Abstract Rationale Sarcoidosis is a systemic granulomatous disease that has significant morbidity and increased mortality compared to those without the disease. Current research has shown that low-income, Black, and female patients with sarcoidosis have worse outcomes compared to their counterparts, including greater delays in referral to a sarcoidosis clinic. Recognizing that delays in care are associated with worse outcomes, we posit that limited access to specialty care for sarcoidosis patients is an important determinant of these disparities. The purpose of this study was to explore how patients’ experiences with sarcoidosis influence their access to comprehensive sarcoidosis care. Methods We conducted an exploratory qualitative study (Aug-Dec 2024) of adults with biopsy-proven sarcoidosis referred to Pulmonary Medicine at The Ohio State University (OSU) to capture patient experiences and barriers to care. Eligible patients included all adult patients referred to pulmonary medicine for a diagnosis of sarcoidosis, which is equivalent to a referral to OSU’s Sarcoidosis Clinic. Participants were invited by email and phone to participate in semi-structured interviews. An interview guide was developed with sarcoidosis experts and qualitative researchers and aligned with constructs of the Consolidated Framework for Implementation Research (CFIR). Interviews were transcribed and analyzed using rapid qualitative analysis, including dual summary templating to enhance rigor, to identify patterns and themes. Results We conducted 12 interviews yielding 3 themes on patients’ access to specialized sarcoidosis care. (1) Patients with non-specific and non-prototypical findings of sarcoidosis required an attuned provider or faced a longer time to diagnosis and treatment. (2) The diagnosis of sarcoidosis is associated with considerable anxiety and uncertainty which was assuaged once patients establish care with an experienced sarcoidosis specialist. (3) Navigating the healthcare system to access specialty sarcoidosis care is fraught with multiple unique barriers. These include factors such as the ability to attend to and travel to daytime appointments, adequate insurance and financial resources, and the assistance of healthcare advocates. Conclusion Our findings indicate that limited and uneven access to sarcoidosis specialty care substantially shaped patients’ diagnostic journeys and contributed to anxiety and uncertainty. For some patients, it was the limited knowledge of the existence of sarcoidosis clinics among their providers that contributed to delays in referral. Overall, a complex network of social factors, including insurance, geographic availability, and healthcare advocates including other physicians influence a patient’s ability to access specialty care. This abstract is funded by: Path to K award from the Ohio State University College of Medicine Office of Research and the Clinical and Translational Science Institute (CTSI) through the Richard P. & Marie R. Bremer Medical Research Fund and William H. Davis Endowment for Basic Medical Research.
Thornton et al. (Fri,) studied this question.