Patients with sarcoidosis who have a lower income had worse results than those with a higher income. The causes of these discrepancies aren’t widely understood. Patients with sarcoidosis living in high- and low-median-income zip-code areas were asked to identify barriers to and facilitators of self-empowered care. Patients with biopsy-proven sarcoidosis who had had pharmacologic treatment during the previous year and were treated at a large, urban medical system’s sarcoidosis clinic were included. High- and low-median-income zip-code locations were used to divide focus groups. Grounded theory was used to study the transcriptions.
Patients residing in zip-code areas with high median incomes ($84,263; interquartile range [IQR], $79,334–$89,795) and patients living in zip-code areas with low median incomes ($27,470; IQR, $22,412–27,597) were divided into two focus groups. Patients with sarcoidosis from low- and high-income zip codes had strikingly similar experiences. Patients said sarcoidosis was a burden because of the disease’s symptoms and treatment’s side effects, making it difficult to carry out their regular activities at home or work. Providers’ apparent lack of expertise regarding sarcoidosis, communication challenges with providers, and the high expense of treatment were all reported as hurdles to care.
Patients from low-income zip codes encountered discrimination based on race and income, adding to their mistrust. To overcome these barriers, patients used self-empowerment strategies such as independent learning, self-advocacy, medication nonadherence, and alternative therapy.
Patients with sarcoidosis in both high- and low-income zip codes voiced similar concerns about sarcoidosis treatment. Patients from low-income zip codes, on the other hand, were more likely to voice concerns about racial and income discrimination. Patients in both groups used self-empowerment to overcome these obstacles, including not following prescribed therapies. The benefits of culturally and socioeconomically congruent, community-engaged interventions on the quality of life of sarcoidosis patients should focus on future research.