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Background: Sarcoidosis is a multisystemic disease with a heterogenous course of disease. Comprehensive information about the complexity and treatment indications is essential for improving patient knowledge and adhering to therapy. Objectives: The aim of our study was to investigate the level and resources of information in patients with sarcoidosis and to analyze differences in patient subgroups including age and gender. Methods: We conducted a questionnaire-based 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 analyzed, 65.8% of participants were women, and the mean age was 53 years. The majority of patients felt well informed about their disease in general (59.4%), but 40.6% were inadequately informed. The most relevant information gaps related to the future perspective (70.6%) as well as fatigue and diffuse pain (63.9%). Most patients received information from their treating pulmonologist (72.1%). 94% used the internet, 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-care as well as the future perspective. Conclusions: A relevant proportion of patients with sarcoidosis are 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.

Background: Progressive hypoxemia is a hallmark of fibrosing interstitial lung disease (fILD). OxyHem is a simple-to-measure correlate of oxygen content. We aimed to assess whether OxyHem correlates with outcomes in fILD. Methods: The database of our center was reviewed for fILDs. OxyHem (g/dL) was calculated as Hb x fractional SaO2. Clinical and functional data with absolute declines of FVC≥10% and/or DLCO≥15% were retrospectively analysed. Predictive values were evaluated by binary logistic and Cox regression analyses with age, gender, BMI, DLCO and FVC as covariates. Results:650 fILD patients (29% IPF, 28.6% cHP, 12.4% iNSIP, 16.3% uILD, 9.2% RA-ILD, 4.3% other ILD; 63.3% male, mean age 68.4 years) were analysed. The mean follow-up period was 16.8 months. Mean FVC was 74.4%pred., and 29.3% of patients showed a FVC decline ≥10%. OxyHem (mean13.4±1.4 g/dL) was strongly related to FVC decline ≥10% (odds ratio 1.33, p=0.0002) and also an independent predictor of the first occurrence of FVC decline ≥10% (hazards ratio [HR] 1.53, p=0.003). No similar relationships were observed for DLCO decline. Mortality was analysed in the IPF subgroup, in which 31/187 patients (16.4%) died. OxyHem Conclusion: OxyHem is an independent predictor of disease progression and outcomes in fILD. Future work has to validate these findings in larger cohorts.