1. Patient Affairs Committee
Fall 2017
My name is ___________________ and I am your Regional representative from the Patient Affairs Committee. Today I want to briefly update you on the current Patient Affairs Committee activities.

2. Committee Projects
What Every Parent Needs to Know–available September 2017
Needs of children who are waiting for or received organ transplants are very different from those of adult transplant patients
Limited resources available to inform parents
May include a digital component
PAC updated an educational resource called What Every Patient Needs to Know, most recently published in However, the PAC noted the needs of children who have organ and tissue transplants are very different from those of adult transplant patients. There are limited resources currently available tailored to the specific needs and concerns of parents of pediatric candidates. Currently available resources may be too specific, or too broad. Resources available at pediatric transplant centers provide may be center-specific, and advocacy or nonprofit organizations that support this population may be condition-or organ-specific. General information available to parents of children with a medical condition may be too broad or not applicable for the very specific pediatric transplant patient population. In addition, centers or non-profits may not have the capital to publish resources both digitally and in print, thus reducing access to this information. The Patient Affairs Committee (PAC) is developing a resource for adult caregivers of pediatric transplant candidates and recipients entitled What Every Parent Needs to Know. This is being developed as a companion piece to What Every Patient Needs to Know, one of the most popular educational resources designed and distributed by UNOS.
Developing a resource specifically tailored to this group may improve pediatric outcomes by increasing transplant literacy and empowering caregivers with information to effectively advocate for their child.
A workgroup, comprised of members from PAC, the Transplant Coordinators Committee, the Pediatrics Committee, as well as several external experts, are currently drafting content. The PAC plans to complete and distribute this resource by late summer 2017.

3. Committee Projects
Improving Patient Understanding of the Waitlist
Majority of UNOS Patient Services Hotline calls pertain to waiting list questions:
Where am I on the waitlist?
What's my status?
Am I active?
Formal requests to verify listing
Waitlist criteria
PAC is developing educational resources for patients and transplant programs
Patients or their caregivers are sometimes unaware of, or need to clarify, their listing status, either because it was initially unclear, or because of a change in status. Scenarios that confuse patients include being made inactive (for a variety of reasons); policy changes that affect listing status, multiple organ listing, multiple center listing, center-to-center transfers, and pending confirmation of listing. In 2016, UNOS Patient Services responded to 4,046 patients, family members, friends, potential donors and medical professionals. These inquiries resulted in the fulfillment of 8,588 requests for information or resources, 3,890 of which were specific to policy. Of those calls, 86% pertained to the waiting list, waiting list criteria, multiple listing, rank on the list, time reinstatement/transfer, or listing verification. The Patient Affairs Committee (PAC) is developing education for potential transplant candidates and transplant programs to help educate patients on the waiting list.

4. Questions?
Kristie Lemmon, MBA Committee Chair Kimberly Uccellini, MS, MPH Committee Liaison
Thank you for your continued support of the Patient Affairs Committee initiatives and I look forward to working with you in the future.