Q&A: Long COVID is more prevalent among those with preexisting disabilities

Key takeaways:

• Patients with disabilities face long COVID at nearly double the rate of the general population.
• Disability type mattered; those with chronic conditions and psychiatric disabilities saw even higher rates.

Long COVID is more prevalent among patients with all types of disabilities, and primary care providers must ensure their practices are accessible for everyone, according to an expert.

Jean P. Hall, PhD, director of the Institute for Health and Disability Policy Studies and Research and Training Center on Independent Living at the University of Kansas, recently published a cross-sectional, descriptive study in the American Journal of Public Health, revealing that long COVID is more prevalent among patients who have disabilities, which worsens barriers to health care access.

Using data from 2,262 respondents in the 2022 National Survey on Health and Disability, the researchers found that 40.6% of the patients who had preexisting disabilities had long COVID compared with 18.9% of the general population.

They wrote that patients who had disabilities already faced barriers in health care, particularly during the pandemic. Therefore, these barriers, when combined with preexisting health disparities, could have contributed to the increased prevalence of long COVID in this population.

Healio spoke with Hall to learn more about the data, their implications for primary care providers and more.

Healio: Why did you decide to study this, and can you describe the importance of your research?

Hall: Most studies of long COVID ask about the presence of a disability at the time of the survey but do not ask if the respondent had a disability before contracting COVID-19. This gap in research is significant because understanding the effects of long COVID on people who already have disabilities can help address their specific needs and develop strategies for prevention. Additionally, we knew from responses to the survey we administered that many respondents were experiencing long COVID, so we wanted to understand exactly how many [had been affected] and their demographics. We hope that our study will encourage other researchers to continue exploring long COVID among people with disabilities to address their needs and hopefully prevent future cases.

Healio: You found a more than twofold higher long COVID prevalence among people with preexisting disabilities compared with the general population. Why is this the case?

Hall: We do not know for certain why people with preexisting disabilities have a greater prevalence of long COVID, but we do know they were more likely to experience barriers to accessing vaccines, testing and treatment for COVID-19 during the pandemic. These barriers likely contributed to greater rates of long COVID, although they may not be the only factors. We hope that our findings will encourage other researchers to further investigate other possible reasons for the disparity.

Healio: Did the type of disability make a difference?

Hall: Our findings indicate that there is some variation in the prevalence of long COVID by disability type, with people who had preexisting chronic conditions and psychiatric disabilities having higher rates of long COVID. Although limited research has been conducted in this area, some findings suggest that people with certain conditions — such as diabetes or depression — may be more likely to develop long COVID, similar to our findings. Our study was the first to look at people with all types of preexisting disabilities, but much remains to be learned about the underlying reasons for these differences.

Healio: What are some of the barriers that patients who have disabilities face when seeking health care?

Hall: It is well documented that people with disabilities face myriad barriers when attempting to access care, from physical, informational and attitudinal barriers to issues such as lack of accessible transportation and higher out-of-pocket costs. Physical barriers include exam tables or scales that are not accessible to people who use wheelchairs; informational barriers include a lack of written information in braille or on websites that are accessible to people with vision disabilities; and attitudinal barriers include the belief by some medical providers that people with disabilities do not merit the same level of care as other patients, which can result in lower rates of preventive services and other screenings. During the pandemic, people with disabilities were often unable to access websites and other means of making vaccine appointments or encountered inaccessible vaccination administration sites. There are also documented occurrences of people with disabilities who contracted the COVID-19 virus being denied treatment.

Healio: How can these barriers be overcome? Do you believe changes need to be made at the policy level?

Hall: Attitudinal barriers are among the most significant. For example, a Health Affairs article discusses cases where a patient with a disability would be sent to a zoo or cattle processing plant to be weighed — an appalling and unacceptable practice that reflects deep-seated biases. Such examples highlight the urgent need for policy changes at both organizational and systemic levels to ensure comprehensive and accessible care for people with disabilities. The AMA has its own policies related to accessibility for patients with disabilities, which can serve as a useful guide for implementing these changes.

Healio: What can PCPs specifically do to make care more accessible for patients with disabilities, particularly those who also have long COVID?

Hall: PCPs can check their practices for the various forms of accessibility mentioned earlier. Are their exam tables and scales accessible to wheelchair users? Do they make information available in alternate formats, and do they know how to access a sign language interpreter if needed? Is their web portal accessible to people with vision impairments? More importantly, do they understand that people with disabilities can be just as healthy as anyone else, with the right supports and services? Regarding long COVID, it is especially important to listen to what the [patient] reports experiencing. The research community is still trying to understand all of the different manifestations of long COVID. PCPs should not just assume that a symptom can be attributed to a person’s preexisting disability —known as diagnostic overshadowing.

Healio: What is the take-home message for PCPs from this conversation?

Hall: There are three main messages.

1. be aware that long COVID is more prevalent among people with disabilities;
2. understand that masking is still important in many instances; and
3. take the time to consider whether your own practice is fully accessible and safe for patients with disabilities.

Healio: Is there anything else you would like to add?

Hall: PCPs are so important in providing frontline treatment to people with disabilities, and we truly appreciate this opportunity to increase their awareness of long COVID among their patients with disabilities and also of the many barriers to care that this population encounters every day. Many resources are available to support efforts to address these barriers.

References:

• Access to care for patients with disabilities: Strategies for ensuring a safe, accessible and ADA compliant practice. Available at: https://www.ama-assn.org/sites/ama-assn.org/files/corp/media-browser/public/public-health/disability-ada.pdf. Accessed Oct. 7, 2024.
• Agaronnik ND, et al. J Gen Intern Med. 2021;doi:10.1007/s11606-020-06327-7.
• Diagnostic overshadowing among groups experiencing health disparities. Available at: https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safety-topics/sentinel-event/sea-65-diagnostic-overshadowing-6-16-22-final.pdf. Accessed Oct. 7, 2024.
• Disability competent care. Available at: https://hcpf.colorado.gov/disability-competent-care. Accessed Oct. 7, 2024.
• Lagu T, et al. Health Aff. 2022;doi:10.1377/hlthaff.2022.00475.
• Medical care of persons with disabilities. Available at: https://policysearch.ama-assn.org/policyfinder/detail/Medical%20Care%20of%20Persons%20with%20Disabilities%20H-90.968?uri=%2FAMADoc%2FHOD.xml-0-5283.xml. Accessed Oct. 7, 2024.
• Modernizing health care to improve physical accessibility. Available at: https://www.cms.gov/Outreach-and-Education/MLN/WBT/MLN9033809-Physical-Accessibility/OMHPA/omh-modernizing-healthcare/index.html. Accessed Oct. 7, 2024.
• Modernizing health care to improve physical accessibility: Resources inventory. Available at: https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/OMH-Modernizing-Health-Care-Physical-Accessibility.pdf. Accessed Oct. 7, 2024.