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There's more to life than everyday function: the challenge of measuring social role participation in ankylosing spondylitis

Nature Clinical Practice Rheumatology volume 5, pages 46–51 (2009)Cite this article

Abstract

Symptoms and functional limitations are commonly reported primary outcome measures in ankylosing spondylitis (AS); however, participation has not been widely evaluated, as reflected by the scarcity of literature on the subject. People with AS suggest that participation in social roles (e.g. employment, leisure, and relationships with others) is a critical outcome that is often adversely affected by the sequelae of the disease and by the demands of managing them. Confusion surrounding the concept of 'social role participation' has presented difficulties in defining, developing and using participation as an outcome measure. Specifically, distinguishing participation in a social role from the performance of activities that might be associated with that role is critical for measuring participation, as the repertoire of associated activities will vary between individuals. Furthermore, considering which roles are important to individuals and evaluating their satisfaction with participating in a role at the times and in the ways they would like are also key elements of this measurement. Participation as an outcome measure takes on increased importance in diseases such as AS where, in the absence of a cure, the benefits of interventions often arise from improvements to patients' quality of life. Participation is a predictor of quality of life in diseases other than AS; therefore, evaluating social role participation, understanding the factors that affect it, and intervening to prevent or alleviate participation restrictions will be critical for people with AS.

Key Points

  • To date, research in ankylosing spondylitis has focused largely on limited aspects of social role participation, most frequently employment

  • Social role participation is an important outcome for people with ankylosing spondylitis

  • Definitional clarification is required to distinguish between activities and participation

  • Measures based on a clear definition of social role participation need to be developed and evaluated as outcomes in ankylosing spondylitis

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Figure 1: Conceptual model for evaluating the mechanisms and impact of ankylosing spondylitis, adapted from the ICF.

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References

  1. Alliance for the Canadian Arthritis Program (2005) Arthritis isn't a big deal...until you get it: ask 4 million Canadians. Report from the Summit on Standards for Arthritis Prevention and Care, November 1–2 2005, Ottawa, Ontario, Canada [http://www.arthritisalliance.ca/docs/ SAPC%20Full%20Report%2020060331%20en.pdf] (accessed 13 November 2008)

  2. WHO (2001) International Classification of Functioning, Disability and Health. Geneva: World Health Organization [http://www.who.int/classifications/ icf/en/] (accessed 13 November 2008)

  3. Badley EM (2008) Enhancing the conceptual clarity of the activity and participation components of the International Classification of Functioning, Disability and Health. Soc Sci Med 66: 2335–2345

    Article  Google Scholar 

  4. Boonen A (2006) A review of work-participation, cost-of-illness and cost-effectiveness studies in ankylosing spondylitis. Nat Clin Pract Rheumatol 2: 546–553

    Article  Google Scholar 

  5. Boonen A et al. (2001) Work status and its determinants among patients with ankylosing spondylitis. A systematic literature review. J Rheumatol 28: 1056–1062

    CAS  PubMed  Google Scholar 

  6. Barlow JH et al. (2001) Work disability among people with ankylosing spondylitis. Arthritis Rheum 45: 424–429

    Article  CAS  Google Scholar 

  7. Boonen A et al. (2002) Work status and productivity costs due to ankylosing spondylitis: comparison of three European countries. Ann Rheum Dis 61: 429–437

    Article  CAS  Google Scholar 

  8. Ward MM and Kuzis S (2001) Risk factors for work disability in patients with ankylosing spondylitis. J Rheumatol 28: 315–321

    CAS  PubMed  Google Scholar 

  9. Elyan M and Khan MA (2006) Diagnosing ankylosing spondylitis. J Rheumatol Suppl 78: 12–23

    PubMed  Google Scholar 

  10. Feldtkeller E et al. (2003) Age at disease onset and diagnosis delay in HLA-B27 negative vs. positive patients with ankylosing spondylitis. Rheumatol Int 23: 61–66

    Article  Google Scholar 

  11. Carette S et al. (1983) The natural disease course of ankylosing spondylitis. Arthritis Rheum 26: 186–190

    Article  CAS  Google Scholar 

  12. Brophy S et al. (2002) The natural history of ankylosing spondylitis as defined by radiological progression. J Rheumatol 29: 1236–1243

    PubMed  Google Scholar 

  13. Wailoo A et al. (2008) Infliximab, etanercept and adalimumab for the treatment of ankylosing spondylitis: cost-effectiveness evidence and NICE guidance. Rheumatology (Oxford) 47: 119–120

    Article  CAS  Google Scholar 

  14. Dijkers M (1997) Quality of life after spinal cord injury: a meta-analysis of the effects of disablement components. Spinal Cord 35: 829–840

    Article  CAS  Google Scholar 

  15. Schreiber D et al. (2006) Evaluating function and health related quality of life in patients treated for extremity soft tissue sarcoma. Qual Life Res 15: 1439–1446

    Article  Google Scholar 

  16. Zochling J et al. (2008) Development of a core set of domains for data collection in cohorts of patients with ankylosing spondylitis receiving anti-tumor necrosis factor-alpha therapy. J Rheumatol 35: 1079–1082

    PubMed  Google Scholar 

  17. Eurostat (2006) Employment in Europe 2006. [http://www.delsgp.ec.europa.eu/en/pdf2006/ Employment%20in%20Europe%202006_EN.pdf] (accessed 13 November 2008)

  18. Ward MM (2006) Outcomes in ankylosing spondylitis: what makes the assessment of treatment effects in ankylosing spondylitis different. Ann Rheum Dis 65 (Suppl 3): iii25–iii28

    PubMed  PubMed Central  Google Scholar 

  19. Ward MM et al. (2008) Impact of ankylosing spondylitis on work and family life: comparisons with the US population. Arthritis Rheum 59: 497–503

    Article  Google Scholar 

  20. Ozgül A et al. (2006) Effect of ankylosing spondylitis on health-related quality of life and different aspects of social life in young patients. Clin Rheumatol 25: 168–174

    Article  Google Scholar 

  21. Backman CL et al. (2007) Experiences of mothers living with inflammatory arthritis. Arthritis Rheum 57: 381–388

    Article  Google Scholar 

  22. Bickenbach JE et al. (1999) Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Soc Sci Med 48: 1173–1187

    Article  CAS  Google Scholar 

  23. Engel GL (1977) The need for a new medical model: a challenge for biomedicine. Science 196: 129–136

    Article  CAS  Google Scholar 

  24. Imrie R (2004) Demystifying disability: a review of the International Classification of Functioning, Disability and Health. Sociol Health Illn 26: 287–305

    Article  Google Scholar 

  25. van Echteld I et al. (2006) Identification of the most common problems by patients with ankylosing spondylitis using the International Classification of Functioning, Disability and Health. J Rheumatol 33: 2475–2483

    PubMed  Google Scholar 

  26. Calin A et al. (1994) A new approach to defining functional ability in ankylosing spondylitis: the development of the Bath Ankylosing Spondylitis Functional Index. J Rheumatol 21: 2281–2285

    CAS  PubMed  Google Scholar 

  27. Fries JF et al. (1982) The dimensions of health outcomes: the health assessment questionnaire, disability and pain scales. J Rheumatol 9: 789–793

    CAS  PubMed  Google Scholar 

  28. Backman CL (2006) Arthritis and pain. Psychosocial aspects in the management of arthritis pain. Arthritis Res Ther 8: 221

    Article  Google Scholar 

  29. Pollard B et al. (2006) What do osteoarthritis health outcome instruments measure? Impairment, activity limitation, or participation restriction? J Rheumatol 33: 757–763

    PubMed  Google Scholar 

  30. Wilkie R et al. (2004) Measuring the consequences of osteoarthritis and joint pain in population-based studies: can existing health measurement instruments capture levels of participation? Arthritis Rheum 51: 755–762

    Article  CAS  Google Scholar 

  31. Jette AM et al. (2002) Late life function and disability instrument: I. Development and evaluation of the disability component. J Gerontol A Biol Sci Med Sci 57: M209–M216

    Article  Google Scholar 

  32. Gignac MA et al. (2008) Understanding social role participation: what matters to people with arthritis? J Rheumatol 35: 1655–1663

    PubMed  Google Scholar 

  33. Gignac MA et al. (2006) “What do you expect? You're just getting older”: a comparison of perceived osteoarthritis-related and aging-related health experiences in middle- and older-age adults. Arthritis Rheum 55: 905–912

    Article  Google Scholar 

Download references

Acknowledgements

This work is supported by the National Research Initiative from The Arthritis Society of Canada to the Spondyloarthritis Research Consortium of Canada.

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Authors and Affiliations

  1. and EM Badley is the Director of the Arthritis Community Research and Evaluation Unit and the Head of the Division of Health Care and Outcomes Research at the Toronto Western Research Institute. AM Davis is also an Associate Professor in the Departments of Physical Therapy and Surgery, EM Badley is a Professor and MA Gignac is an Associate Professor in the Department of Public Health Science at the University of Toronto, AM Davis and MA Gignac are Senior Scientists, R Wong is a Research Coordinator, ON, Canada.,

    Aileen M Davis, Rosalind Wong, Elizabeth M Badley & Monique A Gignac

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  1. Aileen M Davis
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Correspondence to Aileen M Davis.

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The authors declare no competing financial interests.

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Davis, A., Wong, R., Badley, E. et al. There's more to life than everyday function: the challenge of measuring social role participation in ankylosing spondylitis. Nat Rev Rheumatol 5, 46–51 (2009). https://doi.org/10.1038/ncprheum0978

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