PATIENT AFFAIRS COMMITTEE Regional Presentation – Fall 2012

Ongoing Committee Initiatives  Patient Notification for Living Donor Candidates  Goal: Inform living donors candidates about the resources available through the UNOS Patient Services Line at 888/  Process: Include the OPTN Contractor Patient Information Letter as part of the Living Donor Consent Process

 Path forward for Patient Notification for Living Donor Candidates:  Review of the existing Patient Information Letter to determine appropriateness for use with Living Donors  Collaborate with the Living Donor Committee on incorporating the Patient Information Letter into the Living Donor Consent Process  Process already occurs at many larger transplant hospitals Ongoing Committee Initiatives

 Teen Adherence Project  Data shows a 25-30% graft loss among year olds at 5 years post-transplant  Reflective of persons who are transplanted in their teens and early 20’s  Continue to experience graft loss into their 30’s  Significantly higher than other age groups at this point. New Initiatives

 Teen Adherence Project Goal: Develop an educational program that targets teens and young adults  Path Forward: Begin curriculum development in partnership with the Pediatric Committee and interested Pediatric Transplant Hospitals  The Program would be:  Developmentally appropriate  Contextually applicable and  Incorporate various educational modalities  Written materials, social media and Smartphone games  Include parents/family and staff New Initiatives

 Analysis of UNOS Patient Services Phone Line Data Base  More than 10 years’ of data from phone contacts is available  Analyze data to identify trends by organ with support from Dr. Amy Waterman, University of Washington- Saint Louis  Useful in the development of future educational resources for patients  Results will be shared with the transplant community New Initiatives

 What Every Patient Needs to Know  Now available in Spanish Additional Information

 Laura Ellsworth, Chair   Kristie Lemmon, Vice Chair   Freda Wilkins, Liaison  Questions?