The Swiss Transplant Cohort Study (STCS) identified 13 research priorities through focus group interviews with transplant patients. The priorities were assigned to four levels, addressing 1) individual patient level priorities such as medication taking, exercise and physical fitness, or dealing with financial pressure; 2) micro level priorities covering social interactions such as trustful relationships, person-centredness; 3) meso level priorities reflecting center characteristics such as organization of care; and 4) policy level priorities such as public knowledge of transplantation.
A nationwide survey subsequently assessed the relevance of these research priorities in 292 patients and 175 healthcare professionals. Comparing the two perspectives we found congruence in view of the priority ‘continuity of care’, which received the highest importance rating from both groups. However, we also observed incongruence. Patients prioritized more the focus on patient related research priorities such as emotional wellbeing, graft functioning and return to work. Professionals prioritized more research topics reflecting organizational practice pattern such as having a contact person, continuity in the care process, and education.
Our patient voice driven findings provide guidance to researchers to consider identified priorities more in future research. The STCS researchers already address some of these priorities in ongoing work. Importantly in conducting this research a continuous dialogue with patients is adamant and within the STCS we have realized this through a Patient Advisory Board that actively engages in all aspects of this nationwide cohort study.
Read the full article: https://www.frontierspartnerships.org/articles/10.3389/ti.2022.10255