Project 465331

One child in a hundred is born with a major birth anomaly requiring surgery. Through advances in newborn and surgical care, most of these children now survive the urgent, high-risk surgery and have a normal life expectancy - but often suffer from long-standing health problems throughout their childhood and adolescence. Very little is known about the changes in these children's health issues and needs over time, and how to optimize the services we provide to them and to their families. Our study aims to fill this gap in the literature by gathering data reported by children, youth, and their families over time, including health outcomes, experiences with care, social determinants of health, and health services use. For this purpose we will collect information from children and youth who underwent major surgery soon after birth and from their families. Data will be collected on all children ages 1-18 years who were operated for four major newborn surgical conditions between 2005 and 2022 at three Canadian centres, then continue collecting their data for three years, as many will pass through childhood, adolescence, and adulthood transitions in care. We will then analyze the data to identify linkages between the children's and families' health outcomes, experiences, and need for health services and their age, congenital anomaly, and their social determinants of health. The study will bring together experts in children's surgery, patient-centered outcomes, and health services research, and the results will be disseminated across two national pediatric research collaborations. Through the current analyses and planned large trials to be run in the database, we expect to provide a clear picture of the healthcare status and needs of growing children with congenital anomalies, and will ultimately be able to tailor the services provided to them and their families for best long-term outcomes.