Perceptions of Transition from Pediatric to Adult Care for Youth with Chronic and Rare Diseases: A Participatory Health Research Project

Abstract

Background: Children with chronic and rare disease have challenges in transition into adult care. Purpose: This participatory health research project encouraged youth in the International Children's Advisory Network (ICAN) to get involved in research and health advocacy. The goal of this project is to understand physician perceptions of current protocols for the transition of pediatric patients with a history of childhood disease into adult care and expand future research to include the perceptions of youth in healthcare decisions. Methods: 1) A survey to investigate physician perception on existing gaps …