A new survey of U.S. doctors finds that more than 80% believe people with a significant disability have a worse quality of life than those who are not disabled, underscoring how physicians’ perceptions across specialties could negatively influence the care of the more than 61 million Americans with disabilities.
In the analysis, published Monday in Health Affairs, 82% of surveyed doctors thought the quality of life of those with disabilities was either “a little worse” or “a lot worse” than those without. While about 80% said they strongly agreed that it is very valuable to understand their patients with disabilities, only 18% strongly agreed that patients with disabilities are treated unfairly in the health care system.
Lead author Lisa Iezzoni, a professor of medicine at Harvard Medical School and a core faculty member at the Mongan Institute Health Policy Research Center at Massachusetts General Hospital, said she was surprised that so many doctors “were open and willing to say that.” Iezzoni, who has multiple sclerosis and has studied the health care experiences and outcomes of people with disabilities for more than two decades, said she assumed doctors would be more hesitant to admit they hold these views.
The study surveyed 714 doctors across seven specialities: family medicine, general internal medicine, rheumatology, neurology, ophthalmology, orthopedic surgery, and obstetrics-gynecology. The specialties were chosen because they tend to see many people with disabilities. Of the survey respondents, 62% were male and 38% were female. The majority, 65%, were white, 17% were Asian, 7% Hispanic, 6% Black, 0.2% Native American, 0.9% Pacific Islander, and 4.5% were classified as other. Roughly 1 in 3 doctors reported that they or a family member has a significant disability.
About 57% of doctors felt strongly that they welcomed those with disabilities into their practice, and only 41% of respondents felt very confident they could provide the same level of care to patients with disabilities as those without. The landmark Americans with Disabilities Act of 1990 requires that health care entities provide full and equal access to care to those with disabilities.
Although the study did not assess why physicians answered the way they did, Iezzoni said she doubts they thought any of their responses were prejudiced. When it comes to responses concerning quality of life, she said she thinks doctors “believe that they have an understanding of disease that gives them a special ability to judge people’s lives.”
While there are disabilities that could worsen a person’s quality of life, said Iezzoni, previous research has shown that people with disabilities overall rate their quality of life as the same or better than those without a disability. Yet, the study reported, disabled people face persistent health disparities, including in screening and preventative services, reproductive and pregnancy care, and communication with clinicians.
Megan Morris, an associate professor at the University of Colorado Anschutz Medical Campus who studies health disparities among people with disabilities and was not involved in the study, said that the doctors’ survey responses support previous research. In a 2017 study, she found that even in a clinic that was fully accessible to people with disabilities, disabled patients did not report that doctors utilized accessible exam tables any more than at a clinic with standard ones. Disabled patients at both clinics were less satisfied with their care than patients without disabilities.
“You need to have that accessible environment, and then also address the provider’s biases, assumptions, knowledge, and how that might be influencing the care they’re providing,” said Morris, who is also the director of the Learning Collaborative to Address Disability Equity in Healthcare. The equipment alone, she said, is not enough.
The attitudes captured in the survey are particularly striking in the current moment, said Morris, when there’s been discussion about how to prioritize lifesaving care during the Covid-19 pandemic. In fact, Iezzoni recalled that she and her colleagues got the survey results during the height of the pandemic last spring, when there was increasing concern that patients with disabilities would be denied ICU beds and ventilators. Last March, the Office for Civil Rights of the Department of Health and Human Services issued a bulletin that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age.”
“That’s why these findings just hit home,” Iezzoni said.
Morris also said that in her experience as a medical educator, although disability is sometimes mentioned in passing or even focused on for a lecture, it is not fully integrated into the curriculum. And unlike factors like race, it’s also rarely discussed in training related to bias, which is something Morris examines in her research.
The study authors call for more training on disability in all levels of medical education, “including disability cultural competence and etiquette.”
Britt Gratreak, an M.D.-Ph.D. student at the University of Arizona, has migraines, processing difficulties, and post-traumatic stress disorder as the result of a traumatic brain injury. As a second-year student, she also said disability is something that is almost never mentioned in her curriculum. In particular, she noted there is a lack of discussion about the accessibility challenges and prejudices a person might face in addition to a medical condition.
“It’s not a part of our curriculum at all,” said Gratreak, who was also not involved in the study.
Sarah Diekman, an occupational and environmental medicine resident physician at Johns Hopkins Bloomberg School of Public Health, wrote in an email that doctors need to have a better understanding of the Americans with Disabilities Act and make accommodations so that all patients receive the same level of care. Diekman was also not a part of the new research.
As a doctor with dysautonomia and dyslexia, Diekman wrote that she has long noticed some of her colleagues did not seem welcoming to people with disabilities. As a medical student and later a doctor, she said she felt like many physicians wouldn’t welcome her or patients like her because of her disability.
Ultimately, Iezzoni said that while the results of the study are striking, they are “shallow and broad.” She and her colleagues will next examine additional data from the survey, including doctors’ understanding of the Americans with Disabilities Act and data specific to different types of disability. Nevertheless, Iezonni said the survey confirms attitudes that she and some others with disabilities have always suspected.
“Our findings, unfortunately, kind of support the worst fears of people with disabilities,” she said.
Try having obvious Ehrlers-Danlos, and trying to get a diagnosis or medical support in eastern Kentucky. The comorbidities list is immense, truly educated doctors (let alone PAs or APRNs) are rarer than EDS patients. Nearing retirement age without a retirement, finally forcing an out of state diagnosis and testing, positive or negative. Doctors aren’t my favorite people now. The ignorance is injurous, even deadly. I suspect misdiagnosis killed a sibling and a parent.
I have 4 different long-term health disabilities.
1. Polio at 2 years old
2. Mast Cell Activation Syndrome
3. Asperger’s Syndrome
4. Horribly abusive parents who did not believe in vaccines & blamed me for my polio induced
I’ve given up completely on seeing docs. They neither care nor listen. It took 53 years to get a diagnosis for MCAS! I was told repeatedly I had “crazy woman” disease; dismissed; and ignored.
I have a PhD in molecular biology, yet I was treated as if I knew nothing. I have left the US and can now take care of myself, getting all the meds I need, without seeing any docs. I wonder how disabled people cope who do not have a medical science education and can care for themselves????
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