Illness Experiences of Veterans Reporting Long-Term Symptoms or Health Challenges from COVID-19: Results from the VA COVID-19 Observational Research Collaboratory.

BACKGROUND: Our understanding of the illness experience of long COVID comes mostly from studies conducted among long COVID online communities and support groups or participants in cohort studies of COVID-19. OBJECTIVE: To elicit the illness experiences of patients receiving care in real-world clinical settings experiencing ongoing symptoms or health challenges from COVID-19. DESIGN AND PARTICIPANTS: Qualitative interview study conducted between July 2022 and April 2024 among 39 patients identified in health system data who indicated that they were experiencing ongoing symptoms or health challenges from COVID-19. APPROACH: Qualitative analysis of participants' post-COVID-19 illness experience from one-time semi-structured in-depth interviews. KEY RESULTS: Participants' mean age was 63.6 years (SD 13.2 years), 8 (20.5%) were identified in VA data as female, 6 (15.4%) as Black, 29 (74.4%) as White, and 2 (5.1%) as Hispanic. Interviews were conducted an average of 23 months after the initial COVID infection (range 8 to 49 months) and lasted an average of 87 (SD 27.3) minutes. Participants varied in their embrace of long COVID as an organizing framework for their post-COVID illness experience, reflecting two dominant themes: (1) Interpreting complexity: Study participants often had difficulty disentangling the long-term effects of COVID-19 from those of their other health conditions and normal aging. Their baseline health status, post-COVID illness trajectory, and expectations of aging shaped how they made sense of their illness experience; (2) Seeking answers: Though often fraught with uncertainty, participants' interpretation of their post-COVID illness experience was shaped more by clinical encounters and diagnostic evaluation than by interactions with others with relatable illness experiences. CONCLUSIONS: Our findings illuminate the challenges of applying a broadly defined diagnostic category lacking condition-specific markers in real-world clinical settings and the role of health systems and providers in the ongoing social construction of long COVID.

Duke Scholars

Author Matthew Leonard Maciejewski Population Health Sciences

Author Christopher Barrett Bowling Medicine, Geriatrics and Palliative Care