Barriers to Care Among Patients With Sarcoidosis: A Qualitative Study

Rationale Lower income patients with sarcoidosis experience worse outcomes compared to those with higher incomes. The reasons for these disparities are not well understood. Objectives To identify patient reported barriers and facilitators to optimal care among sarcoidosis patients residing in high and low median income zip codes. Methods Patients with biopsy proven sarcoidosis who received pharmacologic within the past year and were cared for in a sarcoidosis clinic of a large, urban medical system were included. Focus groups were stratified by high and low median income zip codes. Transcriptions were analyzed utilizing grounded theory. Results Five focus groups were conducted - two included patients living in zip codes with high median incomes ($84,263, IQR $79,334-$89,795) and three included patients living in zip codes with low median incomes ($27,470, IQR $22,412-27,597). Sarcoidosis patients from low-income and high-income zip codes reported remarkably similar experiences. Patients reported sarcoidosis being a burden due to the disease manifestations and adverse effects of treatment which led to compromised ability to perform their activities of daily living at home or at work. Reported barriers to care included a perceived inadequate knowledge about sarcoidosis among providers, communication barriers with providers, and high cost of treatment. Patients from low-income zip codes experienced discrimination related to race and income, which served to compound mistrust. Patients sought to overcome these barriers through self-empowerment, including independent learning, self-advocacy, medication non-adherence and use of alternative therapies. Conclusions Patients with sarcoidosis who lived in high- and low-income zip codes expressed similar overall concerns regarding sarcoidosis care. However, patients from low-income zip codes more frequently expressed concerns of racial and income discrimination. Patients from both groups addressed these barriers through self-empowerment which included not adhering to prescribed therapies. Future work should focus on the effects of culturally and socioeconomically congruent, community-engaged interventions on quality of life of patients with sarcoidosis.