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BRIGHT pathways: recommendations to improve the developmental follow-up of children with CHD in Canada - protocol for
Marie-Eve Bolduc1, Brahmdeep S Saini2, Andrea M Patey3
1School of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada marie-eve.bolduc@mcgill.ca.
Insights
Systematic developmental follow-up is crucial for children with congenital heart disease (CHD). This study aims to create evidence-based care pathways for developmental follow-up in Canada, addressing resource limitations.
Area of Science:
- Pediatric Cardiology
- Developmental Pediatrics
- Health Services Research
Background:
- Systematic developmental follow-up is vital for children with congenital heart disease (CHD) to detect delays and optimize function.
- Current best practice guidelines recommend follow-up for high-risk CHD patients, but resource limitations pose challenges in implementation.
- Canada faces barriers in providing comprehensive neurodevelopmental follow-up programs for children with CHD.
Purpose of the Study:
- To develop evidence-based care pathway recommendations for the developmental follow-up of children and adolescents with CHD.
- To adapt these recommendations to the specific context of the Canadian healthcare system.
- To address the need for structured neurodevelopmental support in pediatric cardiology.
Main Methods:
- A two-step approach involving a narrative literature review and a nominal group process.
- Nominal group process included diverse stakeholders (patients, families, healthcare workers, policymakers) to achieve consensus on recommendations.
- Videoconferencing was used for nominal group sessions, employing a five-step consensus-building process.
Main Results:
- Consensus was reached on practice recommendations through a structured nominal group process.
- Summarized findings will be based on ideas achieving over 80% agreement among participants.
- The study will yield actionable recommendations for Canadian healthcare.
Conclusions:
- The developed recommendations will inform the creation of evidence-based care pathways for CHD developmental follow-up in Canada.
- These pathways aim to improve neurodevelopmental outcomes and support for children with CHD and their families.
- Dissemination through publications, conferences, and policy briefs will facilitate implementation and inform healthcare policy.
Introduction:
Systematic developmental follow-up for children with congenital heart disease (CHD) is essential for the timely detection of developmental delays and disorders and to put in place the supports and resources necessary to maximise function and support family well-being. Best practice guidelines recommend follow-up for children with CHD at high risk of developmental delays. However, many countries, including Canada, have faced barriers such as limitations in financial and human resources which have limited their ability to implement these important neurodevelopmental follow-up programmes. The aim of this project is to develop recommendations for evidence-based care pathways for the developmental follow-up of children and adolescents with CHD that are adapted to the Canadian health care context.
Methods:
This study includes two steps: (1) a narrative review of current literature on the developmental follow-up of children with CHD and (2) a nominal group process involving patients, families, healthcare workers, researchers, policy-makers and government representatives that will be used to achieve consensus on practice recommendations. Purposive sampling will be used to select eligible participants so that all interested parties are well represented and reflective of a variety of experiences and opinions. Two to three groups of approximately 10 participants will be held via videoconferencing. The nominal groups will consist of a five-step process that will be repeated for each topic: (1) question; (2) idea generation; (3) discussion; (4) ranking; and (5) consensus.
Analysis:
Data from the different groups will be merged. Ideas for which a consensus was reached (>80% agreement) during the meetings will be summarised.
Ethics And Dissemination:
Ethical approval was obtained from The Hospital for Sick Children, Toronto, Canada (#1000081399) and McGill University, Montreal, Canada (#25-09-006). The findings of this study will be disseminated in peer-reviewed journals and conferences, presented at local, national and international conferences and disseminated to local, provincial and national governments to inform policy.
