Background ? Sarcoidosis is a multisystemic disease with a heterogenous course of disease. Comprehensive information about the complexity of the disease and treatment decisions are essential for improving patient knowledge and adherence to therapy.

Aims ? Aim of our study was to investigate the level and resources of information in patients with sarcoidosis, and to analyse differences in patient subgroups.

Methods ? We conducted an online survey in Germany, and three semi-structured focus group interviews. The interviews were evaluated independently by two investigators using a structured qualitative content analysis.

Results ? A total of 402 completed questionnaires were analysed (65.8% women, mean age 53 years). The majority felt well informed about their disease in general (59.4%), but 40.6% were unsatisfied due to inadequate information. The most relevant information gaps related to the future perspective (70.6%), fatigue, and diffuse pain (63.9%). Most patients received information from their treating pulmonologist (72.1%). 94% used the online resources, especially homepages of patient support groups (75.2%). Male participants more often reported being well informed about their disease, and were more satisfied with the information (p= 0.001). During the interviews, patients expressed their wish for more comprehensive information, and highlighted the importance of psychological co-therapy as well as the future perspective.

Conclusions ? A relevant proportion of patients with sarcoidosis feel inadequately informed about their own disease, particularly with regard to factors impeding quality of life such as fatigue. Efforts are needed to improve the level and quality of information.