1. Patient Affairs Committee
Spring 2017

2. Committee Projects
What Every Parent Needs to Know–new resource being developed
Companion piece to What Every Patient Needs to Know (will likely include digital component)
The needs of children who are waiting for or received organ transplants are very different from those of adult transplant patients and there are limited resources available to help inform parents.
Aligns with Strategic Goal 3: Effective educational resource could improve outcomes
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 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. This will likely be formatted as a companion piece to "What Every Patient Needs to Know," one of the most popular educational resources designed and distributed by UNOS.
This project aligns with strategic goal 3: Improve waitlisted patient, living donor, and transplant recipient outcomes: Adult caregivers (parents, legal guardians) are the primary gatekeeper of their children's health. 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 spring 2017.

3. Questions?
Kristie Lemmon, MBA Committee Chair Kimberly Uccellini, MS, MPH Committee Liaison