B39-03 Understanding Patient Perspectives on Fatigue in Sarcoidosis: A Qualitative Study to Inform a Mindfulness-based Intervention

Abstract

Patients with sarcoidosis consistently identify fatigue as a primary driver of morbidity. Up to 70% experience severe fatigue that limits participation in household, social, and vocational activities, yet no effective therapy currently exists. Members of the Cleveland Clinic Sarcoidosis Community Advisory Board strongly advocated for wellness and lifestyle interventions to address fatigue. A literature review identified Mindfulness-Based Cognitive Therapy (MBCT) as a promising approach, shown to improve fatigue in Dutch patients with sarcoidosis through an asynchronous web-based program. However, patient partners expressed concern that such a format would be less effective for socially disadvantaged U.S. populations. To address this gap, we conducted qualitative interviews with patients from neighborhoods with high Area Deprivation Index (ADI) scores to inform tailoring of a mindfulness-based intervention for minoritized and socially disadvantaged populations. Ten patients with sarcoidosis were recruited from a specialty clinic based on ATS diagnostic criteria, residence in a high-ADI neighborhood, and severe fatigue (Fatigue Assessment Scale ≥22). Virtual semi-structured interviews explored experiences of sarcoidosis-related fatigue, coping strategies, and perspectives on mindfulness-based interventions. Transcripts were independently coded by two researchers (LH, MM) using a grounded theory-informed approach until thematic saturation was achieved. Participants and the Community Advisory Board were invited to check the results for accuracy and validity. Participants described profound physical and emotional impacts of fatigue, often resulting in loss of identity and independence. These effects were compounded by other sarcoidosis symptoms and barriers to care. Patients reported relying on social support, adapting work routines, and practicing self-care strategies, many of which mirrored mindfulness principles. Participants viewed mindfulness as relevant and feasible, emphasizing peer interaction, disease education, shorter session lengths, and virtual delivery as key aspects of a desirable intervention. Fatigue imposes a severe and multifaceted burden on the lives of patients with sarcoidosis. Mindfulness-based approaches are acceptable and well aligned with patient-identified needs. These findings will inform development of a virtual group-based mindfulness intervention for sarcoidosis-associated fatigue. This abstract is funded by: NIMHD