Peter piped up with the list he had created in the waiting room and was relieved to hear that he could do anything as long as it didn’t hurt. In fact, the doctor encouraged him to use his fingers because it might speed the healing.
Not every patient, regardless of age, is as cautious as my grandson and in some circumstances the physician must err on the side of emphasizing the “don’ts.” However, in my experience, too many physicians forget to include a generous list of “can do’s” in their visit closing discussions. This oversight is a mistake for several reasons.
First, and maybe most importantly, even a brief discussion of “can do’s” can soften the depressing message that the patient will not be able to do things he or she enjoys. I can’t quote the references but I am sure there is plenty of evidence that depression slows the healing process.
Second, and this is particularly true in older patients with orthopedic problems – failure to include a plan for return to activity can hinder recovery. I can recall more than a few patients who were seen in the emergency department and diagnosed with sprains but not given even the simplest instructions on how to begin moving the injured joint. When they finally returned to see me we had to begin the painful and unnecessary project of thawing a frozen joint.
Fortunately, we have evolved past the era when best rest was near the top of the list of our recommended remedies. However, there still remains a bias against activity in some situations. The most recent example is the evolving strategies for the management of concussion. There is some evidence that involving the patient in a return to activity plan may shorten the time to recovery. The myth about brain rest has been slow to die.
Finally, providing the patient with a personalized list of “can do’s” makes good business sense because it can head off those time-gobbling call backs that tie up you and your office staff. As an experienced physician, you have probably learned the most frequently asked “Can Jason do ... ?” questions. Make your own list and give the patient your answers. An ounce of anticipatory guidance is worth hours on the telephone or sorting through the email inbox.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
On his last shift in the last hockey game of the regular season, our 14-year-old grandson broke his arm. Although this was his first fracture, the rest of the nuclear family has had ample experience with orthopedic trauma over the last year, both planned and unplanned.
As I drove Peter and my daughter-in-law to his first postsetting and casting appointment I told him how sorry I was that he had been told “no contact sports for the next 3 months.” This was a tough pill for a kid eager to begin his first high school lacrosse season. Then I asked him what the doctor had told him he could do in the way of activity.
Based on personal and professional experience I was not surprised when he told me that no one had suggested things he could be doing. In fact, being a cautious and thoughtful kid, he was concerned about what he should be doing around the house let alone any athletic activities. It turns out he wasn’t even lifting his laptop computer with two hands because some nurse had told him not to lift anything over 2 pounds.
I told him “Peter, even some of the most experienced doctors focus on the ‘can’ts’ and forget to tell you the ‘cans’ and ‘shoulds.’ While you’re in the waiting room make up a mental list of what you would like to be doing that you aren’t.”
As he climbed back in the car for the ride home I asked how the visit went. The x-ray showed good alignment and the doctor was pleased. But, as I predicted, they were already on the launch pad to the receptionist to make a follow-up appointment without the physician uttering a single word about what activities he could resume. Always a very coachable kid, Peter piped up with the list he had created in the waiting room and was relieved to hear that he could do anything as long as it didn’t hurt. In fact, the doctor encouraged him to use his fingers because it might speed the healing.
Not every patient, regardless of age, is as cautious as my grandson and in some circumstances the physician must err on the side of emphasizing the “don’ts.” However, in my experience, too many physicians forget to include a generous list of “can do’s” in their visit closing discussions. This oversight is a mistake for several reasons.
First, and maybe most importantly, even a brief discussion of “can do’s” can soften the depressing message that the patient will not be able to do things he or she enjoys. I can’t quote the references but I am sure there is plenty of evidence that depression slows the healing process.
Second, and this is particularly true in older patients with orthopedic problems – failure to include a plan for return to activity can hinder recovery. I can recall more than a few patients who were seen in the emergency department and diagnosed with sprains but not given even the simplest instructions on how to begin moving the injured joint. When they finally returned to see me we had to begin the painful and unnecessary project of thawing a frozen joint.
Fortunately, we have evolved past the era when best rest was near the top of the list of our recommended remedies. However, there still remains a bias against activity in some situations. The most recent example is the evolving strategies for the management of concussion. There is some evidence that involving the patient in a return to activity plan may shorten the time to recovery. The myth about brain rest has been slow to die.
Finally, providing the patient with a personalized list of “can do’s” makes good business sense because it can head off those time-gobbling call backs that tie up you and your office staff. As an experienced physician, you have probably learned the most frequently asked “Can Jason do ... ?” questions. Make your own list and give the patient your answers. An ounce of anticipatory guidance is worth hours on the telephone or sorting through the email inbox.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
On his last shift in the last hockey game of the regular season, our 14-year-old grandson broke his arm. Although this was his first fracture, the rest of the nuclear family has had ample experience with orthopedic trauma over the last year, both planned and unplanned.
As I drove Peter and my daughter-in-law to his first postsetting and casting appointment I told him how sorry I was that he had been told “no contact sports for the next 3 months.” This was a tough pill for a kid eager to begin his first high school lacrosse season. Then I asked him what the doctor had told him he could do in the way of activity.
Based on personal and professional experience I was not surprised when he told me that no one had suggested things he could be doing. In fact, being a cautious and thoughtful kid, he was concerned about what he should be doing around the house let alone any athletic activities. It turns out he wasn’t even lifting his laptop computer with two hands because some nurse had told him not to lift anything over 2 pounds.
I told him “Peter, even some of the most experienced doctors focus on the ‘can’ts’ and forget to tell you the ‘cans’ and ‘shoulds.’ While you’re in the waiting room make up a mental list of what you would like to be doing that you aren’t.”
As he climbed back in the car for the ride home I asked how the visit went. The x-ray showed good alignment and the doctor was pleased. But, as I predicted, they were already on the launch pad to the receptionist to make a follow-up appointment without the physician uttering a single word about what activities he could resume. Always a very coachable kid, Peter piped up with the list he had created in the waiting room and was relieved to hear that he could do anything as long as it didn’t hurt. In fact, the doctor encouraged him to use his fingers because it might speed the healing.
Not every patient, regardless of age, is as cautious as my grandson and in some circumstances the physician must err on the side of emphasizing the “don’ts.” However, in my experience, too many physicians forget to include a generous list of “can do’s” in their visit closing discussions. This oversight is a mistake for several reasons.
First, and maybe most importantly, even a brief discussion of “can do’s” can soften the depressing message that the patient will not be able to do things he or she enjoys. I can’t quote the references but I am sure there is plenty of evidence that depression slows the healing process.
Second, and this is particularly true in older patients with orthopedic problems – failure to include a plan for return to activity can hinder recovery. I can recall more than a few patients who were seen in the emergency department and diagnosed with sprains but not given even the simplest instructions on how to begin moving the injured joint. When they finally returned to see me we had to begin the painful and unnecessary project of thawing a frozen joint.
Fortunately, we have evolved past the era when best rest was near the top of the list of our recommended remedies. However, there still remains a bias against activity in some situations. The most recent example is the evolving strategies for the management of concussion. There is some evidence that involving the patient in a return to activity plan may shorten the time to recovery. The myth about brain rest has been slow to die.
Finally, providing the patient with a personalized list of “can do’s” makes good business sense because it can head off those time-gobbling call backs that tie up you and your office staff. As an experienced physician, you have probably learned the most frequently asked “Can Jason do ... ?” questions. Make your own list and give the patient your answers. An ounce of anticipatory guidance is worth hours on the telephone or sorting through the email inbox.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
Celebrating our colleagues
several of whom I am privileged to work with on a daily basis. We also welcome the newest members of AGA’s Governing Board, Maria T. Abreu, MD, AGAF, who is an outstanding leader and representative of a much larger group of volunteer members who work tirelessly to advance AGA’s initiatives to enhance the clinical practice of gastroenterology and improve patient outcomes. The nominating committee also appointed the following slate of councilors, which is subject to membership vote: Kim Barrett, PhD, AGAF; Lawrence Kosinski, MD, MBA, AGAF; and Sheryl Pfeil, MD, AGAF.
This month’s issue also highlights two newly-developed clinical risk-prediction tools – one designed to assist clinicians in predicting alcoholic hepatitis mortality, and another designed to identify inflammatory bowel disease (IBD) patients at high-risk of developing venous thromboembolism (VTE) post-hospitalization. While no prediction model is perfect, these tools can positively impact clinical decision-making and contribute to improved patient outcomes. We also include recommendations on managing IBD in older patients, and report on a study suggesting an increase in late-stage cancer diagnoses in the wake of the COVID-19 pandemic. AGA’s new clinical guideline on systemic therapy for hepatocellular carcinoma and Clinical Practice Update on non-invasive colorectal cancer screening also are featured. Finally, in this month’s Practice Management Toolbox, Dr. Feuerstein, Dr. Sofia, Dr. Guha, and Dr. Streett offer timely recommendations regarding how to overcome existing barriers to achieve high-value IBD care.
Megan A. Adams, MD, JD, MSc
Editor in Chief
several of whom I am privileged to work with on a daily basis. We also welcome the newest members of AGA’s Governing Board, Maria T. Abreu, MD, AGAF, who is an outstanding leader and representative of a much larger group of volunteer members who work tirelessly to advance AGA’s initiatives to enhance the clinical practice of gastroenterology and improve patient outcomes. The nominating committee also appointed the following slate of councilors, which is subject to membership vote: Kim Barrett, PhD, AGAF; Lawrence Kosinski, MD, MBA, AGAF; and Sheryl Pfeil, MD, AGAF.
This month’s issue also highlights two newly-developed clinical risk-prediction tools – one designed to assist clinicians in predicting alcoholic hepatitis mortality, and another designed to identify inflammatory bowel disease (IBD) patients at high-risk of developing venous thromboembolism (VTE) post-hospitalization. While no prediction model is perfect, these tools can positively impact clinical decision-making and contribute to improved patient outcomes. We also include recommendations on managing IBD in older patients, and report on a study suggesting an increase in late-stage cancer diagnoses in the wake of the COVID-19 pandemic. AGA’s new clinical guideline on systemic therapy for hepatocellular carcinoma and Clinical Practice Update on non-invasive colorectal cancer screening also are featured. Finally, in this month’s Practice Management Toolbox, Dr. Feuerstein, Dr. Sofia, Dr. Guha, and Dr. Streett offer timely recommendations regarding how to overcome existing barriers to achieve high-value IBD care.
Megan A. Adams, MD, JD, MSc
Editor in Chief
several of whom I am privileged to work with on a daily basis. We also welcome the newest members of AGA’s Governing Board, Maria T. Abreu, MD, AGAF, who is an outstanding leader and representative of a much larger group of volunteer members who work tirelessly to advance AGA’s initiatives to enhance the clinical practice of gastroenterology and improve patient outcomes. The nominating committee also appointed the following slate of councilors, which is subject to membership vote: Kim Barrett, PhD, AGAF; Lawrence Kosinski, MD, MBA, AGAF; and Sheryl Pfeil, MD, AGAF.
This month’s issue also highlights two newly-developed clinical risk-prediction tools – one designed to assist clinicians in predicting alcoholic hepatitis mortality, and another designed to identify inflammatory bowel disease (IBD) patients at high-risk of developing venous thromboembolism (VTE) post-hospitalization. While no prediction model is perfect, these tools can positively impact clinical decision-making and contribute to improved patient outcomes. We also include recommendations on managing IBD in older patients, and report on a study suggesting an increase in late-stage cancer diagnoses in the wake of the COVID-19 pandemic. AGA’s new clinical guideline on systemic therapy for hepatocellular carcinoma and Clinical Practice Update on non-invasive colorectal cancer screening also are featured. Finally, in this month’s Practice Management Toolbox, Dr. Feuerstein, Dr. Sofia, Dr. Guha, and Dr. Streett offer timely recommendations regarding how to overcome existing barriers to achieve high-value IBD care.
Megan A. Adams, MD, JD, MSc
Editor in Chief
How and why the language of medicine must change
The United States has never achieved a single high standard of medical care equity for all of its people, and the trend line does not appear favorable. The closest we have reached is basic Medicare (Parts A and B), military medicine, the Veterans Health Administration, and large nonprofit groups like Kaiser Permanente. It seems that the nature of we individualistic Americans is to always try to seek an advantage.
But even achieving equity in medical care would not ensure equity in health. The social determinants of health (income level, education, politics, government, geography, neighborhood, country of origin, language spoken, literacy, gender, and yes – race and ethnicity) have far more influence on health equity than does medical care.
Narratives can both reflect and influence culture. Considering the harmful effects of the current political divisiveness in the United States, the timing is ideal for our three leading medical and health education organizations – the American Medical Association, the Association of American Medical Colleges (AAMC), and the Centers for Disease Control and Prevention – to publish a definitive position paper called “Advancing Health Equity: A Guide to Language, Narrative and Concepts.”
What’s in a word?
According to William Shakespeare, “A rose by any other name would smell as sweet” (Romeo and Juliet). Maybe. But if the word used were “thorn” or “thistle,” it just would not be the same.
Words comprise language and wield enormous power with human beings. Wars are fought over geographic boundaries often defined by the language spoken by the people: think 2022, Russian-speaking Ukrainians. Think Winston Churchill’s massive 1,500-page “A History of the English-Speaking Peoples.” Think about the political power of French in Quebec, Canada.
Thus, it should be no surprise that words, acronyms, and abbreviations become rallying cries for political activists of all stripes: PC, January 6, Woke, 1619, BLM, Critical Race Theory, 1776, Remember Pearl Harbor, Remember the Alamo, the Civil War or the War Between the States, the War for Southern Independence, the War of Northern Aggression, the War of the Rebellion, or simply “The Lost Cause.” How about Realpolitik?
Is “medical language” the language of the people or of the profession? Physicians must understand each other, and physicians also must communicate clearly with patients using words that convey neutral meanings and don’t interfere with objective understanding. Medical editors prefer the brevity of one or a few words to clearly convey meaning.
I consider this document from the AMA and AAMC to be both profound and profoundly important for the healing professions. The contributors frequently use words like “humility” as they describe their efforts and products, knowing full well that they (and their organizations) stand to be figuratively torn limb from limb by a host of critics – or worse, ignored and marginalized.
Part 1 of the Health Equity Guide is titled “Language for promoting health equity.”(the reader is referred to the Health Equity Guide for the reasoning and explanations for all).
Part 2 of the Health Equity Guide is called “Why narratives matter.” It includes features of dominant narratives; a substantial section on the narrative of race and the narrative of individualism; the purpose of a health equity–based narrative; how to change the narrative; and how to see and think critically through dialogue.
Part 3 of the Health Equity Guide is a glossary of 138 key terms such as “class,” “discrimination,” “gender dysphoria,” “non-White,” “racial capitalism,” and “structural competency.”
The CDC also has a toolkit for inclusive communication, the “Health Equity Guiding Principles for Inclusive Communication.”
The substantive message of the Health Equity Guide could affect what you say, write, and do (even how you think) every day as well as how those with whom you interact view you. It can affect the entire communication milieu in which you live, whether or not you like it. Read it seriously, as though your professional life depended on it. It may.
Dr. Lundberg is consulting professor of health research policy and pathology at Stanford (Calif.) University. He reported no relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
The United States has never achieved a single high standard of medical care equity for all of its people, and the trend line does not appear favorable. The closest we have reached is basic Medicare (Parts A and B), military medicine, the Veterans Health Administration, and large nonprofit groups like Kaiser Permanente. It seems that the nature of we individualistic Americans is to always try to seek an advantage.
But even achieving equity in medical care would not ensure equity in health. The social determinants of health (income level, education, politics, government, geography, neighborhood, country of origin, language spoken, literacy, gender, and yes – race and ethnicity) have far more influence on health equity than does medical care.
Narratives can both reflect and influence culture. Considering the harmful effects of the current political divisiveness in the United States, the timing is ideal for our three leading medical and health education organizations – the American Medical Association, the Association of American Medical Colleges (AAMC), and the Centers for Disease Control and Prevention – to publish a definitive position paper called “Advancing Health Equity: A Guide to Language, Narrative and Concepts.”
What’s in a word?
According to William Shakespeare, “A rose by any other name would smell as sweet” (Romeo and Juliet). Maybe. But if the word used were “thorn” or “thistle,” it just would not be the same.
Words comprise language and wield enormous power with human beings. Wars are fought over geographic boundaries often defined by the language spoken by the people: think 2022, Russian-speaking Ukrainians. Think Winston Churchill’s massive 1,500-page “A History of the English-Speaking Peoples.” Think about the political power of French in Quebec, Canada.
Thus, it should be no surprise that words, acronyms, and abbreviations become rallying cries for political activists of all stripes: PC, January 6, Woke, 1619, BLM, Critical Race Theory, 1776, Remember Pearl Harbor, Remember the Alamo, the Civil War or the War Between the States, the War for Southern Independence, the War of Northern Aggression, the War of the Rebellion, or simply “The Lost Cause.” How about Realpolitik?
Is “medical language” the language of the people or of the profession? Physicians must understand each other, and physicians also must communicate clearly with patients using words that convey neutral meanings and don’t interfere with objective understanding. Medical editors prefer the brevity of one or a few words to clearly convey meaning.
I consider this document from the AMA and AAMC to be both profound and profoundly important for the healing professions. The contributors frequently use words like “humility” as they describe their efforts and products, knowing full well that they (and their organizations) stand to be figuratively torn limb from limb by a host of critics – or worse, ignored and marginalized.
Part 1 of the Health Equity Guide is titled “Language for promoting health equity.”(the reader is referred to the Health Equity Guide for the reasoning and explanations for all).
Part 2 of the Health Equity Guide is called “Why narratives matter.” It includes features of dominant narratives; a substantial section on the narrative of race and the narrative of individualism; the purpose of a health equity–based narrative; how to change the narrative; and how to see and think critically through dialogue.
Part 3 of the Health Equity Guide is a glossary of 138 key terms such as “class,” “discrimination,” “gender dysphoria,” “non-White,” “racial capitalism,” and “structural competency.”
The CDC also has a toolkit for inclusive communication, the “Health Equity Guiding Principles for Inclusive Communication.”
The substantive message of the Health Equity Guide could affect what you say, write, and do (even how you think) every day as well as how those with whom you interact view you. It can affect the entire communication milieu in which you live, whether or not you like it. Read it seriously, as though your professional life depended on it. It may.
Dr. Lundberg is consulting professor of health research policy and pathology at Stanford (Calif.) University. He reported no relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
The United States has never achieved a single high standard of medical care equity for all of its people, and the trend line does not appear favorable. The closest we have reached is basic Medicare (Parts A and B), military medicine, the Veterans Health Administration, and large nonprofit groups like Kaiser Permanente. It seems that the nature of we individualistic Americans is to always try to seek an advantage.
But even achieving equity in medical care would not ensure equity in health. The social determinants of health (income level, education, politics, government, geography, neighborhood, country of origin, language spoken, literacy, gender, and yes – race and ethnicity) have far more influence on health equity than does medical care.
Narratives can both reflect and influence culture. Considering the harmful effects of the current political divisiveness in the United States, the timing is ideal for our three leading medical and health education organizations – the American Medical Association, the Association of American Medical Colleges (AAMC), and the Centers for Disease Control and Prevention – to publish a definitive position paper called “Advancing Health Equity: A Guide to Language, Narrative and Concepts.”
What’s in a word?
According to William Shakespeare, “A rose by any other name would smell as sweet” (Romeo and Juliet). Maybe. But if the word used were “thorn” or “thistle,” it just would not be the same.
Words comprise language and wield enormous power with human beings. Wars are fought over geographic boundaries often defined by the language spoken by the people: think 2022, Russian-speaking Ukrainians. Think Winston Churchill’s massive 1,500-page “A History of the English-Speaking Peoples.” Think about the political power of French in Quebec, Canada.
Thus, it should be no surprise that words, acronyms, and abbreviations become rallying cries for political activists of all stripes: PC, January 6, Woke, 1619, BLM, Critical Race Theory, 1776, Remember Pearl Harbor, Remember the Alamo, the Civil War or the War Between the States, the War for Southern Independence, the War of Northern Aggression, the War of the Rebellion, or simply “The Lost Cause.” How about Realpolitik?
Is “medical language” the language of the people or of the profession? Physicians must understand each other, and physicians also must communicate clearly with patients using words that convey neutral meanings and don’t interfere with objective understanding. Medical editors prefer the brevity of one or a few words to clearly convey meaning.
I consider this document from the AMA and AAMC to be both profound and profoundly important for the healing professions. The contributors frequently use words like “humility” as they describe their efforts and products, knowing full well that they (and their organizations) stand to be figuratively torn limb from limb by a host of critics – or worse, ignored and marginalized.
Part 1 of the Health Equity Guide is titled “Language for promoting health equity.”(the reader is referred to the Health Equity Guide for the reasoning and explanations for all).
Part 2 of the Health Equity Guide is called “Why narratives matter.” It includes features of dominant narratives; a substantial section on the narrative of race and the narrative of individualism; the purpose of a health equity–based narrative; how to change the narrative; and how to see and think critically through dialogue.
Part 3 of the Health Equity Guide is a glossary of 138 key terms such as “class,” “discrimination,” “gender dysphoria,” “non-White,” “racial capitalism,” and “structural competency.”
The CDC also has a toolkit for inclusive communication, the “Health Equity Guiding Principles for Inclusive Communication.”
The substantive message of the Health Equity Guide could affect what you say, write, and do (even how you think) every day as well as how those with whom you interact view you. It can affect the entire communication milieu in which you live, whether or not you like it. Read it seriously, as though your professional life depended on it. It may.
Dr. Lundberg is consulting professor of health research policy and pathology at Stanford (Calif.) University. He reported no relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
A little-known offshoot of hem/onc opens pathway for professional development
Only a small number of pediatric hematologist oncologists and even fewer of our adult counterparts feel comfortable evaluating and treating vascular anomalies.
While admittedly rare, these conditions are still common enough that clinicians in many disciplines encounter them. Hematologist/oncologists are most likely to see vascular malformations, which often present as mass lesions. Complications of these disorders occur across the hematology-oncology spectrum and include clots, pulmonary emboli, cancer predisposition, and an array of functional and psychosocial disorders.
Vascular anomalies are broadly categorized as vascular tumors or malformations. The tumors include hemangiomas, locally aggressive lesions, and true cancers. Malformations can be isolated disorders of one or more blood vessel types (veins, arteries, capillaries or lymphatics), or they can be one part of syndromic disorders. Lymphedema also falls under the heading of vascular anomalies. To make the terminology less confusing, in 2018 the International Society for the Study of Vascular Anomalies refined its classification scheme.
Vascular malformations are thought to be congenital. Although some are obvious at birth, others aren’t apparent until adulthood. In most cases, they grow with a child and may do so disproportionately at puberty and with pregnancies. The fact that vascular malformations persist into adulthood is one reason why their care should be integral to medical hematology-oncology.
Although the cause of a vascular malformation is not always known, a wide range of genetic mutations thought to be pathogenic have been reported. These mutations are usually somatic (only within the involved tissues, not in the blood or germ cells and therefore, not heritable) and tend to cluster in the VEGF-PIK3CA and RAS-MAP signaling pathways.
These genes and pathways will be familiar to any oncologist who cares for patients with solid tumors, notably breast cancer or melanoma. However, unlike the clonal expansion seen in cancers, most vascular malformations will express pathogenic mutations in less than 20% of vascular endothelium within a malformation.
Since 2008, medical management has been limited to sirolimus (rapamycin), a mammalian target of rapamycin inhibitor, which can be effective even when mTOR mutations aren’t apparent. In a seminal phase 2 trial of 57 patients with complex vascular anomalies who were aged 0-29 years, 47 patients had a partial response, 3 patients had stable disease, and 7 patients had progressive disease. None had complete responses. These data highlight the need for more effective treatments.
Recently, vascular anomalists have begun to repurpose drugs from adult oncology that specifically target pathogenic mutations. Some studies underway include Novartis’ international Alpelisib (Piqray) clinical trial for adults and children with PIK3CA-related overgrowth syndromes (NCT04589650) and Merck’s follow-up study of the AKT inhibitor miransertib for PROS and Proteus syndrome. Doses tend to be lower than those used to treat cancers. To date, these have been generally well-tolerated, with sometimes striking but preliminary evidence of efficacy.
During the past 2 years, symposia on vascular anomalies at the annual meeting of the American Society of Hematology have launched what we are hoping is just the start of a broader discussion. In 2020, Fran Blei, MD, chaired Vascular Anomalies 101: Case-Based Discussion on the Diagnosis, Treatment and Lifelong Care of These Patients, and in 2021, Adrienne Hammill, MD, PhD, and Dr. Raj Kasthuri, MBBS, MD, chaired a more specialized symposium: Hereditary Hemorrhagic Telangiectasia (HHT): A Practical Guide to Management.
Dr. Blatt is in the division of pediatric hematology oncology at the University of North Carolina at Chapel Hill. She disclosed no relevant financial relationships.
Only a small number of pediatric hematologist oncologists and even fewer of our adult counterparts feel comfortable evaluating and treating vascular anomalies.
While admittedly rare, these conditions are still common enough that clinicians in many disciplines encounter them. Hematologist/oncologists are most likely to see vascular malformations, which often present as mass lesions. Complications of these disorders occur across the hematology-oncology spectrum and include clots, pulmonary emboli, cancer predisposition, and an array of functional and psychosocial disorders.
Vascular anomalies are broadly categorized as vascular tumors or malformations. The tumors include hemangiomas, locally aggressive lesions, and true cancers. Malformations can be isolated disorders of one or more blood vessel types (veins, arteries, capillaries or lymphatics), or they can be one part of syndromic disorders. Lymphedema also falls under the heading of vascular anomalies. To make the terminology less confusing, in 2018 the International Society for the Study of Vascular Anomalies refined its classification scheme.
Vascular malformations are thought to be congenital. Although some are obvious at birth, others aren’t apparent until adulthood. In most cases, they grow with a child and may do so disproportionately at puberty and with pregnancies. The fact that vascular malformations persist into adulthood is one reason why their care should be integral to medical hematology-oncology.
Although the cause of a vascular malformation is not always known, a wide range of genetic mutations thought to be pathogenic have been reported. These mutations are usually somatic (only within the involved tissues, not in the blood or germ cells and therefore, not heritable) and tend to cluster in the VEGF-PIK3CA and RAS-MAP signaling pathways.
These genes and pathways will be familiar to any oncologist who cares for patients with solid tumors, notably breast cancer or melanoma. However, unlike the clonal expansion seen in cancers, most vascular malformations will express pathogenic mutations in less than 20% of vascular endothelium within a malformation.
Since 2008, medical management has been limited to sirolimus (rapamycin), a mammalian target of rapamycin inhibitor, which can be effective even when mTOR mutations aren’t apparent. In a seminal phase 2 trial of 57 patients with complex vascular anomalies who were aged 0-29 years, 47 patients had a partial response, 3 patients had stable disease, and 7 patients had progressive disease. None had complete responses. These data highlight the need for more effective treatments.
Recently, vascular anomalists have begun to repurpose drugs from adult oncology that specifically target pathogenic mutations. Some studies underway include Novartis’ international Alpelisib (Piqray) clinical trial for adults and children with PIK3CA-related overgrowth syndromes (NCT04589650) and Merck’s follow-up study of the AKT inhibitor miransertib for PROS and Proteus syndrome. Doses tend to be lower than those used to treat cancers. To date, these have been generally well-tolerated, with sometimes striking but preliminary evidence of efficacy.
During the past 2 years, symposia on vascular anomalies at the annual meeting of the American Society of Hematology have launched what we are hoping is just the start of a broader discussion. In 2020, Fran Blei, MD, chaired Vascular Anomalies 101: Case-Based Discussion on the Diagnosis, Treatment and Lifelong Care of These Patients, and in 2021, Adrienne Hammill, MD, PhD, and Dr. Raj Kasthuri, MBBS, MD, chaired a more specialized symposium: Hereditary Hemorrhagic Telangiectasia (HHT): A Practical Guide to Management.
Dr. Blatt is in the division of pediatric hematology oncology at the University of North Carolina at Chapel Hill. She disclosed no relevant financial relationships.
Only a small number of pediatric hematologist oncologists and even fewer of our adult counterparts feel comfortable evaluating and treating vascular anomalies.
While admittedly rare, these conditions are still common enough that clinicians in many disciplines encounter them. Hematologist/oncologists are most likely to see vascular malformations, which often present as mass lesions. Complications of these disorders occur across the hematology-oncology spectrum and include clots, pulmonary emboli, cancer predisposition, and an array of functional and psychosocial disorders.
Vascular anomalies are broadly categorized as vascular tumors or malformations. The tumors include hemangiomas, locally aggressive lesions, and true cancers. Malformations can be isolated disorders of one or more blood vessel types (veins, arteries, capillaries or lymphatics), or they can be one part of syndromic disorders. Lymphedema also falls under the heading of vascular anomalies. To make the terminology less confusing, in 2018 the International Society for the Study of Vascular Anomalies refined its classification scheme.
Vascular malformations are thought to be congenital. Although some are obvious at birth, others aren’t apparent until adulthood. In most cases, they grow with a child and may do so disproportionately at puberty and with pregnancies. The fact that vascular malformations persist into adulthood is one reason why their care should be integral to medical hematology-oncology.
Although the cause of a vascular malformation is not always known, a wide range of genetic mutations thought to be pathogenic have been reported. These mutations are usually somatic (only within the involved tissues, not in the blood or germ cells and therefore, not heritable) and tend to cluster in the VEGF-PIK3CA and RAS-MAP signaling pathways.
These genes and pathways will be familiar to any oncologist who cares for patients with solid tumors, notably breast cancer or melanoma. However, unlike the clonal expansion seen in cancers, most vascular malformations will express pathogenic mutations in less than 20% of vascular endothelium within a malformation.
Since 2008, medical management has been limited to sirolimus (rapamycin), a mammalian target of rapamycin inhibitor, which can be effective even when mTOR mutations aren’t apparent. In a seminal phase 2 trial of 57 patients with complex vascular anomalies who were aged 0-29 years, 47 patients had a partial response, 3 patients had stable disease, and 7 patients had progressive disease. None had complete responses. These data highlight the need for more effective treatments.
Recently, vascular anomalists have begun to repurpose drugs from adult oncology that specifically target pathogenic mutations. Some studies underway include Novartis’ international Alpelisib (Piqray) clinical trial for adults and children with PIK3CA-related overgrowth syndromes (NCT04589650) and Merck’s follow-up study of the AKT inhibitor miransertib for PROS and Proteus syndrome. Doses tend to be lower than those used to treat cancers. To date, these have been generally well-tolerated, with sometimes striking but preliminary evidence of efficacy.
During the past 2 years, symposia on vascular anomalies at the annual meeting of the American Society of Hematology have launched what we are hoping is just the start of a broader discussion. In 2020, Fran Blei, MD, chaired Vascular Anomalies 101: Case-Based Discussion on the Diagnosis, Treatment and Lifelong Care of These Patients, and in 2021, Adrienne Hammill, MD, PhD, and Dr. Raj Kasthuri, MBBS, MD, chaired a more specialized symposium: Hereditary Hemorrhagic Telangiectasia (HHT): A Practical Guide to Management.
Dr. Blatt is in the division of pediatric hematology oncology at the University of North Carolina at Chapel Hill. She disclosed no relevant financial relationships.
Removing barriers to high-value IBD care: Challenges and opportunities
Over the last several years, payer policies that dictate and restrict treatments for patients with inflammatory bowel diseases (IBD) have proliferated. The implementation of new coverage restrictions, expansion of services and procedures requiring prior authorization (PA), and dosing and access restriction to covered drugs, and the requirement of repeated treatment reviews including nonmedical switching for stable patients are widespread. The AGA administered a member needs assessment survey in December 2021 to determine the extent to which these policies harm patients and overburden gastroenterologists and their staff.
Survey findings
Most of the 100 surveyed members reported facing administrative burdens that prevented timely access to patient care. Utilization management practices such as PA, step therapy, and nonmedical switching and dosing restrictions create critical barriers to high quality GI care for patients with chronic conditions and jeopardize the physician-patient relationship. At a time when physicians have faced unprecedented challenges because of the public health emergency from the COVID-19 pandemic, these burdens also contribute to increasing physician burnout.
Prior authorization: Among AGA members, 96% of members said that PA is burdensome, with 61% indicating that it is significantly burdensome. Almost 99% of members indicated that PA has a negative impact on patients’ access to clinically appropriate treatments; 89% reported that the burden associated with PA has increased over the last 5 years in their practice.
Step therapy: Among members, 87% described the impact step therapy has on their practice as burdensome. Almost 90% of members said step therapy negatively impacted patients’ access to clinically appropriate treatments. Almost 90% of members felt that there was an overall negative impact on patient clinical outcomes for those patients who were required to follow a step therapy protocol.
Nonmedical switching and dosing restrictions: Out of all members, 86% reported an increase in nonmedical switching and dosing restrictions over the last 5 years; 79% of members noted that these restrictions had a negative impact on patient clinical outcomes.
An increasing number of insurance companies are restricting effective biologic therapy to Food and Drug Administration–labeled doses, in direct conflict with current established best practices. It is most concerning that many patients who had been stable on optimized dosing are suddenly notified that they will no longer be able to receive the dose or treatment frequency prescribed by their physician. The concept of optimizing drug therapy based on disease activity and therapeutic drug monitoring is well established, and artificial restrictions to FDA-labeled doses force unnecessary drug deescalation. This transparent effort to reduce costs lacks evidence for safety. Our sickest patients often require higher doses for induction in order to respond, given drug losses, yet some payers refuse to cover the doses these patients require. This new payer-centered effort prioritizes cost containment over the judgment of the treating physician. It causes direct patient harm risking efficacy or loss of response, and subsequent irreversible disease-related complications.
Medicare drug costs
Medicare patients receiving self-injectable or oral medications are not eligible for co-pay assistance programs through pharmaceutical companies because of federal rules. For non-Medicare patients, these programs reduce the co-pay costs to as low as $5 per month. Medicare patients are able to receive infusions like infliximab and vedolizumab at no cost. However, any self-injectable or oral agent can carry a co-pay of over $1,000. Other than for patients meeting income-based eligibility requirements (e.g., below the poverty line), these treatments become prohibitively expensive. Thousands of patients have had to discontinue their self-injectable and/or oral medications because of this cost or have been denied access to the therapy altogether because of cost.
Need for change
These recent changes in insurance policies have resulted in increased harm to our patients with IBD rather than improving the safety or quality of their care. These changes create barriers to disease treatment and have not improved quality of care, patient outcomes, or quality of life. The AGA and other societies have published multiple guidelines and literature on the management of patients with IBD that should serve as the foundation for insurers’ medication coverage policies. Additionally, insurance companies should seek input from panels of IBD experts when developing their medication coverage policies to ensure they are patient oriented and facilitate high-quality IBD care.
The following are opportunities for insurers to improve the IBD drug approval process:
- Simplify the appeal process.
- Guarantee rapid response/turnaround to appeal processes to avoid additional delays in care.
- Incorporate experienced expert review by a gastroenterologist.
- Ensure coverage of drug and disease monitoring.
- Integrate expert input in policy development.
Conclusion
Effective patient care in IBD, as well as in other chronic gastrointestinal diseases, requires a collaborative approach to maximize clinical outcomes. It is an exciting time in our field, with rapidly expanding therapeutic options to treat IBD that have the potential to modify the disease course and prevent long-term complications for patients. However, optimizing the use of these treatments to achieve disease remission is challenging and requires the ability to individualize the timely choice of medications at the right dose for each patient to capture and monitor response. The ability to provide individualized, data driven care is essential to improving the quality of life of our patients, as well as to reducing health care spending over time.
Achieving high-value care is a goal that benefits everyone involved in the health care system. Policies that interfere with the timely treatment of sick patients with the right therapies, optimized to achieve disease remission, hurt the very patients that our health care system exists to serve. We cannot stand by while impediments to treatment result in harm to our patients and worsen clinical outcomes. Collaboratively developing aligned incentives can lead us to patient-centered policies that fulfill a shared purpose to optimize the health of people with chronic digestive diseases.
The authors reported having no relevant conflicts of interest.
Dr. Feuerstein is with the Center for Inflammatory Bowel Disease at Beth Israel Deaconess Medical Center and is an associate professor of medicine Harvard Medical School, both in Boston. Dr. Sofia is an assistant professor of medicine with the division of gastroenterology and hepatology at Oregon Health and Science University, Portland. Dr. Guha is a professor of medicine at the division of gastroenterology, hepatology and nutrition and is codirector of the Center for Interventional Gastroenterology at UTHealth (iGUT) at UT Health Science Center, Houston. Dr. Streett is a clinical professor of medicine, gastroenterology, and hepatology and director of the IBD Education and Advanced IBD Fellowship at Stanford (Calif.) Medicine.
Over the last several years, payer policies that dictate and restrict treatments for patients with inflammatory bowel diseases (IBD) have proliferated. The implementation of new coverage restrictions, expansion of services and procedures requiring prior authorization (PA), and dosing and access restriction to covered drugs, and the requirement of repeated treatment reviews including nonmedical switching for stable patients are widespread. The AGA administered a member needs assessment survey in December 2021 to determine the extent to which these policies harm patients and overburden gastroenterologists and their staff.
Survey findings
Most of the 100 surveyed members reported facing administrative burdens that prevented timely access to patient care. Utilization management practices such as PA, step therapy, and nonmedical switching and dosing restrictions create critical barriers to high quality GI care for patients with chronic conditions and jeopardize the physician-patient relationship. At a time when physicians have faced unprecedented challenges because of the public health emergency from the COVID-19 pandemic, these burdens also contribute to increasing physician burnout.
Prior authorization: Among AGA members, 96% of members said that PA is burdensome, with 61% indicating that it is significantly burdensome. Almost 99% of members indicated that PA has a negative impact on patients’ access to clinically appropriate treatments; 89% reported that the burden associated with PA has increased over the last 5 years in their practice.
Step therapy: Among members, 87% described the impact step therapy has on their practice as burdensome. Almost 90% of members said step therapy negatively impacted patients’ access to clinically appropriate treatments. Almost 90% of members felt that there was an overall negative impact on patient clinical outcomes for those patients who were required to follow a step therapy protocol.
Nonmedical switching and dosing restrictions: Out of all members, 86% reported an increase in nonmedical switching and dosing restrictions over the last 5 years; 79% of members noted that these restrictions had a negative impact on patient clinical outcomes.
An increasing number of insurance companies are restricting effective biologic therapy to Food and Drug Administration–labeled doses, in direct conflict with current established best practices. It is most concerning that many patients who had been stable on optimized dosing are suddenly notified that they will no longer be able to receive the dose or treatment frequency prescribed by their physician. The concept of optimizing drug therapy based on disease activity and therapeutic drug monitoring is well established, and artificial restrictions to FDA-labeled doses force unnecessary drug deescalation. This transparent effort to reduce costs lacks evidence for safety. Our sickest patients often require higher doses for induction in order to respond, given drug losses, yet some payers refuse to cover the doses these patients require. This new payer-centered effort prioritizes cost containment over the judgment of the treating physician. It causes direct patient harm risking efficacy or loss of response, and subsequent irreversible disease-related complications.
Medicare drug costs
Medicare patients receiving self-injectable or oral medications are not eligible for co-pay assistance programs through pharmaceutical companies because of federal rules. For non-Medicare patients, these programs reduce the co-pay costs to as low as $5 per month. Medicare patients are able to receive infusions like infliximab and vedolizumab at no cost. However, any self-injectable or oral agent can carry a co-pay of over $1,000. Other than for patients meeting income-based eligibility requirements (e.g., below the poverty line), these treatments become prohibitively expensive. Thousands of patients have had to discontinue their self-injectable and/or oral medications because of this cost or have been denied access to the therapy altogether because of cost.
Need for change
These recent changes in insurance policies have resulted in increased harm to our patients with IBD rather than improving the safety or quality of their care. These changes create barriers to disease treatment and have not improved quality of care, patient outcomes, or quality of life. The AGA and other societies have published multiple guidelines and literature on the management of patients with IBD that should serve as the foundation for insurers’ medication coverage policies. Additionally, insurance companies should seek input from panels of IBD experts when developing their medication coverage policies to ensure they are patient oriented and facilitate high-quality IBD care.
The following are opportunities for insurers to improve the IBD drug approval process:
- Simplify the appeal process.
- Guarantee rapid response/turnaround to appeal processes to avoid additional delays in care.
- Incorporate experienced expert review by a gastroenterologist.
- Ensure coverage of drug and disease monitoring.
- Integrate expert input in policy development.
Conclusion
Effective patient care in IBD, as well as in other chronic gastrointestinal diseases, requires a collaborative approach to maximize clinical outcomes. It is an exciting time in our field, with rapidly expanding therapeutic options to treat IBD that have the potential to modify the disease course and prevent long-term complications for patients. However, optimizing the use of these treatments to achieve disease remission is challenging and requires the ability to individualize the timely choice of medications at the right dose for each patient to capture and monitor response. The ability to provide individualized, data driven care is essential to improving the quality of life of our patients, as well as to reducing health care spending over time.
Achieving high-value care is a goal that benefits everyone involved in the health care system. Policies that interfere with the timely treatment of sick patients with the right therapies, optimized to achieve disease remission, hurt the very patients that our health care system exists to serve. We cannot stand by while impediments to treatment result in harm to our patients and worsen clinical outcomes. Collaboratively developing aligned incentives can lead us to patient-centered policies that fulfill a shared purpose to optimize the health of people with chronic digestive diseases.
The authors reported having no relevant conflicts of interest.
Dr. Feuerstein is with the Center for Inflammatory Bowel Disease at Beth Israel Deaconess Medical Center and is an associate professor of medicine Harvard Medical School, both in Boston. Dr. Sofia is an assistant professor of medicine with the division of gastroenterology and hepatology at Oregon Health and Science University, Portland. Dr. Guha is a professor of medicine at the division of gastroenterology, hepatology and nutrition and is codirector of the Center for Interventional Gastroenterology at UTHealth (iGUT) at UT Health Science Center, Houston. Dr. Streett is a clinical professor of medicine, gastroenterology, and hepatology and director of the IBD Education and Advanced IBD Fellowship at Stanford (Calif.) Medicine.
Over the last several years, payer policies that dictate and restrict treatments for patients with inflammatory bowel diseases (IBD) have proliferated. The implementation of new coverage restrictions, expansion of services and procedures requiring prior authorization (PA), and dosing and access restriction to covered drugs, and the requirement of repeated treatment reviews including nonmedical switching for stable patients are widespread. The AGA administered a member needs assessment survey in December 2021 to determine the extent to which these policies harm patients and overburden gastroenterologists and their staff.
Survey findings
Most of the 100 surveyed members reported facing administrative burdens that prevented timely access to patient care. Utilization management practices such as PA, step therapy, and nonmedical switching and dosing restrictions create critical barriers to high quality GI care for patients with chronic conditions and jeopardize the physician-patient relationship. At a time when physicians have faced unprecedented challenges because of the public health emergency from the COVID-19 pandemic, these burdens also contribute to increasing physician burnout.
Prior authorization: Among AGA members, 96% of members said that PA is burdensome, with 61% indicating that it is significantly burdensome. Almost 99% of members indicated that PA has a negative impact on patients’ access to clinically appropriate treatments; 89% reported that the burden associated with PA has increased over the last 5 years in their practice.
Step therapy: Among members, 87% described the impact step therapy has on their practice as burdensome. Almost 90% of members said step therapy negatively impacted patients’ access to clinically appropriate treatments. Almost 90% of members felt that there was an overall negative impact on patient clinical outcomes for those patients who were required to follow a step therapy protocol.
Nonmedical switching and dosing restrictions: Out of all members, 86% reported an increase in nonmedical switching and dosing restrictions over the last 5 years; 79% of members noted that these restrictions had a negative impact on patient clinical outcomes.
An increasing number of insurance companies are restricting effective biologic therapy to Food and Drug Administration–labeled doses, in direct conflict with current established best practices. It is most concerning that many patients who had been stable on optimized dosing are suddenly notified that they will no longer be able to receive the dose or treatment frequency prescribed by their physician. The concept of optimizing drug therapy based on disease activity and therapeutic drug monitoring is well established, and artificial restrictions to FDA-labeled doses force unnecessary drug deescalation. This transparent effort to reduce costs lacks evidence for safety. Our sickest patients often require higher doses for induction in order to respond, given drug losses, yet some payers refuse to cover the doses these patients require. This new payer-centered effort prioritizes cost containment over the judgment of the treating physician. It causes direct patient harm risking efficacy or loss of response, and subsequent irreversible disease-related complications.
Medicare drug costs
Medicare patients receiving self-injectable or oral medications are not eligible for co-pay assistance programs through pharmaceutical companies because of federal rules. For non-Medicare patients, these programs reduce the co-pay costs to as low as $5 per month. Medicare patients are able to receive infusions like infliximab and vedolizumab at no cost. However, any self-injectable or oral agent can carry a co-pay of over $1,000. Other than for patients meeting income-based eligibility requirements (e.g., below the poverty line), these treatments become prohibitively expensive. Thousands of patients have had to discontinue their self-injectable and/or oral medications because of this cost or have been denied access to the therapy altogether because of cost.
Need for change
These recent changes in insurance policies have resulted in increased harm to our patients with IBD rather than improving the safety or quality of their care. These changes create barriers to disease treatment and have not improved quality of care, patient outcomes, or quality of life. The AGA and other societies have published multiple guidelines and literature on the management of patients with IBD that should serve as the foundation for insurers’ medication coverage policies. Additionally, insurance companies should seek input from panels of IBD experts when developing their medication coverage policies to ensure they are patient oriented and facilitate high-quality IBD care.
The following are opportunities for insurers to improve the IBD drug approval process:
- Simplify the appeal process.
- Guarantee rapid response/turnaround to appeal processes to avoid additional delays in care.
- Incorporate experienced expert review by a gastroenterologist.
- Ensure coverage of drug and disease monitoring.
- Integrate expert input in policy development.
Conclusion
Effective patient care in IBD, as well as in other chronic gastrointestinal diseases, requires a collaborative approach to maximize clinical outcomes. It is an exciting time in our field, with rapidly expanding therapeutic options to treat IBD that have the potential to modify the disease course and prevent long-term complications for patients. However, optimizing the use of these treatments to achieve disease remission is challenging and requires the ability to individualize the timely choice of medications at the right dose for each patient to capture and monitor response. The ability to provide individualized, data driven care is essential to improving the quality of life of our patients, as well as to reducing health care spending over time.
Achieving high-value care is a goal that benefits everyone involved in the health care system. Policies that interfere with the timely treatment of sick patients with the right therapies, optimized to achieve disease remission, hurt the very patients that our health care system exists to serve. We cannot stand by while impediments to treatment result in harm to our patients and worsen clinical outcomes. Collaboratively developing aligned incentives can lead us to patient-centered policies that fulfill a shared purpose to optimize the health of people with chronic digestive diseases.
The authors reported having no relevant conflicts of interest.
Dr. Feuerstein is with the Center for Inflammatory Bowel Disease at Beth Israel Deaconess Medical Center and is an associate professor of medicine Harvard Medical School, both in Boston. Dr. Sofia is an assistant professor of medicine with the division of gastroenterology and hepatology at Oregon Health and Science University, Portland. Dr. Guha is a professor of medicine at the division of gastroenterology, hepatology and nutrition and is codirector of the Center for Interventional Gastroenterology at UTHealth (iGUT) at UT Health Science Center, Houston. Dr. Streett is a clinical professor of medicine, gastroenterology, and hepatology and director of the IBD Education and Advanced IBD Fellowship at Stanford (Calif.) Medicine.