Research reveals a disconnect between patient expectations and care for long COVID

American Academy of Family PhysiciansSep 23 2024

Background and goal: "Long COVID" is the continuation or development of new symptoms three months after initial SARS-CoV-2 infection. For many patients with long COVID, primary care is the first point of interaction with the health care system. This study aimed to examine the expectations and experiences of primary care patients seeking treatment for long COVID.

Study approach: Researchers conducted 20 semistructured interviews between 2022 and 2023 with primary care patients from a long COVID triage clinic at the University of Utah. Using a phenomenological framework, the interviews focused on understanding and describing participants' lived experiences and perceptions through open-ended, flexible questioning. The interviews were analyzed using inductive qualitative content analysis, a method that identifies themes and patterns in the data.

Main results: 

• 19 interviews were analyzed. Participants averaged 54 years old, and 53% were female. Most participants were infected with COVID-19 for the first time in 2020 (32%) or 2021 (47%).
• Patient expectations: Patients expected their primary care practitioners to be knowledgeable about post-COVID conditions, attentive to their individual condition, and to engage in collaborative processes for treatment.
• Patient experiences: Participants perceived their interactions with practitioners as negative when they felt dismissed or discouraged. Patients also described challenges navigating the fragmented U.S. health care system when coordinating care, treatment and testing, and payment.

Why it matters: The study results highlight a disconnect between the expectations and experiences of long-COVID patients within the U.S. health care system. Despite facing numerous barriers and frustrations, patients show a desire to collaborate with clinicians to improve treatment outcomes.