The Impact of the Unknown: Patient Experiences With Uncertainty in Sarcoidosis

Individuals with sarcoidosis face many sources of illness uncertainty, including diagnostic delays, unpredictable therapeutic efficacy and toxicity, and disease-associated morbidity and mortality. Patient perspectives on illness uncertainty in sarcoidosis have not been evaluated critically and offer an opportunity for providers to contextualize and prioritize gaps in care and patient support.

How do patients with sarcoidosis describe their lived experiences with the disease and challenges they face in receiving care?

We conducted semistructured qualitative interviews with patients with biopsy-proven pulmonary sarcoidosis receiving treatment for the disease who were seen at a tertiary sarcoidosis center of excellence. Interviews examined patient experiences of living with sarcoidosis, including their journey with diagnosis, treatment, and monitoring of disease activity. Transcripts were coded and categorized into themes and subthemes. Saturation was defined as at least 3 interviews without new information.

Twenty-five participants completed semistructured interviews. The median age was 60 years, with 64% of the participants being female and 68% identifying as Black. The impact of illness uncertainty was a shared component of their care journeys. Key themes that emerged were (1) the burden of limited disease awareness, (2) uncertainty about sarcoidosis management, and (3) the unpredictability of disease progression. Uncertainty emerged as a major challenge that contributed to delays in care, poor disease control, psychological distress, or a combination thereof.

Our findings are the first, to our knowledge, to highlight the impact of patient illness uncertainty on sarcoidosis disease outcomes and psychological distress. Individuals living with sarcoidosis may benefit by addressing the psychosocial impact of uncertainty. Individuals living with sarcoidosis may benefit significantly from targeted interventions to mitigate the impact of illness uncertainty.