Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations.

Advice concerning behaviour and adaptations of living and working environment is considered an unmet need by patients with ankylosing spondylitis (AS). The aim of this study was to develop a core set of recommendations to be given to patients by their rheumatologists. A systematic literature research of scientific and patient-oriented literature revealed 70 raw recommendations. These recommendations were evaluated and ranked at a meeting of the Ankylosing Spondylitis International Federation (ASIF, 26 participants including 19 patients with AS, 5 rheumatologists and 2 physiotherapists from 13 countries) in November 2011. Thereafter, the 59 remaining recommendations were extensively discussed, supplemented, reworded, condensed and voted on during a meeting of local branch leaders of the AS patient organisation in Germany (Deutsche Vereinigung Morbus Bechterew, DVMB) with 80 participants (95 % of whom with AS), 2 rheumatologists and 1 occupational therapist in March 2012. The core set of final recommendations comprises (1) a general statement regarding living with AS which was considered highly important by patients and (2) the following domains: sitting position, walking, sleeping, at work, exercises, sports and recreational activities, diet and lifestyle, sexuality and pregnancy, fall prevention, car driving and advantages of membership in an AS-specific patient organisation. Most recommendations are relevant already in early disease, others concern advanced AS (e.g. fall prevention and car driving). The selected recommendations received high agreements (80-100 %). A first core set of recommendations for the behaviour and environmental adaptations of patients with AS was established under participation of many patients.