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.

Ankylosing spondylitis self-help organisations – do members differ from non-members?

“…Recently, a core set of recommendations for patient behaviour and adaptations has been developed by a group of AS patients and physicians under the umbrella of the AS International Federation (ASIF) [5]. Advantages of being a member in a disease-specific patient organisation are claimed in this core set, yet these presumed advantages reflect rather patients' experiences and believes and were not backed by scientific evidence based on well controlled studies [5].…”

“…Drug treatment of predominantly axial manifestations includes non-steroidal anti-inflammatory drugs (NSAIDs) and tumor necrosis factor alpha (TNF␣)-blocking agents (TNF-blockers) [2]. Patient education and regular exercise (in a group or individually at home) are regarded as the cornerstone of non-pharmacological treatment [3][4][5]. According to the Assessment of SpondyloArthritis international Society (ASAS) and European League Against Rheumatism (EULAR) recommendations [4], membership in a patient self-help organisation "may be useful" in the management of AS; however, the evidence for this recommendation is weak [6].…”

Relationship between diet and ankylosing spondylitis: A systematic review

“…A core set of recommendations for patients with AS proposed by Feldtkeller et al (19) advises a reduction in meat consumption and increase in the consumption of fish and vegetarian meals. In addition, it is recommended that sufficient vitamin D and calcium intake are important to prevent osteoporosis.…”

“…Although some publications have considered the evidence linking AS with diet, there have been no systematic evaluations of the evidence (14)(15)(16)(17)(18)(19).…”

Experience of etanercept treatment in juvenile ankylosing spondyloarthritis

“…Цель лечения состоит в подавлении воспалительной и иммунологи-ческой активности процесса, купировании системных проявлений и суставного синдрома, сохранении функ-циональной способности суставов, предотвращении или замедлении деструкции суставов, инвалидизации пациентов, а также в достижении ремиссии, повышении Клиническое наблюдение качества жизни больных при минимальных побочных эффектах лечения [4][5][6].…”