[Sarcoidosis in Germany. Analysis of a questionnaire survey in 1992 of patients of the German Sarcoidosis Group]

Abstract

In 1992, we performed a questionnaire study in patients, who are organized in the German Sarcoidosis Self-help group. The aim of our study was to analyze the state of diagnosis and therapy of sarcoidosis. In addition, patients were asked for their proposals to the physicians. We obtained valid answers from 651 patients. A high percentage of incorrect first diagnosis (in 37% as tuberculosis) seemed to be dependent on the insufficient use of bronchologic techniques and on the fact that in 19% of patients diagnosis was established only by chest x-ray. The diagnostic delay was estimated by the difference between the occurrence of the first clinical symptoms or x-ray findings and the final diagnosis of sarcoidosis and was on average (+/- SD) 2 +/- 5 years. Extrapulmonary manifestations were reported in 47% but histologically proven only in 30% of patients. 95% of treated patients had cortisone therapy, the median duration of therapy was 3.9 years. 19% of the patients underwent so-called alternative therapy concept (mostly immunostimulation) after lack of sufficient effect of cortisone treatment on symptoms and/or radiologic features. 12% of the patients were not treated at all. Familiar associations of sarcoidosis were reported by 49 patients. The patients asked for more research, more exchange of information, better education of students and physicians on this field and more interdisciplinary contacts.