Are Primary Care Providers Failing Patients with Long COVID?

Elena Gardner, MPH

Credit: LinkedIn

Patients with long COVID often find that their experiences in primary care fall short of their expectations, and report feeling dismissed by providers and the challenges of navigating a fragmented healthcare system.

“For many patients with post–COVID-19 condition (PCC or ‘long COVID’), primary care is the first point of interaction with the health care system,” wrote a team of investigators led by Elena Gardner, MPH, public health researcher at the University of Utah Family and Preventative Medicine. “In principle, primary care is well situated to manage long COVID. Beyond expressions of disempowerment, however, the patient’s perspective regarding the quality of long COVID care is lacking.”

Long COVID is defined as a continuation or development of new symptoms 3 months after the initial infection, with these symptoms lasting ≥ 2 months. Although symptoms vary among patients, common complaints include fatigue (33%), concentration and memory issues (22%), shortness of breath, an influx of mental health conditions, and smell and taste disorders. To further complicate matters, the heterogeneity of conditions make long COVID both difficult to identify and difficult to consistently diagnose.

To better understand the expectations and experiences of patients with long COVID, investigators performed semistructed interviews with adult patients receiving treatment from a primary care provider who were seen at University of Utah health clinics between 2022 and 2023. Transcripts were assessed using inductive qualitative content analysis.

A total of 19 interview were conducted, including a patient population of 53% females and a mean age of 54 years. Most (94%) of patients were White, 74% were married and most received a COVID-19 diagnosis for the first time in 2020 (32%) or 2021 (47%).

Regarding expectations, patients assumed their doctors would be knowledgeable about long COVID, pay attention to their unique individual condition, and include them in the treatment process. According to patients, knowledge was proven through answering questions, such as if long COVID is considered a short- or long-term condition. However, they also understood that COVID research is at a relatively early stage. Collaboration and communication among the care team included clear communication about medications and treatment options.

Actual experiences, however, did not always meet these preconceived notions. Although some patients described their interactions as positive when providers were honest, supportive and validating, some felt dismissed and discouraged by their interaction. Some patients also reported feeling treatment decisions were questionable. Although a provider may acknowledge the symptoms, some patients felt their doctors were discouraging in other ways, such as linking the symptoms to other patient characteristics or telling them that they would not recover and “had to live with it."

Patients also mentioned feeling challenged by having to navigate the fragmented health care system in the US, particularly when scheduling care, treatment and testing, and paying for their care.

Investigators mentioned this study was one of the first qualitative analyses that exclusively sampled primary care patients living in the US. Additionally, these patients were recruited from a long COVID triage clinic, which likely includes patients who were most severely affected. However, they noted the possibility of responder bias, as these patients may have been more willing to participate in research compared with other populations. Additionally, generalizability may be limited as patients were predominantly White and female.

They encourage future studies to use patient input to create the interview guide to potentially improve patient perspectives.

“Despite the emergence of interim guidelines for primary care providers (PCPs) on the management and treatment of long COVID, patients are largely unsatisfied with their care,” investigators concluded. “PCPs and other health care professionals might increase congruence with expectations and experiences through listening, validating, and advocating for patients with long COVID.”