A5092573288- Childhood Cancer Survivors' Quality of Life
- Mechanical Circulatory Support Devices
- Cardiac pacing and defibrillation studies
- Adolescent and Pediatric Healthcare
- Heart Failure Treatment and Management
- Ethics and Legal Issues in Pediatric Healthcare
Families USA
2024-2025
House of Representatives
2023
ABSTRACT Background Parents of pediatric heart transplant (HTx) recipients have a unique perspective on the challenges associated with transition into adult care networks. We sought to assess parental perceptions HTx face daily and concerns around from Methods A 15‐item online survey was developed in partnership parent‐stakeholders administered parents September 2023. Closed open‐ended questions assessed (1) patients' diagnosis, age at transplant, (2) parents' about their child's well‐being,...
Pediatric liver transplant (LT) recipients navigate a lifelong journey that includes constant monitoring and challenges. Research priorities questions in LT have traditionally been provider driven. This project was novel partnership between learning health system dedicated to pediatric (Starzl Network for Excellence Transplantation) parent-led advocacy group (Transplant Families) aimed prepare families providers collaborative patient-centered outcomes research (PCOR). We developed 5 virtual...
Abstract The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a working group at the beginning of 2020 during COVID-19 pandemic, with aim using telehealth as an alternative medium to provide quality care high-acuity paediatric population receiving advanced cardiac therapies. An algorithm was developed determine appropriateness, educational handouts were for both patients providers, post-visit surveys collected. Telehealth...