Federal Practitioner

Aurora, Colo. – The access to and quality of multiple sclerosis (MS) care varies substantially depending on a patient’s race, ethnicity, gender, and geography, according to research on patient-reported health inequities presented at the annual meeting of the Consortium of Multiple Sclerosis Centers.

”Equal access to and quality of care are critical for managing a progressive disease such as multiple sclerosis,” said Chris Hardy, of Publicis Health Media, and her associates. “Despite increased awareness of health outcome disparities in the U.S., certain patients still experience inequities in care.”

The researchers sent emails to members of MyMSTeam, an online support network of more than 197,000 members, to request completion of a 34-question online survey. Questions addressed respondents’ ability to access care, resources in their neighborhood, and their interactions with their health care providers. Questions also addressed the burden of MS on individuals’ quality of life, which was considerable across all demographics. The 1,935 patients with MS who responded were overwhelmingly White, though the demographics varied by question.
 

A ‘widespread and significant problem’

“This study is important in pointing out the unfortunate, obvious [fact] that lack of access and lack of availability to treatment is still a widespread and significant problem in this country,” commented Mark Gudesblatt, MD, a neurologist at South Shore Neurologic Associates who was not involved in the study. “Improving effective treatment of disease requires a more granular understanding of disease impact on a quantitative, multidimensional, objective patient-centric approach,” he added. “Racial and ethnic barriers to effective treatment cannot be allowed nor tolerated. We need to be more acutely aware that outreach, digital health, and remote assessments are tools that we need to incorporate to improve access and do better.”

The pervasive impact of MS

Overall, 85% of respondents reported that MS made it harder to do everyday chores, and 84% said their MS made it harder to exercise and interfered with their everyday life. Similarly high proportions of respondents reported that their MS causes them a lot of stress (80%), makes them feel anxious or depressed (77%), disrupts their work/employment (75%), and interferes with their social life (75%). In addition, more than half said their diagnosis negatively affects their family (59%) and makes them feel judged (53%).

Deanne Power, RN, MSCN, the lead nurse care partner at Octave Bioscience, who spoke as a representative of the study authors, said it’s critical that clinicians be aware of the health inequities that exist among their patient population.

“Some patients have lower income or language issues where English is not their primary language, and they don’t have access and are even afraid to call doctor or reach out [for help],” Ms. Power said. “If providers aren’t actively aware of these situations and talk to their patients, they can’t just say, ‘Oh, well, I just want you to go fill this prescription,’ when they don’t have money to put food on their table. Providers have got to know their patients as [more than] just an MS patient. This is a human being in front of you, and you better know what their life is like, because it’s impacting their MS.”
 

Access to care varied by race

Among the 1,906 respondents who answered questions about access to care, 9% were Black, 5% were Hispanic, and the rest were White. In these questions, differences between demographics arose when it came to individuals’ ability to conveniently see an MS specialist and their subsequent use of emergency services. For example, only 64% of Hispanic respondents reported convenient access to a health care provider specializing in MS, compared with 76% of White and 78% of Black respondents.

A significantly higher proportion of Hispanics also reported that they could not take time off from work when they were sick (25%) or to attend a doctor appointment (20%), compared with White (15% and 9%, respectively) and Black (18% and 12%) respondents. Meanwhile, a significantly higher proportion of Hispanics (35%) reported visiting the emergency department in the past year for MS-related issues, compared with White (19%) or Black (25%) respondents.

White respondents consistently had greater convenient access to dental offices, healthy foods, outpatient care, gyms, and parks and trails, compared with Black and Hispanic patients’ access. For example, 85% of White patients had convenient access to dental offices and 72% had access to outpatient care, compared with Black (74% and 65%) and Hispanic (78% and 52%) patients. Two-thirds of Hispanic respondents (67%) reported access to healthy foods and to gyms, parks, or trails, compared with more than three-quarters of both White and Black patients.
 

Other barriers to MS care

Both racial/ethnic and gender disparities emerged in how patients felt treated by their health care providers. Men were significantly more likely (70%) than women (65%) to say their health care provider listens to and understands them. A statistically significant higher proportion of men (71%) also said their clinician explained their MS test results to them, compared with women (62%), and only 28% of women, versus 37% of men, said their provider developed a long-term plan for them.

Anne Foelsch, the vice president of strategic partnerships at MyHealthTeam, who works with the authors, noted the large discrepancy that was seen particularly for Hispanic patients in terms of how they felt treated by their health care provider.

“Doctors might perceive that the relationship is the same with all of their patients when their patients have a very different perception of what that relationship is and whether they’re not being heard,” Ms. Foelsch said. “It’s important that clinicians take a little bit of time and learn a little bit more about a patient’s perspective and what it’s like when they have a chronic condition like MS and how it impacts their life, looking for those nuances that are different based on your ethnicity.”

Just over half of Hispanic patients (54%) said their provider explained their MS test results, compared with nearly two-thirds of White patients (65%) and 61% of Black patients. Hispanic patients were also less likely (55%) to say they felt their provider listens to and understands them than White (67%) or Black (65%) patients. Two-thirds of White respondents (67%) said their doctor recommended regular check-ups, compared with just over half of Black and Hispanic respondents (55%).

Other statistically significant disparities by race/ethnicity, where a higher proportion of White patients responded affirmatively than Black or Hispanic patients, included feeling treated with respect by their health care provider, feeling their provider is nonjudgmental, and saying their provider spends enough time with them, addresses their MS symptoms, and encourages shared decision-making.

“This study nicely documents and points out that despite our best intentions, we need to do much better as a community to help those with chronic and potentially disabling diseases like MS,” Dr. Gudesblatt said. “The racial, ethnic, and gender disparities only result in greater disability and societal costs by those who can least afford it. All therapies fail due to nonadherence, limited access, lack of insurance coverage, limited insurance coverage, high copays, long waits, cultural biases, and more.”

The researchers acknowledged that their survey respondents may not be representative of all patients with MS because the survey relied on those who chose to respond to the online survey.

The study authors were all employees of Publicis Health Media or MyHealthTeam. Dr. Gudesblatt reported no disclosures.
 

Aurora, Colo. – The access to and quality of multiple sclerosis (MS) care varies substantially depending on a patient’s race, ethnicity, gender, and geography, according to research on patient-reported health inequities presented at the annual meeting of the Consortium of Multiple Sclerosis Centers.

”Equal access to and quality of care are critical for managing a progressive disease such as multiple sclerosis,” said Chris Hardy, of Publicis Health Media, and her associates. “Despite increased awareness of health outcome disparities in the U.S., certain patients still experience inequities in care.”

The researchers sent emails to members of MyMSTeam, an online support network of more than 197,000 members, to request completion of a 34-question online survey. Questions addressed respondents’ ability to access care, resources in their neighborhood, and their interactions with their health care providers. Questions also addressed the burden of MS on individuals’ quality of life, which was considerable across all demographics. The 1,935 patients with MS who responded were overwhelmingly White, though the demographics varied by question.
 

A ‘widespread and significant problem’

“This study is important in pointing out the unfortunate, obvious [fact] that lack of access and lack of availability to treatment is still a widespread and significant problem in this country,” commented Mark Gudesblatt, MD, a neurologist at South Shore Neurologic Associates who was not involved in the study. “Improving effective treatment of disease requires a more granular understanding of disease impact on a quantitative, multidimensional, objective patient-centric approach,” he added. “Racial and ethnic barriers to effective treatment cannot be allowed nor tolerated. We need to be more acutely aware that outreach, digital health, and remote assessments are tools that we need to incorporate to improve access and do better.”

The pervasive impact of MS

Overall, 85% of respondents reported that MS made it harder to do everyday chores, and 84% said their MS made it harder to exercise and interfered with their everyday life. Similarly high proportions of respondents reported that their MS causes them a lot of stress (80%), makes them feel anxious or depressed (77%), disrupts their work/employment (75%), and interferes with their social life (75%). In addition, more than half said their diagnosis negatively affects their family (59%) and makes them feel judged (53%).

Deanne Power, RN, MSCN, the lead nurse care partner at Octave Bioscience, who spoke as a representative of the study authors, said it’s critical that clinicians be aware of the health inequities that exist among their patient population.

“Some patients have lower income or language issues where English is not their primary language, and they don’t have access and are even afraid to call doctor or reach out [for help],” Ms. Power said. “If providers aren’t actively aware of these situations and talk to their patients, they can’t just say, ‘Oh, well, I just want you to go fill this prescription,’ when they don’t have money to put food on their table. Providers have got to know their patients as [more than] just an MS patient. This is a human being in front of you, and you better know what their life is like, because it’s impacting their MS.”
 

Access to care varied by race

Among the 1,906 respondents who answered questions about access to care, 9% were Black, 5% were Hispanic, and the rest were White. In these questions, differences between demographics arose when it came to individuals’ ability to conveniently see an MS specialist and their subsequent use of emergency services. For example, only 64% of Hispanic respondents reported convenient access to a health care provider specializing in MS, compared with 76% of White and 78% of Black respondents.

A significantly higher proportion of Hispanics also reported that they could not take time off from work when they were sick (25%) or to attend a doctor appointment (20%), compared with White (15% and 9%, respectively) and Black (18% and 12%) respondents. Meanwhile, a significantly higher proportion of Hispanics (35%) reported visiting the emergency department in the past year for MS-related issues, compared with White (19%) or Black (25%) respondents.

White respondents consistently had greater convenient access to dental offices, healthy foods, outpatient care, gyms, and parks and trails, compared with Black and Hispanic patients’ access. For example, 85% of White patients had convenient access to dental offices and 72% had access to outpatient care, compared with Black (74% and 65%) and Hispanic (78% and 52%) patients. Two-thirds of Hispanic respondents (67%) reported access to healthy foods and to gyms, parks, or trails, compared with more than three-quarters of both White and Black patients.
 

Other barriers to MS care

Both racial/ethnic and gender disparities emerged in how patients felt treated by their health care providers. Men were significantly more likely (70%) than women (65%) to say their health care provider listens to and understands them. A statistically significant higher proportion of men (71%) also said their clinician explained their MS test results to them, compared with women (62%), and only 28% of women, versus 37% of men, said their provider developed a long-term plan for them.

Anne Foelsch, the vice president of strategic partnerships at MyHealthTeam, who works with the authors, noted the large discrepancy that was seen particularly for Hispanic patients in terms of how they felt treated by their health care provider.

“Doctors might perceive that the relationship is the same with all of their patients when their patients have a very different perception of what that relationship is and whether they’re not being heard,” Ms. Foelsch said. “It’s important that clinicians take a little bit of time and learn a little bit more about a patient’s perspective and what it’s like when they have a chronic condition like MS and how it impacts their life, looking for those nuances that are different based on your ethnicity.”

Just over half of Hispanic patients (54%) said their provider explained their MS test results, compared with nearly two-thirds of White patients (65%) and 61% of Black patients. Hispanic patients were also less likely (55%) to say they felt their provider listens to and understands them than White (67%) or Black (65%) patients. Two-thirds of White respondents (67%) said their doctor recommended regular check-ups, compared with just over half of Black and Hispanic respondents (55%).

Other statistically significant disparities by race/ethnicity, where a higher proportion of White patients responded affirmatively than Black or Hispanic patients, included feeling treated with respect by their health care provider, feeling their provider is nonjudgmental, and saying their provider spends enough time with them, addresses their MS symptoms, and encourages shared decision-making.

“This study nicely documents and points out that despite our best intentions, we need to do much better as a community to help those with chronic and potentially disabling diseases like MS,” Dr. Gudesblatt said. “The racial, ethnic, and gender disparities only result in greater disability and societal costs by those who can least afford it. All therapies fail due to nonadherence, limited access, lack of insurance coverage, limited insurance coverage, high copays, long waits, cultural biases, and more.”

The researchers acknowledged that their survey respondents may not be representative of all patients with MS because the survey relied on those who chose to respond to the online survey.

The study authors were all employees of Publicis Health Media or MyHealthTeam. Dr. Gudesblatt reported no disclosures.
 

Aurora, Colo. – The access to and quality of multiple sclerosis (MS) care varies substantially depending on a patient’s race, ethnicity, gender, and geography, according to research on patient-reported health inequities presented at the annual meeting of the Consortium of Multiple Sclerosis Centers.

”Equal access to and quality of care are critical for managing a progressive disease such as multiple sclerosis,” said Chris Hardy, of Publicis Health Media, and her associates. “Despite increased awareness of health outcome disparities in the U.S., certain patients still experience inequities in care.”

The researchers sent emails to members of MyMSTeam, an online support network of more than 197,000 members, to request completion of a 34-question online survey. Questions addressed respondents’ ability to access care, resources in their neighborhood, and their interactions with their health care providers. Questions also addressed the burden of MS on individuals’ quality of life, which was considerable across all demographics. The 1,935 patients with MS who responded were overwhelmingly White, though the demographics varied by question.
 

A ‘widespread and significant problem’

“This study is important in pointing out the unfortunate, obvious [fact] that lack of access and lack of availability to treatment is still a widespread and significant problem in this country,” commented Mark Gudesblatt, MD, a neurologist at South Shore Neurologic Associates who was not involved in the study. “Improving effective treatment of disease requires a more granular understanding of disease impact on a quantitative, multidimensional, objective patient-centric approach,” he added. “Racial and ethnic barriers to effective treatment cannot be allowed nor tolerated. We need to be more acutely aware that outreach, digital health, and remote assessments are tools that we need to incorporate to improve access and do better.”

The pervasive impact of MS

Overall, 85% of respondents reported that MS made it harder to do everyday chores, and 84% said their MS made it harder to exercise and interfered with their everyday life. Similarly high proportions of respondents reported that their MS causes them a lot of stress (80%), makes them feel anxious or depressed (77%), disrupts their work/employment (75%), and interferes with their social life (75%). In addition, more than half said their diagnosis negatively affects their family (59%) and makes them feel judged (53%).

Deanne Power, RN, MSCN, the lead nurse care partner at Octave Bioscience, who spoke as a representative of the study authors, said it’s critical that clinicians be aware of the health inequities that exist among their patient population.

“Some patients have lower income or language issues where English is not their primary language, and they don’t have access and are even afraid to call doctor or reach out [for help],” Ms. Power said. “If providers aren’t actively aware of these situations and talk to their patients, they can’t just say, ‘Oh, well, I just want you to go fill this prescription,’ when they don’t have money to put food on their table. Providers have got to know their patients as [more than] just an MS patient. This is a human being in front of you, and you better know what their life is like, because it’s impacting their MS.”
 

Access to care varied by race

Among the 1,906 respondents who answered questions about access to care, 9% were Black, 5% were Hispanic, and the rest were White. In these questions, differences between demographics arose when it came to individuals’ ability to conveniently see an MS specialist and their subsequent use of emergency services. For example, only 64% of Hispanic respondents reported convenient access to a health care provider specializing in MS, compared with 76% of White and 78% of Black respondents.

A significantly higher proportion of Hispanics also reported that they could not take time off from work when they were sick (25%) or to attend a doctor appointment (20%), compared with White (15% and 9%, respectively) and Black (18% and 12%) respondents. Meanwhile, a significantly higher proportion of Hispanics (35%) reported visiting the emergency department in the past year for MS-related issues, compared with White (19%) or Black (25%) respondents.

White respondents consistently had greater convenient access to dental offices, healthy foods, outpatient care, gyms, and parks and trails, compared with Black and Hispanic patients’ access. For example, 85% of White patients had convenient access to dental offices and 72% had access to outpatient care, compared with Black (74% and 65%) and Hispanic (78% and 52%) patients. Two-thirds of Hispanic respondents (67%) reported access to healthy foods and to gyms, parks, or trails, compared with more than three-quarters of both White and Black patients.
 

Other barriers to MS care

Both racial/ethnic and gender disparities emerged in how patients felt treated by their health care providers. Men were significantly more likely (70%) than women (65%) to say their health care provider listens to and understands them. A statistically significant higher proportion of men (71%) also said their clinician explained their MS test results to them, compared with women (62%), and only 28% of women, versus 37% of men, said their provider developed a long-term plan for them.

Anne Foelsch, the vice president of strategic partnerships at MyHealthTeam, who works with the authors, noted the large discrepancy that was seen particularly for Hispanic patients in terms of how they felt treated by their health care provider.

“Doctors might perceive that the relationship is the same with all of their patients when their patients have a very different perception of what that relationship is and whether they’re not being heard,” Ms. Foelsch said. “It’s important that clinicians take a little bit of time and learn a little bit more about a patient’s perspective and what it’s like when they have a chronic condition like MS and how it impacts their life, looking for those nuances that are different based on your ethnicity.”

Just over half of Hispanic patients (54%) said their provider explained their MS test results, compared with nearly two-thirds of White patients (65%) and 61% of Black patients. Hispanic patients were also less likely (55%) to say they felt their provider listens to and understands them than White (67%) or Black (65%) patients. Two-thirds of White respondents (67%) said their doctor recommended regular check-ups, compared with just over half of Black and Hispanic respondents (55%).

Other statistically significant disparities by race/ethnicity, where a higher proportion of White patients responded affirmatively than Black or Hispanic patients, included feeling treated with respect by their health care provider, feeling their provider is nonjudgmental, and saying their provider spends enough time with them, addresses their MS symptoms, and encourages shared decision-making.

“This study nicely documents and points out that despite our best intentions, we need to do much better as a community to help those with chronic and potentially disabling diseases like MS,” Dr. Gudesblatt said. “The racial, ethnic, and gender disparities only result in greater disability and societal costs by those who can least afford it. All therapies fail due to nonadherence, limited access, lack of insurance coverage, limited insurance coverage, high copays, long waits, cultural biases, and more.”

The researchers acknowledged that their survey respondents may not be representative of all patients with MS because the survey relied on those who chose to respond to the online survey.

The study authors were all employees of Publicis Health Media or MyHealthTeam. Dr. Gudesblatt reported no disclosures.
 

SAN FRANCISCO – Music therapy improves negative symptoms of schizophrenia, such as lack of motivation, reclusiveness, and isolation, a new review of the literature suggests.

Although the study had conflicting results regarding the effects of music therapy on positive symptoms of schizophrenia, such as hallucinations, delusions, and disordered thoughts, it consistently shows that music therapy improves negative symptoms, poster presenter Amy Agrawal, MD, VA Boston Healthcare System and instructor of psychiatry at Harvard Medical School, Boston, said in an interview.

Pauline Anderson

Current antipsychotic drugs aren’t very effective in addressing negative symptoms of schizophrenia, and many patients are noncompliant with these drug regimens because of side effects.

“We need to target the negative symptoms of schizophrenia better,” said Dr. Agrawal. “The antipsychotic medications we have are not enough, so why don’t we start incorporating music therapy groups into the inpatient psychiatry setting as a standard of care?”

The findings were presented at the annual meeting of the American Psychiatric Association.

Dr. Agrawal has long been interested in music. As a child, she was a member of a state choir, but she hadn’t sung for years. After receiving several medals for her clarinet playing during her youth, she stopped playing while in medical school.
 

Instant boost

During the pandemic, though, she turned back to music and started singing regularly. “I noticed an instant boost in my mood and wondered why I stopped making music for so long, as it made me feel so much happier and calmer.”

She also noticed how music affected her sister, who has paranoid schizophrenia. She described an incident in which her sibling became so loud and paranoid at a restaurant that Dr. Agrawal thought they would be asked to leave.

Then her sister started singing a song she’d sung during a beauty contest years before. “With the music, she calmed right down; she was smiling; she was happy,” said Dr. Agrawal.

That incident made Dr. Agrawal feel, “I had my sister back.” She decided to bring music therapy to her inpatient psychiatry unit and soon noted the benefits for individual patients.

For this new study, Dr. Agrawal and her mentor carried out a literature search. “I was surprised at how many articles popped up, because the field of psychiatry can be very heavily medication based, but people are now getting very interested in this topic,” said Dr. Agrawal.

The review included seven articles, most of which were published within the past 3 years. Some articles specified that the therapy was conducted on an inpatient psychiatric unit, but others didn’t indicate the setting. Studies also didn’t specify whether the therapy was delivered by a trained music therapist.

There was an overall lack of clear measures, graphs, or statistics quantifying the benefits of music therapy on schizophrenia, noted Dr. Agrawal. “But from general statements in the articles, music therapy helped treat sleep disturbances and improved negative symptoms.”
 

Gets patients socializing

The music, she said, led patients to start socializing, talking about their emotions, and opening up to their clinicians about their mental health symptoms. “Some patients just did not engage at all, and then when the music came on, they would actively participate with the clinician.”

Dancing to music also tended to motivate patients to participate in their treatment, she added. Different forms of movement, such as rhythmic movements and creative exercises, can be added during music therapy.

In addition to improving negative schizophrenia symptoms, music therapy helps with sleep disturbances, depression, and regulating emotional behavior, the research shows. “When patients were agitated or upset, certain music would help them regulate their own affect,” said Dr. Agrawal.

However, it’s not clear from these studies what type of music – classical, rock, country, etc. – was most effective for people.

One article discussed the positive impact of music on patients with schizophrenia while at work. “They seem to have improved work performance,” Dr. Agrawal said.

The length of exposure to music therapy did not seem to make a difference in terms of whether the therapy had a positive effect, she added.
 

Key research wave

A “key next wave” of research should be to determine whether music therapy decreases the hospital readmission rate, said Dr. Agrawal.

There are several barriers to implementing music therapy programs in hospitals, including cost, the availability of trained therapists, and time constraints, she said.

“Regardless of the barriers, hospital administrators and psychiatrists need to know about this research so they will invest more efforts in recruiting music therapists and incorporating music group therapy into standard clinical practice for psychiatric patients so there are better clinical outcomes.”

Commenting on the research, Michelle B. Riba, MD, professor, department of psychiatry, University of Michigan, Ann Arbor, said the study adds to the literature “and helps us think about adjunctive treatments in a very difficult population.”

University of Michigan

Difficult topic to study

Although she found the review “very limited,” she recognizes the difficulty of studying music therapy on in-patient psychiatry units.

“Patients are there for short stays, most are getting other treatments, and it’s hard to segment people into negative vs. positive. Also, the ages and genders are different, and their previous treatments are different.”

While it’s sometimes difficult to conduct major research on a topic, “that doesn’t mean we can’t help people,” said Dr. Riba.

She noted that music therapy is beneficial not only for patients with schizophrenia but also is “soothing and relaxing” for those with other conditions. She runs a psychiatric oncology program at her institution’s cancer center, which offers music therapy along with art therapy.

Kevin M. Malone, MD, of University College Dublin, also has firsthand experience with music therapy. “We had a terrific music therapist as part of our clinical psychosis team,” he said in an interview.

University College Dublin

A version of this article was first published on Medscape.com.

SAN FRANCISCO – Music therapy improves negative symptoms of schizophrenia, such as lack of motivation, reclusiveness, and isolation, a new review of the literature suggests.

Although the study had conflicting results regarding the effects of music therapy on positive symptoms of schizophrenia, such as hallucinations, delusions, and disordered thoughts, it consistently shows that music therapy improves negative symptoms, poster presenter Amy Agrawal, MD, VA Boston Healthcare System and instructor of psychiatry at Harvard Medical School, Boston, said in an interview.

Pauline Anderson

Current antipsychotic drugs aren’t very effective in addressing negative symptoms of schizophrenia, and many patients are noncompliant with these drug regimens because of side effects.

“We need to target the negative symptoms of schizophrenia better,” said Dr. Agrawal. “The antipsychotic medications we have are not enough, so why don’t we start incorporating music therapy groups into the inpatient psychiatry setting as a standard of care?”

The findings were presented at the annual meeting of the American Psychiatric Association.

Dr. Agrawal has long been interested in music. As a child, she was a member of a state choir, but she hadn’t sung for years. After receiving several medals for her clarinet playing during her youth, she stopped playing while in medical school.
 

Instant boost

During the pandemic, though, she turned back to music and started singing regularly. “I noticed an instant boost in my mood and wondered why I stopped making music for so long, as it made me feel so much happier and calmer.”

She also noticed how music affected her sister, who has paranoid schizophrenia. She described an incident in which her sibling became so loud and paranoid at a restaurant that Dr. Agrawal thought they would be asked to leave.

Then her sister started singing a song she’d sung during a beauty contest years before. “With the music, she calmed right down; she was smiling; she was happy,” said Dr. Agrawal.

That incident made Dr. Agrawal feel, “I had my sister back.” She decided to bring music therapy to her inpatient psychiatry unit and soon noted the benefits for individual patients.

For this new study, Dr. Agrawal and her mentor carried out a literature search. “I was surprised at how many articles popped up, because the field of psychiatry can be very heavily medication based, but people are now getting very interested in this topic,” said Dr. Agrawal.

The review included seven articles, most of which were published within the past 3 years. Some articles specified that the therapy was conducted on an inpatient psychiatric unit, but others didn’t indicate the setting. Studies also didn’t specify whether the therapy was delivered by a trained music therapist.

There was an overall lack of clear measures, graphs, or statistics quantifying the benefits of music therapy on schizophrenia, noted Dr. Agrawal. “But from general statements in the articles, music therapy helped treat sleep disturbances and improved negative symptoms.”
 

Gets patients socializing

The music, she said, led patients to start socializing, talking about their emotions, and opening up to their clinicians about their mental health symptoms. “Some patients just did not engage at all, and then when the music came on, they would actively participate with the clinician.”

Dancing to music also tended to motivate patients to participate in their treatment, she added. Different forms of movement, such as rhythmic movements and creative exercises, can be added during music therapy.

In addition to improving negative schizophrenia symptoms, music therapy helps with sleep disturbances, depression, and regulating emotional behavior, the research shows. “When patients were agitated or upset, certain music would help them regulate their own affect,” said Dr. Agrawal.

However, it’s not clear from these studies what type of music – classical, rock, country, etc. – was most effective for people.

One article discussed the positive impact of music on patients with schizophrenia while at work. “They seem to have improved work performance,” Dr. Agrawal said.

The length of exposure to music therapy did not seem to make a difference in terms of whether the therapy had a positive effect, she added.
 

Key research wave

A “key next wave” of research should be to determine whether music therapy decreases the hospital readmission rate, said Dr. Agrawal.

There are several barriers to implementing music therapy programs in hospitals, including cost, the availability of trained therapists, and time constraints, she said.

“Regardless of the barriers, hospital administrators and psychiatrists need to know about this research so they will invest more efforts in recruiting music therapists and incorporating music group therapy into standard clinical practice for psychiatric patients so there are better clinical outcomes.”

Commenting on the research, Michelle B. Riba, MD, professor, department of psychiatry, University of Michigan, Ann Arbor, said the study adds to the literature “and helps us think about adjunctive treatments in a very difficult population.”

University of Michigan

Difficult topic to study

Although she found the review “very limited,” she recognizes the difficulty of studying music therapy on in-patient psychiatry units.

“Patients are there for short stays, most are getting other treatments, and it’s hard to segment people into negative vs. positive. Also, the ages and genders are different, and their previous treatments are different.”

While it’s sometimes difficult to conduct major research on a topic, “that doesn’t mean we can’t help people,” said Dr. Riba.

She noted that music therapy is beneficial not only for patients with schizophrenia but also is “soothing and relaxing” for those with other conditions. She runs a psychiatric oncology program at her institution’s cancer center, which offers music therapy along with art therapy.

Kevin M. Malone, MD, of University College Dublin, also has firsthand experience with music therapy. “We had a terrific music therapist as part of our clinical psychosis team,” he said in an interview.

University College Dublin

A version of this article was first published on Medscape.com.

SAN FRANCISCO – Music therapy improves negative symptoms of schizophrenia, such as lack of motivation, reclusiveness, and isolation, a new review of the literature suggests.

Although the study had conflicting results regarding the effects of music therapy on positive symptoms of schizophrenia, such as hallucinations, delusions, and disordered thoughts, it consistently shows that music therapy improves negative symptoms, poster presenter Amy Agrawal, MD, VA Boston Healthcare System and instructor of psychiatry at Harvard Medical School, Boston, said in an interview.

Pauline Anderson

Current antipsychotic drugs aren’t very effective in addressing negative symptoms of schizophrenia, and many patients are noncompliant with these drug regimens because of side effects.

“We need to target the negative symptoms of schizophrenia better,” said Dr. Agrawal. “The antipsychotic medications we have are not enough, so why don’t we start incorporating music therapy groups into the inpatient psychiatry setting as a standard of care?”

The findings were presented at the annual meeting of the American Psychiatric Association.

Dr. Agrawal has long been interested in music. As a child, she was a member of a state choir, but she hadn’t sung for years. After receiving several medals for her clarinet playing during her youth, she stopped playing while in medical school.
 

Instant boost

During the pandemic, though, she turned back to music and started singing regularly. “I noticed an instant boost in my mood and wondered why I stopped making music for so long, as it made me feel so much happier and calmer.”

She also noticed how music affected her sister, who has paranoid schizophrenia. She described an incident in which her sibling became so loud and paranoid at a restaurant that Dr. Agrawal thought they would be asked to leave.

Then her sister started singing a song she’d sung during a beauty contest years before. “With the music, she calmed right down; she was smiling; she was happy,” said Dr. Agrawal.

That incident made Dr. Agrawal feel, “I had my sister back.” She decided to bring music therapy to her inpatient psychiatry unit and soon noted the benefits for individual patients.

For this new study, Dr. Agrawal and her mentor carried out a literature search. “I was surprised at how many articles popped up, because the field of psychiatry can be very heavily medication based, but people are now getting very interested in this topic,” said Dr. Agrawal.

The review included seven articles, most of which were published within the past 3 years. Some articles specified that the therapy was conducted on an inpatient psychiatric unit, but others didn’t indicate the setting. Studies also didn’t specify whether the therapy was delivered by a trained music therapist.

There was an overall lack of clear measures, graphs, or statistics quantifying the benefits of music therapy on schizophrenia, noted Dr. Agrawal. “But from general statements in the articles, music therapy helped treat sleep disturbances and improved negative symptoms.”
 

Gets patients socializing

The music, she said, led patients to start socializing, talking about their emotions, and opening up to their clinicians about their mental health symptoms. “Some patients just did not engage at all, and then when the music came on, they would actively participate with the clinician.”

Dancing to music also tended to motivate patients to participate in their treatment, she added. Different forms of movement, such as rhythmic movements and creative exercises, can be added during music therapy.

In addition to improving negative schizophrenia symptoms, music therapy helps with sleep disturbances, depression, and regulating emotional behavior, the research shows. “When patients were agitated or upset, certain music would help them regulate their own affect,” said Dr. Agrawal.

However, it’s not clear from these studies what type of music – classical, rock, country, etc. – was most effective for people.

One article discussed the positive impact of music on patients with schizophrenia while at work. “They seem to have improved work performance,” Dr. Agrawal said.

The length of exposure to music therapy did not seem to make a difference in terms of whether the therapy had a positive effect, she added.
 

Key research wave

A “key next wave” of research should be to determine whether music therapy decreases the hospital readmission rate, said Dr. Agrawal.

There are several barriers to implementing music therapy programs in hospitals, including cost, the availability of trained therapists, and time constraints, she said.

“Regardless of the barriers, hospital administrators and psychiatrists need to know about this research so they will invest more efforts in recruiting music therapists and incorporating music group therapy into standard clinical practice for psychiatric patients so there are better clinical outcomes.”

Commenting on the research, Michelle B. Riba, MD, professor, department of psychiatry, University of Michigan, Ann Arbor, said the study adds to the literature “and helps us think about adjunctive treatments in a very difficult population.”

University of Michigan

Difficult topic to study

Although she found the review “very limited,” she recognizes the difficulty of studying music therapy on in-patient psychiatry units.

“Patients are there for short stays, most are getting other treatments, and it’s hard to segment people into negative vs. positive. Also, the ages and genders are different, and their previous treatments are different.”

While it’s sometimes difficult to conduct major research on a topic, “that doesn’t mean we can’t help people,” said Dr. Riba.

She noted that music therapy is beneficial not only for patients with schizophrenia but also is “soothing and relaxing” for those with other conditions. She runs a psychiatric oncology program at her institution’s cancer center, which offers music therapy along with art therapy.

Kevin M. Malone, MD, of University College Dublin, also has firsthand experience with music therapy. “We had a terrific music therapist as part of our clinical psychosis team,” he said in an interview.

University College Dublin

A version of this article was first published on Medscape.com.

Racial disparities in melanoma stage at diagnosis were less pronounced in a large cohort of Veterans Affairs patients, compared with a large cohort of U.S. men, a new analysis shows.

“The trend of a lower racial disparity in the VA in the proportion of melanomas with local disease and in the proportion of distant metastasis at presentation was observed across age groups,” wrote Martin A. Weinstock MD, PhD, and Rachel K. Lim, of the department of dermatology at Brown University, Providence, R.I., and the Center for Dermatoepidemiology at the VA Providence Healthcare System. The study was published online in the Journal of the American Academy of Dermatology.

“Melanoma was the fourth-most common cancer [diagnosed] in male VA patients in 2010,” wrote the authors, who also pointed out that “prior surveys found that 11%-13% of U.S. active-duty personnel routinely use sunscreen despite significant occupational sun exposure. Racial disparities are important concerns in the VA and elsewhere.”

To compare the stage of melanoma at presentation among White and non-Whites patients in the VA and in the general U.S. population, the researchers identified invasive cutaneous melanoma cases from 2000 to 2019 in the VA Corporate Data Warehouse and the Surveillance, Epidemiology and End Results Program (SEER).

They restricted the analysis to men because of the small proportion of women in the at-risk veteran population and excluded cases with an age younger than 20, those with unknown histology, and melanoma in situ. The researchers performed two-tailed z-tests to evaluate the difference in proportions of melanoma stages between the veteran population and the general population.

The analysis included 44,077 cases of invasive melanoma in the VA and 217,030 in SEER. Racial disparities in melanoma staging were substantially less pronounced in the VA than in SEER.

In the VA, localized disease represented 77.9% of melanomas among Whites versus 71.0% among non-Whites. But in SEER, localized disease represented 80.7% of melanomas among Whites versus 61.5% in non-Whites – over double the VA disparity (P < .0001).

Christoph Burgstedt/Science Photo Library/Getty Images

Likewise, the disparity between Whites and nonwhites observed for regional or distant metastatic disease at presentation in the VA was lower than the disparity observed in SEER. For example, in the VA, distant metastatic disease at presentation represented 6.1% of melanomas among Whites versus 8.6% among non-Whites, while in SEER it represented 4.8% of melanomas among Whites versus 11.3% in non-Whites – again, more than double the VA disparity (P < .0001).

“These differences between the VA and SEER were less marked” among those older than 65 years, the researchers wrote. “Notably, the differences between VA and SEER in racial disparities among those greater than 65 in age were still significant for localized disease and for distant metastasis.”

The findings suggest that the VA “may be more effective in reducing racial disparities in melanoma stage at diagnosis, potentially due to all patients in the VA dataset having insured access to health care, regardless of socioeconomic status,” the researchers concluded. Similarly, the decreased difference in racial disparities observed in patients older than 65 across systems “may be related to the availability of Medicare to the older general populations. The authors acknowledged several study limitations, such as the predominantly elderly and male VA population, potentially underreported utilization of non-VA dermatologic care, and variation in geographic regions covered by each database.

Travis W. Blalock, MD, director of dermatologic surgery, Mohs micrographic surgery, and cutaneous oncology at Emory University, Atlanta, who was asked to comment on the work, said in an interview he would have liked to see a more detailed breakdown of the younger patients, “for those in their 30s and 40s, to see if this trend held up.”

He would have also liked to see how the data trended over time, adding, “while this, broadly, may be good news for our veterans, attributing this finding to a reduction in access disparity or some other organizational intervention seems a little premature. Regardless, Dr. Weinstock has given us, once again, information from our veterans to probe for the betterment of all patients.”

The researchers reported having no relevant disclosures and the study had no funding. Dr. Blalock disclosed that he has served as a principal investigator for Castle Biosciences.

Racial disparities in melanoma stage at diagnosis were less pronounced in a large cohort of Veterans Affairs patients, compared with a large cohort of U.S. men, a new analysis shows.

“The trend of a lower racial disparity in the VA in the proportion of melanomas with local disease and in the proportion of distant metastasis at presentation was observed across age groups,” wrote Martin A. Weinstock MD, PhD, and Rachel K. Lim, of the department of dermatology at Brown University, Providence, R.I., and the Center for Dermatoepidemiology at the VA Providence Healthcare System. The study was published online in the Journal of the American Academy of Dermatology.

“Melanoma was the fourth-most common cancer [diagnosed] in male VA patients in 2010,” wrote the authors, who also pointed out that “prior surveys found that 11%-13% of U.S. active-duty personnel routinely use sunscreen despite significant occupational sun exposure. Racial disparities are important concerns in the VA and elsewhere.”

To compare the stage of melanoma at presentation among White and non-Whites patients in the VA and in the general U.S. population, the researchers identified invasive cutaneous melanoma cases from 2000 to 2019 in the VA Corporate Data Warehouse and the Surveillance, Epidemiology and End Results Program (SEER).

They restricted the analysis to men because of the small proportion of women in the at-risk veteran population and excluded cases with an age younger than 20, those with unknown histology, and melanoma in situ. The researchers performed two-tailed z-tests to evaluate the difference in proportions of melanoma stages between the veteran population and the general population.

The analysis included 44,077 cases of invasive melanoma in the VA and 217,030 in SEER. Racial disparities in melanoma staging were substantially less pronounced in the VA than in SEER.

In the VA, localized disease represented 77.9% of melanomas among Whites versus 71.0% among non-Whites. But in SEER, localized disease represented 80.7% of melanomas among Whites versus 61.5% in non-Whites – over double the VA disparity (P < .0001).

Christoph Burgstedt/Science Photo Library/Getty Images

Likewise, the disparity between Whites and nonwhites observed for regional or distant metastatic disease at presentation in the VA was lower than the disparity observed in SEER. For example, in the VA, distant metastatic disease at presentation represented 6.1% of melanomas among Whites versus 8.6% among non-Whites, while in SEER it represented 4.8% of melanomas among Whites versus 11.3% in non-Whites – again, more than double the VA disparity (P < .0001).

“These differences between the VA and SEER were less marked” among those older than 65 years, the researchers wrote. “Notably, the differences between VA and SEER in racial disparities among those greater than 65 in age were still significant for localized disease and for distant metastasis.”

The findings suggest that the VA “may be more effective in reducing racial disparities in melanoma stage at diagnosis, potentially due to all patients in the VA dataset having insured access to health care, regardless of socioeconomic status,” the researchers concluded. Similarly, the decreased difference in racial disparities observed in patients older than 65 across systems “may be related to the availability of Medicare to the older general populations. The authors acknowledged several study limitations, such as the predominantly elderly and male VA population, potentially underreported utilization of non-VA dermatologic care, and variation in geographic regions covered by each database.

Travis W. Blalock, MD, director of dermatologic surgery, Mohs micrographic surgery, and cutaneous oncology at Emory University, Atlanta, who was asked to comment on the work, said in an interview he would have liked to see a more detailed breakdown of the younger patients, “for those in their 30s and 40s, to see if this trend held up.”

He would have also liked to see how the data trended over time, adding, “while this, broadly, may be good news for our veterans, attributing this finding to a reduction in access disparity or some other organizational intervention seems a little premature. Regardless, Dr. Weinstock has given us, once again, information from our veterans to probe for the betterment of all patients.”

The researchers reported having no relevant disclosures and the study had no funding. Dr. Blalock disclosed that he has served as a principal investigator for Castle Biosciences.

Racial disparities in melanoma stage at diagnosis were less pronounced in a large cohort of Veterans Affairs patients, compared with a large cohort of U.S. men, a new analysis shows.

“The trend of a lower racial disparity in the VA in the proportion of melanomas with local disease and in the proportion of distant metastasis at presentation was observed across age groups,” wrote Martin A. Weinstock MD, PhD, and Rachel K. Lim, of the department of dermatology at Brown University, Providence, R.I., and the Center for Dermatoepidemiology at the VA Providence Healthcare System. The study was published online in the Journal of the American Academy of Dermatology.

“Melanoma was the fourth-most common cancer [diagnosed] in male VA patients in 2010,” wrote the authors, who also pointed out that “prior surveys found that 11%-13% of U.S. active-duty personnel routinely use sunscreen despite significant occupational sun exposure. Racial disparities are important concerns in the VA and elsewhere.”

To compare the stage of melanoma at presentation among White and non-Whites patients in the VA and in the general U.S. population, the researchers identified invasive cutaneous melanoma cases from 2000 to 2019 in the VA Corporate Data Warehouse and the Surveillance, Epidemiology and End Results Program (SEER).

They restricted the analysis to men because of the small proportion of women in the at-risk veteran population and excluded cases with an age younger than 20, those with unknown histology, and melanoma in situ. The researchers performed two-tailed z-tests to evaluate the difference in proportions of melanoma stages between the veteran population and the general population.

The analysis included 44,077 cases of invasive melanoma in the VA and 217,030 in SEER. Racial disparities in melanoma staging were substantially less pronounced in the VA than in SEER.

In the VA, localized disease represented 77.9% of melanomas among Whites versus 71.0% among non-Whites. But in SEER, localized disease represented 80.7% of melanomas among Whites versus 61.5% in non-Whites – over double the VA disparity (P < .0001).

Christoph Burgstedt/Science Photo Library/Getty Images

Likewise, the disparity between Whites and nonwhites observed for regional or distant metastatic disease at presentation in the VA was lower than the disparity observed in SEER. For example, in the VA, distant metastatic disease at presentation represented 6.1% of melanomas among Whites versus 8.6% among non-Whites, while in SEER it represented 4.8% of melanomas among Whites versus 11.3% in non-Whites – again, more than double the VA disparity (P < .0001).

“These differences between the VA and SEER were less marked” among those older than 65 years, the researchers wrote. “Notably, the differences between VA and SEER in racial disparities among those greater than 65 in age were still significant for localized disease and for distant metastasis.”

The findings suggest that the VA “may be more effective in reducing racial disparities in melanoma stage at diagnosis, potentially due to all patients in the VA dataset having insured access to health care, regardless of socioeconomic status,” the researchers concluded. Similarly, the decreased difference in racial disparities observed in patients older than 65 across systems “may be related to the availability of Medicare to the older general populations. The authors acknowledged several study limitations, such as the predominantly elderly and male VA population, potentially underreported utilization of non-VA dermatologic care, and variation in geographic regions covered by each database.

Travis W. Blalock, MD, director of dermatologic surgery, Mohs micrographic surgery, and cutaneous oncology at Emory University, Atlanta, who was asked to comment on the work, said in an interview he would have liked to see a more detailed breakdown of the younger patients, “for those in their 30s and 40s, to see if this trend held up.”

He would have also liked to see how the data trended over time, adding, “while this, broadly, may be good news for our veterans, attributing this finding to a reduction in access disparity or some other organizational intervention seems a little premature. Regardless, Dr. Weinstock has given us, once again, information from our veterans to probe for the betterment of all patients.”

The researchers reported having no relevant disclosures and the study had no funding. Dr. Blalock disclosed that he has served as a principal investigator for Castle Biosciences.

Continuous glucose monitors (CGMs) could enhance care of hospitalized people with diabetes, supplementing or possibly even replacing the use of finger sticks to draw blood to measure a patient’s glucose level. But that technological future will require ensuring that the monitoring devices are as accurate as the conventional method, experts told this news organization.

In 2020, the U.S. Food and Drug Administration enabled in-hospital use of CGMs to reduce contact between patients and health care providers during the COVID-19 pandemic. Diabetes is a risk factor for more severe COVID, meaning that many patients with the infection also required ongoing care for their blood sugar problems. 

Prior to the pandemic, in-person finger-stick tests were the primary means of measuring glucose for hospitalized patients with diabetes.

The trouble is that finger-stick measurements quickly become inaccurate.

“Glucose is a measurement that changes pretty rapidly,” said Eileen Faulds, RN, PhD, an endocrinology nurse and health services researcher at the Ohio State University, Columbus. Finger sticks might occur only four or five times per day, Dr. Faulds noted, or as often as every hour for people who receive insulin intravenously. But even that more frequent pace is far from continuous.

“With CGM we can get the glucose level in real time,” Dr. Faulds said. 

Dr. Faulds is lead author of a new study in the Journal of Diabetes Science and Technology, which shows that nurses in the ICU believe that using continuous monitors, subcutaneous filaments connected to sensors that regularly report glucose levels, enables better patient care than does relying on periodic glucose tests alone. Nurses still used traditional finger sticks, which Dr. Faulds notes are highly accurate at the time of the reading.

In a 2022 study, glucose levels generated by CGM and those measured by finger sticks varied by up to 14%. A hybrid care model combining CGMs and finger stick tests may emerge, Dr. Faulds said.
 

A gusher of glucose data

People with diabetes have long been able to use CGMs in their daily lives, which typically report the glucose value to a smartphone or watch. The devices are now part of hospital care as well. In 2022, the Food and Drug Administration granted a breakthrough therapy designation to the company Dexcom for use of its CGMs to manage care of people with diabetes in hospitals.

One open question is how often CGMs should report glucose readings for optimum patient health. Dexcom’s G6 CGM reports glucose levels every five minutes, for example, whereas Abbott’s FreeStyle Libre 2 delivers glucose values every minute. 

“We wouldn’t look at each value, we would look at the big picture,” to determine if a patient is at risk of becoming hyper- or hypoglycemic, said Lizda Guerrero-Arroyo, MD, a postdoctoral fellow in endocrinology at the Emory University School of Medicine, Atlanta. Dr. Guerrero-Arroyo recently reported that clinicians in multiple ICUs began to use CGMs in conjunction with finger sticks during the pandemic and felt the devices could reduce patient discomfort. 

“A finger stick is very painful,” Dr. Guerrero-Arroyo said, and a bottleneck for nursing staff who administer these tests. In contrast, Dr. Faulds said, CGM placement is essentially painless and requires less labor on the ward to manage.

Beyond use in the ICU, clinicians are also experimenting with use of CGMs to monitor blood sugar levels in people with diabetes who are undergoing general surgery. And other researchers are describing how to integrate data from CGMs into patient care tools such as the electronic health record, although a standard way to do this does not yet exist.

Assuming CGMs remain part of the mix for in-hospital care of people with diabetes, clinicians may mainly need trend summaries of how glucose levels rise and fall over time, said data scientist Samantha Spierling Bagsic, PhD, of the Scripps Whittier Diabetes Institute, San Diego. Dr. Guerrero-Arroyo said that she shares that vision. But a minute-by-minute analysis of glucose levels also may be necessary to get a granular sense of how changing a patient’s insulin level affects their blood sugar, Dr. Spierling Bagsic said.

“We need to figure out what data different audiences need, how often we need to measure glucose, and how to present that information to different audiences in different ways,” said Dr. Spierling Bagsic, a co-author of the study about integrating CGM data into patient care tools.

The wider use of CGMs in hospitals may be one silver lining of the COVID-19 pandemic. As an inpatient endocrinology nurse, Dr. Faulds said that she wanted to use CGMs prior to the outbreak, but at that point, a critical mass of studies about their benefits was missing.

“We all know the terrible things that happened during the pandemic,” Dr. Faulds said. “But it gave us the allowance to use CGMs, and we saw that nurses loved them.”

Dr. Faulds reports relationships with Dexcom and Insulet and has received an honorarium from Medscape. Dr. Guerrero-Arroyo and Dr. Spierling Bagsic reported no financial conflicts of interest.

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

Continuous glucose monitors (CGMs) could enhance care of hospitalized people with diabetes, supplementing or possibly even replacing the use of finger sticks to draw blood to measure a patient’s glucose level. But that technological future will require ensuring that the monitoring devices are as accurate as the conventional method, experts told this news organization.

In 2020, the U.S. Food and Drug Administration enabled in-hospital use of CGMs to reduce contact between patients and health care providers during the COVID-19 pandemic. Diabetes is a risk factor for more severe COVID, meaning that many patients with the infection also required ongoing care for their blood sugar problems. 

Prior to the pandemic, in-person finger-stick tests were the primary means of measuring glucose for hospitalized patients with diabetes.

The trouble is that finger-stick measurements quickly become inaccurate.

“Glucose is a measurement that changes pretty rapidly,” said Eileen Faulds, RN, PhD, an endocrinology nurse and health services researcher at the Ohio State University, Columbus. Finger sticks might occur only four or five times per day, Dr. Faulds noted, or as often as every hour for people who receive insulin intravenously. But even that more frequent pace is far from continuous.

“With CGM we can get the glucose level in real time,” Dr. Faulds said. 

Dr. Faulds is lead author of a new study in the Journal of Diabetes Science and Technology, which shows that nurses in the ICU believe that using continuous monitors, subcutaneous filaments connected to sensors that regularly report glucose levels, enables better patient care than does relying on periodic glucose tests alone. Nurses still used traditional finger sticks, which Dr. Faulds notes are highly accurate at the time of the reading.

In a 2022 study, glucose levels generated by CGM and those measured by finger sticks varied by up to 14%. A hybrid care model combining CGMs and finger stick tests may emerge, Dr. Faulds said.
 

A gusher of glucose data

People with diabetes have long been able to use CGMs in their daily lives, which typically report the glucose value to a smartphone or watch. The devices are now part of hospital care as well. In 2022, the Food and Drug Administration granted a breakthrough therapy designation to the company Dexcom for use of its CGMs to manage care of people with diabetes in hospitals.

One open question is how often CGMs should report glucose readings for optimum patient health. Dexcom’s G6 CGM reports glucose levels every five minutes, for example, whereas Abbott’s FreeStyle Libre 2 delivers glucose values every minute. 

“We wouldn’t look at each value, we would look at the big picture,” to determine if a patient is at risk of becoming hyper- or hypoglycemic, said Lizda Guerrero-Arroyo, MD, a postdoctoral fellow in endocrinology at the Emory University School of Medicine, Atlanta. Dr. Guerrero-Arroyo recently reported that clinicians in multiple ICUs began to use CGMs in conjunction with finger sticks during the pandemic and felt the devices could reduce patient discomfort. 

“A finger stick is very painful,” Dr. Guerrero-Arroyo said, and a bottleneck for nursing staff who administer these tests. In contrast, Dr. Faulds said, CGM placement is essentially painless and requires less labor on the ward to manage.

Beyond use in the ICU, clinicians are also experimenting with use of CGMs to monitor blood sugar levels in people with diabetes who are undergoing general surgery. And other researchers are describing how to integrate data from CGMs into patient care tools such as the electronic health record, although a standard way to do this does not yet exist.

Assuming CGMs remain part of the mix for in-hospital care of people with diabetes, clinicians may mainly need trend summaries of how glucose levels rise and fall over time, said data scientist Samantha Spierling Bagsic, PhD, of the Scripps Whittier Diabetes Institute, San Diego. Dr. Guerrero-Arroyo said that she shares that vision. But a minute-by-minute analysis of glucose levels also may be necessary to get a granular sense of how changing a patient’s insulin level affects their blood sugar, Dr. Spierling Bagsic said.

“We need to figure out what data different audiences need, how often we need to measure glucose, and how to present that information to different audiences in different ways,” said Dr. Spierling Bagsic, a co-author of the study about integrating CGM data into patient care tools.

The wider use of CGMs in hospitals may be one silver lining of the COVID-19 pandemic. As an inpatient endocrinology nurse, Dr. Faulds said that she wanted to use CGMs prior to the outbreak, but at that point, a critical mass of studies about their benefits was missing.

“We all know the terrible things that happened during the pandemic,” Dr. Faulds said. “But it gave us the allowance to use CGMs, and we saw that nurses loved them.”

Dr. Faulds reports relationships with Dexcom and Insulet and has received an honorarium from Medscape. Dr. Guerrero-Arroyo and Dr. Spierling Bagsic reported no financial conflicts of interest.

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

Continuous glucose monitors (CGMs) could enhance care of hospitalized people with diabetes, supplementing or possibly even replacing the use of finger sticks to draw blood to measure a patient’s glucose level. But that technological future will require ensuring that the monitoring devices are as accurate as the conventional method, experts told this news organization.

In 2020, the U.S. Food and Drug Administration enabled in-hospital use of CGMs to reduce contact between patients and health care providers during the COVID-19 pandemic. Diabetes is a risk factor for more severe COVID, meaning that many patients with the infection also required ongoing care for their blood sugar problems. 

Prior to the pandemic, in-person finger-stick tests were the primary means of measuring glucose for hospitalized patients with diabetes.

The trouble is that finger-stick measurements quickly become inaccurate.

“Glucose is a measurement that changes pretty rapidly,” said Eileen Faulds, RN, PhD, an endocrinology nurse and health services researcher at the Ohio State University, Columbus. Finger sticks might occur only four or five times per day, Dr. Faulds noted, or as often as every hour for people who receive insulin intravenously. But even that more frequent pace is far from continuous.

“With CGM we can get the glucose level in real time,” Dr. Faulds said. 

Dr. Faulds is lead author of a new study in the Journal of Diabetes Science and Technology, which shows that nurses in the ICU believe that using continuous monitors, subcutaneous filaments connected to sensors that regularly report glucose levels, enables better patient care than does relying on periodic glucose tests alone. Nurses still used traditional finger sticks, which Dr. Faulds notes are highly accurate at the time of the reading.

In a 2022 study, glucose levels generated by CGM and those measured by finger sticks varied by up to 14%. A hybrid care model combining CGMs and finger stick tests may emerge, Dr. Faulds said.
 

A gusher of glucose data

People with diabetes have long been able to use CGMs in their daily lives, which typically report the glucose value to a smartphone or watch. The devices are now part of hospital care as well. In 2022, the Food and Drug Administration granted a breakthrough therapy designation to the company Dexcom for use of its CGMs to manage care of people with diabetes in hospitals.

One open question is how often CGMs should report glucose readings for optimum patient health. Dexcom’s G6 CGM reports glucose levels every five minutes, for example, whereas Abbott’s FreeStyle Libre 2 delivers glucose values every minute. 

“We wouldn’t look at each value, we would look at the big picture,” to determine if a patient is at risk of becoming hyper- or hypoglycemic, said Lizda Guerrero-Arroyo, MD, a postdoctoral fellow in endocrinology at the Emory University School of Medicine, Atlanta. Dr. Guerrero-Arroyo recently reported that clinicians in multiple ICUs began to use CGMs in conjunction with finger sticks during the pandemic and felt the devices could reduce patient discomfort. 

“A finger stick is very painful,” Dr. Guerrero-Arroyo said, and a bottleneck for nursing staff who administer these tests. In contrast, Dr. Faulds said, CGM placement is essentially painless and requires less labor on the ward to manage.

Beyond use in the ICU, clinicians are also experimenting with use of CGMs to monitor blood sugar levels in people with diabetes who are undergoing general surgery. And other researchers are describing how to integrate data from CGMs into patient care tools such as the electronic health record, although a standard way to do this does not yet exist.

Assuming CGMs remain part of the mix for in-hospital care of people with diabetes, clinicians may mainly need trend summaries of how glucose levels rise and fall over time, said data scientist Samantha Spierling Bagsic, PhD, of the Scripps Whittier Diabetes Institute, San Diego. Dr. Guerrero-Arroyo said that she shares that vision. But a minute-by-minute analysis of glucose levels also may be necessary to get a granular sense of how changing a patient’s insulin level affects their blood sugar, Dr. Spierling Bagsic said.

“We need to figure out what data different audiences need, how often we need to measure glucose, and how to present that information to different audiences in different ways,” said Dr. Spierling Bagsic, a co-author of the study about integrating CGM data into patient care tools.

The wider use of CGMs in hospitals may be one silver lining of the COVID-19 pandemic. As an inpatient endocrinology nurse, Dr. Faulds said that she wanted to use CGMs prior to the outbreak, but at that point, a critical mass of studies about their benefits was missing.

“We all know the terrible things that happened during the pandemic,” Dr. Faulds said. “But it gave us the allowance to use CGMs, and we saw that nurses loved them.”

Dr. Faulds reports relationships with Dexcom and Insulet and has received an honorarium from Medscape. Dr. Guerrero-Arroyo and Dr. Spierling Bagsic reported no financial conflicts of interest.

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

DENVER – The use of the monoclonal antibody satralizumab (Enspryng) for the long-term treatment of anti–aquaporin-4 (AQP4) antibody–positive neuromyelitis optica spectrum disorder (NMOSD) provides sustained freedom from relapse with no new safety concerns over 5 years, new research shows.  

“In long-term observations, we are seeing a nice, sustained suppression of relapses early, as well as late, in treatment,” said study investigator Anthony Traboulsee, MD, University of British Columbia, Vancouver, in presenting the findings at the annual meeting of the Consortium of Multiple Sclerosis Centers.

“It remains very tolerable with no participants discontinuing because of side effects,” he said. “And importantly, [there are] no signs of a delayed risk of infections for both monotherapy and combination therapy.”

Satralizumab, a monoclonal recycling antibody, targets the interleukin (IL)–6 receptor, which is elevated in the serum and cerebrospinal fluid of patients in NMOSD.

The drug was approved by the Food and Drug Administration in 2020 for the treatment of AQP4 antibody–positive NMOSD after favorable results from two key trials: SAkuraSky and SAkuraStar.

The FDA approval marked satralizumab as the third therapy for NMOSD, following eculizumab (Soliris) and inebilizumab (Uplizna).

Satralizumab is administered in subcutaneous injections every 4 weeks after a run-in period of injections at weeks 0, 2, and 4.

Longest trial to date

To evaluate the drug’s long-term efficacy in the treatment of AQP4 IgG–positive NMOSD, patients from the two previous phase 3 trials were entered into the single arm, open-label SAkuraMoon study and continued treatment with the satralizumab 120 mg injections once monthly, with or without immunosuppressive therapy.

The study included 106 patients (mean age 44 years, 89.6% women), all of whom had received one or more doses of satralizumab by the data cutoff of January 2022.

With a median duration of satralizumab exposure of 5 years, the overall adjusted annualized rate of investigator protocol-defined relapse (ARR) was 0.09.

Longitudinal assessment further showed no significant increase in the relapse rate over the course of the study, with an ARR rate of 0.16 at year 1; 0.10 at year 2; 0.05 at year 3; and 0.07 at year 4.

At week 240 (4.6 years), 72% of satralizumab-treated patients were relapse-free, with 91% free from severe relapse.

In addition, 85% of patients had no sustained disability, as measured by Expanded Disability Status Scale (EDSS) worsening, over the study period.  

Asked if there are potential subgroups of patients who may be more susceptible to the worsening of disability, Dr. Traboulsee responded “not that we can tell as of yet.”

“I would like to explore this further as this is a relatively new observation, and, as far as I know, this is the longest follow-up for an NMO treatment trial cohort,” he said.

Favorable safety profile

The safety profile was also favorable, consistent with results in the earlier trials. The longer exposure to satralizumab was not associated with a higher risk of severe (grade 3 or higher) laboratory changes versus the double-blind studies. “Rates of adverse events and serious adverse events with overall satralizumab treatment were comparable with the double-blind periods,” said Dr. Traboulsee.

“With satralizumab combined with immunosuppressant therapy, we’re not seeing an increased rate of infections, because it’s not an immune suppressant – it doesn’t suppress lymphocytes or lower immunoglobulin,” he added.

While the use of combination therapy has been an important clinical concern, Dr. Traboulsee noted that “this does not appear to be the case with satralizumab when combined with daily prednisone or daily azathioprine.”

“There is no increased risk of infections, compared with placebo, and it interestingly appears lower than patients on prednisone or azathioprine alone,” he said.

While the median follow-up was 5 years, some in the clinical trial population have been on treatment for up to 7.9 years.

“Based on the current safety and efficacy data, they could stay on this therapy indefinitely, in my opinion,” Dr. Traboulsee said.

In addition to its long-term safety and efficacy, satralizumab “is easy for patients to take and does not require access to an infusion center. It’s easy for physicians to monitor safety, especially since no additional vaccinations or precautions are required beyond what is done in routine care.”

“What I conclude from that clinically is that this is a highly effective and safe therapy by itself or in combination with another agent,” Dr. Traboulsee said.

He noted that the lack of a bump in infections is “really encouraging and very important with a chronic disease that affects elderly patients. So far, so good,” he added.

‘A good first-line therapy’

Commenting on the study, Shailee Shah, MD, an assistant professor in the neuroimmunology division at Vanderbilt University Medical Center, Nashville, Tenn., agreed that the findings bode well for satralizumab’s long-term benefits.

“These are promising results and suggest that satralizumab is very effective in the long term, and even when patients relapse, those relapses are less severe than they would likely be if the patient were off therapy,” she said.

She noted that, while the ability to self-administer injections with satralizumab is convenient, preferences vary.

“This is patient dependent,” Dr. Shah said. “For some patients an injectable medication is ideal but for others an infusion medication [such as eculizumab] is preferred.”

Overall, however, Dr. Shah described satralizumab as “a good first-line therapy for patients with NMOSD in addition to eculizumab/ravulizumab and inebilizumab.”

“It is reasonable to consider this medication in isolation or with concomitant immunosuppressive therapy,” she said.

Dr. Traboulsee’s disclosures include relationships with Novartis, Roche, Sanofi (Genzyme), Ingo Kleiter, Alexion, Almirall, Bayer, Biogen, Celgene, Genentech, Hexal, Horizon, Merck, and Sanofi. Dr. Shah reports that she has served on advisory boards for Horizon, Alexion, and Genentech.

DENVER – The use of the monoclonal antibody satralizumab (Enspryng) for the long-term treatment of anti–aquaporin-4 (AQP4) antibody–positive neuromyelitis optica spectrum disorder (NMOSD) provides sustained freedom from relapse with no new safety concerns over 5 years, new research shows.  

“In long-term observations, we are seeing a nice, sustained suppression of relapses early, as well as late, in treatment,” said study investigator Anthony Traboulsee, MD, University of British Columbia, Vancouver, in presenting the findings at the annual meeting of the Consortium of Multiple Sclerosis Centers.

“It remains very tolerable with no participants discontinuing because of side effects,” he said. “And importantly, [there are] no signs of a delayed risk of infections for both monotherapy and combination therapy.”

Satralizumab, a monoclonal recycling antibody, targets the interleukin (IL)–6 receptor, which is elevated in the serum and cerebrospinal fluid of patients in NMOSD.

The drug was approved by the Food and Drug Administration in 2020 for the treatment of AQP4 antibody–positive NMOSD after favorable results from two key trials: SAkuraSky and SAkuraStar.

The FDA approval marked satralizumab as the third therapy for NMOSD, following eculizumab (Soliris) and inebilizumab (Uplizna).

Satralizumab is administered in subcutaneous injections every 4 weeks after a run-in period of injections at weeks 0, 2, and 4.

Longest trial to date

To evaluate the drug’s long-term efficacy in the treatment of AQP4 IgG–positive NMOSD, patients from the two previous phase 3 trials were entered into the single arm, open-label SAkuraMoon study and continued treatment with the satralizumab 120 mg injections once monthly, with or without immunosuppressive therapy.

The study included 106 patients (mean age 44 years, 89.6% women), all of whom had received one or more doses of satralizumab by the data cutoff of January 2022.

With a median duration of satralizumab exposure of 5 years, the overall adjusted annualized rate of investigator protocol-defined relapse (ARR) was 0.09.

Longitudinal assessment further showed no significant increase in the relapse rate over the course of the study, with an ARR rate of 0.16 at year 1; 0.10 at year 2; 0.05 at year 3; and 0.07 at year 4.

At week 240 (4.6 years), 72% of satralizumab-treated patients were relapse-free, with 91% free from severe relapse.

In addition, 85% of patients had no sustained disability, as measured by Expanded Disability Status Scale (EDSS) worsening, over the study period.  

Asked if there are potential subgroups of patients who may be more susceptible to the worsening of disability, Dr. Traboulsee responded “not that we can tell as of yet.”

“I would like to explore this further as this is a relatively new observation, and, as far as I know, this is the longest follow-up for an NMO treatment trial cohort,” he said.

Favorable safety profile

The safety profile was also favorable, consistent with results in the earlier trials. The longer exposure to satralizumab was not associated with a higher risk of severe (grade 3 or higher) laboratory changes versus the double-blind studies. “Rates of adverse events and serious adverse events with overall satralizumab treatment were comparable with the double-blind periods,” said Dr. Traboulsee.

“With satralizumab combined with immunosuppressant therapy, we’re not seeing an increased rate of infections, because it’s not an immune suppressant – it doesn’t suppress lymphocytes or lower immunoglobulin,” he added.

While the use of combination therapy has been an important clinical concern, Dr. Traboulsee noted that “this does not appear to be the case with satralizumab when combined with daily prednisone or daily azathioprine.”

“There is no increased risk of infections, compared with placebo, and it interestingly appears lower than patients on prednisone or azathioprine alone,” he said.

While the median follow-up was 5 years, some in the clinical trial population have been on treatment for up to 7.9 years.

“Based on the current safety and efficacy data, they could stay on this therapy indefinitely, in my opinion,” Dr. Traboulsee said.

In addition to its long-term safety and efficacy, satralizumab “is easy for patients to take and does not require access to an infusion center. It’s easy for physicians to monitor safety, especially since no additional vaccinations or precautions are required beyond what is done in routine care.”

“What I conclude from that clinically is that this is a highly effective and safe therapy by itself or in combination with another agent,” Dr. Traboulsee said.

He noted that the lack of a bump in infections is “really encouraging and very important with a chronic disease that affects elderly patients. So far, so good,” he added.

‘A good first-line therapy’

Commenting on the study, Shailee Shah, MD, an assistant professor in the neuroimmunology division at Vanderbilt University Medical Center, Nashville, Tenn., agreed that the findings bode well for satralizumab’s long-term benefits.

“These are promising results and suggest that satralizumab is very effective in the long term, and even when patients relapse, those relapses are less severe than they would likely be if the patient were off therapy,” she said.

She noted that, while the ability to self-administer injections with satralizumab is convenient, preferences vary.

“This is patient dependent,” Dr. Shah said. “For some patients an injectable medication is ideal but for others an infusion medication [such as eculizumab] is preferred.”

Overall, however, Dr. Shah described satralizumab as “a good first-line therapy for patients with NMOSD in addition to eculizumab/ravulizumab and inebilizumab.”

“It is reasonable to consider this medication in isolation or with concomitant immunosuppressive therapy,” she said.

Dr. Traboulsee’s disclosures include relationships with Novartis, Roche, Sanofi (Genzyme), Ingo Kleiter, Alexion, Almirall, Bayer, Biogen, Celgene, Genentech, Hexal, Horizon, Merck, and Sanofi. Dr. Shah reports that she has served on advisory boards for Horizon, Alexion, and Genentech.

DENVER – The use of the monoclonal antibody satralizumab (Enspryng) for the long-term treatment of anti–aquaporin-4 (AQP4) antibody–positive neuromyelitis optica spectrum disorder (NMOSD) provides sustained freedom from relapse with no new safety concerns over 5 years, new research shows.  

“In long-term observations, we are seeing a nice, sustained suppression of relapses early, as well as late, in treatment,” said study investigator Anthony Traboulsee, MD, University of British Columbia, Vancouver, in presenting the findings at the annual meeting of the Consortium of Multiple Sclerosis Centers.

“It remains very tolerable with no participants discontinuing because of side effects,” he said. “And importantly, [there are] no signs of a delayed risk of infections for both monotherapy and combination therapy.”

Satralizumab, a monoclonal recycling antibody, targets the interleukin (IL)–6 receptor, which is elevated in the serum and cerebrospinal fluid of patients in NMOSD.

The drug was approved by the Food and Drug Administration in 2020 for the treatment of AQP4 antibody–positive NMOSD after favorable results from two key trials: SAkuraSky and SAkuraStar.

The FDA approval marked satralizumab as the third therapy for NMOSD, following eculizumab (Soliris) and inebilizumab (Uplizna).

Satralizumab is administered in subcutaneous injections every 4 weeks after a run-in period of injections at weeks 0, 2, and 4.

Longest trial to date

To evaluate the drug’s long-term efficacy in the treatment of AQP4 IgG–positive NMOSD, patients from the two previous phase 3 trials were entered into the single arm, open-label SAkuraMoon study and continued treatment with the satralizumab 120 mg injections once monthly, with or without immunosuppressive therapy.

The study included 106 patients (mean age 44 years, 89.6% women), all of whom had received one or more doses of satralizumab by the data cutoff of January 2022.

With a median duration of satralizumab exposure of 5 years, the overall adjusted annualized rate of investigator protocol-defined relapse (ARR) was 0.09.

Longitudinal assessment further showed no significant increase in the relapse rate over the course of the study, with an ARR rate of 0.16 at year 1; 0.10 at year 2; 0.05 at year 3; and 0.07 at year 4.

At week 240 (4.6 years), 72% of satralizumab-treated patients were relapse-free, with 91% free from severe relapse.

In addition, 85% of patients had no sustained disability, as measured by Expanded Disability Status Scale (EDSS) worsening, over the study period.  

Asked if there are potential subgroups of patients who may be more susceptible to the worsening of disability, Dr. Traboulsee responded “not that we can tell as of yet.”

“I would like to explore this further as this is a relatively new observation, and, as far as I know, this is the longest follow-up for an NMO treatment trial cohort,” he said.

Favorable safety profile

The safety profile was also favorable, consistent with results in the earlier trials. The longer exposure to satralizumab was not associated with a higher risk of severe (grade 3 or higher) laboratory changes versus the double-blind studies. “Rates of adverse events and serious adverse events with overall satralizumab treatment were comparable with the double-blind periods,” said Dr. Traboulsee.

“With satralizumab combined with immunosuppressant therapy, we’re not seeing an increased rate of infections, because it’s not an immune suppressant – it doesn’t suppress lymphocytes or lower immunoglobulin,” he added.

While the use of combination therapy has been an important clinical concern, Dr. Traboulsee noted that “this does not appear to be the case with satralizumab when combined with daily prednisone or daily azathioprine.”

“There is no increased risk of infections, compared with placebo, and it interestingly appears lower than patients on prednisone or azathioprine alone,” he said.

While the median follow-up was 5 years, some in the clinical trial population have been on treatment for up to 7.9 years.

“Based on the current safety and efficacy data, they could stay on this therapy indefinitely, in my opinion,” Dr. Traboulsee said.

In addition to its long-term safety and efficacy, satralizumab “is easy for patients to take and does not require access to an infusion center. It’s easy for physicians to monitor safety, especially since no additional vaccinations or precautions are required beyond what is done in routine care.”

“What I conclude from that clinically is that this is a highly effective and safe therapy by itself or in combination with another agent,” Dr. Traboulsee said.

He noted that the lack of a bump in infections is “really encouraging and very important with a chronic disease that affects elderly patients. So far, so good,” he added.

‘A good first-line therapy’

Commenting on the study, Shailee Shah, MD, an assistant professor in the neuroimmunology division at Vanderbilt University Medical Center, Nashville, Tenn., agreed that the findings bode well for satralizumab’s long-term benefits.

“These are promising results and suggest that satralizumab is very effective in the long term, and even when patients relapse, those relapses are less severe than they would likely be if the patient were off therapy,” she said.

She noted that, while the ability to self-administer injections with satralizumab is convenient, preferences vary.

“This is patient dependent,” Dr. Shah said. “For some patients an injectable medication is ideal but for others an infusion medication [such as eculizumab] is preferred.”

Overall, however, Dr. Shah described satralizumab as “a good first-line therapy for patients with NMOSD in addition to eculizumab/ravulizumab and inebilizumab.”

“It is reasonable to consider this medication in isolation or with concomitant immunosuppressive therapy,” she said.

Dr. Traboulsee’s disclosures include relationships with Novartis, Roche, Sanofi (Genzyme), Ingo Kleiter, Alexion, Almirall, Bayer, Biogen, Celgene, Genentech, Hexal, Horizon, Merck, and Sanofi. Dr. Shah reports that she has served on advisory boards for Horizon, Alexion, and Genentech.

Linda Bluestein remembers all the doctors who missed, ignored, or incompletely diagnosed her chronic illness.

There was the orthopedic surgeon who noted her hyperextended elbows but failed to check any of her other joints. The gastroenterologist who insisted on performing multiple scoping procedures but wouldn’t discuss how to manage her symptoms. The other surgeon who, after performing arthroscopy on her injured knee, yelled at her: “There is nothing wrong with your knee! You’re fine!” in a room full of people.

And then there was the rheumatologist who said: “Oh, you want something to be wrong with you?”

“No,” she replied, “I want an explanation. I want to keep working. I just want to know why these things keep happening to me.”

The medical frustration she experienced was especially difficult because, like her health care providers, Linda Bluestein has an MD after her name. She is a board-certified anesthesiologist and integrative medicine physician.

Living with a chronic illness is a challenge for any patient. But physicians who are diagnosed with chronic conditions face a unique set of personal and professional issues.

Along with the physically demanding schedule of medical practice, they must cope with what many call a “culture of invincibility” within medicine. Doctors are not supposed to get sick. In fact, the unwritten rule is presenteeism – to function without adequate food or sleep and to never prioritize their own self-care over their dedication to their patients.

Whether their conditions are visible, such as muscular dystrophy and multiple sclerosis, or invisible, such as fibromyalgia and mental illnesses – and now, long COVID – these doctors often meet significant stigma. They fight the assumption that they are less capable than their colleagues.

But they also experience an invaluable benefit: They gain firsthand knowledge of the patient experience, a profound understanding which, they say, enhances how they care for their own patients.
 

What it takes to become a doctor when you have a chronic condition

In short, it’s not easy.

Data from the 2018 National Health Interview Survey show that more than half of U.S. adults had at least one of several chronic conditions, including rheumatoid arthritis, asthma, diabetes, hypertension, and kidney problems. Nearly a third of respondents had more than one condition. But fewer than 5% of medical students and 3% of practicing physicians report having a chronic illness or disability, according to studies from 2019 and 2021.

While that could mean that fewer people with chronic illness enter medicine, cases also exist in which aspiring physicians with conditions were dissuaded from pursuing a career in medicine at all.

Amy Stenehjem, MD, a physical medicine and rehabilitation physician, is one of the exceptions. Diagnosed with several autoimmune-related conditions as a teenager and young adult, Dr. Stenehjem was determined to become a doctor. In her 20s, her health was relatively stable, and she was able to manage medical school and residency. Her training institutions agreed to provide some accommodations that helped her succeed.

“They let me build some flexibility into the training,” Dr. Stenehjem said. “In medical school, when I knew I wasn’t going to be able to do a particular specialty as a career, they let me work with an attending doctor that did not require a lot of on-call time during that particular rotation.”

Dr. Stenehjem specialized in chronic neck and back disorders, fibromyalgia, chronic fatigue syndrome (myalgic encephalomyelitis), and autoimmune-related diseases. She practiced for more than a decade. But in 2011, her condition spiraled. She couldn’t walk a few steps or even sit upright without experiencing dizziness and shortness of breath. She had debilitating fatigue and episodes of fever, rash, headaches, and joint pain.

It would take 7 years and more than 20 doctors to determine Dr. Stenehjem’s multiple diagnoses. In addition to her autoimmune diseases, she was diagnosed with postural orthostatic tachycardia syndrome, autoinflammatory periodic fever syndrome, Lyme disease, and reactivated Epstein-Barr infection.

While she suspects that her providers gave her more “leeway” because she was a physician, many did not show a deep understanding of the severity of her symptoms and the impact those symptoms had.

“When I was practicing, I really didn’t fully understand the impact chronic illness had on my patients,” Dr. Stenehjem said. “Things like chronic dizziness, headaches, fatigue, pain, or brain fog can be really hard to understand unless you’ve experienced these symptoms. When I got sick, I finally realized, ‘Oh my goodness, when a patient says they’re dealing with fatigue, this is not your normal, I’m-super-tired-from-being-on-call fatigue. This is I-can’t-get-out-of-bed fatigue.’ That’s what people with chronic illness often deal with on a daily basis.”
 

Treating the individual

Dr. Stenehjem was aware that her chronic illness would affect her medical career. For Jason Baker, MD, an endocrinologist at Weill Cornell Medicine, New York, it came as a shock. Dr. Baker was a third-year medical student when he experienced increased urination and rapid weight loss. It was only when friends pressed him to visit student health that a blood test revealed type 1 diabetes. Dr. Baker suddenly found himself lying in a hospital bed.

He remembers an attending physician who simply handed him a textbook on diabetic ketoacidosis (DKA) and a resident who informed him that he had kidney damage, which turned out to be untrue. Neither discussed the psychological issues from a frightening diagnosis that would require lifelong, daily management.

“There certainly could have been a bit more empathy from some of the people I dealt with early on,” he said.

Although his training gave him a stark picture of worst-case scenarios, Dr. Baker found that knowledge motivating. “I’d already seen patients come in who had diabetes complications,” Dr. Baker says. “I vowed to never ever get those complications. It was a good balance of fear and motivation.”

Dr. Baker had not planned to specialize in endocrinology, but he quickly realized that his personal diagnosis could help others. Now he often shares his experience with his patients who have diabetes, which he says makes them more comfortable discussing their own problems.

His approach, Dr. Baker explained, is to treat everyone as an individual. Trying to neatly classify patients with chronic illness is a common mistake he notices among physicians.

“There’s a lot of misunderstanding about type 1 versus type 2 [diabetes],” Dr. Baker said, “and trying to categorize people when sometimes people can’t be categorized. That’s really with any chronic condition; there’s no one size fits all.”

Managing his health is still a time-consuming task. At work, he needs breaks to eat, check his blood sugar, or take insulin. “During the workday seeing patients, I have to also remember that I’m a patient,” Dr. Baker said. “I have to be okay with prioritizing my own health. Otherwise I can’t help anybody.”
 

‘I am not the doctor for you’

Chronic diseases such as diabetes or hypertension are familiar to most doctors, and with good management, patients can usually function normally. When chronic conditions become disabling, however, attitudes in the medical field can change.

According to data from the Centers for Disease Control and Prevention and from studies, people with disabilities experience significant disparities and barriers to care. Some of this can be linked to social determinants of health. People with disabilities are more likely to be poor and to rely on Medicare and Medicaid for insurance coverage. But lack of training, unwillingness to provide accommodations, ignorance of legal requirements, and inaccurate assumptions among physicians also play a role.

These are themes that Lisa Iezzoni, MD, a professor of medicine at Harvard Medical School, Boston, has heard from hundreds of patients with disabilities during the more than 25 years that she has conducted research.

In late 2019, Dr. Iezzoni and coinvestigators fielded a national survey of 714 practicing physicians. Only 40.7% reported they were “very confident” that they could provide the same quality of care to patients with disabilities as they do for other patients. And only 56.5% “strongly agreed” that they welcomed these patients into their practices.

The survey was conducted through a series of small focus groups that Dr. Iezzoni held with physicians in 2018. These yielded views that were startling, and in some cases, overtly discriminatory:

• Doctors complained about the “burden” of caring for a patient with a disability.
• They lacked the time or equipment, such as accessible exam tables or weight scales.
• They admitted to inventing excuses for why appointments were not available or routine diagnostic tests were not performed.
• They described being fearful of lawsuits under the Americans with Disabilities Act.

The overall message was summed up in one doctor’s statement: “I am not the doctor for you.”

“Doctors are people too,” Dr. Iezzoni pointed out. “And so they reflect the same prejudices and stigmatized attitudes of the rest of the population. It might be implicit, so they might not be aware of it. [But] it might be explicit.”

Ableism in the medical field is all too familiar to Dr. Iezzoni. She was diagnosed with multiple sclerosis at age 26 during her first year at Harvard Medical School in the early 1980s. Despite symptom flare-ups, Dr. Iezzoni was able to graduate with her class, but many instructors and administrators had little interest in accommodating her physical limitations. In fact, several physicians discouraged her from continuing to train.

Unable to take call, run up flights of stairs, or stand for hours at a time, Dr. Iezzoni remembers being told by a senior surgeon that she shouldn’t become a doctor since she lacked the “most important quality,” which was “24/7 availability.” A hospital CEO informed her: “There are too many doctors in the country right now for us to worry about training a handicapped physician. If that means that some people get left by the wayside, so be it.”

Ultimately, Harvard Medical School declined to write Dr. Iezzoni a letter of recommendation for an internship. She would never practice medicine. “My career was just truncated from the start,” Dr. Iezzoni said. “It never happened because of discrimination.”

She later learned the legal term for her treatment: constructive dismissal.

“The medical school didn’t outright say, ‘Go away. We’re not allowing you to graduate.’ ” Dr. Iezzoni explained. “But they made my life so difficult that I did so voluntarily.”

Dr. Iezzoni graduated in 1984, before the passage of the ADA in 1990, and she refers to her experience as a “ghost from the past,” a historical reminder of how the legal landscape has changed – even though the tendency toward bias may not have.
 

The fight for inclusion

Zainub Dhanani, a fifth-year medical student at Stanford (Calif.) University, won’t forget an interview at one of the other schools to which she applied. The interviewer asked how she expected to be in a hospital all day if she had a chronic illness.

“Does it really make sense?” he wanted to know.

The question shocked her in the moment, but now she sees this type of bias as linked to the inequalities that many marginalized groups face in health care and beyond. That’s also why she believes physician-patients are crucial to improve the quality of care for people with chronic illness and other groups that face discrimination.

Who else, she wonders, could provide that “reaffirming” experience for patients or have that “unique edge” other than a provider who has navigated the same world?

Ms. Dhanani is the executive director and founder of Medical Students With Disability and Chronic Illness, an organization dedicated to empowering these students through advocacy, education, accessibility, and community. The group now has 19 chapters at medical schools across the country.

Ms. Dhanani said she has received excellent accommodations from Stanford for her own condition (which she prefers not to disclose), but all medical schools are not as responsive to students with various physical needs. Her organization offers support and resources to inform these future physicians about their options and rights.

“Disability justice is also racial justice,” Ms. Dhanani stressed. “It’s also environmental justice. It’s also gender and sexuality-based justice. Those compounded layers of biases lead to worse and worse levels of care. As a patient, it’s terrifying. And as a future physician, it’s tragic to know that this is something so pervasive and yet so under-addressed in medicine.”
 

Soldiering on

Unfortunately, for some physicians with chronic illness, there are no practical accommodations that could save their careers in clinical practice.

Dr. Stenehjem now works part-time as a health consultant, helping those with chronic illnesses navigate their health care systems.

Dr. Bluestein offers a similar coaching service to patients with Ehlers-Danlos syndrome (EDS) and other connective tissue and hypermobility disorders. Because of her own EDS, she can no longer practice as an anesthesiologist but instead opened an integrative pain management practice for patients with complex pain conditions..

She believes the idea that doctors are “invincible” needs to change. She recalls the time her former group practice told her in no uncertain terms to “never call in sick.”

The stories she hears from her current clients are similar to her own. She can empathize, knowing firsthand the physical and psychological damage these attitudes can cause.

“When I was at my worst physically, I was also at my worst psychologically,” said Dr. Bluestein. “We tend to think of them as separate, but they go hand in hand. If we can validate people’s experiences rather than disregard them, it has a positive forward cycle, as opposed to the reverse, which is what usually happens.”

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

Linda Bluestein remembers all the doctors who missed, ignored, or incompletely diagnosed her chronic illness.

There was the orthopedic surgeon who noted her hyperextended elbows but failed to check any of her other joints. The gastroenterologist who insisted on performing multiple scoping procedures but wouldn’t discuss how to manage her symptoms. The other surgeon who, after performing arthroscopy on her injured knee, yelled at her: “There is nothing wrong with your knee! You’re fine!” in a room full of people.

And then there was the rheumatologist who said: “Oh, you want something to be wrong with you?”

“No,” she replied, “I want an explanation. I want to keep working. I just want to know why these things keep happening to me.”

The medical frustration she experienced was especially difficult because, like her health care providers, Linda Bluestein has an MD after her name. She is a board-certified anesthesiologist and integrative medicine physician.

Living with a chronic illness is a challenge for any patient. But physicians who are diagnosed with chronic conditions face a unique set of personal and professional issues.

Along with the physically demanding schedule of medical practice, they must cope with what many call a “culture of invincibility” within medicine. Doctors are not supposed to get sick. In fact, the unwritten rule is presenteeism – to function without adequate food or sleep and to never prioritize their own self-care over their dedication to their patients.

Whether their conditions are visible, such as muscular dystrophy and multiple sclerosis, or invisible, such as fibromyalgia and mental illnesses – and now, long COVID – these doctors often meet significant stigma. They fight the assumption that they are less capable than their colleagues.

But they also experience an invaluable benefit: They gain firsthand knowledge of the patient experience, a profound understanding which, they say, enhances how they care for their own patients.
 

What it takes to become a doctor when you have a chronic condition

In short, it’s not easy.

Data from the 2018 National Health Interview Survey show that more than half of U.S. adults had at least one of several chronic conditions, including rheumatoid arthritis, asthma, diabetes, hypertension, and kidney problems. Nearly a third of respondents had more than one condition. But fewer than 5% of medical students and 3% of practicing physicians report having a chronic illness or disability, according to studies from 2019 and 2021.

While that could mean that fewer people with chronic illness enter medicine, cases also exist in which aspiring physicians with conditions were dissuaded from pursuing a career in medicine at all.

Amy Stenehjem, MD, a physical medicine and rehabilitation physician, is one of the exceptions. Diagnosed with several autoimmune-related conditions as a teenager and young adult, Dr. Stenehjem was determined to become a doctor. In her 20s, her health was relatively stable, and she was able to manage medical school and residency. Her training institutions agreed to provide some accommodations that helped her succeed.

“They let me build some flexibility into the training,” Dr. Stenehjem said. “In medical school, when I knew I wasn’t going to be able to do a particular specialty as a career, they let me work with an attending doctor that did not require a lot of on-call time during that particular rotation.”

Dr. Stenehjem specialized in chronic neck and back disorders, fibromyalgia, chronic fatigue syndrome (myalgic encephalomyelitis), and autoimmune-related diseases. She practiced for more than a decade. But in 2011, her condition spiraled. She couldn’t walk a few steps or even sit upright without experiencing dizziness and shortness of breath. She had debilitating fatigue and episodes of fever, rash, headaches, and joint pain.

It would take 7 years and more than 20 doctors to determine Dr. Stenehjem’s multiple diagnoses. In addition to her autoimmune diseases, she was diagnosed with postural orthostatic tachycardia syndrome, autoinflammatory periodic fever syndrome, Lyme disease, and reactivated Epstein-Barr infection.

While she suspects that her providers gave her more “leeway” because she was a physician, many did not show a deep understanding of the severity of her symptoms and the impact those symptoms had.

“When I was practicing, I really didn’t fully understand the impact chronic illness had on my patients,” Dr. Stenehjem said. “Things like chronic dizziness, headaches, fatigue, pain, or brain fog can be really hard to understand unless you’ve experienced these symptoms. When I got sick, I finally realized, ‘Oh my goodness, when a patient says they’re dealing with fatigue, this is not your normal, I’m-super-tired-from-being-on-call fatigue. This is I-can’t-get-out-of-bed fatigue.’ That’s what people with chronic illness often deal with on a daily basis.”
 

Treating the individual

Dr. Stenehjem was aware that her chronic illness would affect her medical career. For Jason Baker, MD, an endocrinologist at Weill Cornell Medicine, New York, it came as a shock. Dr. Baker was a third-year medical student when he experienced increased urination and rapid weight loss. It was only when friends pressed him to visit student health that a blood test revealed type 1 diabetes. Dr. Baker suddenly found himself lying in a hospital bed.

He remembers an attending physician who simply handed him a textbook on diabetic ketoacidosis (DKA) and a resident who informed him that he had kidney damage, which turned out to be untrue. Neither discussed the psychological issues from a frightening diagnosis that would require lifelong, daily management.

“There certainly could have been a bit more empathy from some of the people I dealt with early on,” he said.

Although his training gave him a stark picture of worst-case scenarios, Dr. Baker found that knowledge motivating. “I’d already seen patients come in who had diabetes complications,” Dr. Baker says. “I vowed to never ever get those complications. It was a good balance of fear and motivation.”

Dr. Baker had not planned to specialize in endocrinology, but he quickly realized that his personal diagnosis could help others. Now he often shares his experience with his patients who have diabetes, which he says makes them more comfortable discussing their own problems.

His approach, Dr. Baker explained, is to treat everyone as an individual. Trying to neatly classify patients with chronic illness is a common mistake he notices among physicians.

“There’s a lot of misunderstanding about type 1 versus type 2 [diabetes],” Dr. Baker said, “and trying to categorize people when sometimes people can’t be categorized. That’s really with any chronic condition; there’s no one size fits all.”

Managing his health is still a time-consuming task. At work, he needs breaks to eat, check his blood sugar, or take insulin. “During the workday seeing patients, I have to also remember that I’m a patient,” Dr. Baker said. “I have to be okay with prioritizing my own health. Otherwise I can’t help anybody.”
 

‘I am not the doctor for you’

Chronic diseases such as diabetes or hypertension are familiar to most doctors, and with good management, patients can usually function normally. When chronic conditions become disabling, however, attitudes in the medical field can change.

According to data from the Centers for Disease Control and Prevention and from studies, people with disabilities experience significant disparities and barriers to care. Some of this can be linked to social determinants of health. People with disabilities are more likely to be poor and to rely on Medicare and Medicaid for insurance coverage. But lack of training, unwillingness to provide accommodations, ignorance of legal requirements, and inaccurate assumptions among physicians also play a role.

These are themes that Lisa Iezzoni, MD, a professor of medicine at Harvard Medical School, Boston, has heard from hundreds of patients with disabilities during the more than 25 years that she has conducted research.

In late 2019, Dr. Iezzoni and coinvestigators fielded a national survey of 714 practicing physicians. Only 40.7% reported they were “very confident” that they could provide the same quality of care to patients with disabilities as they do for other patients. And only 56.5% “strongly agreed” that they welcomed these patients into their practices.

The survey was conducted through a series of small focus groups that Dr. Iezzoni held with physicians in 2018. These yielded views that were startling, and in some cases, overtly discriminatory:

• Doctors complained about the “burden” of caring for a patient with a disability.
• They lacked the time or equipment, such as accessible exam tables or weight scales.
• They admitted to inventing excuses for why appointments were not available or routine diagnostic tests were not performed.
• They described being fearful of lawsuits under the Americans with Disabilities Act.

The overall message was summed up in one doctor’s statement: “I am not the doctor for you.”

“Doctors are people too,” Dr. Iezzoni pointed out. “And so they reflect the same prejudices and stigmatized attitudes of the rest of the population. It might be implicit, so they might not be aware of it. [But] it might be explicit.”

Ableism in the medical field is all too familiar to Dr. Iezzoni. She was diagnosed with multiple sclerosis at age 26 during her first year at Harvard Medical School in the early 1980s. Despite symptom flare-ups, Dr. Iezzoni was able to graduate with her class, but many instructors and administrators had little interest in accommodating her physical limitations. In fact, several physicians discouraged her from continuing to train.

Unable to take call, run up flights of stairs, or stand for hours at a time, Dr. Iezzoni remembers being told by a senior surgeon that she shouldn’t become a doctor since she lacked the “most important quality,” which was “24/7 availability.” A hospital CEO informed her: “There are too many doctors in the country right now for us to worry about training a handicapped physician. If that means that some people get left by the wayside, so be it.”

Ultimately, Harvard Medical School declined to write Dr. Iezzoni a letter of recommendation for an internship. She would never practice medicine. “My career was just truncated from the start,” Dr. Iezzoni said. “It never happened because of discrimination.”

She later learned the legal term for her treatment: constructive dismissal.

“The medical school didn’t outright say, ‘Go away. We’re not allowing you to graduate.’ ” Dr. Iezzoni explained. “But they made my life so difficult that I did so voluntarily.”

Dr. Iezzoni graduated in 1984, before the passage of the ADA in 1990, and she refers to her experience as a “ghost from the past,” a historical reminder of how the legal landscape has changed – even though the tendency toward bias may not have.
 

The fight for inclusion

Zainub Dhanani, a fifth-year medical student at Stanford (Calif.) University, won’t forget an interview at one of the other schools to which she applied. The interviewer asked how she expected to be in a hospital all day if she had a chronic illness.

“Does it really make sense?” he wanted to know.

The question shocked her in the moment, but now she sees this type of bias as linked to the inequalities that many marginalized groups face in health care and beyond. That’s also why she believes physician-patients are crucial to improve the quality of care for people with chronic illness and other groups that face discrimination.

Who else, she wonders, could provide that “reaffirming” experience for patients or have that “unique edge” other than a provider who has navigated the same world?

Ms. Dhanani is the executive director and founder of Medical Students With Disability and Chronic Illness, an organization dedicated to empowering these students through advocacy, education, accessibility, and community. The group now has 19 chapters at medical schools across the country.

Ms. Dhanani said she has received excellent accommodations from Stanford for her own condition (which she prefers not to disclose), but all medical schools are not as responsive to students with various physical needs. Her organization offers support and resources to inform these future physicians about their options and rights.

“Disability justice is also racial justice,” Ms. Dhanani stressed. “It’s also environmental justice. It’s also gender and sexuality-based justice. Those compounded layers of biases lead to worse and worse levels of care. As a patient, it’s terrifying. And as a future physician, it’s tragic to know that this is something so pervasive and yet so under-addressed in medicine.”
 

Soldiering on

Unfortunately, for some physicians with chronic illness, there are no practical accommodations that could save their careers in clinical practice.

Dr. Stenehjem now works part-time as a health consultant, helping those with chronic illnesses navigate their health care systems.

Dr. Bluestein offers a similar coaching service to patients with Ehlers-Danlos syndrome (EDS) and other connective tissue and hypermobility disorders. Because of her own EDS, she can no longer practice as an anesthesiologist but instead opened an integrative pain management practice for patients with complex pain conditions..

She believes the idea that doctors are “invincible” needs to change. She recalls the time her former group practice told her in no uncertain terms to “never call in sick.”

The stories she hears from her current clients are similar to her own. She can empathize, knowing firsthand the physical and psychological damage these attitudes can cause.

“When I was at my worst physically, I was also at my worst psychologically,” said Dr. Bluestein. “We tend to think of them as separate, but they go hand in hand. If we can validate people’s experiences rather than disregard them, it has a positive forward cycle, as opposed to the reverse, which is what usually happens.”

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

Linda Bluestein remembers all the doctors who missed, ignored, or incompletely diagnosed her chronic illness.

There was the orthopedic surgeon who noted her hyperextended elbows but failed to check any of her other joints. The gastroenterologist who insisted on performing multiple scoping procedures but wouldn’t discuss how to manage her symptoms. The other surgeon who, after performing arthroscopy on her injured knee, yelled at her: “There is nothing wrong with your knee! You’re fine!” in a room full of people.

And then there was the rheumatologist who said: “Oh, you want something to be wrong with you?”

“No,” she replied, “I want an explanation. I want to keep working. I just want to know why these things keep happening to me.”

The medical frustration she experienced was especially difficult because, like her health care providers, Linda Bluestein has an MD after her name. She is a board-certified anesthesiologist and integrative medicine physician.

Living with a chronic illness is a challenge for any patient. But physicians who are diagnosed with chronic conditions face a unique set of personal and professional issues.

Along with the physically demanding schedule of medical practice, they must cope with what many call a “culture of invincibility” within medicine. Doctors are not supposed to get sick. In fact, the unwritten rule is presenteeism – to function without adequate food or sleep and to never prioritize their own self-care over their dedication to their patients.

Whether their conditions are visible, such as muscular dystrophy and multiple sclerosis, or invisible, such as fibromyalgia and mental illnesses – and now, long COVID – these doctors often meet significant stigma. They fight the assumption that they are less capable than their colleagues.

But they also experience an invaluable benefit: They gain firsthand knowledge of the patient experience, a profound understanding which, they say, enhances how they care for their own patients.
 

What it takes to become a doctor when you have a chronic condition

In short, it’s not easy.

Data from the 2018 National Health Interview Survey show that more than half of U.S. adults had at least one of several chronic conditions, including rheumatoid arthritis, asthma, diabetes, hypertension, and kidney problems. Nearly a third of respondents had more than one condition. But fewer than 5% of medical students and 3% of practicing physicians report having a chronic illness or disability, according to studies from 2019 and 2021.

While that could mean that fewer people with chronic illness enter medicine, cases also exist in which aspiring physicians with conditions were dissuaded from pursuing a career in medicine at all.

Amy Stenehjem, MD, a physical medicine and rehabilitation physician, is one of the exceptions. Diagnosed with several autoimmune-related conditions as a teenager and young adult, Dr. Stenehjem was determined to become a doctor. In her 20s, her health was relatively stable, and she was able to manage medical school and residency. Her training institutions agreed to provide some accommodations that helped her succeed.

“They let me build some flexibility into the training,” Dr. Stenehjem said. “In medical school, when I knew I wasn’t going to be able to do a particular specialty as a career, they let me work with an attending doctor that did not require a lot of on-call time during that particular rotation.”

Dr. Stenehjem specialized in chronic neck and back disorders, fibromyalgia, chronic fatigue syndrome (myalgic encephalomyelitis), and autoimmune-related diseases. She practiced for more than a decade. But in 2011, her condition spiraled. She couldn’t walk a few steps or even sit upright without experiencing dizziness and shortness of breath. She had debilitating fatigue and episodes of fever, rash, headaches, and joint pain.

It would take 7 years and more than 20 doctors to determine Dr. Stenehjem’s multiple diagnoses. In addition to her autoimmune diseases, she was diagnosed with postural orthostatic tachycardia syndrome, autoinflammatory periodic fever syndrome, Lyme disease, and reactivated Epstein-Barr infection.

While she suspects that her providers gave her more “leeway” because she was a physician, many did not show a deep understanding of the severity of her symptoms and the impact those symptoms had.

“When I was practicing, I really didn’t fully understand the impact chronic illness had on my patients,” Dr. Stenehjem said. “Things like chronic dizziness, headaches, fatigue, pain, or brain fog can be really hard to understand unless you’ve experienced these symptoms. When I got sick, I finally realized, ‘Oh my goodness, when a patient says they’re dealing with fatigue, this is not your normal, I’m-super-tired-from-being-on-call fatigue. This is I-can’t-get-out-of-bed fatigue.’ That’s what people with chronic illness often deal with on a daily basis.”
 

Treating the individual

Dr. Stenehjem was aware that her chronic illness would affect her medical career. For Jason Baker, MD, an endocrinologist at Weill Cornell Medicine, New York, it came as a shock. Dr. Baker was a third-year medical student when he experienced increased urination and rapid weight loss. It was only when friends pressed him to visit student health that a blood test revealed type 1 diabetes. Dr. Baker suddenly found himself lying in a hospital bed.

He remembers an attending physician who simply handed him a textbook on diabetic ketoacidosis (DKA) and a resident who informed him that he had kidney damage, which turned out to be untrue. Neither discussed the psychological issues from a frightening diagnosis that would require lifelong, daily management.

“There certainly could have been a bit more empathy from some of the people I dealt with early on,” he said.

Although his training gave him a stark picture of worst-case scenarios, Dr. Baker found that knowledge motivating. “I’d already seen patients come in who had diabetes complications,” Dr. Baker says. “I vowed to never ever get those complications. It was a good balance of fear and motivation.”

Dr. Baker had not planned to specialize in endocrinology, but he quickly realized that his personal diagnosis could help others. Now he often shares his experience with his patients who have diabetes, which he says makes them more comfortable discussing their own problems.

His approach, Dr. Baker explained, is to treat everyone as an individual. Trying to neatly classify patients with chronic illness is a common mistake he notices among physicians.

“There’s a lot of misunderstanding about type 1 versus type 2 [diabetes],” Dr. Baker said, “and trying to categorize people when sometimes people can’t be categorized. That’s really with any chronic condition; there’s no one size fits all.”

Managing his health is still a time-consuming task. At work, he needs breaks to eat, check his blood sugar, or take insulin. “During the workday seeing patients, I have to also remember that I’m a patient,” Dr. Baker said. “I have to be okay with prioritizing my own health. Otherwise I can’t help anybody.”
 

‘I am not the doctor for you’

Chronic diseases such as diabetes or hypertension are familiar to most doctors, and with good management, patients can usually function normally. When chronic conditions become disabling, however, attitudes in the medical field can change.

According to data from the Centers for Disease Control and Prevention and from studies, people with disabilities experience significant disparities and barriers to care. Some of this can be linked to social determinants of health. People with disabilities are more likely to be poor and to rely on Medicare and Medicaid for insurance coverage. But lack of training, unwillingness to provide accommodations, ignorance of legal requirements, and inaccurate assumptions among physicians also play a role.

These are themes that Lisa Iezzoni, MD, a professor of medicine at Harvard Medical School, Boston, has heard from hundreds of patients with disabilities during the more than 25 years that she has conducted research.

In late 2019, Dr. Iezzoni and coinvestigators fielded a national survey of 714 practicing physicians. Only 40.7% reported they were “very confident” that they could provide the same quality of care to patients with disabilities as they do for other patients. And only 56.5% “strongly agreed” that they welcomed these patients into their practices.

The survey was conducted through a series of small focus groups that Dr. Iezzoni held with physicians in 2018. These yielded views that were startling, and in some cases, overtly discriminatory:

• Doctors complained about the “burden” of caring for a patient with a disability.
• They lacked the time or equipment, such as accessible exam tables or weight scales.
• They admitted to inventing excuses for why appointments were not available or routine diagnostic tests were not performed.
• They described being fearful of lawsuits under the Americans with Disabilities Act.

The overall message was summed up in one doctor’s statement: “I am not the doctor for you.”

“Doctors are people too,” Dr. Iezzoni pointed out. “And so they reflect the same prejudices and stigmatized attitudes of the rest of the population. It might be implicit, so they might not be aware of it. [But] it might be explicit.”

Ableism in the medical field is all too familiar to Dr. Iezzoni. She was diagnosed with multiple sclerosis at age 26 during her first year at Harvard Medical School in the early 1980s. Despite symptom flare-ups, Dr. Iezzoni was able to graduate with her class, but many instructors and administrators had little interest in accommodating her physical limitations. In fact, several physicians discouraged her from continuing to train.

Unable to take call, run up flights of stairs, or stand for hours at a time, Dr. Iezzoni remembers being told by a senior surgeon that she shouldn’t become a doctor since she lacked the “most important quality,” which was “24/7 availability.” A hospital CEO informed her: “There are too many doctors in the country right now for us to worry about training a handicapped physician. If that means that some people get left by the wayside, so be it.”

Ultimately, Harvard Medical School declined to write Dr. Iezzoni a letter of recommendation for an internship. She would never practice medicine. “My career was just truncated from the start,” Dr. Iezzoni said. “It never happened because of discrimination.”

She later learned the legal term for her treatment: constructive dismissal.

“The medical school didn’t outright say, ‘Go away. We’re not allowing you to graduate.’ ” Dr. Iezzoni explained. “But they made my life so difficult that I did so voluntarily.”

Dr. Iezzoni graduated in 1984, before the passage of the ADA in 1990, and she refers to her experience as a “ghost from the past,” a historical reminder of how the legal landscape has changed – even though the tendency toward bias may not have.
 

The fight for inclusion

Zainub Dhanani, a fifth-year medical student at Stanford (Calif.) University, won’t forget an interview at one of the other schools to which she applied. The interviewer asked how she expected to be in a hospital all day if she had a chronic illness.

“Does it really make sense?” he wanted to know.

The question shocked her in the moment, but now she sees this type of bias as linked to the inequalities that many marginalized groups face in health care and beyond. That’s also why she believes physician-patients are crucial to improve the quality of care for people with chronic illness and other groups that face discrimination.

Who else, she wonders, could provide that “reaffirming” experience for patients or have that “unique edge” other than a provider who has navigated the same world?

Ms. Dhanani is the executive director and founder of Medical Students With Disability and Chronic Illness, an organization dedicated to empowering these students through advocacy, education, accessibility, and community. The group now has 19 chapters at medical schools across the country.

Ms. Dhanani said she has received excellent accommodations from Stanford for her own condition (which she prefers not to disclose), but all medical schools are not as responsive to students with various physical needs. Her organization offers support and resources to inform these future physicians about their options and rights.

“Disability justice is also racial justice,” Ms. Dhanani stressed. “It’s also environmental justice. It’s also gender and sexuality-based justice. Those compounded layers of biases lead to worse and worse levels of care. As a patient, it’s terrifying. And as a future physician, it’s tragic to know that this is something so pervasive and yet so under-addressed in medicine.”
 

Soldiering on

Unfortunately, for some physicians with chronic illness, there are no practical accommodations that could save their careers in clinical practice.

Dr. Stenehjem now works part-time as a health consultant, helping those with chronic illnesses navigate their health care systems.

Dr. Bluestein offers a similar coaching service to patients with Ehlers-Danlos syndrome (EDS) and other connective tissue and hypermobility disorders. Because of her own EDS, she can no longer practice as an anesthesiologist but instead opened an integrative pain management practice for patients with complex pain conditions..

She believes the idea that doctors are “invincible” needs to change. She recalls the time her former group practice told her in no uncertain terms to “never call in sick.”

The stories she hears from her current clients are similar to her own. She can empathize, knowing firsthand the physical and psychological damage these attitudes can cause.

“When I was at my worst physically, I was also at my worst psychologically,” said Dr. Bluestein. “We tend to think of them as separate, but they go hand in hand. If we can validate people’s experiences rather than disregard them, it has a positive forward cycle, as opposed to the reverse, which is what usually happens.”

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

SAN FRANCISCO – A pilot project that trains lay community members to screen for and address common psychiatric disorders, addiction issues, and suicide risk promises to bring timely, evidence-based health services to those with little to no access to effective care.

The current shortage of mental health clinicians is driven by increased demand from a population more willing to seek psychiatric help and clinicians leaving the workforce. Both factors were exacerbated by the COVID-19 pandemic.

“It would be costly to address the problem through additional specialist training, and doing so would take decades to see any changes,” project director Milton L. Wainberg, MD, professor of clinical psychiatry at Columbia University, New York, and New York State Psychiatric Institute, said in an interview.

Pauline Anderson

Unfeasible model

“The historic paradigm of ongoing long-term care is costly and not a feasible public mental health model. There is no evidence that it works, and there is increasing demand for brief interventions,” said Dr. Wainberg.

The new initiative – called ENGAGE – has its origins in parts of Africa, where nurses had to be trained during the AIDS crisis as there weren’t enough doctors to roll out antiretroviral therapy.

In the United States, the program trains and certifies community workers who are passionate about their community. “Members of the community want to learn how to help their neighbors,” said Dr. Wainberg. “When we give them the opportunity to learn skills that can actually change community members’ symptoms, they are excited.”

The training involves a didactic component and an experiential component, in which trainees work with at least three cases under supervision to demonstrate competency. Technical assistance and other supports, such as refresher training, are offered for a year after training.

Workers ask three initial questions to quickly determine if a person has a mental health disorder. Asking 10 additional questions tells the worker if the person has a common mental health disorder like depression, anxiety, or posttraumatic stress disorder (PTSD), a substance use disorder involving alcohol or drugs, suicide risk, or a severe disorder requiring referral to a mental health specialist.

Those who do not require a referral are offered an intervention personalized to their need.

The training costs $5,000 per person. “We calculated for New York State it would cost only $18 million to train everybody we need,” said Dr. Wainberg.
 

Cost effective

He stressed the program, which is funded by the New York Office of Mental Health, is cost effective. Just like patients don’t need to see a plastic surgeon to have a small mole removed, they don’t always need to see a psychiatrist for run-of-the-mill mild depression, he said.

To date, 20 workers have been trained and have started to meet with clients in clinics in four New York City neighborhoods/boroughs (Harlem, Brooklyn, the Bronx, and Washington Heights). Additional clinics in West Harlem and Staten Island are expected to begin training soon.

Dr. Wainberg has been inundated with interest in the initiative. “Over the last 3 months I have been having 15 meetings a day” with parties interested in getting more information or wanting to know how to start such a program.

He plans to examine the program’s effectiveness in a number of areas, including patient symptoms, timeliness of services, access, sustainability, and cost. And he aims to expand the project beyond New York.

Mental health specialists shouldn’t worry about becoming irrelevant with the addition of community workers, as the demand is so great, said Dr. Wainberg. “There will always be a need for the kind of care mental health specialists are trained for. This initiative aims to expand capacity for those with less severe symptoms, who might not need an intensive level of intervention.”
 

Unique program

In a comment, Jonathan E. Alpert, MD, PhD, chair of the department of psychiatry and behavioral sciences, Montefiore Medical Center and Albert Einstein College of Medicine, New York, said the project is “unique” and an “excellent” idea.

Courtesy Dr. Jonathan E. Alpert

“This is one of the first pilots that I know of in this country to train lay-members of the community to screen for mental illness and substance use disorders and even to provide evidence-based treatment for people who may have more mild symptoms and might not yet need to see a professional but otherwise would not have access to care.”

Dr. Alpert noted the current challenges of accessing care for a mental health or substance abuse disorder. “Many clinics have wait lists of 3-6 months.”

Another issue is the “stigma and lack of trust” among minority communities when it comes to formal mental health treatments. “Having lay-members who know the community, who look like the community, who understand the community, and who are available for screening and treatment is exceptionally important.”

Although this pilot program will have to be assessed for effectiveness, “the concept behind it is very important,” said Dr. Alpert. “If you’re relying on MDs and PhDs to provide mental health services, there just aren’t enough of us to go around.”

Dr. Wainberg and Dr. Alpert report no relevant financial relationships.

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

SAN FRANCISCO – A pilot project that trains lay community members to screen for and address common psychiatric disorders, addiction issues, and suicide risk promises to bring timely, evidence-based health services to those with little to no access to effective care.

The current shortage of mental health clinicians is driven by increased demand from a population more willing to seek psychiatric help and clinicians leaving the workforce. Both factors were exacerbated by the COVID-19 pandemic.

“It would be costly to address the problem through additional specialist training, and doing so would take decades to see any changes,” project director Milton L. Wainberg, MD, professor of clinical psychiatry at Columbia University, New York, and New York State Psychiatric Institute, said in an interview.

Pauline Anderson

Unfeasible model

“The historic paradigm of ongoing long-term care is costly and not a feasible public mental health model. There is no evidence that it works, and there is increasing demand for brief interventions,” said Dr. Wainberg.

The new initiative – called ENGAGE – has its origins in parts of Africa, where nurses had to be trained during the AIDS crisis as there weren’t enough doctors to roll out antiretroviral therapy.

In the United States, the program trains and certifies community workers who are passionate about their community. “Members of the community want to learn how to help their neighbors,” said Dr. Wainberg. “When we give them the opportunity to learn skills that can actually change community members’ symptoms, they are excited.”

The training involves a didactic component and an experiential component, in which trainees work with at least three cases under supervision to demonstrate competency. Technical assistance and other supports, such as refresher training, are offered for a year after training.

Workers ask three initial questions to quickly determine if a person has a mental health disorder. Asking 10 additional questions tells the worker if the person has a common mental health disorder like depression, anxiety, or posttraumatic stress disorder (PTSD), a substance use disorder involving alcohol or drugs, suicide risk, or a severe disorder requiring referral to a mental health specialist.

Those who do not require a referral are offered an intervention personalized to their need.

The training costs $5,000 per person. “We calculated for New York State it would cost only $18 million to train everybody we need,” said Dr. Wainberg.
 

Cost effective

He stressed the program, which is funded by the New York Office of Mental Health, is cost effective. Just like patients don’t need to see a plastic surgeon to have a small mole removed, they don’t always need to see a psychiatrist for run-of-the-mill mild depression, he said.

To date, 20 workers have been trained and have started to meet with clients in clinics in four New York City neighborhoods/boroughs (Harlem, Brooklyn, the Bronx, and Washington Heights). Additional clinics in West Harlem and Staten Island are expected to begin training soon.

Dr. Wainberg has been inundated with interest in the initiative. “Over the last 3 months I have been having 15 meetings a day” with parties interested in getting more information or wanting to know how to start such a program.

He plans to examine the program’s effectiveness in a number of areas, including patient symptoms, timeliness of services, access, sustainability, and cost. And he aims to expand the project beyond New York.

Mental health specialists shouldn’t worry about becoming irrelevant with the addition of community workers, as the demand is so great, said Dr. Wainberg. “There will always be a need for the kind of care mental health specialists are trained for. This initiative aims to expand capacity for those with less severe symptoms, who might not need an intensive level of intervention.”
 

Unique program

In a comment, Jonathan E. Alpert, MD, PhD, chair of the department of psychiatry and behavioral sciences, Montefiore Medical Center and Albert Einstein College of Medicine, New York, said the project is “unique” and an “excellent” idea.

Courtesy Dr. Jonathan E. Alpert

“This is one of the first pilots that I know of in this country to train lay-members of the community to screen for mental illness and substance use disorders and even to provide evidence-based treatment for people who may have more mild symptoms and might not yet need to see a professional but otherwise would not have access to care.”

Dr. Alpert noted the current challenges of accessing care for a mental health or substance abuse disorder. “Many clinics have wait lists of 3-6 months.”

Another issue is the “stigma and lack of trust” among minority communities when it comes to formal mental health treatments. “Having lay-members who know the community, who look like the community, who understand the community, and who are available for screening and treatment is exceptionally important.”

Although this pilot program will have to be assessed for effectiveness, “the concept behind it is very important,” said Dr. Alpert. “If you’re relying on MDs and PhDs to provide mental health services, there just aren’t enough of us to go around.”

Dr. Wainberg and Dr. Alpert report no relevant financial relationships.

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

SAN FRANCISCO – A pilot project that trains lay community members to screen for and address common psychiatric disorders, addiction issues, and suicide risk promises to bring timely, evidence-based health services to those with little to no access to effective care.

The current shortage of mental health clinicians is driven by increased demand from a population more willing to seek psychiatric help and clinicians leaving the workforce. Both factors were exacerbated by the COVID-19 pandemic.

“It would be costly to address the problem through additional specialist training, and doing so would take decades to see any changes,” project director Milton L. Wainberg, MD, professor of clinical psychiatry at Columbia University, New York, and New York State Psychiatric Institute, said in an interview.

Pauline Anderson

Unfeasible model

“The historic paradigm of ongoing long-term care is costly and not a feasible public mental health model. There is no evidence that it works, and there is increasing demand for brief interventions,” said Dr. Wainberg.

The new initiative – called ENGAGE – has its origins in parts of Africa, where nurses had to be trained during the AIDS crisis as there weren’t enough doctors to roll out antiretroviral therapy.

In the United States, the program trains and certifies community workers who are passionate about their community. “Members of the community want to learn how to help their neighbors,” said Dr. Wainberg. “When we give them the opportunity to learn skills that can actually change community members’ symptoms, they are excited.”

The training involves a didactic component and an experiential component, in which trainees work with at least three cases under supervision to demonstrate competency. Technical assistance and other supports, such as refresher training, are offered for a year after training.

Workers ask three initial questions to quickly determine if a person has a mental health disorder. Asking 10 additional questions tells the worker if the person has a common mental health disorder like depression, anxiety, or posttraumatic stress disorder (PTSD), a substance use disorder involving alcohol or drugs, suicide risk, or a severe disorder requiring referral to a mental health specialist.

Those who do not require a referral are offered an intervention personalized to their need.

The training costs $5,000 per person. “We calculated for New York State it would cost only $18 million to train everybody we need,” said Dr. Wainberg.
 

Cost effective

He stressed the program, which is funded by the New York Office of Mental Health, is cost effective. Just like patients don’t need to see a plastic surgeon to have a small mole removed, they don’t always need to see a psychiatrist for run-of-the-mill mild depression, he said.

To date, 20 workers have been trained and have started to meet with clients in clinics in four New York City neighborhoods/boroughs (Harlem, Brooklyn, the Bronx, and Washington Heights). Additional clinics in West Harlem and Staten Island are expected to begin training soon.

Dr. Wainberg has been inundated with interest in the initiative. “Over the last 3 months I have been having 15 meetings a day” with parties interested in getting more information or wanting to know how to start such a program.

He plans to examine the program’s effectiveness in a number of areas, including patient symptoms, timeliness of services, access, sustainability, and cost. And he aims to expand the project beyond New York.

Mental health specialists shouldn’t worry about becoming irrelevant with the addition of community workers, as the demand is so great, said Dr. Wainberg. “There will always be a need for the kind of care mental health specialists are trained for. This initiative aims to expand capacity for those with less severe symptoms, who might not need an intensive level of intervention.”
 

Unique program

In a comment, Jonathan E. Alpert, MD, PhD, chair of the department of psychiatry and behavioral sciences, Montefiore Medical Center and Albert Einstein College of Medicine, New York, said the project is “unique” and an “excellent” idea.

Courtesy Dr. Jonathan E. Alpert

“This is one of the first pilots that I know of in this country to train lay-members of the community to screen for mental illness and substance use disorders and even to provide evidence-based treatment for people who may have more mild symptoms and might not yet need to see a professional but otherwise would not have access to care.”

Dr. Alpert noted the current challenges of accessing care for a mental health or substance abuse disorder. “Many clinics have wait lists of 3-6 months.”

Another issue is the “stigma and lack of trust” among minority communities when it comes to formal mental health treatments. “Having lay-members who know the community, who look like the community, who understand the community, and who are available for screening and treatment is exceptionally important.”

Although this pilot program will have to be assessed for effectiveness, “the concept behind it is very important,” said Dr. Alpert. “If you’re relying on MDs and PhDs to provide mental health services, there just aren’t enough of us to go around.”

Dr. Wainberg and Dr. Alpert report no relevant financial relationships.

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

SAN FRANCISCO – Securing an appointment with a mental health professional in the United States continues to be a challenge, with wait times for an in-person appointment north of 2 months and over 1 month for a telepsychiatry visit, a new study shows.

“Long wait times for mental health care were a huge problem even before the pandemic but especially during the pandemic,” study investigator Erin McDaid, BS, Virginia Tech Carilion School of Medicine, Roanoke, said in an interview.

Virginia Tech Carilion School of Medicine

Few psychiatrists taking new patients

To find out just how big an issue wait times are, the researchers examined general psychiatry outpatient availability during the COVID-19 pandemic in five states – New York, California, North Dakota, Virginia, and Wyoming.

Altogether, 948 psychiatrists were sampled. Simulated adult patients made 864 calls seeking an initial psychiatric evaluation for general mental health care. The calls were made late in the pandemic, between May and July 2022.

Only 18.5% of psychiatrists were available to see new patients. The median wait time was 67 days for in-person appointments and 43 days for telepsychiatry appointments (P < .001).

More than half of psychiatrists who were contacted said they were not taking new patients, which was the most common reason given for unavailability.

“This is happening at the worst time, when we are seeing mental health issues spike,” Ms. McDaid said.
 

Telepsychiatry helpful but no panacea

The fact that wait times were a bit shorter for telepsychiatry is encouraging, Ms. McDaid said.

Telepsychiatry is a potential solution to provider shortages and geographic barriers, but it does not resolve the concerning shortage of psychiatric outpatient care, she noted.

“Psychiatrists adapted very well to telepsychiatry during COVID,” Saul Levin, MD, MPA, chief executive officer and medical director of the APA, noted during a preconference briefing with reporters.

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

SAN FRANCISCO – Securing an appointment with a mental health professional in the United States continues to be a challenge, with wait times for an in-person appointment north of 2 months and over 1 month for a telepsychiatry visit, a new study shows.

“Long wait times for mental health care were a huge problem even before the pandemic but especially during the pandemic,” study investigator Erin McDaid, BS, Virginia Tech Carilion School of Medicine, Roanoke, said in an interview.

Virginia Tech Carilion School of Medicine

Few psychiatrists taking new patients

To find out just how big an issue wait times are, the researchers examined general psychiatry outpatient availability during the COVID-19 pandemic in five states – New York, California, North Dakota, Virginia, and Wyoming.

Altogether, 948 psychiatrists were sampled. Simulated adult patients made 864 calls seeking an initial psychiatric evaluation for general mental health care. The calls were made late in the pandemic, between May and July 2022.

Only 18.5% of psychiatrists were available to see new patients. The median wait time was 67 days for in-person appointments and 43 days for telepsychiatry appointments (P < .001).

More than half of psychiatrists who were contacted said they were not taking new patients, which was the most common reason given for unavailability.

“This is happening at the worst time, when we are seeing mental health issues spike,” Ms. McDaid said.
 

Telepsychiatry helpful but no panacea

The fact that wait times were a bit shorter for telepsychiatry is encouraging, Ms. McDaid said.

Telepsychiatry is a potential solution to provider shortages and geographic barriers, but it does not resolve the concerning shortage of psychiatric outpatient care, she noted.

“Psychiatrists adapted very well to telepsychiatry during COVID,” Saul Levin, MD, MPA, chief executive officer and medical director of the APA, noted during a preconference briefing with reporters.

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

SAN FRANCISCO – Securing an appointment with a mental health professional in the United States continues to be a challenge, with wait times for an in-person appointment north of 2 months and over 1 month for a telepsychiatry visit, a new study shows.

“Long wait times for mental health care were a huge problem even before the pandemic but especially during the pandemic,” study investigator Erin McDaid, BS, Virginia Tech Carilion School of Medicine, Roanoke, said in an interview.

Virginia Tech Carilion School of Medicine

Few psychiatrists taking new patients

To find out just how big an issue wait times are, the researchers examined general psychiatry outpatient availability during the COVID-19 pandemic in five states – New York, California, North Dakota, Virginia, and Wyoming.

Altogether, 948 psychiatrists were sampled. Simulated adult patients made 864 calls seeking an initial psychiatric evaluation for general mental health care. The calls were made late in the pandemic, between May and July 2022.

Only 18.5% of psychiatrists were available to see new patients. The median wait time was 67 days for in-person appointments and 43 days for telepsychiatry appointments (P < .001).

More than half of psychiatrists who were contacted said they were not taking new patients, which was the most common reason given for unavailability.

“This is happening at the worst time, when we are seeing mental health issues spike,” Ms. McDaid said.
 

Telepsychiatry helpful but no panacea

The fact that wait times were a bit shorter for telepsychiatry is encouraging, Ms. McDaid said.

Telepsychiatry is a potential solution to provider shortages and geographic barriers, but it does not resolve the concerning shortage of psychiatric outpatient care, she noted.

“Psychiatrists adapted very well to telepsychiatry during COVID,” Saul Levin, MD, MPA, chief executive officer and medical director of the APA, noted during a preconference briefing with reporters.

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

WASHINGTON – A substantial proportion of adults with moderate to severe atopic dermatitis (AD) treated with oral abrocitinib 100 mg or 200 mg once daily for up to 96 weeks had sustained improvements in skin clearance, itch, and quality of life in a post hoc analysis of the JADE EXTEND phase 3 trial, Andrew F. Alexis, MD, MPH, reported in a late-breaker abstract session at the annual Revolutionizing Atopic Dermatitis conference.

The analysis stratified patients by age – 18-50 and over 50 years – and found that the sustained improvement with the JAK-1 selective inhibitor as monotherapy was seen regardless of age. “In practice, patients who are older tend to have had AD for a longer period of time and tend to be more difficult to treat so it’s reassuring to see that even in the over-50 age group, they show substantial responses, even with more stringent endpoints,” said Dr. Alexis, professor of clinical dermatology at Weill Cornell Medical College, New York.