Transplant Journeys in Canada: A Cross-Sectional Survey of Transplant Patients, Caregivers, and Donors.

Abstract

Those on transplant journeys must try to understand and navigate a complex healthcare system. Little is known about whether the challenges they face differ based on their individual characteristics. This study was done to understand the experiences of those on transplant journeys in Canada. Using an online 57-question cross-sectional survey developed in collaboration with a patient-advisory committee, data was captured on transplant patients, caregivers, and living donors (n = 935). Descriptive statistics and logistic regression analyses are reported. This article includes analyses not previously reported from this larger mixed-methods project. Most participants were female (70.1%), English speaking (92.6%), and white (87.8%). The top 3 concerns identified by participants included financial (42.6%), coordination of care (37.7%), and mental health (37.2%), which affected journey types, organ types, and sociodemographic groups differently. Understanding the perspectives of those going through transplant journeys is critical to inform system change. Further, identifying how individual characteristics influence transplant journeys is essential to person-centered care that creates a lasting impact on the organ donation and transplant system and health outcomes.