Introduction The Deutsche Rheuma-Liga (DRL) is a patient organisation with about 280 000 members. Its aim is the improvement of the living situation of the approximately 20 million people in Germany that suffer from rheumatic diseases.
Objective In order to evaluate strengths and weaknesses of the DRL, a survey amongst members and non-members suffering from rheumatic diseases was conducted.
Methods Members of the DRL were sent questionnaires by mail between November 2013 and January 2014. Non-members were recruited by an external institute via advertisements and/or questionnaires placed in medical practices during the same time period.
Results 325 (members [M]; 76% female, 24% male) and 200 (non-members [NM]; 70% female, 30% male) questionnaires were evaluated. The most frequent diagnosis was osteoarthritis (M: 62%, NM: 76%), followed by rheumatoid arthritis (M: 39%, NM: 22%), fibromyalgia (M: 23%, NM: 11%) and osteoporosis (M: 19%, NM: 27%). A significantly higher percentage of non-members (18%) compared to members (6%) rated the severity of their disease as mild. The main source of disease-related information for non-members is the general practitioner (65%), followed by orthopaedic specialists (61%), whereas for members, the Deutsche Rheuma-Liga is just as important (64%) as the general practitioner (66%). The main reason that patients apply for membership is the availability of special training programs offered by the DRL (76%). In total, 74% of the members assessed the services of the DRL as good or very good (20% neutral). The main reasons that patients do not become a member of the DRL are the self-assessed mildness of the disease (40%) and a lack of knowledge about the existence of the DRL (22%).
Conclusion The DRL is perceived very well by its members. The main future goal of the DRL must be to intensify collaboration with general practitioners and orthopaedic specialists in order to raise its profile and, by this, to guarantee best possible, up-to-date treatment for patients. In line with this, the DRL must disseminate information among non-members that prophylactic training programs are particularly important at a mild stage of symptom severity, in order to prevent aggravation of their disease.
Disclosure of Interest None declared