Barriers and Facilitators to Organ Donor Registration in the U.S.: A Systematic Review

open_access
Open Access
Author:
Singh, Rohan
Area of Honors:
Health Policy and Administration
Degree:
Bachelor of Science
Document Type:
Thesis
Thesis Supervisors:
Jessica Ruth Thompson, Thesis Supervisor
Dennis Patrick Scanlon, Thesis Honors Advisor
Keywords:
organ donation
organ donor registration
donor registration
organ donor consent
transplant donation
Abstract:
PURPOSE: Despite the widespread support for organ donation in the United States, a persistent and large gap is witnessed between this support and actual registration behavior. This systematic review aims to synthesize the current literature focused on organ donor registration, with the goal of identifying characteristics across studies and their interventions which can then inform efforts to effectively increase registration behavior. METHODS: We conducted a systematic review of literature using PubMed, CINAHL, and PsycINFO. Studies were included if they assessed behavior surrounding decreased organ donor registration or if they geared an intervention towards improving donation registration. Both observational and interventional studies were included, with studies that only captured intent to donate being excluded. Articles were screened by two individuals to ensure consistency and reduce bias. Data extraction captured study design, population characteristics, intervention components, and major findings. RESULTS: A total of 46 studies met the inclusion criteria, comprised of 28 interventional studies and 18 observational studies. Interventions varied widely in design, delivery, and target populations, with focuses often placed on racial and ethnic minorities, and on DMV-based settings. Point-of-decision interventions consistently saw the strongest impact, while multi-component interventions which combined various different strategies and cues saw generally more success than one-dimensional interventions. Culturally tailoring interventions and strategies based on communities or peers also saw improved engagement within minority and historically underserved populations. Passive educational interventions showed limited impact despite improving awareness and intent. DISCUSSION: Key findings from this review indicate that improving awareness surrounding donation alone is insufficient to drive registration behavior. Interventions aligned education and awareness efforts with the opportunity to register were most impactful in affecting registration behavior. Future research efforts should put emphasis on behavior-based outcomes, with the incorporation of longer-term follow-up periods, while exploring scalable, multi-level interventional strategies to improve registration rates and reduce existing disparities.