Individuals with long COVID report diverse symptoms lasting weeks or months after initial infection, causing significant psychosocial distress. Navigating health care interactions are often difficult for these individuals due to the diffuse nature of their symptoms, a lack of effective treatment options, and skepticism from some providers. To better understand these challenges, this study sought to further describe the lived experience of individuals with long COVID. A survey was conducted with individuals evaluated for long COVID at a specialty clinic (n = 200), which included questions about prior conditions, symptoms, use of medical and support services, and information and resource needs. Participants reported a mean of 10.75 persistent symptoms, the most common being fatigue and difficulty concentrating, with broad effects on daily functioning. Participants saw a mean of 5.92 providers for treatment of their symptoms, and 88.5% identified health care providers as a trusted source of information. Interest in research findings (60.5%) and opportunities for participation (47.5%) were moderate and varied by COVID vaccination status. Unvaccinated individuals (n = 27) also reported less trust in government sources of information, less college education, lower household income, and greater likelihood of having public insurance. Our findings suggest that individuals with long COVID experience many ongoing and complex symptoms with diverse effects on daily living; that health care providers are an important source for public health messaging about long COVID; and that unvaccinated individuals are likely to have differing needs and receptiveness to information than vaccinated individuals with long COVID.
Keywords: COVID vaccination status; information needs; long COVID; long COVID symptoms; post-COVID; survey study.