Canadian Developmental Follow-up Practices in Children With Congenital Heart Defects: A National Environmental Scan

BACKGROUND: Developmental follow-up is central to the timely identification of delays in at-risk children. Throughout Canada, data are currently lacking on the follow-up of children with congenital heart disease (CHD) after open-heart surgery. The objective of this study was to describe current Canadian developmental follow-up practices and to explore barriers to optimal follow-up. METHODS: A cross-sectional study was implemented with health professionals involved with the developmental follow-up of children with CHD in the 8 specialized hospitals that perform pediatric open-heart surgery in Canada. A questionnaire collected descriptive information about the setting and current follow-up practices. In addition, an interview was conducted to explore what would be considered optimal developmental follow-up in Canada and identify potential barriers. RESULTS: Four of the 8 tertiary care centres had a systematic developmental follow-up program that included screening and formal evaluation. These programs were only accessible to a subset of children with CHD identified to be at higher risk. Participants described current practices as suboptimal and aimed to develop a more systematic developmental follow-up program or expand an existing one. Participants emphasized the lack of human resources, financial supports, and limited dedicated time as major barriers to offering optimal follow-up care. CONCLUSIONS: Current follow-up practices in Canada are considered suboptimal by health care specialists involved in treating children with CHD. These practices may fail to promptly identify children and adolescents with CHD who have developmental challenges. It is essential that we develop national recommendations to optimize the developmental follow-up practices in Canada for this high-risk population.