Patients with disabilities face disrespect from health care providers

Patients with disabilities are less likely to feel health care workers treat them respectfully, according to new research from the Perelman School of Medicine at the University of Pennsylvania. Additionally, patients with disabilities were also significantly less likely than those without disabilities to say that their providers gave them information that was easy-to-understand. The findings are published this month in Annals of Internal Medicine.

"People with disabilities make up 20 percent of American adults. This group already faces multiple barriers to accessing care, and they have large disparities in health outcomes. When they perceive disrespect from their providers, it can make them less proactive in engaging with the health care system, especially preventative care," said Mihir Kakara, MBBS, MSHP, who led the study as a neurology fellow at the Perelman School of Medicine and is now an assistant professor of Neurology at the NYU Grossman school of Medicine. "It is easy to imagine these patients not following up on certain recommendations-for example, getting that repeat brain scan to follow up on a certain lesion-if they don't feel respected." 

Overall, 2.9 percent of people without disabilities reported that they felt their providers didn't treat them with respect. But among patients with disabilities, 4.8 percent reported feeling that way.

A narrower analysis revealed greater disparities for patients with conditions affecting vision, hearing, mental health, and cognitive abilities. The proportion of respondents with these conditions who felt disrespected was nearly twice that of those without disabilities.

These findings prove that we must continuously strive toward ensuring our patient care is culturally humble and inclusive. While we have clear standards from the Americans with Disabilities Act, they should be the floor that medical professionals build upon, not the ceiling we strive for. We are seeing where great strides need to be made." 

Jaya Aysola, MD, DTMH, MPH, senior author, associate professor of General Internal Medicine and executive director of the Penn Medicine Center for Health Equity Advancement

Data analyzed in the study was pulled from 2017's National Health Interview Study. Almost 23,000 of the study's participants who had visited a health care provider in the last year were asked about their providers' "cultural competence"-sensitivities to different people's circumstances and customs. Among them, almost 5,000 of the participants-roughly 20 percent-identified as having a disability, roughly in line with reported national averages.

Further queries

Participants in the 2017 study were asked whether their provider gave them instructions that were easy to understand. Wide gaps were found between those with disabilities and those without: 11.3 percent of patients with disabilities didn't feel health care workers explained things well, and 7.1 percent of those without disabilities felt the same.

At least 13 percent of those with either vision, hearing, mental health, or cognitive conditions all felt that they weren't given easy-understand directions.

Patients had also been queried whether their providers "asked opinions about their care." Here, the researchers found that a significant number of respondents both with and without disabilities expressed that their providers did not ask their thoughts: 41.1 percent of patients without disabilities said they weren't asked, compared to 44.9 percent of patients with disabilities. Again, those with visual impairments reported significantly worse experiences.

Changing care for patients with disabilities

In 2023, the National Institutes of Health (NIH) officially designated people with disabilities as a population demonstrating disparities in health driven by social disadvantages. That designation meant that more NIH funds could be used to support that underserved population with research. 

Moving forward, Aysola and Kakara believe there should be follow-up studies examining the potential health implications for patients with disabilities who feel disrespect from their providers or have trouble understanding what they're being told.

They also see opportunities to examine the effect of system-level policies, and call for ensuring a patient-centered care approach in every setting. 

"It's about empowering and meeting the needs and preferences of our patients," Kakara said. 

When patients have disabilities, patient-centered care can involve, as an example, maintaining eye contact and speaking directly to them, rather than only addressing their family members. Another example is printing out instructions with large font for those with low vision.

"Patient-centered care models have now been adopted by many health care systems, but there is still a critical gap in providing disability-inclusive care in medical education and training, and our analysis highlights a need to incorporate such disability-specific training into our daily practice," Kakara explained. 

Kakara was funded by Agency for Healthcare Research and Quality T32 training grant during the period of this study.