Lifestyle and Self-Management by Those Who Live It: Patients Engaging Patients in a Chronic Disease Model

BACKGROUND: Patients pursuing organ transplantation have complex medical needs, undergo comprehensive evaluation for possible listing, and require extensive education. However, transplant patients and their supports frequently report the need for more lifestyle and self-management strategies for living with organ transplantation. OBJECTIVES: First, to explore feasibility of a successful, patient-run transplant lifestyle educational group (Transplant Living Community), designed to complement medical care and integrated into the clinical setting; and second, to report the major themes of patients\u27 and supports\u27 qualitative and quantitative feedback regarding the group. METHODS: Informal programmatic review and patient satisfaction surveys. RESULTS: A total of 1862 patient satisfaction surveys were disseminated and 823 were returned (response rate, 44.2%). Patients and their supports reported positive feedback regarding the group, including appreciation that the volunteer was a transplant recipient and gratitude for the lifestyle information. Five areas were associated with the success of Transplant Living Community: 1) a champion dedicated to the program and its successful integration into a multidisciplinary team; 2) a health care environment receptive to integration of a patient-led group with ongoing community development; 3) a high level of visibility to physicians and staff, patients, and supports; 4) a clearly presented and manageable lifestyle plan ( Play Your ACES (a) [Attitude, Compliance, Exercise, and Support]), and 5) a strong volunteer structure with thoughtful training with the ultimate objective of volunteers taking ownership of the program. CONCLUSION: It is feasible to integrate a sustainable patient-led lifestyle and self-management educational group into a busy tertiary care clinic for patients with complex chronic illnesses