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A Scoping Review on the Influence of Housing on Is the Level of Consent to a National Research Registry Associated With Patient Outcomes After Traumatic Spinal Cord Injury? A Population-Based Study From the Rick Hansen Spinal Cord Injury Registry
Dionne, Antoine MD; Mac-Thiong, Jean-Marc MD, PhD; Hong, Heather A. PhD; Kurban, Dilnur MSc; Xu, Jijie MSc; Humphreys, Suzanne MSc; Bailey, Chris MD; Barthélemy, Dorothy PT, PhD; Christie, Sean MD; Fourney, Daryl MD; Linassi, Gary MD; Loyola-Sanchez, Adalberto MD, PhD; Paquet, Jérôme MD; Sreenivasan, Vidya MD; Townson, Andrea MD; Tsai, Eve MD, PhD; Noonan, Vanessa PT, PhD; Richard-Denis, Andréane MD, MSc; the RHSCIR Network
Abstract
Despite the growing recognition of housing as a significant concern for individuals with a spinal cord injury/dysfunction (SCI/D), there is limited research available on this topic. This scoping review aimed to idWe examined the impact of consenting to the Rick Hansen Spinal Cord Injury Registry on outcomes: acute length of stay, in-hospital mortality, medical complications (pressure injuries and pneumonia), and the final discharge destination following a spinal cord injury using the national Rick Hansen Spinal Cord Injury Registry dataset.
A retrospective cohort study was conducted using Rick Hansen Spinal Cord Injury Registry participant data from 2014 to 2019. Participants approached for enrollment were grouped into 1) PC: provided full consent including community follow-up interviews, 2) DWC: declined community follow-up interviews but accepted minimal data collection that may include initial/final interviews and/or those who later withdrew consent, and 3) DC: declined consent to any participation. As no data was collected for the DC group, descriptive, bivariate, and multivariable regression analysis was limited to the PC and DWC groups.
Of 2811 participants, 2101 (74.7%) were PC, 553 (19.7%) were DWC, and 157 (5.6%) were DC. DWC participants had significantly longer acute length of stay, more acute pneumonias/pressure injuries, and were less likely to be discharged home than PC participants. All these associations—except pneumonia—remained significant in the multivariable analyses.
Acknowledgments
The authors thank Dr Christiana L. Cheng for her scientific advice, critical review, and proofreading of the manuscript. We also thank the RHSCIR participants and network, including all the participating local RHSCIR sites: GF Strong Rehabilitation Centre, Vancouver General Hospital, Foothills Hospital, Glenrose Rehabilitation Hospital, Royal Alexandra Hospital, University of Alberta Hospital, Royal University Hospital, Saskatoon City Hospital, Winnipeg Health Sciences Centre, Toronto Western Hospital, Toronto Rehabilitation Institute, St. Michael’s Hospital, Sunnybrook Health Sciences Centre, Hamilton General Hospital, Hamilton Health Sciences Regional Rehabilitation Centre, Victoria Hospital (London), University Hospital (London), Parkwood Hospital (London), The Ottawa Hospital Rehabilitation Centre, The Ottawa Hospital Civic Campus, Hôpital de l’Enfant Jésus, Institut de Réadaptation en Deficience Physique de Quebec, Institut de Réadaptation Gingras-Lindsay-de-Montréal, Hôpital du Sacre Coeur de Montréal, Nova Scotia Rehabilitation Centre, QEII Health Sciences Centre, Saint John Regional Hospital, Stan Cassidy Centre for Rehabilitation, St. John’s Health Sciences Centre, and L.A. Miller Rehabilitation Centre.
Data for this research/project was collected using the Global Research Platform http://www.rhigrp.net/.
Neurology data for this research/project was cleaned using the Praxis International Standards for the Neurological Classification of Spinal Cord Injuries Algorithm http://www.isncscialgorithm.com/.
The authors thank the Alberta Trauma Services Team and the Alberta Trauma Registry in providing data for the RHSCIR.