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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

Title: 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
Authors: Dionne, Antoine; Mac-Thiong, Jean-Marc; Hong, Heather A.; Kurban, Dilnur; Xu, Jijie; Humphreys, Suzanne; Bailey, Chris; Barthélemy, Dorothy; Christie, Sean; Fourney, Daryl; Linassi, Gary; Loyola-Sanchez, Adalberto; Paquet, Jérôme; Sreenivasan, Vidya; Townson, Andrea; Tsai, Eve; Noonan, Vanessa; Richard-Denis, Andréane
Source: American Journal of Physical Medicine & Rehabilitation ; volume 104, issue 2, page 130-137 ; ISSN 1537-7385 0894-9115
Publisher Information: Ovid Technologies (Wolters Kluwer Health)
Publication Year: 2024
Description: Objective We 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. Design 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. Results 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. Conclusions Not participating fully in Rick Hansen Spinal Cord Injury Registry was associated with more complications and longer hospital stays.
Document Type: article in journal/newspaper
Language: English
DOI: 10.1097/phm.0000000000002549
DOI: 10.1097/PHM.0000000000002549
Availability: https://doi.org/10.1097/phm.0000000000002549; https://journals.lww.com/10.1097/PHM.0000000000002549
Rights: http://creativecommons.org/licenses/by-nc-nd/4.0/
Accession Number: edsbas.84E77C3D
Database: BASE