TY  - JOUR
PY  - 2024//
TI  - Is the level of consent to a national research registry associated with patient outcomes following traumatic spinal cord injury? A population-based study from the Rick Hansen Spinal Cord Injury Registry (RHSCIR)
JO  - American journal of physical medicine and rehabilitation
A1  - Richard-Denis, Andréane
A1  - Noonan, Vanessa K.
A1  - Tsai, Eve
A1  - Townson, Andrea
A1  - Sreenivasan, Vidya
A1  - Paquet, Jérôme
A1  - Loyola-Sanchez, Adalberto
A1  - Linassi, A. Gary
A1  - Fourney, Daryl
A1  - Christie, Sean
A1  - Barthélemy, Dorothy
A1  - Bailey, Chris
A1  - Humphreys, Suzanne
A1  - Xu, Jijie
A1  - Kurban, Dilnur
A1  - Hong, Heather A.
A1  - Mac-Thiong, Jean-Marc
A1  - Dionne, Antoine
SP  - ePub
EP  - ePub
VL  - ePub
IS  - ePub
N2  - OBJECTIVE: We examined the impact of consenting to the Rick Hansen Spinal Cord Injury Registry (RHSCIR) on outcomes: acute length of stay (LOS), in-hospital mortality, medical complications (pressure injuries and pneumonia), and the final discharge destination following a spinal cord injury (SCI) using the national RHSCIR dataset. <br><br>DESIGN: A retrospective cohort study was conducted using RHSCIR participant data from 2014 to 2019. Participants approached for enrollment were grouped into 1) PC: provided full consent including community follow-up (CFU) interviews, 2) DWC: declined CFU 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. <br><br>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 LOS, 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. <br><br>CONCLUSION: Not participating fully in RHSCIR was associated with more complications and longer hospital stays.<p />  <p>Language: en</p>
LA  - en
SN  - 0894-9115
UR  - http://dx.doi.org/10.1097/PHM.0000000000002549
ID  - ref1
ER  -