Abstract Rationale Patients with sarcoidosis face the challenge of managing a complex, often multi-organ disease with impactful effects on their daily quality of life and uncertain disease progression. Building on prior survey findings, this follow-up study utilized focus groups to gain deeper insight into how participation in the Foundation for Sarcoidosis Research (FSR) peer-led support programs influence patients’ understanding of their health, self-efficacy, and experiences with care. Methods In August 2024, an online survey was distributed through FSR communication channels to 532 individuals with sarcoidosis, including 88 (17%) who reported participation in FSR peer-led support groups. To deepen understanding, three virtual focus groups were conducted in Spring 2025 with 10 participants of the original survey, aged 32-68 and representing varied phenotypes and disease durations. Transcribed discussions (nearly 37,000 words) were thematically analyzed to explore experiences before and after joining peer groups. Results Focus group participants described meaningful benefits from engagement in FSR peer-led support groups. Exchanges within the groups strengthened participants’ ability to self-advocate in clinical encounters. Participants reported improved understanding of sarcoidosis through access to credible information and peer learning. Discussions also supported informed decision-making around medications and therapies, helping members address side effects, barriers, and concerns regarding steroid use. Although FSR was not able to assess these topics before compared to after peer-led support group attendance, focus group participants were able to clearly identify states of disease experience and self-advocacy at the various time points. A key element of insights from the focus groups was the benefit reported from sharing of each individuals’ story with other patients. These individuals did not attend to receive support but to share their experiences to inform other members. This sentiment has been echoed by volunteer leaders when stepping up to lead support groups or other patient-to-patient support programs. Understanding that this same motivator can influence participant attendance is novel and will be utilized to strategically promote support group participation. Conclusions Peer-led support enhanced emotional well-being, disease understanding, and self-advocacy among individuals with sarcoidosis. Participants described increased confidence in communicating with clinicians and managing treatment decisions. Findings emphasize the value of peer connection in improving patient engagement and quality of life. Insights will inform FSR program strategies, including enhanced peer leader training, tailored discussion content, and expanded access to supportive networks across the sarcoidosis community. This abstract is funded by: Foundation for Sarcoidosis Research
Hoover et al. (2026) studied this question.