RESUMO
BACKGROUND: Self-management programs have demonstrated significant health benefits in people with musculoskeletal diseases. AIM: To examine the benefits of a tailored ankylosing spondylitis self-management program (ASSMP) delivered by trained health professionals for people with ankylosing spondylitis (AS) relative to health status, quality of life and disease activity. METHODS: ASSMP was developed within a continuous quality improvement framework following a needs assessment and focus group discussions. Formal feedback from the group after each 6 week program cycle group by questionnaire helped refine the ASSMP. Patient health status, quality of life and disease activity were assessed at multiple time points up to 12 months. RESULTS: Fifty-five percent were female; mean age 48.5 ± 15.2 years. Median time to AS diagnosis was 4 years (interquartile range: 1-10). AS disease activity Bath Ankylosing Spondylitis Global Score scores improved at 3, 6 and 12 months (P < .001). Bath Ankylosing Spondylitis Disease Activity Index improved at 6 weeks and was sustained at 3, 6 and 12 months (P < .001). The Ankylosing Spondylitis Quality of Life improved at 3, 6 and 12 months (P < .001). Bath Ankylosing Spondylitis Functional Index improved by 12 months (P < .001). Participants reported less nocturnal back pain at 6 months and was sustained at 12 months (P < .001). Patients Global Disease Activity improved by 6 months (P = .012), Multi-Dimensional Assessment of Fatigue and a Global Fatigue Index at 6 months (P = .003), Hospital Anxiety and Depression Scale - Anxiety at 12 months (P = .001), Evaluation Ankylosing Spondylitis Quality of Life at 6 months (P = .001) and Pain Self-Efficacy Questionnaire at 12 months (P = .002). CONCLUSION: This ASSMP demonstrated significant and sustained benefit in symptoms, disease activity measures and quality of life in a condition that results in significant impairment, disability and poorer quality of life. The cost effectiveness and benefit of this program should be tested.