Patient education in rheumatology should be evidence-based. As recommended by the European League Against Rheumatism (EULAR) the outcomes of evaluation studies should be based on the goals of the education program. In Germany the goals of education programs have been described for all relevant rheumatological indications, various education programs have been published and evaluated. Our model of patient education outcomes distinguishes proximal and distal outcomes that should be used in effectiveness studies. Proximal goals include health literacy (e.g. knowledge, skills, attitudes and motivation) and empowerment. These can be directly influenced by the educational elements of a program. Distal outcomes include self-management behavior (e.g. health behavior, adherence, coping and emotion regulation), morbidity, functioning, quality of life and participation. The latter can be influenced by proximal outcomes and moderated by a number of personal and environmental factors. The results of a literature search summarize appropriate measurements for these outcomes. For distal outcomes, valid instruments exist in the German language for some rheumatological indications. To assess proximal goals there are still developmental needs. We recommend choosing proximal and distal outcomes for evaluation according to the model of patient education outcomes and to test the relationships between these outcomes.
Keywords: Empowerment; Evaluation; Patient education; Rheumatology; Self-management.