Patient Affairs Committee Fall 2012

Ongoing Committee Initiatives OPTN Patient Notification Bylaw The bylaw currently applies to potential recipients only Goal: Inform living donors and potential living donors about resources available through the UNOS Patient Services Line Ongoing Initiatives The patient affairs committee continues to focus on patient notification and what’s required in the patient notification bylaw. The bylaw currently applies only to transplant recipients. The Committee is interested in insuring that living donors as well have access to the resources they need. One of those resources of potential help is available through the toll-free UNOS Patient Services Line.

Ongoing Committee Initiatives OPTN Patient Notification Bylaw Currently reviewing the OPTN Contractor’s Patient Information Letter which contains patients services line information to determine if it will be a helpful resource to living donors Path forward is to approach the OPTN/UNOS Living Donor Committee with this issue Ongoing Initiatives At this time, the Committee is reviewing the OPTN Contractor Patient Information Letter which includes information about the toll-free patient services line—to determine if the letter would be appropriate to send to potential living donors. Depending upon the outcomes of the November OPTN/UNOS board meeting in November—the committee will approach the living donor committee about sending the letter to potential living donors to inform them of the toll-free patient information line.

New Committee Initiatives Teen/Young Adult Adherence (11-34 year olds) 1 year post-transplant graft survival higher than other groups 5 years post-transplant: higher rate of graft loss - 25-30% Goal: reduce incidence of graft loss among 11-34 year olds New Committee Initiatives Members of the Committee expressed concern regarding the challenges of consistent adherence to posttransplant follow-up among transplant recipients who are teens and young adults, that is ages 11-34 years. A review of the available data showed a higher rate of graft survival among this age group, in comparison to other age groups at 1 year post transplant. Further study, however, showed a markedly higher rate of graft loss at 5-years post-transplant. The Committee completed a thorough review of the literature and found that their concerns were borne out in the available research. This data was also supported by anecdotal stories from both recipients and parents of recipients on the Committee. Based upon input from available data, current research and personal experiences from Committee Members, the Committee decided to move forward in developing a comprehensive education tool that targets teens and young adults in the importance of adherence to their post-transplant follow-up care and routines.

New Committee Initiatives Teen/Young Adult Adherence (11-34 year olds) Develop a comprehensive patient education tool: Developmentally appropriate Contextually applicable Incorporates various learning modalities Offers a variety of delivery options OPTN/UNOS Pediatric Committee will provide content expertise New Committee Initiatives The Committee is currently in the beginning stages of developing curriculum which will be the foundation for resources used in each educational modality. The Pediatric Committee has agreed to partner in providing the content expertise. The Committee will utilize Pediatric Transplant Hospitals to preview and pilot each component of the program. It is anticipated that this will be a multi-year project. The committee wants to make sure that the educational resources it develops to promote adherence to their post-transplant regimen among 11 to 34 year olds is developmentally appropriate and able to be applied among members of that age group. For those reasons, the committee has decided that the educational tools it develops will include written materials as well as social media and smart phone games to reach 11–34-year-olds. The materials also will include parents, family members and health-care team. Currently, the committee is beginning to develop its overall curriculum, which will provide the foundation for the resources used with each tool. In addition, the OPTN/UNOS pediatric committee has agreed to assist in providing content expertise. The committee also plant to call upon member pediatric transplant hospitals to preview and pilot each component of the program. It is anticipated that developing and making available this education program will be a multiyear project.

New Initiatives Analysis of UNOS Patient Services Phone Line Data Base More than 10 years’ of data from contacts Analyze data to identify trends by organ Useful in the development of future educational resources for patients The Committee is interested in determining whether educational needs vary among transplant candidates and their families by organ. The Committee has partnered with Dr. Amy Waterman of Washington University, Saint Louis MO, to analyze the information available in the UNOS Patient Services Phone Line Database, to identify trends. Those data trends by organ might be useful in developing future resources, especially those that would support the UNOS What Every Patient Needs to Know series. Upon completion of the analysis, results will be presented the Patient Affairs Committee and the larger transplant community.

Questions? Laura Ellsworth, Chair Laura.Ellsworth@ppvotesNW.org Kristie Lemmon, Vice Chair Kristie.Lemmon@gmail.com Freda Wilkins, Liaison Freda.Wilkins@unos.org