RESUMEN
In two research projects, rheumatological patient education programmes were updated. The first step was to develop an expert consented framework for all rheumatological patient education programmes. From this, curricula and working materials for rheumatoid arthritis (RA) and axial spondyloarthritis (AS) were derived and two exemplary patient education manuals developed. A randomized controlled trail was designed for the five-hour RA basic education program. Finally, existing train-the-trainer training courses were adapted for these patient education programmes.
Asunto(s)
Artritis Reumatoide , Educación del Paciente como Asunto , Reumatología , Espondiloartritis , Artritis Reumatoide/terapia , Curriculum , Humanos , Educación del Paciente como Asunto/métodos , Ensayos Clínicos Controlados Aleatorios como Asunto , Espondiloartritis/terapiaRESUMEN
In 2015 EULAR published recommendations for patient education of people with inflammatory arthritis. The recommendations included two superior principles and eight recommendations based on the level of evidence and expert knowledge. The German translation of the recommendations was evaluated by 15 German experts. Experts graded the strength of the recommendations (SOR) on an 11 point numerical rating scale (from 0 = no agreement to 10 = total agreement). The mean score was 8,8 ± 0,49.
Asunto(s)
Artritis/diagnóstico , Artritis/terapia , Educación del Paciente como Asunto/normas , Guías de Práctica Clínica como Asunto , Reumatología/normas , Traducción , Unión Europea , Alemania , Rol del MédicoRESUMEN
OBJECTIVES: Patients with ankylosing spondylitis (AS) can contribute to a favorable disease course by their own behaviour and environmental adaptations. However, no standardized consensus recommendations on patient behavior and adaptations exist, neither internationally nor nationally. The aim of this study was to establish a core set of recommendations concerning favorable patient behavior to be given to patients with AS by rheumatologists. METHODS: An extended literature research in the scientific and patient-oriented literature revealed 70 recommendations. These recommendations were evaluated and ranked by importance at a meeting of the Ankylosing Spondylitis International Federation (ASIF, 26 participants from 13 countries) in November 2011. The remaining 59 recommendations were extensively discussed, supplemented, partially reworded, condensed and those with the highest priority were selected by consensus at a seminar of local branch leaders of the AS patient organization in Germany (Deutsche Vereinigung Morbus Bechterew) in March 2012 (80 participants, 95% patients with AS). RESULTS: The core set encompasses 1) a general statement on living with AS and 2) recommendations in the areas of sitting position, walking, sleeping, at work, exercising, sports and recreational activities, diet and life style, sexuality and pregnancy, fall prevention, car driving and membership in an AS-specific patient organization. The selected recommendations received agreement by 80-100% of the patients. Some recommendations (e.g. fall prevention and car driving) are more relevant to patients with advanced and usually longstanding disease, i.e. with advanced ankylosis or osteoporosis. CONCLUSIONS: For the first time a core set of recommendations for the behavior of patients with AS was created in collaboration with many persons affected by the disease. Patients with AS should receive these recommendations from their rheumatologists, ideally early in the disease course. The German version of this core set is presented in this article.