Poster (Knowledge Generation) ID 2001062

Abstract

Background/objectives Research participation for individuals with spinal cord injury (SCI) is important to develop and receive promising interventions. It has been suggested that consenting to participate may also be associated with improved long-term outcomes. The objectives of this study are twofold and consisted of 1) verifying whether consenting to participate in a national SCI registry is associated with improved outcomes, and 2) determining predictors of enrolling in the registry. Methods/overview This population-based retrospective cohort study was performed on 3854 individuals with acute traumatic SCI approached to participate in the Canadian patient registry (Rick Hansen SCI Registry) between 2014 and 2019. The status of consent (consent vs. declined/withdrew) consisted in the main independent variable. Outcomes included length of stay, in-hospital mortality, discharge destination, occurrence of complications. Multivariable analyses were performed to identify predictors of consenting and its association with each outcome, while accounting for important covariables (demographic-, trauma- and institution-related). Results 2998 individuals provided consent and 856 individuals declined/withdrew. Older age at injury and living farther away was associated with decreased likelihood for enrollment. While adjusting for covariables, declining participation was associated with increased acute length of stay, higher incidence of acute complications during acute care and decrease likelihood of being discharged home. Conclusions Approximately 20% of individuals declined participation in a national registry following an acute SCI, particularly elderly individuals and those living away from the hospital. It is possible that engagement in care and/or care delivery was altered for these individuals, leading to poorer patient outcomes. Enhanced opportunities should be given to subgroups not inclined to participate in research to optimize inclusivity in care delivery, therefore improving outcomes.