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

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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.

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Acknowledgments

We like to thank all AS patients, rheumatologists and physical and occupational therapists who participated in the two meetings, for contributing to the core set of recommendations.

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Correspondence to Ernst Feldtkeller.

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Feldtkeller, E., Lind-Albrecht, G. & Rudwaleit, M. Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations. Rheumatol Int 33, 2343–2349 (2013). https://doi.org/10.1007/s00296-013-2727-y

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