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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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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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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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Correspondence to William J. Taylor.

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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).

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