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Discrepancies in how the impact of gout is assessed in outcomes research compared to how health professionals view the impact of gout, using the lens of the International Classification of Functioning, Health and Disability (ICF)

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Abstract

The International Classification of Functioning, Disability and Health (ICF) provides a common language to understand what health means. An ICF core set, a list of ICF categories affected by a certain disease, is useful to objectify the content validity of a health status measurement. This study aims to identify the potential items of a gout specific ‘ICF core set’. A three-round Delphi exercise was conducted, using web-based questionnaires. Health professionals, specialized in gout, nominated and subsequently rated the relevance of life areas divided into ICF categories. Agreement was determined by using the UCLA/RAND criteria. Simultaneously, a systematic review of gout measure outcomes was conducted. The results of these studies were compared using the second level of the ICF categories. In the Delphi study, consensus was found for 136 relevant ICF categories. The literature study extracted 134 different ICF categories in 149 articles. Three hundred and ten were non-defined outcomes. A large number of ICF categories were deemed to be relevant for people with gout. Only 29.7 % (19/64) of the level 2 categories, deemed to be relevant by health professionals, had been assessed as relevant in at least 5 % of gout outcome studies. Conversely, 70 % (19/27) of level 2 ICF categories assessed in at least 5 % of outcome studies were deemed relevant by health professionals. These ICF codes, which are found relevant in both studies, should be considered as mandatory in further research to a validated and practical core set of ICF categories. Published gout outcomes research fails to evaluate many life areas that are thought relevant by health professionals.

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References

  1. Neogi T (2011) Clinical practice. Gout. N Engl J Med 364:443–452

    Article  CAS  PubMed  Google Scholar 

  2. Taylor WJ, Grainger R (2012) Clinical features of gout. In: Terkeltaub R, ed. Gout and other crystal arthropathies, Firstth edn. Elsevier Saunders, Philadelphia PA

    Google Scholar 

  3. Taylor WJ (2013) Measurement of outcome in gout. Indian J Rheumatol 8:S11–S15

    Article  Google Scholar 

  4. Alvarez_Hernandez E, Pelaez_Ballestas I, Vazquez_Mellado J et al (2008) Validation of the Health Assessment Questionnaire disability index in patients with gout. Arthritis Rheum 59:665–669

    Article  PubMed  Google Scholar 

  5. Taylor WJ, Colvine K, Gregory K, Collis J, McQueen FM, Dalbeth N (2008) The Health Assessment Questionnaire Disability Index is a valid measure of physical function in gout. Clin Exp Rheumatol 26:620–626

    CAS  PubMed  Google Scholar 

  6. Colwell HH, Hunt BJ, Pasta DJ et al (2006) Gout Assessment Questionnaire: initial results of reliability, validity and responsiveness. Int J Clin Pract 60:1210–1217

    Article  CAS  PubMed  Google Scholar 

  7. Singh JA, Taylor WJ, Simon LS et al (2011) Patient-reported outcomes in chronic gout: a report from OMERACT 10. J Rheumatol 38:1452–1457

    Article  PubMed  Google Scholar 

  8. World Health Organisation (2002) Towards a common language for functioning, disability and health: ICF. World Health Organisation, Geneva

    Google Scholar 

  9. Coenen M, Cieza A, Stamm TA, Amann E, Kollerits B, Stucki G (2006) Validation of the International Classification of Functioning, Disability and Health (ICF) core set for rheumatoid arthritis from the patient perspective using focus groups. Arthritis Res Ther 8:R84

    Article  PubMed  PubMed Central  Google Scholar 

  10. Cieza A, Stucki G, Weigl M, et al. ICF core sets for low back pain. J Rehabil Med 2004:69–74

  11. Dreinhofer K, Stucki G, Ewert T, et al. ICF core sets for osteoarthritis. J Rehabil Med 2004:75–80

  12. Boonen A, Braun J, van der Horst Bruinsma IE, et al. ASAS/WHO ICF core sets for ankylosing spondylitis (AS): how to classify the impact of AS on functioning and health. Ann Rheum Dis;69:102–07

  13. Cieza A, Ewert T, Ustun TB, Chatterjee S, Kostanjsek N, Stucki G (2004) Development of ICF core sets for patients with chronic conditions. J Rehabil Med 44:9–11

    PubMed  Google Scholar 

  14. Kiltz U, van der Heijde D, Boonen A et al (2015) Development of a health index in patients with ankylosing spondylitis (ASAS HI): final result of a global initiative based on the ICF guided by ASAS. Ann Rheum Dis 74:830–835

    Article  CAS  PubMed  Google Scholar 

  15. Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G (2005) ICF linking rules: an update based on lessons learned. J Rehabil Med 37:212–218

    Article  PubMed  Google Scholar 

  16. Fitch K, Bernstein SJ, Aguilar MD et al (2001) The RAND/UCLA appropriateness method user’s manual. RAND, Santa Monica, CA

    Google Scholar 

  17. Diaz_Torne C, Pou MA, Castellvi I, Corominas H, Taylor WJ (2014) Concerns of patients with gout are incompletely captured by OMERACT endorsed domains of measurement for chronic gout studies. J Clin Rheumatol 20:138–140

    Article  PubMed  Google Scholar 

  18. Lindsay K, Gow P, Vanderpyl J, Logo P, Dalbeth N (2011) The experience and impact of living with gout: a study of men with chronic gout using a qualitative grounded theory approach. J Clin Rheumatol 17:1–6

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors gratefully acknowledge the health professionals who took part in the Delphi survey: Nicola Dalbeth, Lisa Stamp, Douglas White, Till Uhlig, Peter Gow, Michael Pillinger, Fernando Perez-Ruiz, Christian Mallen, Carlo Alberto Scire, Maureen Dubreuil, Yi-Hsing Chen, Lee S Simon, Puja Khanna, Cesar Diaz-Torne, Tuhina Neogi, Paul Doghramji, Naomi Schlesinger, John FitzGerald, Ruben Burgos-Vargas, Worawit Louthrenoo, Sjef van der Linden, Laura Durcan, Gail Kerr, Leslie Harrold, Arthur Kavanaugh, Mart A.F.J. van de Laar, Tim L Jansen, Herbert Baraf, Ric Day, Geraldo da Rocha Castelar Pinheiro, Philip Helliwell, Frédéric Lioté, Liz Davis, Tony Dowell, Annelies van Ede, Alexis Ogdie, Mike Corkill, Keith Rome, Maxim Eliseev, Alexander So, Marco A Cimmino, Jiunn-Horng Chen, Martijn Gerritsen, Anne-Kathrin Tausche, Janitzia Vazquez-Mellado, Rebecca Grainger, Merie Claridge, Lorenzo Cavagna, Ana Beatriz Vargas dos Santos, Robert Terkeltaub, Brian Mandell, Hisashi Yamanaka, Kuo-Lung Lai, Everardo Alvarez Hernandez, Eliseo Pascual, Annelies Boonen, Chingtsai Lin, N. Lawrence Edwards, Hugh de Lautour, Hsiao-Yi Lin, Zufferey Pascal, Bart Spaetgens, Helen Keen, Francisca Sivera, Maarten Boers, John Sundy, Hein Janssens, Philip Riches, Chih-Wei Tseng, Hsiao Yi Lin, Angelo Gaffo, Edward Roddy, Eugene Kissin Hang-Korng Ea, and Rieke Alten.

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Authors and Affiliations

  1. Department of Rheumatology, Radboud University Medical Center, Nijmegen, The Netherlands

    Eveline M. Kool, Marieke J. Nijsten & Annelies E. van Ede

  2. VieCuri Medical Center Noord-Limburg, Venlo, The Netherlands and Scientific Institute for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands

    Tim L. Jansen

  3. Department of Medicine, University of Otago Wellington, PO Box 7343, Wellington, New Zealand

    William J. Taylor

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  1. Eveline M. Kool
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  2. Marieke J. Nijsten
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  3. Annelies E. van Ede
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  4. Tim L. Jansen
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  5. William J. Taylor
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Correspondence to William J. Taylor.

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Sources of support

EMK and MJN were supported by scholarships awarded by Radboud University (SNUF-beurs) and the international office department of the Radboud Hospital (Radboudumc-studentenbudget).

Eveline M. Kool and Marieke J. Nijsten are joint first authors.

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Kool, E.M., Nijsten, M.J., van Ede, A.E. et al. Discrepancies in how the impact of gout is assessed in outcomes research compared to how health professionals view the impact of gout, using the lens of the International Classification of Functioning, Health and Disability (ICF). Clin Rheumatol 35, 2259–2268 (2016). https://doi.org/10.1007/s10067-016-3325-7

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  • DOI: https://doi.org/10.1007/s10067-016-3325-7

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