Infectious Disease

Adults with long COVID more likely to report unmet health care needs

April 10, 2023

2 min read

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Disclosures:
The authors report no relevant financial disclosures.

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Key takeaways:

  • Roughly one in five people diagnosed with COVID-19 experiences a long COVID symptom.
  • The greatest barrier to care for people with long COVID is cost.

In a survey, roughly one in five people diagnosed with COVID-19 reported symptoms of long COVID, and many of these patients described trouble accessing or paying for health care.

According to findings published Monday in JAMA Network Open, adults with long COVID also reported trouble finding doctors who were knowledgeable about the condition, which may affect nearly 19 million US adults.

IDN0423Karpman_Graphic_01_WEB

“Many people with COVID-19 have experienced long COVID symptoms, but little is known about their access to health care,” Michael Karpman, MPP, principal research assistant in the Health Policy Center at the Urban Institute, told Healio.

“The experiences of patients with similar post-viral conditions such as myalgic encephalomyelitis or chronic fatigue syndrome suggested that some patients with long COVID could face difficulty navigating the health care system. Understanding the health care experiences of adults with long COVID is important, since unmet health needs could affect their ability to work and their long-term health and well-being,” he said.

Karpman and colleagues analyzed data on 9,484 US adults aged 18 to 64 years from the Health Reform Monitoring Survey and the Ipsos KnowledgePanel who completed a survey between June 17, 2022, and July 5, 2022.

In all, 36.4% of respondents reported ever being diagnosed with COVID-19 — 22.5% of whom reported a long COVID symptom. The researchers found that those experiencing long COVID were more likely than the adults who had COVID-19 but no long COVID symptoms or who never had COVID-19 to report unmet health needs in the previous 12 months.

Among the reasons for an unmet health need were cost (27%), getting a timely appointment (22%) and getting health plan care authorizations (16.6%) and difficulty finding doctors accepting new patients (16.4%).

Karpman said potential solutions for improving these issues include accelerating research on long COVID and trials of potential treatments, developing better clinical guidelines for providers, analyzing data on claim denials linked to long COVID care, and reducing exposure to high out-of-pocket costs.

“With limited information about diagnosing and treating post-COVID conditions, clinicians need to be aware that the uncertainty has both health and financial consequences for their patients,” he said.

Experts have previously said that treating long COVID requires patient-centered communication because of the wide variables between patients, and that empathy should be a starting point for treatment. Additionally, treatment with Paxlovid has been found to lower long COVID risk by about 26%.

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