“The chameleon among diseases” - an explorative view of sarcoidosis and identification of the consequences for affected patients and relatives using qualitative interviews

INTRODUCTION: Sarcoidosis is a multisystemic disease, with the lungs being the main site of manifestation. Although the exact etiology remains unclear, both genetic and environmental factors are being discussed. Diagnostic evaluation is challenging, and the management of chronic patients and assessment of their needs proves difficult, especially in the absence of targeted therapy. Studies on sarcoidosis patients have shown that quality of life is limited even after clinically measurable parameters have resolved. The question remains how patients and their relatives perceive medical care and the diagnostic process and how these affect their well-being. METHODS: Qualitative, semi-structured interviews were conducted with patients and their relatives between September 2019 and February 2020. Interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis. Deductive hypotheses were then formed based on categories according to personal aspects, symptoms, diagnostic, daily life activity, therapy, psychological aspects and wishes. RESULTS: Fourteen patients and five relatives were included. Most patients reported subacute symptoms before the first organ-related episode. A high degree of personal initiative was required from the majority of respondents in both the diagnostic and subsequent therapeutic processes. In addition, respondents reported so-called “doctor-hopping”, a lack of specialists or contacts, and a lack of medical support. The Internet and self-help groups played a fundamental role for patients and relatives in exchanging information with other affected persons and to compensate for an existing information deficit. CONCLUSION: The results provide new insights into patients’ and relatives’ perceptions of the sarcoidosis diagnosis and treatment process. Identification of barriers such as a lack of physicians and an information deficit highlights potential targets for strategies to optimize sarcoidosis management. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-023-02866-4.