Introduction: Patient-centered outcomes research (PCOR), historically underutilized in transplant, offers a new strategy to improve outcomes. The Starzl Network, a learning health network (LHN) in pediatric liver transplant (LT), prepared parents/caregivers and providers for PCOR in their previous PARTNER project. Recognizing that truly patient-centered work requires direct engagement of patients, the Network expanded to PARTNER-AD³vance, preparing adolescents and young adults (AYA) to participate actively in PCOR.

Method: The Starzl Network, with LHN’s for kidney (IROC) and heart (ACTION), developed and implemented AYA-focused training on PCOR fundamentals. Young adult (age 21-28) transplant recipients were recruited to the Transplant Advocate Partners (TAP) group. TAP members participated in training sessions (virtual) with project leads to learn about PCOR, practice communication and advocacy, and develop TAP priorities for PCOR.  

Results: Twelve initial TAP participants (Male:Female 1:11) were recruited (mean age 22.8 years). We achieved diversity in recipient organ population (kidney n=3, heart n=2, liver n=5, liver/intestine n=2) and geography (East n=4, South n=2, Central n=2, West n=4). After 6 TAP sessions, (TABLE) participants ranked peer support groups and PCOR as their top priorities for TAP, and quality of life and long-term outcomes as the most important areas in transplant for them.

Conclusions: PARTNER AD³vance is the first multi-center, multi-organ effort to engage and empower AYA in pediatric transplant-focused PCOR. Our AYA-focused curriculum enabled both knowledge and skill development. In Year 2, we will refine training, recruit additional AYAs, and establish a sustainable infrastructure for AYA partnership in pediatric transplant PCOR within our partner networks.