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The way I see it
I’ve worn glasses since I was 8, when a routine school vision test showed I was nearsighted. Except for an ill-fated 3-month attempt at contact lenses when I was 16, glasses have been just another part of my daily routine.
The last time I got new ones was in 2018, and my vision always seemed “off” after that. I took them back to the store a few times and was told I’d adjust to them and that things would be fine, So after a few weeks of doggedly wearing them I adjusted to them. I still felt like something was slightly off, but then I was busy, and then came the pandemic, and then my eye doctor retired and I had to find a new one ... so going to get my glasses prescription rechecked kept getting pushed back.
As so many of us do over time, I’ve gotten used to taking my glasses off to read things up close, like a book, or to do a detailed jigsaw puzzle. This has gotten worse over time, and so finally I made an appointment with a new eye doctor.
I handed him my previous prescription. He did a reading off the lenses, looked at the prescription again, gave me a perplexed look, and started the usual eye exam, asking me to read different lines as he switched lenses around. This went on for 10-15 minutes.
“The right lens wasn’t made correctly,” he told me. “You’ve been working off your left eye for the last 5 years.”
He returned my glasses and I put them on. He covered my left eye and showed me how, without realizing it, I was tilting my head back to bring distant items into focus on the right – the opposite of what I should be doing – and with both eyes would adjust my position to use the left eye.
The next morning, while working at my desk, I realized for the first time that I had my head turned slightly right to bring the left eye a tad closer to the screen. In a job where we’re trained to look for such minutiae in patients I’d missed it on myself. A friend even suggested I submit my story as a case report – “An unusual cause of a head-tilt in a middle-aged male” – to a journal.
It’s an interesting commentary on how adaptable the brain is at handling vision changes. It was several hundred million years ago when the brain figured out how to invert images that were seen upside down, and it continues to find ways to compensate for field cuts, cranial nerve palsies, and other lesions. Including flawed spectacles.
When my new eyeglasses arrive, my brain will have to readjust. This time, though, I’m curious and will try to pay better attention to my own reactions. If I can.
so we don’t notice an issue.
Amazing stuff if you think about it.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
I’ve worn glasses since I was 8, when a routine school vision test showed I was nearsighted. Except for an ill-fated 3-month attempt at contact lenses when I was 16, glasses have been just another part of my daily routine.
The last time I got new ones was in 2018, and my vision always seemed “off” after that. I took them back to the store a few times and was told I’d adjust to them and that things would be fine, So after a few weeks of doggedly wearing them I adjusted to them. I still felt like something was slightly off, but then I was busy, and then came the pandemic, and then my eye doctor retired and I had to find a new one ... so going to get my glasses prescription rechecked kept getting pushed back.
As so many of us do over time, I’ve gotten used to taking my glasses off to read things up close, like a book, or to do a detailed jigsaw puzzle. This has gotten worse over time, and so finally I made an appointment with a new eye doctor.
I handed him my previous prescription. He did a reading off the lenses, looked at the prescription again, gave me a perplexed look, and started the usual eye exam, asking me to read different lines as he switched lenses around. This went on for 10-15 minutes.
“The right lens wasn’t made correctly,” he told me. “You’ve been working off your left eye for the last 5 years.”
He returned my glasses and I put them on. He covered my left eye and showed me how, without realizing it, I was tilting my head back to bring distant items into focus on the right – the opposite of what I should be doing – and with both eyes would adjust my position to use the left eye.
The next morning, while working at my desk, I realized for the first time that I had my head turned slightly right to bring the left eye a tad closer to the screen. In a job where we’re trained to look for such minutiae in patients I’d missed it on myself. A friend even suggested I submit my story as a case report – “An unusual cause of a head-tilt in a middle-aged male” – to a journal.
It’s an interesting commentary on how adaptable the brain is at handling vision changes. It was several hundred million years ago when the brain figured out how to invert images that were seen upside down, and it continues to find ways to compensate for field cuts, cranial nerve palsies, and other lesions. Including flawed spectacles.
When my new eyeglasses arrive, my brain will have to readjust. This time, though, I’m curious and will try to pay better attention to my own reactions. If I can.
so we don’t notice an issue.
Amazing stuff if you think about it.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
I’ve worn glasses since I was 8, when a routine school vision test showed I was nearsighted. Except for an ill-fated 3-month attempt at contact lenses when I was 16, glasses have been just another part of my daily routine.
The last time I got new ones was in 2018, and my vision always seemed “off” after that. I took them back to the store a few times and was told I’d adjust to them and that things would be fine, So after a few weeks of doggedly wearing them I adjusted to them. I still felt like something was slightly off, but then I was busy, and then came the pandemic, and then my eye doctor retired and I had to find a new one ... so going to get my glasses prescription rechecked kept getting pushed back.
As so many of us do over time, I’ve gotten used to taking my glasses off to read things up close, like a book, or to do a detailed jigsaw puzzle. This has gotten worse over time, and so finally I made an appointment with a new eye doctor.
I handed him my previous prescription. He did a reading off the lenses, looked at the prescription again, gave me a perplexed look, and started the usual eye exam, asking me to read different lines as he switched lenses around. This went on for 10-15 minutes.
“The right lens wasn’t made correctly,” he told me. “You’ve been working off your left eye for the last 5 years.”
He returned my glasses and I put them on. He covered my left eye and showed me how, without realizing it, I was tilting my head back to bring distant items into focus on the right – the opposite of what I should be doing – and with both eyes would adjust my position to use the left eye.
The next morning, while working at my desk, I realized for the first time that I had my head turned slightly right to bring the left eye a tad closer to the screen. In a job where we’re trained to look for such minutiae in patients I’d missed it on myself. A friend even suggested I submit my story as a case report – “An unusual cause of a head-tilt in a middle-aged male” – to a journal.
It’s an interesting commentary on how adaptable the brain is at handling vision changes. It was several hundred million years ago when the brain figured out how to invert images that were seen upside down, and it continues to find ways to compensate for field cuts, cranial nerve palsies, and other lesions. Including flawed spectacles.
When my new eyeglasses arrive, my brain will have to readjust. This time, though, I’m curious and will try to pay better attention to my own reactions. If I can.
so we don’t notice an issue.
Amazing stuff if you think about it.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
Telemedicine usage still high among rheumatologists as interest wanes in other specialties
There was an explosion in the use of telemedicine during the COVID-19 pandemic, but usage has stabilized and varies between specialties. However, telemedicine use is still somewhat high among rheumatologists, according to speakers at the 2023 Rheumatology Winter Clinical Symposium.
Speaking in general about the future of rheumatology, Jack Cush, MD, a rheumatologist based in Dallas and executive editor of RheumNow.com, said it is up to rheumatologists to adapt to the changing winds in the specialty.
“The future is going to happen no matter what, so the question is, are you going to go along with it? Are you going to be a part of it? Are you going to be resistant to it?” Dr. Cush asked attendees. “Your recent experience with COVID would tell you maybe what your path is going to be if you’re dying to get back to the way it once was.”
Rheumatologists can expect changes in where they work, how they’re paid, increases in their workload, and new innovations in connecting with patients, he said.
“You’re going to be integrating a new style of medicine, you’re going to be digitally connected,” he explained. “All these networks are going to be working together to make you supposedly better at what you do, or maybe they’re working together to make you obsolete – and I think you better start protecting your space.”
One major area of change, telemedicine, already occurred as a result of the COVID-19 pandemic and will “begin to dominate” over the next decade, Dr. Cush said. An analysis conducted by consulting firm McKinsey & Company found telehealth usage increased 78-fold between February and April 2020 before leveling off at a 38-fold higher rate, compared with prepandemic levels. In the same analysis, rheumatology ranked third in terms of telehealth usage claims behind psychiatry and substance use disorder treatment, Dr. Cush observed, as other specialties have “fallen off quite a bit.”
“The common denominators are chronic care, cognitive care, nonprocedural care, pattern recognition, and monitoring, and this is what you do,” he said. “This is why, in many ways, for you to abandon telemedicine I think is a gigantic mistake.”
Changes to telemedicine
The most immediate change to telemedicine will come when the Biden administration officially ends the COVID-19 public health emergency in May 2023, and temporary telehealth services will be extended for approximately 5 months after the end of the public health emergency. Legislation passed by Congress will ensure some of the flexibilities in telemedicine will be extended until the end of December 2024.
Alvin Wells, MD, PhD, director of the department of rheumatology at Advocate Aurora Health in Franklin, Wisc., said he sees telemedicine as persisting even after the official COVID-19 public health emergency ends. “There’s a lot of push from the American Medical Association, from the American College of Physicians. You’re going to see people – this will not go away because [there’s] also going to be that demand.”
Despite decreased usage since April 2020, telehealth was estimated to be a $60 billion industry in 2022 and will likely increase over the next decade, Dr. Cush noted. “I question [the decline] because I think it still is a major part of your [future in] 2033.”
The number of physicians who have at least three licenses to practice in other U.S. states increased from 50,454 in 2010 to 72,752 in 2020, and that trend will continue, Dr. Wells explained. It is now becoming easier for physicians to become licensed in other states with companies like CompHealth that offer services to simplify obtaining medical licenses with states that participate in the Interstate Medical Licensure Compact.
“It’s a telemedicine easy pass,” Dr. Cush said.
Concerns in telemedicine
Commenting on the presentation, Allan Gibofsky, MD, JD, professor of medicine at Weill Cornell Medicine and codirector of the Clinic for Inflammatory Arthritis and Biologic Therapy at the Hospital for Special Surgery (HSS), both in New York, pointed out that because telemedicine is governed by U.S. states, rather than the federal government, a physician needs to be licensed in the state where the patient is located. While many states relaxed their restrictions during COVID-19, as states began tightening their restrictions later, “many physicians didn’t want to have three licenses,” he said.
“There’s an expense in getting three licenses. There’s an expense in obtaining it and maintaining it, and the reimbursement for the telemedicine visit did not reach that expectation,” Dr. Gibofsky explained. With the exception of the orthopedic surgeons at HSS who practice in New York and a satellite office in Florida, none of the surgeons at his center have obtained more than one license to practice telemedicine in other states.
“Our volume of telemedicine at HSS has remained about the same at 30%, but fewer physicians are doing it because they don’t want to maintain multiple licensures,” he said. “So don’t overlook the role of legal concerns in terms of who’s going to be allowed to do what where. Your talk was great in terms of an exuberance of what’s going to be available, but it’s not going to relieve the physician from the burden of being responsible for their use.”
Eric Ruderman, MD, professor of rheumatology at Northwestern University, Chicago, asked the presenters about the balance between seeing patients for virtual and in-person visits. “The question is what’s the sweet spot? Are there people you’re willing to see virtually forever?” he asked, noting that he has patients scheduling telemedicine visits that he hasn’t seen since before the COVID-19 pandemic.
“That’s not going to work for me. At some point, you have to lay hands on people,” he said.
Dr. Wells said his current practice is 40% virtual, and his staff converts potential no-shows into a telemedicine consultation over the phone. “My no-show rate has gone down to zero. Somebody’s scheduled for a visit, they don’t show up, my [medical assistants] get them on the phone, they put them on hold, tee up the refills. I turn them into a telephone call,” he said. “We don’t accept the no-show at all because we can do a telephone [consultation].”
In Dr. Cush’s practice, he alternates telemedicine visits with in-person visits. “If you come back for two videos in a row, you’re catching hell from me for that,” he said. Responding to how Dr. Wells incorporates telemedicine into his practice, Dr. Cush said many rheumatologists “don’t have the setups to support the care, and that’s why it’s hard to do and that’s why we’re not as great as we could be.”
“This is the way we were trained. We’re used to seeing these patients in the clinic that often. Not every single patient needs to be seen that frequently if they’re stable and doing fine,” Dr. Wells countered.
Dr. Cush and Dr. Wells reported having financial relationships with numerous pharmaceutical companies.
There was an explosion in the use of telemedicine during the COVID-19 pandemic, but usage has stabilized and varies between specialties. However, telemedicine use is still somewhat high among rheumatologists, according to speakers at the 2023 Rheumatology Winter Clinical Symposium.
Speaking in general about the future of rheumatology, Jack Cush, MD, a rheumatologist based in Dallas and executive editor of RheumNow.com, said it is up to rheumatologists to adapt to the changing winds in the specialty.
“The future is going to happen no matter what, so the question is, are you going to go along with it? Are you going to be a part of it? Are you going to be resistant to it?” Dr. Cush asked attendees. “Your recent experience with COVID would tell you maybe what your path is going to be if you’re dying to get back to the way it once was.”
Rheumatologists can expect changes in where they work, how they’re paid, increases in their workload, and new innovations in connecting with patients, he said.
“You’re going to be integrating a new style of medicine, you’re going to be digitally connected,” he explained. “All these networks are going to be working together to make you supposedly better at what you do, or maybe they’re working together to make you obsolete – and I think you better start protecting your space.”
One major area of change, telemedicine, already occurred as a result of the COVID-19 pandemic and will “begin to dominate” over the next decade, Dr. Cush said. An analysis conducted by consulting firm McKinsey & Company found telehealth usage increased 78-fold between February and April 2020 before leveling off at a 38-fold higher rate, compared with prepandemic levels. In the same analysis, rheumatology ranked third in terms of telehealth usage claims behind psychiatry and substance use disorder treatment, Dr. Cush observed, as other specialties have “fallen off quite a bit.”
“The common denominators are chronic care, cognitive care, nonprocedural care, pattern recognition, and monitoring, and this is what you do,” he said. “This is why, in many ways, for you to abandon telemedicine I think is a gigantic mistake.”
Changes to telemedicine
The most immediate change to telemedicine will come when the Biden administration officially ends the COVID-19 public health emergency in May 2023, and temporary telehealth services will be extended for approximately 5 months after the end of the public health emergency. Legislation passed by Congress will ensure some of the flexibilities in telemedicine will be extended until the end of December 2024.
Alvin Wells, MD, PhD, director of the department of rheumatology at Advocate Aurora Health in Franklin, Wisc., said he sees telemedicine as persisting even after the official COVID-19 public health emergency ends. “There’s a lot of push from the American Medical Association, from the American College of Physicians. You’re going to see people – this will not go away because [there’s] also going to be that demand.”
Despite decreased usage since April 2020, telehealth was estimated to be a $60 billion industry in 2022 and will likely increase over the next decade, Dr. Cush noted. “I question [the decline] because I think it still is a major part of your [future in] 2033.”
The number of physicians who have at least three licenses to practice in other U.S. states increased from 50,454 in 2010 to 72,752 in 2020, and that trend will continue, Dr. Wells explained. It is now becoming easier for physicians to become licensed in other states with companies like CompHealth that offer services to simplify obtaining medical licenses with states that participate in the Interstate Medical Licensure Compact.
“It’s a telemedicine easy pass,” Dr. Cush said.
Concerns in telemedicine
Commenting on the presentation, Allan Gibofsky, MD, JD, professor of medicine at Weill Cornell Medicine and codirector of the Clinic for Inflammatory Arthritis and Biologic Therapy at the Hospital for Special Surgery (HSS), both in New York, pointed out that because telemedicine is governed by U.S. states, rather than the federal government, a physician needs to be licensed in the state where the patient is located. While many states relaxed their restrictions during COVID-19, as states began tightening their restrictions later, “many physicians didn’t want to have three licenses,” he said.
“There’s an expense in getting three licenses. There’s an expense in obtaining it and maintaining it, and the reimbursement for the telemedicine visit did not reach that expectation,” Dr. Gibofsky explained. With the exception of the orthopedic surgeons at HSS who practice in New York and a satellite office in Florida, none of the surgeons at his center have obtained more than one license to practice telemedicine in other states.
“Our volume of telemedicine at HSS has remained about the same at 30%, but fewer physicians are doing it because they don’t want to maintain multiple licensures,” he said. “So don’t overlook the role of legal concerns in terms of who’s going to be allowed to do what where. Your talk was great in terms of an exuberance of what’s going to be available, but it’s not going to relieve the physician from the burden of being responsible for their use.”
Eric Ruderman, MD, professor of rheumatology at Northwestern University, Chicago, asked the presenters about the balance between seeing patients for virtual and in-person visits. “The question is what’s the sweet spot? Are there people you’re willing to see virtually forever?” he asked, noting that he has patients scheduling telemedicine visits that he hasn’t seen since before the COVID-19 pandemic.
“That’s not going to work for me. At some point, you have to lay hands on people,” he said.
Dr. Wells said his current practice is 40% virtual, and his staff converts potential no-shows into a telemedicine consultation over the phone. “My no-show rate has gone down to zero. Somebody’s scheduled for a visit, they don’t show up, my [medical assistants] get them on the phone, they put them on hold, tee up the refills. I turn them into a telephone call,” he said. “We don’t accept the no-show at all because we can do a telephone [consultation].”
In Dr. Cush’s practice, he alternates telemedicine visits with in-person visits. “If you come back for two videos in a row, you’re catching hell from me for that,” he said. Responding to how Dr. Wells incorporates telemedicine into his practice, Dr. Cush said many rheumatologists “don’t have the setups to support the care, and that’s why it’s hard to do and that’s why we’re not as great as we could be.”
“This is the way we were trained. We’re used to seeing these patients in the clinic that often. Not every single patient needs to be seen that frequently if they’re stable and doing fine,” Dr. Wells countered.
Dr. Cush and Dr. Wells reported having financial relationships with numerous pharmaceutical companies.
There was an explosion in the use of telemedicine during the COVID-19 pandemic, but usage has stabilized and varies between specialties. However, telemedicine use is still somewhat high among rheumatologists, according to speakers at the 2023 Rheumatology Winter Clinical Symposium.
Speaking in general about the future of rheumatology, Jack Cush, MD, a rheumatologist based in Dallas and executive editor of RheumNow.com, said it is up to rheumatologists to adapt to the changing winds in the specialty.
“The future is going to happen no matter what, so the question is, are you going to go along with it? Are you going to be a part of it? Are you going to be resistant to it?” Dr. Cush asked attendees. “Your recent experience with COVID would tell you maybe what your path is going to be if you’re dying to get back to the way it once was.”
Rheumatologists can expect changes in where they work, how they’re paid, increases in their workload, and new innovations in connecting with patients, he said.
“You’re going to be integrating a new style of medicine, you’re going to be digitally connected,” he explained. “All these networks are going to be working together to make you supposedly better at what you do, or maybe they’re working together to make you obsolete – and I think you better start protecting your space.”
One major area of change, telemedicine, already occurred as a result of the COVID-19 pandemic and will “begin to dominate” over the next decade, Dr. Cush said. An analysis conducted by consulting firm McKinsey & Company found telehealth usage increased 78-fold between February and April 2020 before leveling off at a 38-fold higher rate, compared with prepandemic levels. In the same analysis, rheumatology ranked third in terms of telehealth usage claims behind psychiatry and substance use disorder treatment, Dr. Cush observed, as other specialties have “fallen off quite a bit.”
“The common denominators are chronic care, cognitive care, nonprocedural care, pattern recognition, and monitoring, and this is what you do,” he said. “This is why, in many ways, for you to abandon telemedicine I think is a gigantic mistake.”
Changes to telemedicine
The most immediate change to telemedicine will come when the Biden administration officially ends the COVID-19 public health emergency in May 2023, and temporary telehealth services will be extended for approximately 5 months after the end of the public health emergency. Legislation passed by Congress will ensure some of the flexibilities in telemedicine will be extended until the end of December 2024.
Alvin Wells, MD, PhD, director of the department of rheumatology at Advocate Aurora Health in Franklin, Wisc., said he sees telemedicine as persisting even after the official COVID-19 public health emergency ends. “There’s a lot of push from the American Medical Association, from the American College of Physicians. You’re going to see people – this will not go away because [there’s] also going to be that demand.”
Despite decreased usage since April 2020, telehealth was estimated to be a $60 billion industry in 2022 and will likely increase over the next decade, Dr. Cush noted. “I question [the decline] because I think it still is a major part of your [future in] 2033.”
The number of physicians who have at least three licenses to practice in other U.S. states increased from 50,454 in 2010 to 72,752 in 2020, and that trend will continue, Dr. Wells explained. It is now becoming easier for physicians to become licensed in other states with companies like CompHealth that offer services to simplify obtaining medical licenses with states that participate in the Interstate Medical Licensure Compact.
“It’s a telemedicine easy pass,” Dr. Cush said.
Concerns in telemedicine
Commenting on the presentation, Allan Gibofsky, MD, JD, professor of medicine at Weill Cornell Medicine and codirector of the Clinic for Inflammatory Arthritis and Biologic Therapy at the Hospital for Special Surgery (HSS), both in New York, pointed out that because telemedicine is governed by U.S. states, rather than the federal government, a physician needs to be licensed in the state where the patient is located. While many states relaxed their restrictions during COVID-19, as states began tightening their restrictions later, “many physicians didn’t want to have three licenses,” he said.
“There’s an expense in getting three licenses. There’s an expense in obtaining it and maintaining it, and the reimbursement for the telemedicine visit did not reach that expectation,” Dr. Gibofsky explained. With the exception of the orthopedic surgeons at HSS who practice in New York and a satellite office in Florida, none of the surgeons at his center have obtained more than one license to practice telemedicine in other states.
“Our volume of telemedicine at HSS has remained about the same at 30%, but fewer physicians are doing it because they don’t want to maintain multiple licensures,” he said. “So don’t overlook the role of legal concerns in terms of who’s going to be allowed to do what where. Your talk was great in terms of an exuberance of what’s going to be available, but it’s not going to relieve the physician from the burden of being responsible for their use.”
Eric Ruderman, MD, professor of rheumatology at Northwestern University, Chicago, asked the presenters about the balance between seeing patients for virtual and in-person visits. “The question is what’s the sweet spot? Are there people you’re willing to see virtually forever?” he asked, noting that he has patients scheduling telemedicine visits that he hasn’t seen since before the COVID-19 pandemic.
“That’s not going to work for me. At some point, you have to lay hands on people,” he said.
Dr. Wells said his current practice is 40% virtual, and his staff converts potential no-shows into a telemedicine consultation over the phone. “My no-show rate has gone down to zero. Somebody’s scheduled for a visit, they don’t show up, my [medical assistants] get them on the phone, they put them on hold, tee up the refills. I turn them into a telephone call,” he said. “We don’t accept the no-show at all because we can do a telephone [consultation].”
In Dr. Cush’s practice, he alternates telemedicine visits with in-person visits. “If you come back for two videos in a row, you’re catching hell from me for that,” he said. Responding to how Dr. Wells incorporates telemedicine into his practice, Dr. Cush said many rheumatologists “don’t have the setups to support the care, and that’s why it’s hard to do and that’s why we’re not as great as we could be.”
“This is the way we were trained. We’re used to seeing these patients in the clinic that often. Not every single patient needs to be seen that frequently if they’re stable and doing fine,” Dr. Wells countered.
Dr. Cush and Dr. Wells reported having financial relationships with numerous pharmaceutical companies.
FROM RWCS 2023
Factors linked to higher risk for death in young cancer survivors
according to new data from the St. Jude Lifetime Cohort.
Survivors with a greater number and severity of modifiable chronic health conditions as well as those living in the most versus least resource-deprived areas had a significantly higher risk of all-cause and health-related late death.
Finding ways to mitigate these factors “will be important to improving health outcomes and developing risk-stratification strategies to optimize care delivery to survivors at varying risk of adverse health events,” the researchers wrote.
The study indicates that treating chronic health conditions alone may not be enough to increase a cancer survivor’s lifespan; improving local environments matters too.
“It is important for clinicians to ask patients about their specific situation,” first author Matthew J. Ehrhardt, MD, department of oncology, St. Jude Children’s Research Hospital, Memphis, said in a news release. “It’s easy to prescribe medications or to tell people to exercise. It takes more time and more thoughtfulness to sit and understand environments in which they are residing.”
“As clinicians, we may have limited ability to modify some of those factors. But we can work closely with the rest of the health care team, such as social workers, for example, to help survivors to identify and access local resources,” Dr. Ehrhardt added.
The study was published online in JAMA Network Open.
A growing population of childhood cancer survivors faces an increased risk for premature death in the years following their diagnosis. However, associations between social determinants of health, modifiable health conditions, and late mortality in childhood cancer survivors remain unclear.
To assess late mortality, the study team analyzed data on 9,440 participants (median age at assessment, 27.5 years; range, 5.3-71.9 years) who lived at least 5 years after being diagnosed with a childhood cancer between 1962 and 2012.
During a median follow-up of about 18 years, childhood cancer survivors had an increased rate of both all-cause and health-related late mortality (standardized mortality rate, 7.6 for both). Among specific health-related causes of death, SMRs were 16.0 for subsequent neoplasms, 9.0 for pulmonary causes, 4.2 for cardiac causes, and 4.3 for other health-related causes.
To evaluate ties between modifiable chronic health conditions, social determinants, and late mortality, the researchers restricted their analysis to 3,407 adult study participants for whom relevant data were available. Modifiable chronic health conditions included dyslipidemia, hypertension, diabetes, underweight or obesity, bone mineral deficiency, and hypothyroidism.
After adjusting for individual factors, including age at diagnosis and treatment, as well as neighborhood-level factors, the researchers observed a significantly increased risk for death among survivors with one or more modifiable chronic health conditions of grade 2 or higher (relative risk, 2.2), two chronic health conditions of grade 2 or higher (RR, 2.6) or three chronic health conditions of grade 2 or higher (RR, 3.6).
These findings suggest that “increased late mortality experienced by childhood cancer survivors in adulthood may not be predetermined by treatment-related risk factors alone,” the researchers said.
In addition, survivors living in the most disadvantaged areas, as measured by the area deprivation index (ADI), had a five- to eightfold increased risk of late death from any cause compared with those living in the least disadvantaged areas, even after adjusting for modifiable chronic health conditions, cancer treatment, demographics, and individual socioeconomic factors.
The findings have important public health implications, Dr. Ehrhardt and colleagues said. The results can, for instance, help identify and stratify cancer survivors at higher lifetime risk for specific chronic conditions and late death.
This risk-stratified approach to care, however, is “relatively static” and does not account for risk factors acquired after cancer diagnosis and treatment, such as social determinants of health.
That is why also focusing on socioeconomic factors is important, and transitional care services following cancer treatment should consider that survivors in disadvantaged neighborhoods may lack supportive resources to address health issues, potentially leading to increased risk for death, the researchers said.
The knowledge that living in a resource-poor neighborhood may raise the risk for late death in childhood cancer survivors “strengthens support for public health policies that will direct resources to such regions and facilitate a multipronged approach to risk mitigation,” the authors concluded.
This study was supported by grants from the National Institutes of Health and the American Lebanese Syrian Associated Charities. The authors reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
according to new data from the St. Jude Lifetime Cohort.
Survivors with a greater number and severity of modifiable chronic health conditions as well as those living in the most versus least resource-deprived areas had a significantly higher risk of all-cause and health-related late death.
Finding ways to mitigate these factors “will be important to improving health outcomes and developing risk-stratification strategies to optimize care delivery to survivors at varying risk of adverse health events,” the researchers wrote.
The study indicates that treating chronic health conditions alone may not be enough to increase a cancer survivor’s lifespan; improving local environments matters too.
“It is important for clinicians to ask patients about their specific situation,” first author Matthew J. Ehrhardt, MD, department of oncology, St. Jude Children’s Research Hospital, Memphis, said in a news release. “It’s easy to prescribe medications or to tell people to exercise. It takes more time and more thoughtfulness to sit and understand environments in which they are residing.”
“As clinicians, we may have limited ability to modify some of those factors. But we can work closely with the rest of the health care team, such as social workers, for example, to help survivors to identify and access local resources,” Dr. Ehrhardt added.
The study was published online in JAMA Network Open.
A growing population of childhood cancer survivors faces an increased risk for premature death in the years following their diagnosis. However, associations between social determinants of health, modifiable health conditions, and late mortality in childhood cancer survivors remain unclear.
To assess late mortality, the study team analyzed data on 9,440 participants (median age at assessment, 27.5 years; range, 5.3-71.9 years) who lived at least 5 years after being diagnosed with a childhood cancer between 1962 and 2012.
During a median follow-up of about 18 years, childhood cancer survivors had an increased rate of both all-cause and health-related late mortality (standardized mortality rate, 7.6 for both). Among specific health-related causes of death, SMRs were 16.0 for subsequent neoplasms, 9.0 for pulmonary causes, 4.2 for cardiac causes, and 4.3 for other health-related causes.
To evaluate ties between modifiable chronic health conditions, social determinants, and late mortality, the researchers restricted their analysis to 3,407 adult study participants for whom relevant data were available. Modifiable chronic health conditions included dyslipidemia, hypertension, diabetes, underweight or obesity, bone mineral deficiency, and hypothyroidism.
After adjusting for individual factors, including age at diagnosis and treatment, as well as neighborhood-level factors, the researchers observed a significantly increased risk for death among survivors with one or more modifiable chronic health conditions of grade 2 or higher (relative risk, 2.2), two chronic health conditions of grade 2 or higher (RR, 2.6) or three chronic health conditions of grade 2 or higher (RR, 3.6).
These findings suggest that “increased late mortality experienced by childhood cancer survivors in adulthood may not be predetermined by treatment-related risk factors alone,” the researchers said.
In addition, survivors living in the most disadvantaged areas, as measured by the area deprivation index (ADI), had a five- to eightfold increased risk of late death from any cause compared with those living in the least disadvantaged areas, even after adjusting for modifiable chronic health conditions, cancer treatment, demographics, and individual socioeconomic factors.
The findings have important public health implications, Dr. Ehrhardt and colleagues said. The results can, for instance, help identify and stratify cancer survivors at higher lifetime risk for specific chronic conditions and late death.
This risk-stratified approach to care, however, is “relatively static” and does not account for risk factors acquired after cancer diagnosis and treatment, such as social determinants of health.
That is why also focusing on socioeconomic factors is important, and transitional care services following cancer treatment should consider that survivors in disadvantaged neighborhoods may lack supportive resources to address health issues, potentially leading to increased risk for death, the researchers said.
The knowledge that living in a resource-poor neighborhood may raise the risk for late death in childhood cancer survivors “strengthens support for public health policies that will direct resources to such regions and facilitate a multipronged approach to risk mitigation,” the authors concluded.
This study was supported by grants from the National Institutes of Health and the American Lebanese Syrian Associated Charities. The authors reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
according to new data from the St. Jude Lifetime Cohort.
Survivors with a greater number and severity of modifiable chronic health conditions as well as those living in the most versus least resource-deprived areas had a significantly higher risk of all-cause and health-related late death.
Finding ways to mitigate these factors “will be important to improving health outcomes and developing risk-stratification strategies to optimize care delivery to survivors at varying risk of adverse health events,” the researchers wrote.
The study indicates that treating chronic health conditions alone may not be enough to increase a cancer survivor’s lifespan; improving local environments matters too.
“It is important for clinicians to ask patients about their specific situation,” first author Matthew J. Ehrhardt, MD, department of oncology, St. Jude Children’s Research Hospital, Memphis, said in a news release. “It’s easy to prescribe medications or to tell people to exercise. It takes more time and more thoughtfulness to sit and understand environments in which they are residing.”
“As clinicians, we may have limited ability to modify some of those factors. But we can work closely with the rest of the health care team, such as social workers, for example, to help survivors to identify and access local resources,” Dr. Ehrhardt added.
The study was published online in JAMA Network Open.
A growing population of childhood cancer survivors faces an increased risk for premature death in the years following their diagnosis. However, associations between social determinants of health, modifiable health conditions, and late mortality in childhood cancer survivors remain unclear.
To assess late mortality, the study team analyzed data on 9,440 participants (median age at assessment, 27.5 years; range, 5.3-71.9 years) who lived at least 5 years after being diagnosed with a childhood cancer between 1962 and 2012.
During a median follow-up of about 18 years, childhood cancer survivors had an increased rate of both all-cause and health-related late mortality (standardized mortality rate, 7.6 for both). Among specific health-related causes of death, SMRs were 16.0 for subsequent neoplasms, 9.0 for pulmonary causes, 4.2 for cardiac causes, and 4.3 for other health-related causes.
To evaluate ties between modifiable chronic health conditions, social determinants, and late mortality, the researchers restricted their analysis to 3,407 adult study participants for whom relevant data were available. Modifiable chronic health conditions included dyslipidemia, hypertension, diabetes, underweight or obesity, bone mineral deficiency, and hypothyroidism.
After adjusting for individual factors, including age at diagnosis and treatment, as well as neighborhood-level factors, the researchers observed a significantly increased risk for death among survivors with one or more modifiable chronic health conditions of grade 2 or higher (relative risk, 2.2), two chronic health conditions of grade 2 or higher (RR, 2.6) or three chronic health conditions of grade 2 or higher (RR, 3.6).
These findings suggest that “increased late mortality experienced by childhood cancer survivors in adulthood may not be predetermined by treatment-related risk factors alone,” the researchers said.
In addition, survivors living in the most disadvantaged areas, as measured by the area deprivation index (ADI), had a five- to eightfold increased risk of late death from any cause compared with those living in the least disadvantaged areas, even after adjusting for modifiable chronic health conditions, cancer treatment, demographics, and individual socioeconomic factors.
The findings have important public health implications, Dr. Ehrhardt and colleagues said. The results can, for instance, help identify and stratify cancer survivors at higher lifetime risk for specific chronic conditions and late death.
This risk-stratified approach to care, however, is “relatively static” and does not account for risk factors acquired after cancer diagnosis and treatment, such as social determinants of health.
That is why also focusing on socioeconomic factors is important, and transitional care services following cancer treatment should consider that survivors in disadvantaged neighborhoods may lack supportive resources to address health issues, potentially leading to increased risk for death, the researchers said.
The knowledge that living in a resource-poor neighborhood may raise the risk for late death in childhood cancer survivors “strengthens support for public health policies that will direct resources to such regions and facilitate a multipronged approach to risk mitigation,” the authors concluded.
This study was supported by grants from the National Institutes of Health and the American Lebanese Syrian Associated Charities. The authors reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
FROM JAMA NETWORK OPEN
‘Infuriating’ prescription denial leaves patient without antiemetics
It was Friday, and oncologist Coral Olazagasti, MD, faced a ticking clock.
The patient – a man with HPV-related oropharyngeal cancer – was experiencing severe side effects from standard chemoradiation with weekly cisplatin. Intense nausea and grade 3 mucositis, in particular, left him struggling to swallow or take in any food or fluids.
He was on 8 mg of ondansetron (Zofran) every 8 hours, as needed, to keep the nausea at bay. The pills along with a feeding tube helped, but his symptoms were so intense, neither was quite enough.
“He still needed to be hospitalized twice for dehydration,” said Dr. Olazagasti, who specializes in head and neck medical cancer at Sylvester Comprehensive Cancer Center in Miami.
But when it came time to renew his ondansetron prescription, his insurance company denied it.
The reasoning: “The company had only approved 30 tablets a month and, for them, it was unjustifiable to approve anything above that amount,” Dr. Olazagasti explained.
After Dr. Olazagasti called the insurance company to resolve the issue, a company representative told her to fill out a prior authorization form.
But it was already after 7:30 p.m. ET on Friday.
At that point, finding the prior authorization documents, filling them out, and submitting them would take more time – and the paperwork couldn’t be filed until Monday.
“My patient was at home with zero tablets left and horrible symptoms. He couldn’t keep anything down,” Dr. Olazagasti said.
On Monday, the oncology team sent the prior authorization request, and her patient received his medication a few days later.
“My patient had to wait about 5 days to get the nausea meds he needed,” she said. In the meantime, he was in pain. “Having a refill of this simple supportive care medication rejected was infuriating.”
When Dr. Olazagasti vented her frustrations on Twitter, several people chimed in, suggesting purchasing the drug at a discount through GoodRx or Cost Plus instead of going through the insurance company.
At Cost Plus, for instance, 30 8-mg pills would cost $6.30, but ordering from the online pharmacy would mean waiting several days for delivery.
Discounts through GoodRx may provide a potentially faster solution in a pinch, but the pharmacy matters. In Miami, 30 8-mg pills would cost $19.99 at Costco with a GoodRx coupon, but $233.56 at CVS and $253.60 at Walgreens.
Although potentially useful, these options may not be the obvious choice for oncologists and patients, especially when a drug has already been approved and covered by the insurer. In this case, the denial was also a surprise, which left Dr. Olazagasti and her patient scrambling right before the weekend.
In addition, companies providing discounted generic drugs may only have a limited number of oncology-related medications. Cost Plus, for instance, now sells more than 1,000 generic prescription drugs at a fraction of what insurance companies charge, but only about 7 are cancer drugs.
On a broader level, Dr. Olazagasti noted, “insurance companies have a responsibility to cover these drugs. If we all get so fed up that we start relying on alternate routes to get patients their treatments, then insurance companies are let off the hook.”
However, using an alternative option like GoodRx or CostPlus could mean bypassing insurance company obstacles in certain cases.
“The hurdles someone may have to go through to get a generic drug approved are very frustrating,” said Stacie B. Dusetzina, PhD, professor of health policy and a professor of cancer research at Vanderbilt University in Nashville, Tenn.
In a weekend emergency situation, if the drug is discounted through GoodRx, “it can be a good backup strategy to send the prescription to the pharmacy” and more generally “worth it for patients to check if they can get a better deal on generic drugs through these companies.”
A version of this article first appeared on Medscape.com.
It was Friday, and oncologist Coral Olazagasti, MD, faced a ticking clock.
The patient – a man with HPV-related oropharyngeal cancer – was experiencing severe side effects from standard chemoradiation with weekly cisplatin. Intense nausea and grade 3 mucositis, in particular, left him struggling to swallow or take in any food or fluids.
He was on 8 mg of ondansetron (Zofran) every 8 hours, as needed, to keep the nausea at bay. The pills along with a feeding tube helped, but his symptoms were so intense, neither was quite enough.
“He still needed to be hospitalized twice for dehydration,” said Dr. Olazagasti, who specializes in head and neck medical cancer at Sylvester Comprehensive Cancer Center in Miami.
But when it came time to renew his ondansetron prescription, his insurance company denied it.
The reasoning: “The company had only approved 30 tablets a month and, for them, it was unjustifiable to approve anything above that amount,” Dr. Olazagasti explained.
After Dr. Olazagasti called the insurance company to resolve the issue, a company representative told her to fill out a prior authorization form.
But it was already after 7:30 p.m. ET on Friday.
At that point, finding the prior authorization documents, filling them out, and submitting them would take more time – and the paperwork couldn’t be filed until Monday.
“My patient was at home with zero tablets left and horrible symptoms. He couldn’t keep anything down,” Dr. Olazagasti said.
On Monday, the oncology team sent the prior authorization request, and her patient received his medication a few days later.
“My patient had to wait about 5 days to get the nausea meds he needed,” she said. In the meantime, he was in pain. “Having a refill of this simple supportive care medication rejected was infuriating.”
When Dr. Olazagasti vented her frustrations on Twitter, several people chimed in, suggesting purchasing the drug at a discount through GoodRx or Cost Plus instead of going through the insurance company.
At Cost Plus, for instance, 30 8-mg pills would cost $6.30, but ordering from the online pharmacy would mean waiting several days for delivery.
Discounts through GoodRx may provide a potentially faster solution in a pinch, but the pharmacy matters. In Miami, 30 8-mg pills would cost $19.99 at Costco with a GoodRx coupon, but $233.56 at CVS and $253.60 at Walgreens.
Although potentially useful, these options may not be the obvious choice for oncologists and patients, especially when a drug has already been approved and covered by the insurer. In this case, the denial was also a surprise, which left Dr. Olazagasti and her patient scrambling right before the weekend.
In addition, companies providing discounted generic drugs may only have a limited number of oncology-related medications. Cost Plus, for instance, now sells more than 1,000 generic prescription drugs at a fraction of what insurance companies charge, but only about 7 are cancer drugs.
On a broader level, Dr. Olazagasti noted, “insurance companies have a responsibility to cover these drugs. If we all get so fed up that we start relying on alternate routes to get patients their treatments, then insurance companies are let off the hook.”
However, using an alternative option like GoodRx or CostPlus could mean bypassing insurance company obstacles in certain cases.
“The hurdles someone may have to go through to get a generic drug approved are very frustrating,” said Stacie B. Dusetzina, PhD, professor of health policy and a professor of cancer research at Vanderbilt University in Nashville, Tenn.
In a weekend emergency situation, if the drug is discounted through GoodRx, “it can be a good backup strategy to send the prescription to the pharmacy” and more generally “worth it for patients to check if they can get a better deal on generic drugs through these companies.”
A version of this article first appeared on Medscape.com.
It was Friday, and oncologist Coral Olazagasti, MD, faced a ticking clock.
The patient – a man with HPV-related oropharyngeal cancer – was experiencing severe side effects from standard chemoradiation with weekly cisplatin. Intense nausea and grade 3 mucositis, in particular, left him struggling to swallow or take in any food or fluids.
He was on 8 mg of ondansetron (Zofran) every 8 hours, as needed, to keep the nausea at bay. The pills along with a feeding tube helped, but his symptoms were so intense, neither was quite enough.
“He still needed to be hospitalized twice for dehydration,” said Dr. Olazagasti, who specializes in head and neck medical cancer at Sylvester Comprehensive Cancer Center in Miami.
But when it came time to renew his ondansetron prescription, his insurance company denied it.
The reasoning: “The company had only approved 30 tablets a month and, for them, it was unjustifiable to approve anything above that amount,” Dr. Olazagasti explained.
After Dr. Olazagasti called the insurance company to resolve the issue, a company representative told her to fill out a prior authorization form.
But it was already after 7:30 p.m. ET on Friday.
At that point, finding the prior authorization documents, filling them out, and submitting them would take more time – and the paperwork couldn’t be filed until Monday.
“My patient was at home with zero tablets left and horrible symptoms. He couldn’t keep anything down,” Dr. Olazagasti said.
On Monday, the oncology team sent the prior authorization request, and her patient received his medication a few days later.
“My patient had to wait about 5 days to get the nausea meds he needed,” she said. In the meantime, he was in pain. “Having a refill of this simple supportive care medication rejected was infuriating.”
When Dr. Olazagasti vented her frustrations on Twitter, several people chimed in, suggesting purchasing the drug at a discount through GoodRx or Cost Plus instead of going through the insurance company.
At Cost Plus, for instance, 30 8-mg pills would cost $6.30, but ordering from the online pharmacy would mean waiting several days for delivery.
Discounts through GoodRx may provide a potentially faster solution in a pinch, but the pharmacy matters. In Miami, 30 8-mg pills would cost $19.99 at Costco with a GoodRx coupon, but $233.56 at CVS and $253.60 at Walgreens.
Although potentially useful, these options may not be the obvious choice for oncologists and patients, especially when a drug has already been approved and covered by the insurer. In this case, the denial was also a surprise, which left Dr. Olazagasti and her patient scrambling right before the weekend.
In addition, companies providing discounted generic drugs may only have a limited number of oncology-related medications. Cost Plus, for instance, now sells more than 1,000 generic prescription drugs at a fraction of what insurance companies charge, but only about 7 are cancer drugs.
On a broader level, Dr. Olazagasti noted, “insurance companies have a responsibility to cover these drugs. If we all get so fed up that we start relying on alternate routes to get patients their treatments, then insurance companies are let off the hook.”
However, using an alternative option like GoodRx or CostPlus could mean bypassing insurance company obstacles in certain cases.
“The hurdles someone may have to go through to get a generic drug approved are very frustrating,” said Stacie B. Dusetzina, PhD, professor of health policy and a professor of cancer research at Vanderbilt University in Nashville, Tenn.
In a weekend emergency situation, if the drug is discounted through GoodRx, “it can be a good backup strategy to send the prescription to the pharmacy” and more generally “worth it for patients to check if they can get a better deal on generic drugs through these companies.”
A version of this article first appeared on Medscape.com.
‘Only a sociopath could work for a large health system,’ doc says sardonically
A frustrated physician recently voiced some strong words in Medscape’s US Physician Burnout & Depression Report: “Only a sociopath could work for a large health system and not be burned out. Anyone who cares about patients is doomed to burnout.”
Medscape’s report showed that 53% of physicians feel burned out by job requirements; 65% say that burnout has impacted their relationships, and other statistics say that physicians are leaving clinical medicine because of all this pressure.
What is it about being employed by large organizations that can be so negative? In another study, MEMO – Minimizing Error, Maximizing Outcomes – researchers at the University of Wisconsin surveyed more than 400 doctors to learn about how their working environments corresponded with medical errors. More than half of the physicians reported time pressures when conducting physical examinations. Nearly a third felt they needed at least 50% more time than was allotted for this patient care function, and nearly a quarter said they needed at least 50% more time for follow-up appointments.
Some have asked: Can anyone, then, thrive in today’s health care environment and avoid burnout?
Although the frustrated physician noted above may sardonically say that a doctor needs to be sociopathic to enjoy it – lacking in feelings for others – “It’s a very small number of doctors who get in it for the wrong reasons and therefore care about their own benefit and not their patients,” said psychiatrist Wendy Dean, MD, CEO and cofounder of Moral Injury of Healthcare, a nonprofit organization addressing workforce distress in health care. “Those are the outliers.”
The vast majority of physicians do care about their patients – deeply, said Dr. Dean. They struggle under the weight of the health care system and yet must find ways to get through. Today, thriving in an imperfect system requires honing new skills, asking for help when needed, and pushing for systemic and cultural change.
“We’ve been assessing and trying to address burnout for half a century,” said Dr. Dean. “Despite all the good intentions, and people dedicating their entire careers to solving the issue, we’ve barely made a dent.”
With the advent of new technological requirements on the job and more demands from increasingly larger health care organizations, the risk for burnout is higher than ever before. “There’s an increased burden of regulatory-mandated and cumbersome administrative workload per patient,” said Shomron Ben-Horin, MD, cofounder of Evinature. “Often the computer/paperwork before and after a procedure is much longer than the procedure itself.”
Meeting insurance requirements is increasingly cumbersome, too, and preauthorizations and debates with payers over medical approval may put physicians frustratingly in the middle.
“This increases the psychological burden for physicians who may feel responsible for wrongdoing no matter which option they deem better,” Dr. Ben-Horin said. “Add in physician accessibility around the clock via mobile phones, emails, and apps, and you end up on call even if you’re not officially on call.”
Why some physicians suffer more
Some physicians are more likely to suffer burnout than others, said Jessi Gold, MD, assistant professor in the department of psychiatry at Washington University in St. Louis. “The self-valuation concept comes into play here,” she said. “If you make a mistake, do you blame yourself or see it as a growth opportunity? If it’s the former, you’re more likely to burn out.”
Dr. Ben-Horin added that the most patient-centric doctors are the ones who struggle most. “These are the doctors we’d all love to have as a patient,” he said. “But they are burdened by the extra tasks of the job, and they are the most stressed by the environment.”
So too are those physicians who never master compartmentalizing their feelings and emotions. “We learn in training to compartmentalize our emotions,” said Dr. Dean. “You can’t allow yourself to get emotional while performing chest compressions on an 18-year-old kid. So you shut it all away; otherwise, you might lose the patient.”
This turn-off switch becomes automatic, but it also comes at a cost. “When doctors were interviewed about [Buffalo Bills player] Damar Hamlin going into cardiac arrest on the football field, they talked about how a life-and-death situation is so common that they have to put the emotions away, work on the patient, and move onto the next,” said Dr. Dean. “The next patient needs you just as much. We must lock away our feelings and manage the situation.”
Dr. Gold explained that burying feelings, however, is a symptom of burnout. “We have to remove ourselves from the situation to protect ourselves,” she said. “We can’t cry in these situations, but we can’t bury our feelings either.”
Instead, Dr. Gold suggested, a good medium may exist. “You may not be able to address them in the moment, but you should sometime after,” she said.
This is just a starting point on how to remain a dedicated, caring physician without burning out. “The system is pretty broken, and to survive it first means wanting to survive it,” Dr. Gold said. “There’s a lot of focus on resiliency and lack thereof if a physician expresses burnout, but that’s a false notion. Doctors are a resilient bunch but even they get burned out.”
Change for the better must come from several places. One is asking for help, something that can be hard for a group conditioned to keeping a stiff upper lip. “Just because your peers might look healthy (emotionally) doesn’t mean they are,” said Dr. Gold. “We’ve normalized this culture of burying feelings, but that doesn’t mean it’s right.”
Dr. Ben-Horin also advocates diversifying your work. This might include engaging in research and academics, for instance. “This not only makes you a better broad-perspective doctor but allows you to psychologically switch gears on research days,” he said.
The biggest place to make change, however, is within the health care system culture itself. The AMA created a series of recommendations to address burnout at the resident and fellow level, a good starting point to carry through into staff work. The steps include creating a well-being framework, gathering a team to support a well-being program, developing the program in a way to foster fun and connectivity among the staff, fostering individual well-being that addresses emotional and physical well-being, and confronting burnout and creating a sustainable culture of well-being.
On a personal level, it’s essential that physicians keep close tabs on themselves and peers. “Understand the signs and symptoms of burnout by taking stock of where you are emotionally,” said Dr. Gold. “Have a place and time at the end of a hard day to reflect or find a ritual that helps you and stay with it.”
You might also reach out to a therapist or a peer when you’re struggling. Having honest conversations with peers can go a long way. “Find a confidant that allows you to be vulnerable,” Dr. Gold recommended. “Acknowledge that this is hard and that you might need help taking care of yourself. The system needs to change, but we can also learn to survive in the meantime. You don’t have to be a sociopath to make it.”
A version of this article originally appeared on Medscape.com.
A frustrated physician recently voiced some strong words in Medscape’s US Physician Burnout & Depression Report: “Only a sociopath could work for a large health system and not be burned out. Anyone who cares about patients is doomed to burnout.”
Medscape’s report showed that 53% of physicians feel burned out by job requirements; 65% say that burnout has impacted their relationships, and other statistics say that physicians are leaving clinical medicine because of all this pressure.
What is it about being employed by large organizations that can be so negative? In another study, MEMO – Minimizing Error, Maximizing Outcomes – researchers at the University of Wisconsin surveyed more than 400 doctors to learn about how their working environments corresponded with medical errors. More than half of the physicians reported time pressures when conducting physical examinations. Nearly a third felt they needed at least 50% more time than was allotted for this patient care function, and nearly a quarter said they needed at least 50% more time for follow-up appointments.
Some have asked: Can anyone, then, thrive in today’s health care environment and avoid burnout?
Although the frustrated physician noted above may sardonically say that a doctor needs to be sociopathic to enjoy it – lacking in feelings for others – “It’s a very small number of doctors who get in it for the wrong reasons and therefore care about their own benefit and not their patients,” said psychiatrist Wendy Dean, MD, CEO and cofounder of Moral Injury of Healthcare, a nonprofit organization addressing workforce distress in health care. “Those are the outliers.”
The vast majority of physicians do care about their patients – deeply, said Dr. Dean. They struggle under the weight of the health care system and yet must find ways to get through. Today, thriving in an imperfect system requires honing new skills, asking for help when needed, and pushing for systemic and cultural change.
“We’ve been assessing and trying to address burnout for half a century,” said Dr. Dean. “Despite all the good intentions, and people dedicating their entire careers to solving the issue, we’ve barely made a dent.”
With the advent of new technological requirements on the job and more demands from increasingly larger health care organizations, the risk for burnout is higher than ever before. “There’s an increased burden of regulatory-mandated and cumbersome administrative workload per patient,” said Shomron Ben-Horin, MD, cofounder of Evinature. “Often the computer/paperwork before and after a procedure is much longer than the procedure itself.”
Meeting insurance requirements is increasingly cumbersome, too, and preauthorizations and debates with payers over medical approval may put physicians frustratingly in the middle.
“This increases the psychological burden for physicians who may feel responsible for wrongdoing no matter which option they deem better,” Dr. Ben-Horin said. “Add in physician accessibility around the clock via mobile phones, emails, and apps, and you end up on call even if you’re not officially on call.”
Why some physicians suffer more
Some physicians are more likely to suffer burnout than others, said Jessi Gold, MD, assistant professor in the department of psychiatry at Washington University in St. Louis. “The self-valuation concept comes into play here,” she said. “If you make a mistake, do you blame yourself or see it as a growth opportunity? If it’s the former, you’re more likely to burn out.”
Dr. Ben-Horin added that the most patient-centric doctors are the ones who struggle most. “These are the doctors we’d all love to have as a patient,” he said. “But they are burdened by the extra tasks of the job, and they are the most stressed by the environment.”
So too are those physicians who never master compartmentalizing their feelings and emotions. “We learn in training to compartmentalize our emotions,” said Dr. Dean. “You can’t allow yourself to get emotional while performing chest compressions on an 18-year-old kid. So you shut it all away; otherwise, you might lose the patient.”
This turn-off switch becomes automatic, but it also comes at a cost. “When doctors were interviewed about [Buffalo Bills player] Damar Hamlin going into cardiac arrest on the football field, they talked about how a life-and-death situation is so common that they have to put the emotions away, work on the patient, and move onto the next,” said Dr. Dean. “The next patient needs you just as much. We must lock away our feelings and manage the situation.”
Dr. Gold explained that burying feelings, however, is a symptom of burnout. “We have to remove ourselves from the situation to protect ourselves,” she said. “We can’t cry in these situations, but we can’t bury our feelings either.”
Instead, Dr. Gold suggested, a good medium may exist. “You may not be able to address them in the moment, but you should sometime after,” she said.
This is just a starting point on how to remain a dedicated, caring physician without burning out. “The system is pretty broken, and to survive it first means wanting to survive it,” Dr. Gold said. “There’s a lot of focus on resiliency and lack thereof if a physician expresses burnout, but that’s a false notion. Doctors are a resilient bunch but even they get burned out.”
Change for the better must come from several places. One is asking for help, something that can be hard for a group conditioned to keeping a stiff upper lip. “Just because your peers might look healthy (emotionally) doesn’t mean they are,” said Dr. Gold. “We’ve normalized this culture of burying feelings, but that doesn’t mean it’s right.”
Dr. Ben-Horin also advocates diversifying your work. This might include engaging in research and academics, for instance. “This not only makes you a better broad-perspective doctor but allows you to psychologically switch gears on research days,” he said.
The biggest place to make change, however, is within the health care system culture itself. The AMA created a series of recommendations to address burnout at the resident and fellow level, a good starting point to carry through into staff work. The steps include creating a well-being framework, gathering a team to support a well-being program, developing the program in a way to foster fun and connectivity among the staff, fostering individual well-being that addresses emotional and physical well-being, and confronting burnout and creating a sustainable culture of well-being.
On a personal level, it’s essential that physicians keep close tabs on themselves and peers. “Understand the signs and symptoms of burnout by taking stock of where you are emotionally,” said Dr. Gold. “Have a place and time at the end of a hard day to reflect or find a ritual that helps you and stay with it.”
You might also reach out to a therapist or a peer when you’re struggling. Having honest conversations with peers can go a long way. “Find a confidant that allows you to be vulnerable,” Dr. Gold recommended. “Acknowledge that this is hard and that you might need help taking care of yourself. The system needs to change, but we can also learn to survive in the meantime. You don’t have to be a sociopath to make it.”
A version of this article originally appeared on Medscape.com.
A frustrated physician recently voiced some strong words in Medscape’s US Physician Burnout & Depression Report: “Only a sociopath could work for a large health system and not be burned out. Anyone who cares about patients is doomed to burnout.”
Medscape’s report showed that 53% of physicians feel burned out by job requirements; 65% say that burnout has impacted their relationships, and other statistics say that physicians are leaving clinical medicine because of all this pressure.
What is it about being employed by large organizations that can be so negative? In another study, MEMO – Minimizing Error, Maximizing Outcomes – researchers at the University of Wisconsin surveyed more than 400 doctors to learn about how their working environments corresponded with medical errors. More than half of the physicians reported time pressures when conducting physical examinations. Nearly a third felt they needed at least 50% more time than was allotted for this patient care function, and nearly a quarter said they needed at least 50% more time for follow-up appointments.
Some have asked: Can anyone, then, thrive in today’s health care environment and avoid burnout?
Although the frustrated physician noted above may sardonically say that a doctor needs to be sociopathic to enjoy it – lacking in feelings for others – “It’s a very small number of doctors who get in it for the wrong reasons and therefore care about their own benefit and not their patients,” said psychiatrist Wendy Dean, MD, CEO and cofounder of Moral Injury of Healthcare, a nonprofit organization addressing workforce distress in health care. “Those are the outliers.”
The vast majority of physicians do care about their patients – deeply, said Dr. Dean. They struggle under the weight of the health care system and yet must find ways to get through. Today, thriving in an imperfect system requires honing new skills, asking for help when needed, and pushing for systemic and cultural change.
“We’ve been assessing and trying to address burnout for half a century,” said Dr. Dean. “Despite all the good intentions, and people dedicating their entire careers to solving the issue, we’ve barely made a dent.”
With the advent of new technological requirements on the job and more demands from increasingly larger health care organizations, the risk for burnout is higher than ever before. “There’s an increased burden of regulatory-mandated and cumbersome administrative workload per patient,” said Shomron Ben-Horin, MD, cofounder of Evinature. “Often the computer/paperwork before and after a procedure is much longer than the procedure itself.”
Meeting insurance requirements is increasingly cumbersome, too, and preauthorizations and debates with payers over medical approval may put physicians frustratingly in the middle.
“This increases the psychological burden for physicians who may feel responsible for wrongdoing no matter which option they deem better,” Dr. Ben-Horin said. “Add in physician accessibility around the clock via mobile phones, emails, and apps, and you end up on call even if you’re not officially on call.”
Why some physicians suffer more
Some physicians are more likely to suffer burnout than others, said Jessi Gold, MD, assistant professor in the department of psychiatry at Washington University in St. Louis. “The self-valuation concept comes into play here,” she said. “If you make a mistake, do you blame yourself or see it as a growth opportunity? If it’s the former, you’re more likely to burn out.”
Dr. Ben-Horin added that the most patient-centric doctors are the ones who struggle most. “These are the doctors we’d all love to have as a patient,” he said. “But they are burdened by the extra tasks of the job, and they are the most stressed by the environment.”
So too are those physicians who never master compartmentalizing their feelings and emotions. “We learn in training to compartmentalize our emotions,” said Dr. Dean. “You can’t allow yourself to get emotional while performing chest compressions on an 18-year-old kid. So you shut it all away; otherwise, you might lose the patient.”
This turn-off switch becomes automatic, but it also comes at a cost. “When doctors were interviewed about [Buffalo Bills player] Damar Hamlin going into cardiac arrest on the football field, they talked about how a life-and-death situation is so common that they have to put the emotions away, work on the patient, and move onto the next,” said Dr. Dean. “The next patient needs you just as much. We must lock away our feelings and manage the situation.”
Dr. Gold explained that burying feelings, however, is a symptom of burnout. “We have to remove ourselves from the situation to protect ourselves,” she said. “We can’t cry in these situations, but we can’t bury our feelings either.”
Instead, Dr. Gold suggested, a good medium may exist. “You may not be able to address them in the moment, but you should sometime after,” she said.
This is just a starting point on how to remain a dedicated, caring physician without burning out. “The system is pretty broken, and to survive it first means wanting to survive it,” Dr. Gold said. “There’s a lot of focus on resiliency and lack thereof if a physician expresses burnout, but that’s a false notion. Doctors are a resilient bunch but even they get burned out.”
Change for the better must come from several places. One is asking for help, something that can be hard for a group conditioned to keeping a stiff upper lip. “Just because your peers might look healthy (emotionally) doesn’t mean they are,” said Dr. Gold. “We’ve normalized this culture of burying feelings, but that doesn’t mean it’s right.”
Dr. Ben-Horin also advocates diversifying your work. This might include engaging in research and academics, for instance. “This not only makes you a better broad-perspective doctor but allows you to psychologically switch gears on research days,” he said.
The biggest place to make change, however, is within the health care system culture itself. The AMA created a series of recommendations to address burnout at the resident and fellow level, a good starting point to carry through into staff work. The steps include creating a well-being framework, gathering a team to support a well-being program, developing the program in a way to foster fun and connectivity among the staff, fostering individual well-being that addresses emotional and physical well-being, and confronting burnout and creating a sustainable culture of well-being.
On a personal level, it’s essential that physicians keep close tabs on themselves and peers. “Understand the signs and symptoms of burnout by taking stock of where you are emotionally,” said Dr. Gold. “Have a place and time at the end of a hard day to reflect or find a ritual that helps you and stay with it.”
You might also reach out to a therapist or a peer when you’re struggling. Having honest conversations with peers can go a long way. “Find a confidant that allows you to be vulnerable,” Dr. Gold recommended. “Acknowledge that this is hard and that you might need help taking care of yourself. The system needs to change, but we can also learn to survive in the meantime. You don’t have to be a sociopath to make it.”
A version of this article originally appeared on Medscape.com.
Not always implemented or enforced: Harassment policies at work
Many companies, government agencies, and organizations have implemented policies and procedures to shield employees from sexual and other forms of harassment. The U.S. Department of Health & Human Services and the American Medical Association are just two examples.
Employers can tap a rich lode of guidance and resources to craft these antiharassment policies. The National Institutes of Health’s resource page is a good site for hospitals to check out.
But how effective have official policies proved in deterring harassment in medical workplaces? After all, in a study by the American Association of Medical Colleges, 34% of female faculty said they had experienced sexual harassment irrespective of such policies. And in a recent Medscape survey of more than 3,000 physicians, 27% reported that they had either witnessed or been subjected to sexual harassment or misconduct at work during the past 4 years.
When policies are absent or unenforced
She believes employer rules and policies generally are helpful in establishing who fields harassment complaints and in creating at least some accountability.
On the other hand, policies that don’t recognize anonymous complaints effectively discourage harassment victims from coming forward, Dr. Rohr-Kirchgraber argues. Even those policies that do allow anonymous complaints may have limitations.
For example, the NIH policy on reporting harassment acknowledges that “officials must follow up on all allegations of harassment and cannot guarantee that your identity will not become apparent during the process. Please note that if you remain anonymous, key details about the allegation or concern [may] be omitted. This will limit the NIH’s ability to conduct an inquiry and take corrective action as warranted.”
Risks in pressing a harassment case
A complainant whose name becomes public risks getting a reputation as a problem employee or suffering workplace retaliation, according to Dr. Rohr-Kirchgraber. She recalls a colleague who was on a clinical education track until she lodged a harassment complaint. Abruptly, she was told she was needed on a service with fewer teaching opportunities.
With such risks in mind, respondents to the Medscape survey advised employees in medical workplaces to familiarize themselves with policies and procedures before pressing a case.
“Document everything,” an ophthalmologist urged, including time, place, offender, and witnesses. Present that information to your supervisor, and if nothing is done, hire a lawyer, a gastroenterologist suggested.
But taking the situation to the Equal Employment Opportunity Commission can be complicated, Roberta Gebhard, DO, past AMWA president and founder of its Gender Equity Task Force, told this news organization.
“They talk to the employer and get the employer’s side of the story and eventually render a decision about whether you have a case you can put through and file a lawsuit,” she said. “I don’t know of any other situation in which you need ‘permission’ to file a lawsuit.”
Nevertheless, an attorney can be helpful with cases, and when someone is terminated, a lawyer can possibly have it overturned or converted to a resignation, Dr. Gebhard said.
“And always have a lawyer review your contract before you take the job,” she advised. The lawyer might adjust the contract’s verbiage in ways that can protect one down the road in the event of a potential termination. “It’s money very well spent.”
More education needed
Dr. Rohr-Kirchgraber said that protection against harassment goes beyond the employer’s policies and procedures. Building an overall consciousness of what harassment is should begin with employee onboarding, she said.
“The harasser may not even recognize that what they’re doing or saying is a form of harassment, so we need better education,” Dr. Rohr-Kirchgraber emphasized.
A version of this article originally appeared on Medscape.com.
Many companies, government agencies, and organizations have implemented policies and procedures to shield employees from sexual and other forms of harassment. The U.S. Department of Health & Human Services and the American Medical Association are just two examples.
Employers can tap a rich lode of guidance and resources to craft these antiharassment policies. The National Institutes of Health’s resource page is a good site for hospitals to check out.
But how effective have official policies proved in deterring harassment in medical workplaces? After all, in a study by the American Association of Medical Colleges, 34% of female faculty said they had experienced sexual harassment irrespective of such policies. And in a recent Medscape survey of more than 3,000 physicians, 27% reported that they had either witnessed or been subjected to sexual harassment or misconduct at work during the past 4 years.
When policies are absent or unenforced
She believes employer rules and policies generally are helpful in establishing who fields harassment complaints and in creating at least some accountability.
On the other hand, policies that don’t recognize anonymous complaints effectively discourage harassment victims from coming forward, Dr. Rohr-Kirchgraber argues. Even those policies that do allow anonymous complaints may have limitations.
For example, the NIH policy on reporting harassment acknowledges that “officials must follow up on all allegations of harassment and cannot guarantee that your identity will not become apparent during the process. Please note that if you remain anonymous, key details about the allegation or concern [may] be omitted. This will limit the NIH’s ability to conduct an inquiry and take corrective action as warranted.”
Risks in pressing a harassment case
A complainant whose name becomes public risks getting a reputation as a problem employee or suffering workplace retaliation, according to Dr. Rohr-Kirchgraber. She recalls a colleague who was on a clinical education track until she lodged a harassment complaint. Abruptly, she was told she was needed on a service with fewer teaching opportunities.
With such risks in mind, respondents to the Medscape survey advised employees in medical workplaces to familiarize themselves with policies and procedures before pressing a case.
“Document everything,” an ophthalmologist urged, including time, place, offender, and witnesses. Present that information to your supervisor, and if nothing is done, hire a lawyer, a gastroenterologist suggested.
But taking the situation to the Equal Employment Opportunity Commission can be complicated, Roberta Gebhard, DO, past AMWA president and founder of its Gender Equity Task Force, told this news organization.
“They talk to the employer and get the employer’s side of the story and eventually render a decision about whether you have a case you can put through and file a lawsuit,” she said. “I don’t know of any other situation in which you need ‘permission’ to file a lawsuit.”
Nevertheless, an attorney can be helpful with cases, and when someone is terminated, a lawyer can possibly have it overturned or converted to a resignation, Dr. Gebhard said.
“And always have a lawyer review your contract before you take the job,” she advised. The lawyer might adjust the contract’s verbiage in ways that can protect one down the road in the event of a potential termination. “It’s money very well spent.”
More education needed
Dr. Rohr-Kirchgraber said that protection against harassment goes beyond the employer’s policies and procedures. Building an overall consciousness of what harassment is should begin with employee onboarding, she said.
“The harasser may not even recognize that what they’re doing or saying is a form of harassment, so we need better education,” Dr. Rohr-Kirchgraber emphasized.
A version of this article originally appeared on Medscape.com.
Many companies, government agencies, and organizations have implemented policies and procedures to shield employees from sexual and other forms of harassment. The U.S. Department of Health & Human Services and the American Medical Association are just two examples.
Employers can tap a rich lode of guidance and resources to craft these antiharassment policies. The National Institutes of Health’s resource page is a good site for hospitals to check out.
But how effective have official policies proved in deterring harassment in medical workplaces? After all, in a study by the American Association of Medical Colleges, 34% of female faculty said they had experienced sexual harassment irrespective of such policies. And in a recent Medscape survey of more than 3,000 physicians, 27% reported that they had either witnessed or been subjected to sexual harassment or misconduct at work during the past 4 years.
When policies are absent or unenforced
She believes employer rules and policies generally are helpful in establishing who fields harassment complaints and in creating at least some accountability.
On the other hand, policies that don’t recognize anonymous complaints effectively discourage harassment victims from coming forward, Dr. Rohr-Kirchgraber argues. Even those policies that do allow anonymous complaints may have limitations.
For example, the NIH policy on reporting harassment acknowledges that “officials must follow up on all allegations of harassment and cannot guarantee that your identity will not become apparent during the process. Please note that if you remain anonymous, key details about the allegation or concern [may] be omitted. This will limit the NIH’s ability to conduct an inquiry and take corrective action as warranted.”
Risks in pressing a harassment case
A complainant whose name becomes public risks getting a reputation as a problem employee or suffering workplace retaliation, according to Dr. Rohr-Kirchgraber. She recalls a colleague who was on a clinical education track until she lodged a harassment complaint. Abruptly, she was told she was needed on a service with fewer teaching opportunities.
With such risks in mind, respondents to the Medscape survey advised employees in medical workplaces to familiarize themselves with policies and procedures before pressing a case.
“Document everything,” an ophthalmologist urged, including time, place, offender, and witnesses. Present that information to your supervisor, and if nothing is done, hire a lawyer, a gastroenterologist suggested.
But taking the situation to the Equal Employment Opportunity Commission can be complicated, Roberta Gebhard, DO, past AMWA president and founder of its Gender Equity Task Force, told this news organization.
“They talk to the employer and get the employer’s side of the story and eventually render a decision about whether you have a case you can put through and file a lawsuit,” she said. “I don’t know of any other situation in which you need ‘permission’ to file a lawsuit.”
Nevertheless, an attorney can be helpful with cases, and when someone is terminated, a lawyer can possibly have it overturned or converted to a resignation, Dr. Gebhard said.
“And always have a lawyer review your contract before you take the job,” she advised. The lawyer might adjust the contract’s verbiage in ways that can protect one down the road in the event of a potential termination. “It’s money very well spent.”
More education needed
Dr. Rohr-Kirchgraber said that protection against harassment goes beyond the employer’s policies and procedures. Building an overall consciousness of what harassment is should begin with employee onboarding, she said.
“The harasser may not even recognize that what they’re doing or saying is a form of harassment, so we need better education,” Dr. Rohr-Kirchgraber emphasized.
A version of this article originally appeared on Medscape.com.
Breast cancer exacts high financial toll worldwide
but in low- and middle-income countries as well, a meta-analysis found.
Although the rate of financial toxicity was much higher in low- and middle-income countries – affecting 79% of patients – more than 35% of patients in high-income countries also incurred financial hardship, the study team found.
The findings highlight the need for policies to offset the burden of direct and indirect costs for breast cancer care and improve the financial health of vulnerable patients, said the study authors, led by Kavitha Ranganathan, MD, of Brigham and Women’s Hospital and Harvard Medical School, Boston.
The study was published online in JAMA Network Open.
The most expensive malignancy?
Patients with breast cancer may be particularly burdened by costs of care, with one study showing substantially higher out-of-pocket costs for patients with breast cancer than colorectal, lung, and prostate cancer combined.
A Lancet Oncology Commission report revealed that breast cancer was the most expensive cancer in the United States in 2010, accounting for $16.5 billion, or 13% of all cancer-related spending. A separate analysis found that individual direct medical costs of breast cancer care can reach $100,000.
In high-income countries, the financial burden of breast cancer care may be the result of novel and costly cancer therapeutics and interventions, overuse of services, increased willingness to pay, and varying insurance coverage. In low- and middle-income countries, women may experience delayed diagnosis because of limited access to screening and high-quality diagnostic services, leading to more later-stage diagnoses requiring more extensive treatments. Lower baseline income, limited insurance coverage, and greater distance to treatment centers may also be factors.
“Establishing the global extent of financial toxicity and comparing the economic burden of disease in different populations is imperative to help policy makers prioritize funding of breast cancer care infrastructure,” Dr. Ranganathan and colleagues write.
In their meta-analysis of 18 studies – 14 from high-income countries and 4 from low – published from 2008 to 2021, the authors found that the definition of financial toxicity varied widely across studies.
For example, some used specific numerical criteria for defining financial toxicity, such as medical cost exceeding 40% of household capacity to pay or potential income or out-of-pocket costs exceeding 30% of annual household income.
Others used patient-reported outcome measures instruments evaluating subjective statements of financial difficulty, such as an affirmative answer to having financial difficulty or trouble paying medical bills, or paying more for medical care than is affordable.
In other studies, financial toxicity was defined according to a patient’s report of specific, objective financial consequences of care, including losing income or a job; having to borrow money or go into debt; having trouble paying for food, rent, or transportation; or having to forgo any type of medical care because of cost.
In their analysis, the pooled rate of financial toxicity among patients with breast cancer was 35.3% in high-income countries and 78.8% in low/middle-income countries, both demonstrating high heterogeneity or variability (P for heterogeneity < .001). In contrast, typical financial toxicity rates across all health conditions in low-income countries ranged from 6% to 12%, the investigators noted.
One study assessing quality of life measures in Egypt found that 47.5% of patients were food insecure, 66% needed financial assistance, 34% used savings to pay for treatment, and 41.2% lacked savings altogether.
Burden reduction
Given the high rates of financial toxicity associated with breast cancer, what strategies might reduce this cost burden?
When exploring potential factors associated with financial toxicity, the researchers found no clear association between financial toxicity and race, employment status, and age, and could draw no firm conclusions about the impact of comorbidities and urban vs. rural place of residence. In addition, cancer stage and treatments were “extremely” heterogeneous across studies and the authors found no clear association between either factor and financial toxicity.
But the authors noted that the highest-priority patients are typically those who have low education, have low socioeconomic status, lack health insurance, and live in low-resource areas.
To reduce financial toxicity and improve outcomes among patients with breast cancer, the study team recommended four potential strategies:
- Use targeted educational campaigns to raise awareness about the signs and symptoms of breast cancer and the importance of early diagnosis and treatment.
- Expand health care coverage to minimize direct medical out-of-pocket costs.
- Develop programs to assist with direct nonmedical and indirect costs, such as transportation to and lodging near treatment centers and childcare.
- Improve screening, referral, and treatment infrastructure for breast cancer care.
The researchers also noted that their data highlight the value of universal health care coverage as a policy strategy, with evidence of lower financial toxicity rates in countries with universal health coverage.
Support for the study was provided in part by the National Cancer Institute, United Nations Institute for Training and Research and the Global Surgery Foundation, Harvard Global Health Institute, Connors Center for Women’s Health and Gender Biology, the Center for Surgery and Public Health, and the National Endowment for Plastic Surgery. Dr. Ranganathan reports no relevant financial relationships. Several coauthors have disclosures; the full list can be found with the original article.
A version of this article originally appeared on Medscape.com.
but in low- and middle-income countries as well, a meta-analysis found.
Although the rate of financial toxicity was much higher in low- and middle-income countries – affecting 79% of patients – more than 35% of patients in high-income countries also incurred financial hardship, the study team found.
The findings highlight the need for policies to offset the burden of direct and indirect costs for breast cancer care and improve the financial health of vulnerable patients, said the study authors, led by Kavitha Ranganathan, MD, of Brigham and Women’s Hospital and Harvard Medical School, Boston.
The study was published online in JAMA Network Open.
The most expensive malignancy?
Patients with breast cancer may be particularly burdened by costs of care, with one study showing substantially higher out-of-pocket costs for patients with breast cancer than colorectal, lung, and prostate cancer combined.
A Lancet Oncology Commission report revealed that breast cancer was the most expensive cancer in the United States in 2010, accounting for $16.5 billion, or 13% of all cancer-related spending. A separate analysis found that individual direct medical costs of breast cancer care can reach $100,000.
In high-income countries, the financial burden of breast cancer care may be the result of novel and costly cancer therapeutics and interventions, overuse of services, increased willingness to pay, and varying insurance coverage. In low- and middle-income countries, women may experience delayed diagnosis because of limited access to screening and high-quality diagnostic services, leading to more later-stage diagnoses requiring more extensive treatments. Lower baseline income, limited insurance coverage, and greater distance to treatment centers may also be factors.
“Establishing the global extent of financial toxicity and comparing the economic burden of disease in different populations is imperative to help policy makers prioritize funding of breast cancer care infrastructure,” Dr. Ranganathan and colleagues write.
In their meta-analysis of 18 studies – 14 from high-income countries and 4 from low – published from 2008 to 2021, the authors found that the definition of financial toxicity varied widely across studies.
For example, some used specific numerical criteria for defining financial toxicity, such as medical cost exceeding 40% of household capacity to pay or potential income or out-of-pocket costs exceeding 30% of annual household income.
Others used patient-reported outcome measures instruments evaluating subjective statements of financial difficulty, such as an affirmative answer to having financial difficulty or trouble paying medical bills, or paying more for medical care than is affordable.
In other studies, financial toxicity was defined according to a patient’s report of specific, objective financial consequences of care, including losing income or a job; having to borrow money or go into debt; having trouble paying for food, rent, or transportation; or having to forgo any type of medical care because of cost.
In their analysis, the pooled rate of financial toxicity among patients with breast cancer was 35.3% in high-income countries and 78.8% in low/middle-income countries, both demonstrating high heterogeneity or variability (P for heterogeneity < .001). In contrast, typical financial toxicity rates across all health conditions in low-income countries ranged from 6% to 12%, the investigators noted.
One study assessing quality of life measures in Egypt found that 47.5% of patients were food insecure, 66% needed financial assistance, 34% used savings to pay for treatment, and 41.2% lacked savings altogether.
Burden reduction
Given the high rates of financial toxicity associated with breast cancer, what strategies might reduce this cost burden?
When exploring potential factors associated with financial toxicity, the researchers found no clear association between financial toxicity and race, employment status, and age, and could draw no firm conclusions about the impact of comorbidities and urban vs. rural place of residence. In addition, cancer stage and treatments were “extremely” heterogeneous across studies and the authors found no clear association between either factor and financial toxicity.
But the authors noted that the highest-priority patients are typically those who have low education, have low socioeconomic status, lack health insurance, and live in low-resource areas.
To reduce financial toxicity and improve outcomes among patients with breast cancer, the study team recommended four potential strategies:
- Use targeted educational campaigns to raise awareness about the signs and symptoms of breast cancer and the importance of early diagnosis and treatment.
- Expand health care coverage to minimize direct medical out-of-pocket costs.
- Develop programs to assist with direct nonmedical and indirect costs, such as transportation to and lodging near treatment centers and childcare.
- Improve screening, referral, and treatment infrastructure for breast cancer care.
The researchers also noted that their data highlight the value of universal health care coverage as a policy strategy, with evidence of lower financial toxicity rates in countries with universal health coverage.
Support for the study was provided in part by the National Cancer Institute, United Nations Institute for Training and Research and the Global Surgery Foundation, Harvard Global Health Institute, Connors Center for Women’s Health and Gender Biology, the Center for Surgery and Public Health, and the National Endowment for Plastic Surgery. Dr. Ranganathan reports no relevant financial relationships. Several coauthors have disclosures; the full list can be found with the original article.
A version of this article originally appeared on Medscape.com.
but in low- and middle-income countries as well, a meta-analysis found.
Although the rate of financial toxicity was much higher in low- and middle-income countries – affecting 79% of patients – more than 35% of patients in high-income countries also incurred financial hardship, the study team found.
The findings highlight the need for policies to offset the burden of direct and indirect costs for breast cancer care and improve the financial health of vulnerable patients, said the study authors, led by Kavitha Ranganathan, MD, of Brigham and Women’s Hospital and Harvard Medical School, Boston.
The study was published online in JAMA Network Open.
The most expensive malignancy?
Patients with breast cancer may be particularly burdened by costs of care, with one study showing substantially higher out-of-pocket costs for patients with breast cancer than colorectal, lung, and prostate cancer combined.
A Lancet Oncology Commission report revealed that breast cancer was the most expensive cancer in the United States in 2010, accounting for $16.5 billion, or 13% of all cancer-related spending. A separate analysis found that individual direct medical costs of breast cancer care can reach $100,000.
In high-income countries, the financial burden of breast cancer care may be the result of novel and costly cancer therapeutics and interventions, overuse of services, increased willingness to pay, and varying insurance coverage. In low- and middle-income countries, women may experience delayed diagnosis because of limited access to screening and high-quality diagnostic services, leading to more later-stage diagnoses requiring more extensive treatments. Lower baseline income, limited insurance coverage, and greater distance to treatment centers may also be factors.
“Establishing the global extent of financial toxicity and comparing the economic burden of disease in different populations is imperative to help policy makers prioritize funding of breast cancer care infrastructure,” Dr. Ranganathan and colleagues write.
In their meta-analysis of 18 studies – 14 from high-income countries and 4 from low – published from 2008 to 2021, the authors found that the definition of financial toxicity varied widely across studies.
For example, some used specific numerical criteria for defining financial toxicity, such as medical cost exceeding 40% of household capacity to pay or potential income or out-of-pocket costs exceeding 30% of annual household income.
Others used patient-reported outcome measures instruments evaluating subjective statements of financial difficulty, such as an affirmative answer to having financial difficulty or trouble paying medical bills, or paying more for medical care than is affordable.
In other studies, financial toxicity was defined according to a patient’s report of specific, objective financial consequences of care, including losing income or a job; having to borrow money or go into debt; having trouble paying for food, rent, or transportation; or having to forgo any type of medical care because of cost.
In their analysis, the pooled rate of financial toxicity among patients with breast cancer was 35.3% in high-income countries and 78.8% in low/middle-income countries, both demonstrating high heterogeneity or variability (P for heterogeneity < .001). In contrast, typical financial toxicity rates across all health conditions in low-income countries ranged from 6% to 12%, the investigators noted.
One study assessing quality of life measures in Egypt found that 47.5% of patients were food insecure, 66% needed financial assistance, 34% used savings to pay for treatment, and 41.2% lacked savings altogether.
Burden reduction
Given the high rates of financial toxicity associated with breast cancer, what strategies might reduce this cost burden?
When exploring potential factors associated with financial toxicity, the researchers found no clear association between financial toxicity and race, employment status, and age, and could draw no firm conclusions about the impact of comorbidities and urban vs. rural place of residence. In addition, cancer stage and treatments were “extremely” heterogeneous across studies and the authors found no clear association between either factor and financial toxicity.
But the authors noted that the highest-priority patients are typically those who have low education, have low socioeconomic status, lack health insurance, and live in low-resource areas.
To reduce financial toxicity and improve outcomes among patients with breast cancer, the study team recommended four potential strategies:
- Use targeted educational campaigns to raise awareness about the signs and symptoms of breast cancer and the importance of early diagnosis and treatment.
- Expand health care coverage to minimize direct medical out-of-pocket costs.
- Develop programs to assist with direct nonmedical and indirect costs, such as transportation to and lodging near treatment centers and childcare.
- Improve screening, referral, and treatment infrastructure for breast cancer care.
The researchers also noted that their data highlight the value of universal health care coverage as a policy strategy, with evidence of lower financial toxicity rates in countries with universal health coverage.
Support for the study was provided in part by the National Cancer Institute, United Nations Institute for Training and Research and the Global Surgery Foundation, Harvard Global Health Institute, Connors Center for Women’s Health and Gender Biology, the Center for Surgery and Public Health, and the National Endowment for Plastic Surgery. Dr. Ranganathan reports no relevant financial relationships. Several coauthors have disclosures; the full list can be found with the original article.
A version of this article originally appeared on Medscape.com.
FROM JAMA NETWORK OPEN
Slowing, not stopping, Alzheimer’s a better goal for clinical trials?
and may be a more realistic goal for clinical AD drug trials, a new report suggests.
The report is a yearlong undertaking by an expert work group convened by the Alzheimer’s Association and was prompted, in part, by the fallout from the U.S. Food and Drug Administration’s controversial decision to grant aducanumab (Aduhelm) accelerated approval, which came over the objection of an advisory panel that found the drug was ineffective.
The report’s authors call for a “reframing” of how researchers define “clinically meaningful” in randomized controlled trials (RCTs), noting that it’s time to adjust expectations of outcomes from relatively short clinical trials.
“Without lowering the bar, are we expecting too much from a clinical trial by expecting that unless the disease is halted in its tracks and there’s no progression, we failed at treatment?” the report’s lead author and group leader Ronald C. Petersen, MD, PhD, lead author, chair of the work group, and professor of neurology at the Mayo Clinic, Rochester, Minn., told this news organization.
Interpretations of clinical meaningfulness are used in the drug approval process and in decisions about whether an insurer will cover the cost of treatment, the authors note.
While the report doesn’t provide a consensus definition of clinically meaningful benefit, it does offer a starting point for a conversation about how the phrase should be defined in the context of RCTs for disease-modifying therapies (DMTs) in AD, Dr. Petersen said.
“What we tried to do was to put it into some kind of perspective and at least have people reflect on this: If you’re going to design the perfect drug trial in Alzheimer’s disease, what would it be? We wanted to get people to think about it without digging in their heels for or against,” he added.
The report was published online in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association.
A proactive measure
The expert group began its work in January 2022, less than a year after the FDA approved aducanumab. Since the panel began its work, the FDA has approved a second AD drug, lecanemab (Leqembi), and denied accelerated approval of a third medication, donanemab.
“At the time we started this group, we had one approved treatment, and we just knew that there were others on the way, and we needed to be prepared to have this conversation and be more proactive than reactive,” Christopher Weber, PhD, director of global science initiatives for the Alzheimer’s Association and co-author of the report, said in an interview.
The work group suggests that simply slowing disease progression might be a desired goal for drug trials, especially early on, before cognition and memory are affected.
They also note that a benefit identified during an 18-month clinical trial may ultimately lead to even more meaningful changes over coming years, well beyond the trial’s end.
In addition, the report authors call for the development of better research tools to more accurately assess meaningful change. The Clinical Dementia Rating (CDR) scale is currently the key instrument used as a primary outcome measure in RCTs. However, the report’s authors note that it may not be adequate to measure meaningful change in early-stage disease.
“Developing better tools certainly should be on the radar screen for all of us, because I think we can do better,” Dr. Petersen said. “The CDR, as good as it is and as long as it’s been used in the field, is a pretty blunt instrument, and it’s the result of subjective ratings.”
‘Quality of mind’
Jason Karlawish, MD, professor of medicine, medical ethics, health policy, and neurology at the University of Pennsylvania, Philadelphia, said measuring the actual impact of a drug on a patient’s disease and quality of life has been a hot topic in the AD field for some time, but settling on a definition of “clinically meaningful” that everyone agrees upon will be a challenge.
“I think the idea of ‘clinically meaningful’ is truly a socially constructed idea,” said Dr. Karlawish, co-director of Penn’s Memory Center, who did not work on the report.
“You can come up with objective measures of cognition, but a measure to call something ‘clinically meaningful’ ultimately requires some sort of negotiated social order among clinicians and patients and others who have immediate interest in the health and well-being of the patient.”
Dr. Karlawish added that he’s interested in the conversations the report might prompt and the challenges it could highlight, especially when it comes to how meaningful clinical benefit can be measured, regardless of how it’s defined.
“Hidden in this conversation about clinically meaningful treatments in Alzheimer’s disease is, frankly, not quality of life, but quality of mind,” said Dr. Karlawish. “No measure captures acceptably the very thing that everyone actually cares a lot about and why we view this disease as so dreadful, which is damage to our mind.”
More evidence needed
The development of such tools will take time. What does that mean for drugs already in the pipeline? Members of the work group argue that those trials must move forward at the same time new tools are being created.
“We need to continue to refine, develop better instruments, [and] develop tools that are going to assess the disease in its more subtle features early on, even in the so-called ‘pre-symptomatic’ stage of the disease,” said lead author Dr. Petersen. “We shouldn’t wait for the development of that before intervening if we have a drug that seems to work.”
However, not everyone who agrees with the premise of the report agrees with this position, including Joel S. Perlmutter, MD, professor of neurology, Washington University School of Medicine, St. Louis, who also commented on the report.
As reported by this news organization, Dr. Perlmutter was one of three physicians who resigned from the FDA advisory panel that voted against approving aducanumab after the agency moved forward anyway.
“We have to be careful not to recommend DMTs that we hope will help without strong evidence, especially when potential side effects are not trivial,” Dr. Perlmutter said. “We have to have evidence before making these recommendations so we don’t end up harming people more than helping them.”
The report received no specific funding. Dr. Petersen received consulting fees from Roche, Nestle, Merck, Biogen, Eisai, and Genentech. Full disclosures are included in the original article. Dr. Perlmutter and Dr. Karlawish report no relevant financial relationships.
A version of this article originally appeared on Medscape.com.
and may be a more realistic goal for clinical AD drug trials, a new report suggests.
The report is a yearlong undertaking by an expert work group convened by the Alzheimer’s Association and was prompted, in part, by the fallout from the U.S. Food and Drug Administration’s controversial decision to grant aducanumab (Aduhelm) accelerated approval, which came over the objection of an advisory panel that found the drug was ineffective.
The report’s authors call for a “reframing” of how researchers define “clinically meaningful” in randomized controlled trials (RCTs), noting that it’s time to adjust expectations of outcomes from relatively short clinical trials.
“Without lowering the bar, are we expecting too much from a clinical trial by expecting that unless the disease is halted in its tracks and there’s no progression, we failed at treatment?” the report’s lead author and group leader Ronald C. Petersen, MD, PhD, lead author, chair of the work group, and professor of neurology at the Mayo Clinic, Rochester, Minn., told this news organization.
Interpretations of clinical meaningfulness are used in the drug approval process and in decisions about whether an insurer will cover the cost of treatment, the authors note.
While the report doesn’t provide a consensus definition of clinically meaningful benefit, it does offer a starting point for a conversation about how the phrase should be defined in the context of RCTs for disease-modifying therapies (DMTs) in AD, Dr. Petersen said.
“What we tried to do was to put it into some kind of perspective and at least have people reflect on this: If you’re going to design the perfect drug trial in Alzheimer’s disease, what would it be? We wanted to get people to think about it without digging in their heels for or against,” he added.
The report was published online in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association.
A proactive measure
The expert group began its work in January 2022, less than a year after the FDA approved aducanumab. Since the panel began its work, the FDA has approved a second AD drug, lecanemab (Leqembi), and denied accelerated approval of a third medication, donanemab.
“At the time we started this group, we had one approved treatment, and we just knew that there were others on the way, and we needed to be prepared to have this conversation and be more proactive than reactive,” Christopher Weber, PhD, director of global science initiatives for the Alzheimer’s Association and co-author of the report, said in an interview.
The work group suggests that simply slowing disease progression might be a desired goal for drug trials, especially early on, before cognition and memory are affected.
They also note that a benefit identified during an 18-month clinical trial may ultimately lead to even more meaningful changes over coming years, well beyond the trial’s end.
In addition, the report authors call for the development of better research tools to more accurately assess meaningful change. The Clinical Dementia Rating (CDR) scale is currently the key instrument used as a primary outcome measure in RCTs. However, the report’s authors note that it may not be adequate to measure meaningful change in early-stage disease.
“Developing better tools certainly should be on the radar screen for all of us, because I think we can do better,” Dr. Petersen said. “The CDR, as good as it is and as long as it’s been used in the field, is a pretty blunt instrument, and it’s the result of subjective ratings.”
‘Quality of mind’
Jason Karlawish, MD, professor of medicine, medical ethics, health policy, and neurology at the University of Pennsylvania, Philadelphia, said measuring the actual impact of a drug on a patient’s disease and quality of life has been a hot topic in the AD field for some time, but settling on a definition of “clinically meaningful” that everyone agrees upon will be a challenge.
“I think the idea of ‘clinically meaningful’ is truly a socially constructed idea,” said Dr. Karlawish, co-director of Penn’s Memory Center, who did not work on the report.
“You can come up with objective measures of cognition, but a measure to call something ‘clinically meaningful’ ultimately requires some sort of negotiated social order among clinicians and patients and others who have immediate interest in the health and well-being of the patient.”
Dr. Karlawish added that he’s interested in the conversations the report might prompt and the challenges it could highlight, especially when it comes to how meaningful clinical benefit can be measured, regardless of how it’s defined.
“Hidden in this conversation about clinically meaningful treatments in Alzheimer’s disease is, frankly, not quality of life, but quality of mind,” said Dr. Karlawish. “No measure captures acceptably the very thing that everyone actually cares a lot about and why we view this disease as so dreadful, which is damage to our mind.”
More evidence needed
The development of such tools will take time. What does that mean for drugs already in the pipeline? Members of the work group argue that those trials must move forward at the same time new tools are being created.
“We need to continue to refine, develop better instruments, [and] develop tools that are going to assess the disease in its more subtle features early on, even in the so-called ‘pre-symptomatic’ stage of the disease,” said lead author Dr. Petersen. “We shouldn’t wait for the development of that before intervening if we have a drug that seems to work.”
However, not everyone who agrees with the premise of the report agrees with this position, including Joel S. Perlmutter, MD, professor of neurology, Washington University School of Medicine, St. Louis, who also commented on the report.
As reported by this news organization, Dr. Perlmutter was one of three physicians who resigned from the FDA advisory panel that voted against approving aducanumab after the agency moved forward anyway.
“We have to be careful not to recommend DMTs that we hope will help without strong evidence, especially when potential side effects are not trivial,” Dr. Perlmutter said. “We have to have evidence before making these recommendations so we don’t end up harming people more than helping them.”
The report received no specific funding. Dr. Petersen received consulting fees from Roche, Nestle, Merck, Biogen, Eisai, and Genentech. Full disclosures are included in the original article. Dr. Perlmutter and Dr. Karlawish report no relevant financial relationships.
A version of this article originally appeared on Medscape.com.
and may be a more realistic goal for clinical AD drug trials, a new report suggests.
The report is a yearlong undertaking by an expert work group convened by the Alzheimer’s Association and was prompted, in part, by the fallout from the U.S. Food and Drug Administration’s controversial decision to grant aducanumab (Aduhelm) accelerated approval, which came over the objection of an advisory panel that found the drug was ineffective.
The report’s authors call for a “reframing” of how researchers define “clinically meaningful” in randomized controlled trials (RCTs), noting that it’s time to adjust expectations of outcomes from relatively short clinical trials.
“Without lowering the bar, are we expecting too much from a clinical trial by expecting that unless the disease is halted in its tracks and there’s no progression, we failed at treatment?” the report’s lead author and group leader Ronald C. Petersen, MD, PhD, lead author, chair of the work group, and professor of neurology at the Mayo Clinic, Rochester, Minn., told this news organization.
Interpretations of clinical meaningfulness are used in the drug approval process and in decisions about whether an insurer will cover the cost of treatment, the authors note.
While the report doesn’t provide a consensus definition of clinically meaningful benefit, it does offer a starting point for a conversation about how the phrase should be defined in the context of RCTs for disease-modifying therapies (DMTs) in AD, Dr. Petersen said.
“What we tried to do was to put it into some kind of perspective and at least have people reflect on this: If you’re going to design the perfect drug trial in Alzheimer’s disease, what would it be? We wanted to get people to think about it without digging in their heels for or against,” he added.
The report was published online in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association.
A proactive measure
The expert group began its work in January 2022, less than a year after the FDA approved aducanumab. Since the panel began its work, the FDA has approved a second AD drug, lecanemab (Leqembi), and denied accelerated approval of a third medication, donanemab.
“At the time we started this group, we had one approved treatment, and we just knew that there were others on the way, and we needed to be prepared to have this conversation and be more proactive than reactive,” Christopher Weber, PhD, director of global science initiatives for the Alzheimer’s Association and co-author of the report, said in an interview.
The work group suggests that simply slowing disease progression might be a desired goal for drug trials, especially early on, before cognition and memory are affected.
They also note that a benefit identified during an 18-month clinical trial may ultimately lead to even more meaningful changes over coming years, well beyond the trial’s end.
In addition, the report authors call for the development of better research tools to more accurately assess meaningful change. The Clinical Dementia Rating (CDR) scale is currently the key instrument used as a primary outcome measure in RCTs. However, the report’s authors note that it may not be adequate to measure meaningful change in early-stage disease.
“Developing better tools certainly should be on the radar screen for all of us, because I think we can do better,” Dr. Petersen said. “The CDR, as good as it is and as long as it’s been used in the field, is a pretty blunt instrument, and it’s the result of subjective ratings.”
‘Quality of mind’
Jason Karlawish, MD, professor of medicine, medical ethics, health policy, and neurology at the University of Pennsylvania, Philadelphia, said measuring the actual impact of a drug on a patient’s disease and quality of life has been a hot topic in the AD field for some time, but settling on a definition of “clinically meaningful” that everyone agrees upon will be a challenge.
“I think the idea of ‘clinically meaningful’ is truly a socially constructed idea,” said Dr. Karlawish, co-director of Penn’s Memory Center, who did not work on the report.
“You can come up with objective measures of cognition, but a measure to call something ‘clinically meaningful’ ultimately requires some sort of negotiated social order among clinicians and patients and others who have immediate interest in the health and well-being of the patient.”
Dr. Karlawish added that he’s interested in the conversations the report might prompt and the challenges it could highlight, especially when it comes to how meaningful clinical benefit can be measured, regardless of how it’s defined.
“Hidden in this conversation about clinically meaningful treatments in Alzheimer’s disease is, frankly, not quality of life, but quality of mind,” said Dr. Karlawish. “No measure captures acceptably the very thing that everyone actually cares a lot about and why we view this disease as so dreadful, which is damage to our mind.”
More evidence needed
The development of such tools will take time. What does that mean for drugs already in the pipeline? Members of the work group argue that those trials must move forward at the same time new tools are being created.
“We need to continue to refine, develop better instruments, [and] develop tools that are going to assess the disease in its more subtle features early on, even in the so-called ‘pre-symptomatic’ stage of the disease,” said lead author Dr. Petersen. “We shouldn’t wait for the development of that before intervening if we have a drug that seems to work.”
However, not everyone who agrees with the premise of the report agrees with this position, including Joel S. Perlmutter, MD, professor of neurology, Washington University School of Medicine, St. Louis, who also commented on the report.
As reported by this news organization, Dr. Perlmutter was one of three physicians who resigned from the FDA advisory panel that voted against approving aducanumab after the agency moved forward anyway.
“We have to be careful not to recommend DMTs that we hope will help without strong evidence, especially when potential side effects are not trivial,” Dr. Perlmutter said. “We have to have evidence before making these recommendations so we don’t end up harming people more than helping them.”
The report received no specific funding. Dr. Petersen received consulting fees from Roche, Nestle, Merck, Biogen, Eisai, and Genentech. Full disclosures are included in the original article. Dr. Perlmutter and Dr. Karlawish report no relevant financial relationships.
A version of this article originally appeared on Medscape.com.
FROM ALZHEIMER’S AND DEMENTIA
Obstetric violence: How it’s defined and how we face it
In a recent, tragic case, a newborn died from being crushed by its mother, who fell asleep from the fatigue of numerous hours of labor. The case has brought the issue of obstetric violence (OV) to the attention of the Italian media. OV is defined as neglect, physical abuse, or disrespect during childbirth, according to the World Health Organization. The WHO outlined fundamental actions to be taken at various levels for its prevention, especially by health care systems, in a 2014 position paper.
Gender-based abuse
Considered a form of gender-based abuse, OV was first described in Latin America in the early 2000s. It is widespread and is increasing in European countries.
From the scientific literature on the subject, OV seems to be strongly associated with a lack of communication between health care personnel and pregnant women. It appears to have more to do with authoritarian and paternalistic behavior than actual real-life medical issues. Actively involving women in decision-making regarding childbirth and postpartum care seems to reduce the incidence of OV. Pregnant women who are more involved appear to trust health care professionals more and are therefore less likely to report disrespectful and abusive behavior.
Estimates of the prevalence of OV vary, depending on the country, the childbirth facility, and its definition. In Italy, inspired by the web campaign “#Bastatacere: le madri hanno voce [#EnoughSilence: mothers have a voice],” in 2017, the Obstetric Violence Database (OVO) investigated perceptions of having been a victim of OV in a representative sample of Italian women aged 18-54 years who had at least one child.
In 2017, just over 20% of the women interviewed considered themselves victims of OV; 33% felt they had not received adequate care; and around 35% reported serious problems concerning privacy or trust. Following the treatment received, approximately 15% of the women decided not to return to the same health care facility, and 6% did not want to proceed with further pregnancies.
At the time of publication, the results sparked a debate among relevant medical associations (the Association of Obstetricians and Gynecologists of Italian Hospitals, the Italian Society of Gynecology and Obstetrics, and the Association of Italian University Gynecologists), which immediately recognized the importance of the topic and accepted an invitation for further discussion on physician-patient relationships. They expressed reservations concerning the methodologies used by the OVO for data collection, especially regarding the representativeness of the sample.
Lack of communication
“In general, women who claim to have suffered from obstetric violence do not do so because they have been denied an aspect of care but because they have had an overall experience that, for whatever reason, did not conform with their expectations,” said Irene Cetin, MD, PhD, professor of obstetrics and gynecology at the University of Milan and director of the obstetrics and gynecology unit of the Buzzi Hospital in Milan. “Following the OVO’s exposé, the Italian Society of Gynecology and Obstetrics also conducted a large-scale study throughout Italy on all women who had given birth within a 3-month period. That investigation painted a very different picture. It wasn’t the case that no instances of obstetric violence were found, but the results were more contained. This is a very delicate subject, given that every report that we receive in hospital is always valued and looked into in detail, and women come to speak to us about errors and things that were missed.”
She added, “Experience leads me to say that complaints about what happens in the delivery room are extremely rare. What we hear more of, but still not often, are problems experienced during days spent in hospital immediately after childbirth.” There are never enough resources, which is the reason behind most problems. “The real hardships are found in the wards,” continued Dr. Cetin, “where the midwife-to-bed ratio is one or two to 30, and therefore this is where it is more difficult to feel like you’re being listened to. With COVID-19, the situation has gotten even worse, even though in my hospital we have always guaranteed, not without struggle, the presence of the partner in the delivery room.”
Only relatively recently have women’s partners been allowed into the hospital. In addition, a number of services, such as having the right beds and giving the correct explanations and information on how to establish a relationship with the child, are now being offered. These steps are necessary to guarantee what is referred to as a “humanizing birth,” a process in which the woman is at the center of the experience and is the main protagonist of the birth.
Lack of resources
This trend also is observed at the systemic level, where there is a lack of organization and resources. Few staff members are in the ward, even fewer specialists are in the psychological field, and contact is almost nonexistent after discharge from many hospitals and in many regions across Italy. There are, however, some positive aspects and hope for the future. “Just think,” said Dr. Cetin, “of how degree courses in obstetrics have changed over time, with a large part of teaching and training now being centered around the emotional aspects of birth.” From the gynecologist’s side, “most of the problems have been inherited from the past,” said Dr. Cetin. “Let’s not forget that we have only recently been giving birth in hospital. The so-called medicalization of childbirth has been responsible for a decline in the death rate and morbidity rate of pregnant women, but initially, there was little interest or care in how women felt in this situation, including with regard to physical pain. Since the 1970s, with Leboyer from France and Miraglia from Italy [promoters of so-called sweet birth], a path was cleared for a different line of thought. For this reason, I believe that the situation will improve over time.
“To continuously improve physician-patient communication,” concluded Dr. Cetin, “it would perhaps be appropriate to make sure that, even in the preparatory phase, women are well aware of possible complications and of the necessary and rapid emergency procedures that must be implemented by health care personnel. This way, a trusting relationship could be maintained, and the perception of having suffered abuse due to not being involved in strictly medical decisions could be stemmed.”
This article was translated from Univadis Italy. A version of this article appeared on Medscape.com.
In a recent, tragic case, a newborn died from being crushed by its mother, who fell asleep from the fatigue of numerous hours of labor. The case has brought the issue of obstetric violence (OV) to the attention of the Italian media. OV is defined as neglect, physical abuse, or disrespect during childbirth, according to the World Health Organization. The WHO outlined fundamental actions to be taken at various levels for its prevention, especially by health care systems, in a 2014 position paper.
Gender-based abuse
Considered a form of gender-based abuse, OV was first described in Latin America in the early 2000s. It is widespread and is increasing in European countries.
From the scientific literature on the subject, OV seems to be strongly associated with a lack of communication between health care personnel and pregnant women. It appears to have more to do with authoritarian and paternalistic behavior than actual real-life medical issues. Actively involving women in decision-making regarding childbirth and postpartum care seems to reduce the incidence of OV. Pregnant women who are more involved appear to trust health care professionals more and are therefore less likely to report disrespectful and abusive behavior.
Estimates of the prevalence of OV vary, depending on the country, the childbirth facility, and its definition. In Italy, inspired by the web campaign “#Bastatacere: le madri hanno voce [#EnoughSilence: mothers have a voice],” in 2017, the Obstetric Violence Database (OVO) investigated perceptions of having been a victim of OV in a representative sample of Italian women aged 18-54 years who had at least one child.
In 2017, just over 20% of the women interviewed considered themselves victims of OV; 33% felt they had not received adequate care; and around 35% reported serious problems concerning privacy or trust. Following the treatment received, approximately 15% of the women decided not to return to the same health care facility, and 6% did not want to proceed with further pregnancies.
At the time of publication, the results sparked a debate among relevant medical associations (the Association of Obstetricians and Gynecologists of Italian Hospitals, the Italian Society of Gynecology and Obstetrics, and the Association of Italian University Gynecologists), which immediately recognized the importance of the topic and accepted an invitation for further discussion on physician-patient relationships. They expressed reservations concerning the methodologies used by the OVO for data collection, especially regarding the representativeness of the sample.
Lack of communication
“In general, women who claim to have suffered from obstetric violence do not do so because they have been denied an aspect of care but because they have had an overall experience that, for whatever reason, did not conform with their expectations,” said Irene Cetin, MD, PhD, professor of obstetrics and gynecology at the University of Milan and director of the obstetrics and gynecology unit of the Buzzi Hospital in Milan. “Following the OVO’s exposé, the Italian Society of Gynecology and Obstetrics also conducted a large-scale study throughout Italy on all women who had given birth within a 3-month period. That investigation painted a very different picture. It wasn’t the case that no instances of obstetric violence were found, but the results were more contained. This is a very delicate subject, given that every report that we receive in hospital is always valued and looked into in detail, and women come to speak to us about errors and things that were missed.”
She added, “Experience leads me to say that complaints about what happens in the delivery room are extremely rare. What we hear more of, but still not often, are problems experienced during days spent in hospital immediately after childbirth.” There are never enough resources, which is the reason behind most problems. “The real hardships are found in the wards,” continued Dr. Cetin, “where the midwife-to-bed ratio is one or two to 30, and therefore this is where it is more difficult to feel like you’re being listened to. With COVID-19, the situation has gotten even worse, even though in my hospital we have always guaranteed, not without struggle, the presence of the partner in the delivery room.”
Only relatively recently have women’s partners been allowed into the hospital. In addition, a number of services, such as having the right beds and giving the correct explanations and information on how to establish a relationship with the child, are now being offered. These steps are necessary to guarantee what is referred to as a “humanizing birth,” a process in which the woman is at the center of the experience and is the main protagonist of the birth.
Lack of resources
This trend also is observed at the systemic level, where there is a lack of organization and resources. Few staff members are in the ward, even fewer specialists are in the psychological field, and contact is almost nonexistent after discharge from many hospitals and in many regions across Italy. There are, however, some positive aspects and hope for the future. “Just think,” said Dr. Cetin, “of how degree courses in obstetrics have changed over time, with a large part of teaching and training now being centered around the emotional aspects of birth.” From the gynecologist’s side, “most of the problems have been inherited from the past,” said Dr. Cetin. “Let’s not forget that we have only recently been giving birth in hospital. The so-called medicalization of childbirth has been responsible for a decline in the death rate and morbidity rate of pregnant women, but initially, there was little interest or care in how women felt in this situation, including with regard to physical pain. Since the 1970s, with Leboyer from France and Miraglia from Italy [promoters of so-called sweet birth], a path was cleared for a different line of thought. For this reason, I believe that the situation will improve over time.
“To continuously improve physician-patient communication,” concluded Dr. Cetin, “it would perhaps be appropriate to make sure that, even in the preparatory phase, women are well aware of possible complications and of the necessary and rapid emergency procedures that must be implemented by health care personnel. This way, a trusting relationship could be maintained, and the perception of having suffered abuse due to not being involved in strictly medical decisions could be stemmed.”
This article was translated from Univadis Italy. A version of this article appeared on Medscape.com.
In a recent, tragic case, a newborn died from being crushed by its mother, who fell asleep from the fatigue of numerous hours of labor. The case has brought the issue of obstetric violence (OV) to the attention of the Italian media. OV is defined as neglect, physical abuse, or disrespect during childbirth, according to the World Health Organization. The WHO outlined fundamental actions to be taken at various levels for its prevention, especially by health care systems, in a 2014 position paper.
Gender-based abuse
Considered a form of gender-based abuse, OV was first described in Latin America in the early 2000s. It is widespread and is increasing in European countries.
From the scientific literature on the subject, OV seems to be strongly associated with a lack of communication between health care personnel and pregnant women. It appears to have more to do with authoritarian and paternalistic behavior than actual real-life medical issues. Actively involving women in decision-making regarding childbirth and postpartum care seems to reduce the incidence of OV. Pregnant women who are more involved appear to trust health care professionals more and are therefore less likely to report disrespectful and abusive behavior.
Estimates of the prevalence of OV vary, depending on the country, the childbirth facility, and its definition. In Italy, inspired by the web campaign “#Bastatacere: le madri hanno voce [#EnoughSilence: mothers have a voice],” in 2017, the Obstetric Violence Database (OVO) investigated perceptions of having been a victim of OV in a representative sample of Italian women aged 18-54 years who had at least one child.
In 2017, just over 20% of the women interviewed considered themselves victims of OV; 33% felt they had not received adequate care; and around 35% reported serious problems concerning privacy or trust. Following the treatment received, approximately 15% of the women decided not to return to the same health care facility, and 6% did not want to proceed with further pregnancies.
At the time of publication, the results sparked a debate among relevant medical associations (the Association of Obstetricians and Gynecologists of Italian Hospitals, the Italian Society of Gynecology and Obstetrics, and the Association of Italian University Gynecologists), which immediately recognized the importance of the topic and accepted an invitation for further discussion on physician-patient relationships. They expressed reservations concerning the methodologies used by the OVO for data collection, especially regarding the representativeness of the sample.
Lack of communication
“In general, women who claim to have suffered from obstetric violence do not do so because they have been denied an aspect of care but because they have had an overall experience that, for whatever reason, did not conform with their expectations,” said Irene Cetin, MD, PhD, professor of obstetrics and gynecology at the University of Milan and director of the obstetrics and gynecology unit of the Buzzi Hospital in Milan. “Following the OVO’s exposé, the Italian Society of Gynecology and Obstetrics also conducted a large-scale study throughout Italy on all women who had given birth within a 3-month period. That investigation painted a very different picture. It wasn’t the case that no instances of obstetric violence were found, but the results were more contained. This is a very delicate subject, given that every report that we receive in hospital is always valued and looked into in detail, and women come to speak to us about errors and things that were missed.”
She added, “Experience leads me to say that complaints about what happens in the delivery room are extremely rare. What we hear more of, but still not often, are problems experienced during days spent in hospital immediately after childbirth.” There are never enough resources, which is the reason behind most problems. “The real hardships are found in the wards,” continued Dr. Cetin, “where the midwife-to-bed ratio is one or two to 30, and therefore this is where it is more difficult to feel like you’re being listened to. With COVID-19, the situation has gotten even worse, even though in my hospital we have always guaranteed, not without struggle, the presence of the partner in the delivery room.”
Only relatively recently have women’s partners been allowed into the hospital. In addition, a number of services, such as having the right beds and giving the correct explanations and information on how to establish a relationship with the child, are now being offered. These steps are necessary to guarantee what is referred to as a “humanizing birth,” a process in which the woman is at the center of the experience and is the main protagonist of the birth.
Lack of resources
This trend also is observed at the systemic level, where there is a lack of organization and resources. Few staff members are in the ward, even fewer specialists are in the psychological field, and contact is almost nonexistent after discharge from many hospitals and in many regions across Italy. There are, however, some positive aspects and hope for the future. “Just think,” said Dr. Cetin, “of how degree courses in obstetrics have changed over time, with a large part of teaching and training now being centered around the emotional aspects of birth.” From the gynecologist’s side, “most of the problems have been inherited from the past,” said Dr. Cetin. “Let’s not forget that we have only recently been giving birth in hospital. The so-called medicalization of childbirth has been responsible for a decline in the death rate and morbidity rate of pregnant women, but initially, there was little interest or care in how women felt in this situation, including with regard to physical pain. Since the 1970s, with Leboyer from France and Miraglia from Italy [promoters of so-called sweet birth], a path was cleared for a different line of thought. For this reason, I believe that the situation will improve over time.
“To continuously improve physician-patient communication,” concluded Dr. Cetin, “it would perhaps be appropriate to make sure that, even in the preparatory phase, women are well aware of possible complications and of the necessary and rapid emergency procedures that must be implemented by health care personnel. This way, a trusting relationship could be maintained, and the perception of having suffered abuse due to not being involved in strictly medical decisions could be stemmed.”
This article was translated from Univadis Italy. A version of this article appeared on Medscape.com.
Saying goodbye: How to transition teens to adult medical care
However, many clinicians feel insufficiently prepared to provide comprehensive transition services. This can result in the actual handoff or transfer into adult care being abrupt, incomplete, or outright unsuccessful. By following the recommended best practices of transitions, providers of pediatric care can ensure that this challenging goodbye prepares everyone for the next steps ahead.
Using a structured transition process
In 2011, a health care transition clinical report based on expert opinion and practice consensus and endorsed by the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians – Society of Internal Medicine was released. This report provided a decision-making algorithm for “practice-based implementation of transition for all youth beginning in early adolescence.”
The Got Transition organization, funded by the Maternal Child Health Bureau and Health Resources and Services Administration, provides web-based information and materials for health care providers and families to establish a smooth and successful transition. At the center of these recommendations are the Six Core Elements of Health Care Transition – the essential components of a structured transition process: 1) transition policy/guide; 2) tracking and monitoring; 3) readiness; 4) planning; 5) transfer of care, and 6) transition completion.
This transition process should start early in adolescence, preferably by age 12-14 years, to give adequate time to progress successfully through these elements and improve the likelihood of a smooth, final transfer into the care of an adult clinician.
Preparing your patients for transfer
Despite the availability of these recommendations, national surveys show that the overwhelming majority of adolescents with and without special health care needs report not receiving transition services. Lack of time, resources, interest, and patients being lost to care during adolescence all contribute to this deficit in care. Without transition preparation, the actual handoff or transfer to adult care can be difficult for adolescents, caregivers, and clinicians alike. Adolescents and caregivers may feel a sense of abandonment or have inadequate health knowledge/literacy, pediatric clinicians may fear that the patient is not ready for the expected independence, and adult clinicians face numerous challenges integrating these young patients into their practice.
A structured transition process can help the family and clinicians know what to expect during the transfer of care. Pediatric clinicians can gradually move from a pediatric model of care, in which the caregiver is the center of communication, to an adult model, putting the patient at the center. By encouraging the adolescent to be the direct communicator, the pediatric clinician can promote independence and assess health knowledge, allowing for education where gaps exist.
Assisting the patient in identifying and even meeting the adult clinician well ahead of the final transfer date can also make the process less daunting for the adolescent.
Adult clinicians should consider allowing more time for the first visit with a new young adult patient and welcome caregiver input early in the transfer process, particularly for patients with a chronic disease. By engaging patients and families in an intentional, gradual transition process with an expected outcome, all those involved will be more prepared for the final handoff.
Utilizing transition tools and engaging the adolescent
Numerous tools can assist in the preparation for transfer to adult care. These include transition summaries and emergency plans, which contain essential information such as current medical problems, allergies, medications, prior procedures and treatments, and sick day plans. Such tools can also be built into electronic medical records for easy modification and updating. They can be used as methods to engage and teach adolescents about their disease history and current regimen and can contain essential components for information handoff at the time of transfer to adult care. If the patient carries a rare diagnosis, or one that has historically been associated with lower survival to adulthood, these transfer documents can also include summary information about disease states and contact information for pediatric specialty clinicians.
Adolescent engagement in their health care during the time of transition can also be prompted through the use of patient portals within an electronic health record. Such portals put health information directly at the adolescent’s fingertips, provide them with an outlet for communication with their clinicians, and give reminders regarding health maintenance.
Completing the transfer: The final handoff
The best and most recommended means of relaying information at the time of transfer to adult care is a direct, verbal handoff between clinicians. This direct handoff has several goals:
(1) To ensure the patient has scheduled or attended the first appointment with the adult clinician
(2) To ensure record transfer has occurred successfully
(3) To answer any questions the receiving clinician may have about prior or ongoing care.
(4) To offer the adult clinician ongoing access to the pediatric clinician as an “expert” resource for additional questions.
By remaining available as a resource, the pediatric clinician can alleviate concerns for both the patient and caregiver as well as the receiving adult clinician.
As valuable as verbal handoffs can be, they are not always possible due to patients not having selected an adult clinician prior to leaving the pediatric clinician, an inability to reach the receiving clinician, and/or time limitations. Many of these barriers can be alleviated by early discussions of transitions of care as well as utilization of structured documentation tools as noted above.
It is also recommended that the pediatric clinician follows up with the patient and/or caregiver several months after the transfer is complete. This allows for the adolescent and/or the caregiver to reflect on the transition process and provide feedback to the pediatric clinicians and their practice for ongoing process improvement.
Reflection as a pediatrician
Ideally, all transition steps occur for the adolescent; in our opinion, a crucial component is to prepare the adolescent patient for the change from a pediatric to adult model of care, in which they are independent in their health communication and decision-making. By engaging adolescents to understand their health, how to maintain it, and when to seek care, we empower them to advocate for their own health as young adults. With appropriate health knowledge and literacy, adolescents are more likely to actively engage with their health care providers and make healthy lifestyle choices. So though saying goodbye may still be difficult, it can be done with the confidence that the patients will continue to get the care they need as they transition into adulthood.
Dr. Kim is assistant clinical professor, department of pediatrics, University of California, San Diego. Dr. Mennito is associate professor of pediatrics and internal medicine, Medical University of South Carolina, Charleston, S.C. Dr. Kim and Dr. Mennito have disclosed no relevant financial relationships. A version of this article originally appeared on Medscape.com.
However, many clinicians feel insufficiently prepared to provide comprehensive transition services. This can result in the actual handoff or transfer into adult care being abrupt, incomplete, or outright unsuccessful. By following the recommended best practices of transitions, providers of pediatric care can ensure that this challenging goodbye prepares everyone for the next steps ahead.
Using a structured transition process
In 2011, a health care transition clinical report based on expert opinion and practice consensus and endorsed by the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians – Society of Internal Medicine was released. This report provided a decision-making algorithm for “practice-based implementation of transition for all youth beginning in early adolescence.”
The Got Transition organization, funded by the Maternal Child Health Bureau and Health Resources and Services Administration, provides web-based information and materials for health care providers and families to establish a smooth and successful transition. At the center of these recommendations are the Six Core Elements of Health Care Transition – the essential components of a structured transition process: 1) transition policy/guide; 2) tracking and monitoring; 3) readiness; 4) planning; 5) transfer of care, and 6) transition completion.
This transition process should start early in adolescence, preferably by age 12-14 years, to give adequate time to progress successfully through these elements and improve the likelihood of a smooth, final transfer into the care of an adult clinician.
Preparing your patients for transfer
Despite the availability of these recommendations, national surveys show that the overwhelming majority of adolescents with and without special health care needs report not receiving transition services. Lack of time, resources, interest, and patients being lost to care during adolescence all contribute to this deficit in care. Without transition preparation, the actual handoff or transfer to adult care can be difficult for adolescents, caregivers, and clinicians alike. Adolescents and caregivers may feel a sense of abandonment or have inadequate health knowledge/literacy, pediatric clinicians may fear that the patient is not ready for the expected independence, and adult clinicians face numerous challenges integrating these young patients into their practice.
A structured transition process can help the family and clinicians know what to expect during the transfer of care. Pediatric clinicians can gradually move from a pediatric model of care, in which the caregiver is the center of communication, to an adult model, putting the patient at the center. By encouraging the adolescent to be the direct communicator, the pediatric clinician can promote independence and assess health knowledge, allowing for education where gaps exist.
Assisting the patient in identifying and even meeting the adult clinician well ahead of the final transfer date can also make the process less daunting for the adolescent.
Adult clinicians should consider allowing more time for the first visit with a new young adult patient and welcome caregiver input early in the transfer process, particularly for patients with a chronic disease. By engaging patients and families in an intentional, gradual transition process with an expected outcome, all those involved will be more prepared for the final handoff.
Utilizing transition tools and engaging the adolescent
Numerous tools can assist in the preparation for transfer to adult care. These include transition summaries and emergency plans, which contain essential information such as current medical problems, allergies, medications, prior procedures and treatments, and sick day plans. Such tools can also be built into electronic medical records for easy modification and updating. They can be used as methods to engage and teach adolescents about their disease history and current regimen and can contain essential components for information handoff at the time of transfer to adult care. If the patient carries a rare diagnosis, or one that has historically been associated with lower survival to adulthood, these transfer documents can also include summary information about disease states and contact information for pediatric specialty clinicians.
Adolescent engagement in their health care during the time of transition can also be prompted through the use of patient portals within an electronic health record. Such portals put health information directly at the adolescent’s fingertips, provide them with an outlet for communication with their clinicians, and give reminders regarding health maintenance.
Completing the transfer: The final handoff
The best and most recommended means of relaying information at the time of transfer to adult care is a direct, verbal handoff between clinicians. This direct handoff has several goals:
(1) To ensure the patient has scheduled or attended the first appointment with the adult clinician
(2) To ensure record transfer has occurred successfully
(3) To answer any questions the receiving clinician may have about prior or ongoing care.
(4) To offer the adult clinician ongoing access to the pediatric clinician as an “expert” resource for additional questions.
By remaining available as a resource, the pediatric clinician can alleviate concerns for both the patient and caregiver as well as the receiving adult clinician.
As valuable as verbal handoffs can be, they are not always possible due to patients not having selected an adult clinician prior to leaving the pediatric clinician, an inability to reach the receiving clinician, and/or time limitations. Many of these barriers can be alleviated by early discussions of transitions of care as well as utilization of structured documentation tools as noted above.
It is also recommended that the pediatric clinician follows up with the patient and/or caregiver several months after the transfer is complete. This allows for the adolescent and/or the caregiver to reflect on the transition process and provide feedback to the pediatric clinicians and their practice for ongoing process improvement.
Reflection as a pediatrician
Ideally, all transition steps occur for the adolescent; in our opinion, a crucial component is to prepare the adolescent patient for the change from a pediatric to adult model of care, in which they are independent in their health communication and decision-making. By engaging adolescents to understand their health, how to maintain it, and when to seek care, we empower them to advocate for their own health as young adults. With appropriate health knowledge and literacy, adolescents are more likely to actively engage with their health care providers and make healthy lifestyle choices. So though saying goodbye may still be difficult, it can be done with the confidence that the patients will continue to get the care they need as they transition into adulthood.
Dr. Kim is assistant clinical professor, department of pediatrics, University of California, San Diego. Dr. Mennito is associate professor of pediatrics and internal medicine, Medical University of South Carolina, Charleston, S.C. Dr. Kim and Dr. Mennito have disclosed no relevant financial relationships. A version of this article originally appeared on Medscape.com.
However, many clinicians feel insufficiently prepared to provide comprehensive transition services. This can result in the actual handoff or transfer into adult care being abrupt, incomplete, or outright unsuccessful. By following the recommended best practices of transitions, providers of pediatric care can ensure that this challenging goodbye prepares everyone for the next steps ahead.
Using a structured transition process
In 2011, a health care transition clinical report based on expert opinion and practice consensus and endorsed by the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians – Society of Internal Medicine was released. This report provided a decision-making algorithm for “practice-based implementation of transition for all youth beginning in early adolescence.”
The Got Transition organization, funded by the Maternal Child Health Bureau and Health Resources and Services Administration, provides web-based information and materials for health care providers and families to establish a smooth and successful transition. At the center of these recommendations are the Six Core Elements of Health Care Transition – the essential components of a structured transition process: 1) transition policy/guide; 2) tracking and monitoring; 3) readiness; 4) planning; 5) transfer of care, and 6) transition completion.
This transition process should start early in adolescence, preferably by age 12-14 years, to give adequate time to progress successfully through these elements and improve the likelihood of a smooth, final transfer into the care of an adult clinician.
Preparing your patients for transfer
Despite the availability of these recommendations, national surveys show that the overwhelming majority of adolescents with and without special health care needs report not receiving transition services. Lack of time, resources, interest, and patients being lost to care during adolescence all contribute to this deficit in care. Without transition preparation, the actual handoff or transfer to adult care can be difficult for adolescents, caregivers, and clinicians alike. Adolescents and caregivers may feel a sense of abandonment or have inadequate health knowledge/literacy, pediatric clinicians may fear that the patient is not ready for the expected independence, and adult clinicians face numerous challenges integrating these young patients into their practice.
A structured transition process can help the family and clinicians know what to expect during the transfer of care. Pediatric clinicians can gradually move from a pediatric model of care, in which the caregiver is the center of communication, to an adult model, putting the patient at the center. By encouraging the adolescent to be the direct communicator, the pediatric clinician can promote independence and assess health knowledge, allowing for education where gaps exist.
Assisting the patient in identifying and even meeting the adult clinician well ahead of the final transfer date can also make the process less daunting for the adolescent.
Adult clinicians should consider allowing more time for the first visit with a new young adult patient and welcome caregiver input early in the transfer process, particularly for patients with a chronic disease. By engaging patients and families in an intentional, gradual transition process with an expected outcome, all those involved will be more prepared for the final handoff.
Utilizing transition tools and engaging the adolescent
Numerous tools can assist in the preparation for transfer to adult care. These include transition summaries and emergency plans, which contain essential information such as current medical problems, allergies, medications, prior procedures and treatments, and sick day plans. Such tools can also be built into electronic medical records for easy modification and updating. They can be used as methods to engage and teach adolescents about their disease history and current regimen and can contain essential components for information handoff at the time of transfer to adult care. If the patient carries a rare diagnosis, or one that has historically been associated with lower survival to adulthood, these transfer documents can also include summary information about disease states and contact information for pediatric specialty clinicians.
Adolescent engagement in their health care during the time of transition can also be prompted through the use of patient portals within an electronic health record. Such portals put health information directly at the adolescent’s fingertips, provide them with an outlet for communication with their clinicians, and give reminders regarding health maintenance.
Completing the transfer: The final handoff
The best and most recommended means of relaying information at the time of transfer to adult care is a direct, verbal handoff between clinicians. This direct handoff has several goals:
(1) To ensure the patient has scheduled or attended the first appointment with the adult clinician
(2) To ensure record transfer has occurred successfully
(3) To answer any questions the receiving clinician may have about prior or ongoing care.
(4) To offer the adult clinician ongoing access to the pediatric clinician as an “expert” resource for additional questions.
By remaining available as a resource, the pediatric clinician can alleviate concerns for both the patient and caregiver as well as the receiving adult clinician.
As valuable as verbal handoffs can be, they are not always possible due to patients not having selected an adult clinician prior to leaving the pediatric clinician, an inability to reach the receiving clinician, and/or time limitations. Many of these barriers can be alleviated by early discussions of transitions of care as well as utilization of structured documentation tools as noted above.
It is also recommended that the pediatric clinician follows up with the patient and/or caregiver several months after the transfer is complete. This allows for the adolescent and/or the caregiver to reflect on the transition process and provide feedback to the pediatric clinicians and their practice for ongoing process improvement.
Reflection as a pediatrician
Ideally, all transition steps occur for the adolescent; in our opinion, a crucial component is to prepare the adolescent patient for the change from a pediatric to adult model of care, in which they are independent in their health communication and decision-making. By engaging adolescents to understand their health, how to maintain it, and when to seek care, we empower them to advocate for their own health as young adults. With appropriate health knowledge and literacy, adolescents are more likely to actively engage with their health care providers and make healthy lifestyle choices. So though saying goodbye may still be difficult, it can be done with the confidence that the patients will continue to get the care they need as they transition into adulthood.
Dr. Kim is assistant clinical professor, department of pediatrics, University of California, San Diego. Dr. Mennito is associate professor of pediatrics and internal medicine, Medical University of South Carolina, Charleston, S.C. Dr. Kim and Dr. Mennito have disclosed no relevant financial relationships. A version of this article originally appeared on Medscape.com.