Cultural adaptation and validation of patient decision aids: a scoping review

Vanessa Chenel,1,2 W Ben Mortenson,3–5 Manon Guay,6,7 Jeffrey William Jutai,8,9 Claudine Auger1,2 1School of Rehabilitation, Faculty of Medicine, Université de Montréal, 2Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR) – Institut universitaire sur la réadaptation en déficience physique de Montréal, Centre intégré universitaire de santé et de services sociaux du Centre-Sud-de-l’Île-de-Montréal, Montreal, QC, 3Department of Occupational Science and Occupational Therapy, Faculty of Medicine, University of British Columbia, 4GF Strong Rehabilitation Centre, 5International Collaboration on Repair Discoveries, University of British Columbia, Vancouver Coastal Health Research Institute, Vancouver, BC, 6School of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 7Research Centre on Aging, Centre intégré universitaire de santé et de services sociaux de l’Estrie – Centre hospitalier universitaire de Sherbrooke, Sherbrooke, QC, 8Interdisciplinary School of Health Sciences, University of Ottawa, 9Bruyère Research Institute, Ottawa, ON, Canada Abstract: In order to promote self-determination, patients have to be actively involved with their care providers in health-care decision making, especially when such decisions involve personal preferences. Decision aids (DAs) are tools that can contribute to patient-centered decision-making processes. To benefit from previous fieldwork and avoid duplicating developmental efforts and producing many similar DAs, the adaptation of existing DAs to new cultural contexts is a resource-saving option. However, there are no guidelines on how to culturally adapt and validate DAs. This study aimed to identify and document existing procedures for the cultural adaptation and validation of patient DAs. A scoping review examined studies conducting cultural adaptation and/or validation of patient DAs. The following databases were searched in February 2016: CINAHL, EMBASE, Medline (Ovid), PASCAL, PsychINFO, and PubMed. From the 13 studies selected, 11 main procedures were identified: appraisal of the original DA, assessment of the new cultural context, translation, linguistic adaptation, cultural adaptation, usability testing, exploration of DA acceptability, test-retest reliability, content validity, con­struct validity, and criterion validity. A conceptual synthesis of these studies suggests there are four phases in the adaptation/validation process of DAs aimed at: 1) exploring the original DA and the new cultural context, 2) adapting the original DA to the new cultural context, 3) lab testing the preliminary version of the adapted DA, and 4) field testing the adapted DA in a real use context. By facilitating the adaptation and broader implementation of DAs, patients may ultimately be empowered in decision-making processes. Keywords: decision making, decision support techniques, translation, cultural adaptation, validation studies

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