title: Lifestyle and Self-Management by Those Who Live It: Patients Engaging Patients in a Chronic Disease Model.
abstract: 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.
  
  
  
  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' and supports' qualitative and quantitative feedback regarding the group.
  
  
  
  Informal programmatic review and patient satisfaction surveys.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Bioscientist for the Transplant Institute and Senior Staff Psychologist in the Behavioral Health Department at the Henry Ford Health System in Detroit, MI. mjesse1@hfhs.org.
authors.forename: Michelle T
authors.initials: MT
authors.lastname: Jesse
authors.affiliation: Patient Advocate for the Transplant Institute at the Henry Ford Health System in Detroit, MI. erubins1@hfhs.org.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Rubinstein
authors.affiliation: Senior Staff Psychologist for the Transplant Institute at the Henry Ford Health System in Detroit, MI. aeshelm1@hfhs.org.
authors.forename: Anne
authors.initials: A
authors.lastname: Eshelman
authors.affiliation: Research Assistant for the Transplant Institute at the Henry Ford Health System in Detroit, MI. corrinne.wee@osumc.edu.
authors.forename: Corinne
authors.initials: C
authors.lastname: Wee
authors.affiliation: Research Assistant for the Transplant Institute at the Henry Ford Health System in Detroit, MI. mtankasala@gmail.com.
authors.forename: Mrunalini
authors.initials: M
authors.lastname: Tankasala
authors.affiliation: Assistant Scientist in Public Health Sciences at the Henry Ford Health System in Detroit, MI. jli4@hfhs.org.
authors.forename: Jia
authors.initials: J
authors.lastname: Li
authors.affiliation: Director of the Transplant Institute and Hepatobiliary Surgery for the Henry Ford Health System in Detroit, MI. maboulj5@hfhs.org.
authors.forename: Marwan
authors.initials: M
authors.lastname: Abouljoud
mesh_terms: D000328:Adult; D000368:Aged; D002908:Chronic Disease / Q000628:therapy*; D005260:Female; D006801:Humans; D008019:Life Style; D008297:Male; D008875:Middle Aged; D008962:Models, Theoretical; D016377:Organ Transplantation; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D012648:Self Care; D012944:Social Support; D011795:Surveys and Questionnaires