Establishing Patient-Reported Outcomes in Pediatric Liver Transplantation
Nov
16
2024
Convention Center: Room 23
3:45 PM - 4:45 PM
Description
Pediatric liver transplant (LT) recipients navigate a lifelong journey that includes continual monitoring and challenges. Research priorities and questions in LT have traditionally been provider driven. In this community coversation, speakers present and discuss recent efforts to establish novel partnerships between a learning health system dedicated to pediatric LT (Starzl Network for Excellence in Pediatric Transplantation) and a parent-led advocacy group (Transplant Families) that aims to prepare families and providers for collaborative, patient-centered outcomes research (PCOR).Journey Maps
Presentations
3:45 PM - 4:00 PM
Nov
16
2024
San Diego, CA
PARTNER: Patient-Centered Research in Transplant—Engaging Families and Recipients
Emily Perito, MD, Presenter
Pediatrics
Transplant
4:00 PM - 4:15 PM
Nov
16
2024
San Diego, CA
PARTNER AD3vance: Patient-Centered Research in Pediatric Transplant—Engaging Families and Recipients, and Adolescent and Young Adult Advisors
James E Squires, MD, MS, Presenter
Pediatrics
Transplant
4:15 PM - 4:30 PM
Nov
16
2024
San Diego, CA
Patient-Centered Outcomes Research: Lessons Learned From the Parent Perspective
Melissa McQueen, Presenter
Pediatrics
Transplant
4:30 PM - 4:45 PM
Nov
16
2024
San Diego, CA
Patient-Centered Outcomes Research: Lessons Learned From the Patient Perspective
Jacob Skrtich, Presenter
Pediatrics
Transplant
Objectives
- Define patient-centered outcomes research (PCOR) and opportunities in liver transplant communities.
- Recognize how to engage multiple stakeholders in PCOR to foster productive, sustainable relationships and a shared understanding of patient- and community-engaged partnerships, key patient-centered outcomes, and research priorities.
- Outline how to develop the knowledge, skills, and infrastructure to support collaborative development and conduct of future PCOR.