Patient experiences navigating US healthcare with long-COVID – Part 3 of 3

Context: For many patients with long-COVID, primary care is the first point of interaction with the healthcare system. In principle, primary care is well-situated to manage long-COVID. However, beyond expressions of disempowerment, the patient’s perspective regarding the quality of long-COVID care is lacking.

Objective: This study aimed to analyze the expectations and experiences of primary care patients seeking treatment for long-COVID in an academic medical center referral clinic.

Study Design and Analysis: A phenomenological approach guided this analysis due to the exploratory nature of the lived experience of long-COVID. We developed an interview guide based on a literature review and clinician observations. Transcripts were analyzed using inductive qualitative content analysis.

Setting or Dataset: The setting was an academic medical institution in the Mountain West. We de-identified and transcribed the recorded interviews.

Population Studied: Using purposive sampling from a long-COVID clinic, we conducted semi-structured interviews with English-speaking, adult primary care patients describing symptoms of long-COVID.

Intervention/Instrument: n/a

Outcome Measures: Description of patient experiences navigating healthcare from primary care to specialist.

Results: We report results from 19 interviews (53% female, mean age = 54). Patients expected their primary care providers (PCPs) to be knowledgeable about long-COVID, attentive to their individual condition, and engaged in collaborative processes for treatment. Patients described two areas of experiences. First, interactions with providers were perceived as positive when providers were honest and validating and negative when patients felt dismissed or discouraged. Second, patients described challenges navigating the US healthcare system when coordinating care, treatment and testing, and payment.

Conclusions: Primary care patient’s experiences seeking care for long-COVID are incongruent with their expectations. Patients overcome barriers at each level of the healthcare system and are frustrated by the challenges. PCPs and other providers might increase congruence with expectations and experiences through listening, validating, and advocating for patients with long-COVID.