Research List

Pediatric Transplantation. Parents of pediatric heart transplant (HTx) recipients have a unique perspective on the challenges associated with the transition into adult care networks. This study assessed parental perceptions of the challenges pediatric HTx recipients face daily and parental concerns around the transition from pediatric care networks. A 15-item online survey was developed in partnership with parent-stakeholders and administered to parents of pediatric HTx recipients in September 2023. While parents reported mostly positive quality of life outcomes for their children (75% rated overall QoL 8 or higher out of 10), they identified ongoing concerns spanning infectious diseases, health behaviors and care management, transplant-related concerns, socialization and education, mental health, and care coordination, both day to day and around the transition into adulthood. Co-authored with the NYU Langone Transplant Institute team.

American Journal of Transplantation. Pediatric liver transplant recipients navigate a lifelong journey that includes constant monitoring and challenges. Research priorities and questions in LT have traditionally been provider-driven. This project was a novel partnership 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 aimed to prepare families and providers for collaborative patient-centered outcomes research (PCOR). We developed 5 virtual modules to teach participants about PCOR and elicit ideas for PCOR priorities and processes in pediatric LT. Participants included 240 patient partners and 133 pediatric LT providers from 16 centers over 2 years, across 20 focus groups including 5 to amplify underrepresented voices: young adults, Spanish speakers, and African Americans. Feedback was summarized to create a PCOR Roadmap, disseminated back to participants online and via webinars.

Cardiology in the Young. The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a working group at the beginning of 2020 during the COVID-19 pandemic, aiming to use telehealth as an alternative medium to provide quality care to a high-acuity paediatric population receiving advanced cardiac therapies. An algorithm was developed to determine appropriateness, educational handouts were developed for both patients and providers, and post-visit surveys were collected. Telehealth was found to be a viable modality for health care delivery in the paediatric heart failure and transplant population, with promising application in continuity of follow-up, medication titration, and patient education/counselling.

Cardiology in the Young. Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality and can be used to inform treatment. Despite the widescale use of PROs in adult cardiology, they are underutilised in paediatric cardiac care. This study describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young adult ventricular assist device population.

Pediatric Transplantation. Learning networks have emerged in medicine as a novel organizational structure that blends quality improvement, education, and research to drive rapid improvements in clinical care. This publication defines the concept of a learning network and highlights it within the field of pediatric heart failure and transplantation, with particular focus on the Advanced Cardiac Therapies Improving Outcomes Network (ACTION), a collaborative for children with heart failure and those supported by ventricular assist devices. The article describes ACTION's mission, goals, and organizational structure, along with recent initiatives including practice harmonization protocols, stroke reduction efforts, and data that supported FDA approval of newer ventricular assist devices for pediatric patients. Ultimately, learning networks like ACTION drive clinical improvement through research, quality improvement projects, patient-reported outcomes, and education, work that continues to accelerate change in practice for children with heart failure and transplant needs.

National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division. Solid organ transplantation is a lifesaving procedure for many patients with end-stage organ failure. While cutting-edge research, best practices, and evidence-based treatments can contribute a large amount of knowledge to the field, many workshop speakers reminded the audience that patients are at the center of the discourse about posttransplantation recovery and functioning. This chapter summarizes presentations and discussions from the first and third workshop sessions. Speakers in the first session provided an overview of the U.S. transplantation system, including how organs are donated and allocated, the availability of organs, outcome data, and disparities in recovery and survival rates. Patients, a caregiver, and a social worker in the third session conveyed what it is like to live with an organ transplant.

Pediatric Transplantation. Background: Learning Health Networks (LHN) have evolved within medicine over the past two decades, but their integration into transplantation has been more recent. This paper describes three LHNs in end-stage organ disease/transplantation, their common and unique features, and how their actor-oriented architecture allowed for rapid adaptation to meet the needs of their patients and practitioners during the COVID-19 pandemic. The structure and focus of the Improving Renal Outcomes Collaborative (IROC), Starzl Network for Excellence in Pediatric Transplantation (SNEPT), and the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) are reviewed, discussing the critical role of patient and family engagement, focusing on collaboration with Transplant Families.