Establishing Patient-Reported Outcomes in Pediatric Liver Transplantation

Nov 16 2024
Convention Center: Room 23
3:45 PM - 4:45 PM

World Class Speakers

Emily Perito, MD
Presenter

Emily Perito, MD

University of California San Francisco
Julie Bonn, MD
Presenter

Julie Bonn, MD

Cincinnati Children's Hospital Medical Center
Melissa McQueen
Presenter

Melissa McQueen

Transplant Families
JS
Presenter

Jacob Skritch
James Squires, MD, MS
Moderator

James Squires, MD, MS

Children's Hospital of Pittsburgh
SL
Moderator

Steven Lobritto, MD

Columbia University

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

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.