How a Diverse Research Ecosystem Has Generated New Rehabilitation Technologies: Review of NIDILRR’s Rehabilitation Engineering Research Centers

Over 50 million United States citizens (1 in 6 people in the US) have a developmental, acquired, or degenerative disability. The average US citizen can expect to live 20% of his or her life with a disability. Rehabilitation technologies play a major role in improving the quality of life for people with a disability, yet widespread and highly challenging needs remain. Within the US, a major effort aimed at the creation and evaluation of rehabilitation technology has been the Rehabilitation Engineering Research Centers (RERCs) sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. As envisioned at their conception by a panel of the National Academy of Science in 1970, these centers were intended to take a “total approach to rehabilitation”, combining medicine, engineering, and related science, to improve the quality of life of individuals with a disability. Here, we review the scope, achievements, and ongoing projects of an unbiased sample of 19 currently active or recently terminated RERCs. Specifically, for each center, we briefly explain the needs it targets, summarize key historical advances, identify emerging innovations, and consider future directions. Our assessment from this review is that the RERC program indeed involves a multidisciplinary approach, with 36 professional fields involved, although 70% of research and development staff are in engineering fields, 23% in clinical fields, and only 7% in basic science fields; significantly, 11% of the professional staff have a disability related to their research. We observe that the RERC program has substantially diversified the scope of its work since the 1970’s, addressing more types of disabilities using more technologies, and, in particular, often now focusing on information technologies. RERC work also now often views users as integrated into an interdependent society through technologies that both people with and without disabilities co-use (such as the internet, wireless communication, and architecture). In addition, RERC research has evolved to view users as able at improving outcomes through learning, exercise, and plasticity (rather than being static), which can be optimally timed. We provide examples of rehabilitation technology innovation produced by the RERCs that illustrate this increasingly diversifying scope and evolving perspective. We conclude by discussing growth opportunities and possible future directions of the RERC program

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 studie

Long-term effect of community-based continence promotion on urinary symptoms, falls, and healthy life expectancy among older women: cluster randomised trial

The study was funded by a joint collaboration between the European Research Area on Ageing2 (ERA-AGE2) programme, with contributions from the Canadian Institutes of Health Research, the Fonds de la Recherche en Santé du Québec, the Economic and Social Research Council of the UK, the Institut National de Prévention et Éducation pour la Santé de la France, and the Agence Regional de Santé Publique de Poitou-Charentes