Since the first transplant in 1954, advances in immunosuppression and the advent of living donation have improved post-transplant survival and increased the demand for organ transplantation. In 2015, 30,973 organ transplants occurred, transitioning patients from chronic disease to a “new normal” of living with post-transplant concerns, including adherence to complex medication regimens, lifestyle modification, rejection, and potential chronic health problems encompassing diabetes, cancer, hypertension, depression, and addiction.
The Transplant Living Community (TLC) at Henry Ford Transplant Institute was created as a patient-to-patient support group to address lifestyle challenges both before and after transplant. Successes of the TLC group include the creation of tools to aid with medication self-management and patient-to-patient education programs related to chronic disease management and post-transplant discharge expectations.
Using TLC as a base for a new patient/family advisory council and workgroups, this proposal will strengthen the framework for collaboration between patient/family advisors, medical professionals, and community organizations to identify which strategies have been successful in our diverse community. We also seek to create modalities to facilitate dissemination of these tools and strategies to other programs to aid with patient engagement and patient-to-patient mentoring.
Our Tier II goal is to build on our Tier I outreach and engagement success and expand our stakeholder outreach to regional groups in order to conduct a participant survey, “What I Wish I Knew,” to inform the creation of comparative clinical effectiveness research questions and then conduct a literature search on key topics from the survey data.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.