title: Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations.
abstract: 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.
authors.affiliation: Deutsche Vereinigung Morbus Bechterew, Munich, Germany. E.Feldtkeller@T-Online.de
authors.forename: Ernst
authors.initials: E
authors.lastname: Feldtkeller
authors.forename: Gudrun
authors.initials: G
authors.lastname: Lind-Albrecht
authors.forename: Martin
authors.initials: M
authors.lastname: Rudwaleit
mesh_terms: D000220:Adaptation, Biological; D000223:Adaptation, Psychological; D004777:Environment; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D013167:Spondylitis, Ankylosing / Q000523:psychology / Q000628:therapy*
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