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Key takeaways:
- Adults in the US who had long COVID were more likely to report unmet health care needs.
- Cost was the greatest challenge people faced with long COVID.
People with long COVID were more likely to report unmet health care needs in the last year due to challenges like cost and access to care, according to research published in JAMA Network Open.
Many adults in the United States report having long COVID, but not much is known about their access to health care, Michael Karpman, MPP, a research associate at the Urban Institute, a Washington, DC-based economic and social policy think tank, and colleagues wrote.
Data derived from: Karpman M, et al. JAMA Netw Open. 2023;doi:10.1001/jamanetworkopen.2023.7455.
“The experiences of patients with similar and overlapping conditions … suggest that US patients with long COVID may experience difficulties navigating a fragmented health care system,” they wrote.
Some barriers to care can include:
- high out of pocket costs;
- trouble finding available and accessible clinicians;
- clinician attitudes toward or lack of knowledge about the illness;
- denial of health insurance claims for tests and treatments; other
- Lack of care coordination.
“The consequences associated with unmet medical needs may include exacerbated risk of disability and reduced health-related quality of life,” the researchers wrote. “Access to timely and effective treatment may be especially important for maintaining employment.”
Karpman and colleagues conducted a survey study to approximate the association of long COVID — defined as experiencing symptoms more than 4 weeks after first having COVID-19 that are not explained by another condition or factor — with affordability and access barriers among US adults aged 18 to 64 years.
The researchers used data from a probability-based internet survey, the Health Reform Monitoring Survey, which was conducted from June 17, 2022, to July 5, 2022. The analysis included a nationally representative sample of 9,484 adults with a mean age of 41 years , 50.6% of whom were women.
Of the respondents, 3,382 reported ever being diagnosed with COVID-19 (36.4%; 95% CI, 34.7-38.2). Among that group, 833 respondents (22.5%; 95% CI, 20.9-24.2) reported currently having long COVID.
After adjusting for differences in health, geographic and demographic characteristics, Karpman and colleagues reported that those with long COVID were more likely than those who had a COVID-19 diagnosis but not long COVID (2,549 participants) and those who were never diagnosed with COVID- 19 (6,102 participants) to report unmet health care needs in the last year due to several challenges.
These challenges included:
- costs (27%; 95% CI, 23.2-30.7);
- getting a timely appointment (22%; 95% CI, 19.3-24.8);
- getting health plan care authorization (16.6%; 95% CI, 14.6-18.6); other
- finding clinicians accepting new patients (16.4%; 95% CI, 14.3-18.4);
“These barriers may be associated with adverse outcomes for workforce participation and long-term health,” Karpman and colleagues wrote.
However, policy makers “may be able to expand access to care” by disseminating clinical care guidelines, accelerating research on treatments for long COVID and regulating insurance practices, they concluded.
perspective
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David M. Duong, MD, MPH
The findings are not surprising given that long COVID is still a new diagnosis and providing such a diagnosis may be uncomfortable for most physicians.
Long COVID specialty clinics are mostly in urban areas at academic medical centers, so their accessibility is limited, and wait times are long, which further supports these findings. Long COVID diagnosis also requires, as part of the treatment plan, frequent outpatient visits, touch points with providers (mostly primary care), and since there is already a lack of primary care providers in the US, and among primary care providers, limited appointment slots are available. These findings are also not surprising.
The key here is both disseminating clinical care guidelines on long COVID, and not only regulating insurance practices to ensure coverage, but rather ensuring that there is availability of appointments and reimbursement for telehealth visits, which can increase availability. The majority of long COVID conditions will resolve with time, as the data reports now; however, the key to treatment plan is close contact with the health care system and providers — this is a CDC recommendation — yet, appointments and availability are limited (even for routine conditions). Therefore, I would argue, novel ways of interacting (ie, telehealth), patient empowerment and increasing the role of peer-support/patient-support groups may go a long way.
David M. Duong, MD, MPH
Member, Healio Primary Care Peer Perspective Board
Director, Global Primary Care and Social Change, Harvard University Center for Primary Care
Disclosures: Duong reports no relevant financial disclosures.
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