Patient Experiences Navigating Care Coordination For Long COVID: A Qualitative Study.

BACKGROUND: Little is known about how to best evaluate, diagnose, and treat long COVID, which presents challenges for patients as they seek care. OBJECTIVE: Understand experiences of patients as they navigate care for long COVID. DESIGN: Qualitative study involving interviews with patients about topics related to seeking and receiving care for long COVID. PARTICIPANTS: Eligible patients were at least 18 years of age, spoke English, self-identified as functioning well prior to COVID infection, and reported long COVID symptoms continued to impact their lives at 3 months or more after a COVID infection. APPROACH: Patients were recruited from a post-COVID recovery clinic at an academic medical center from August to September 2022. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis. KEY RESULTS: Participants (n=21) reported experiences related to elements of care coordination: access to care, evaluation, treatment, and ongoing care concerns. Some patients noted access to care was facilitated by having providers that listened to and validated their symptoms; other patients reported feeling their access to care was hindered by providers who did not believe or understand their symptoms. Patients reported confusion around how to communicate their symptoms when being evaluated for long COVID, and they expressed frustration with receiving test results that were normal or diagnoses that were not directly attributed to long COVID. Patients acknowledged that clinicians are still learning how to treat long COVID, and they voiced appreciation for providers who are willing to try new treatment approaches. Patients expressed ongoing care concerns, including feeling there is nothing more that can be done, and questioned long-term impacts on their aging and life expectancy. CONCLUSIONS: Our findings shed light on challenges faced by patients with long COVID as they seek care. Healthcare systems and providers should consider these challenges when developing strategies to improve care coordination for patients with long COVID.

The Impact of Long COVID on Employment and Well-Being: A Qualitative Study of Patient Perspectives.

BACKGROUND: Exploring the experiences of Long COVID patients who face challenges with employment may inform improvements in how healthcare systems can provide holistic care for this patient population. OBJECTIVE: Understand perspectives about the impact of Long COVID on employment and well-being among patients seeking healthcare for Long COVID. DESIGN: Qualitative study involving one-on-one interviews. PARTICIPANTS: Eligible participants were 18 years of age or older, spoke English, self-reported as doing well in daily life before having COVID-19, and reported that COVID-19 was still having a significant impact on their life three or more months following an acute infection. APPROACH: Participants were recruited from a post-COVID recovery clinic at an academic medical center. Interviews were conducted from August to September 2022. KEY RESULTS: Among all participants (N = 21), most described that they were not able to work at a capacity equivalent to their norm pre-COVID-19. For those who continued working after their COVID-19 infection, the effort and energy required for work left little capacity to participate in other life activities and made it difficult to attend recommended healthcare appointments. Participants reported financial impacts of changes in employment including loss of income and changes in insurance, which were compounded by high healthcare costs. Changes in employment resulted in emotional repercussions including feelings of loss of self-identity and fear of judgement at work. Participants discussed issues surrounding access to strategies to address challenges posed by the impact of Long COVID on employment, including strategies learned from healthcare providers to cope with Long COVID symptoms at work and efforts to seek disability benefits or workplace accommodations. CONCLUSIONS: Patients with Long COVID may face significant challenges due to changes in their ability to work. Healthcare providers can support these patients by connecting them to financial assistance resources, facilitating appropriate mental health treatment, and expediting workplace accommodation requests.