{
  "abstract": "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.",
  "authors": [
    {
      "affiliations": [
        "School of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada"
      ],
      "name": "Marie-Eve Bolduc"
    },
    {
      "affiliations": [
        "Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Brahmdeep S Saini"
    },
    {
      "affiliations": [
        "Department of Medicine, Quality and Safety, IWK Health Centre, Halifax, Nova Scotia, Canada"
      ],
      "name": "Andrea M Patey"
    },
    {
      "affiliations": [
        "Translational Medicine Program, SickKids Research Institute, Toronto, Ontario, Canada"
      ],
      "name": "Eric Sadiku"
    },
    {
      "affiliations": [
        "Pediatrics, BC Children’s Hospital and University of British Columbia, Vancouver, British Columbia, Canada",
        "BC Children’s Hospital Research Institute and University of British Columbia, Vancouver, British Columbia, Canada"
      ],
      "name": "Steven P Miller"
    },
    {
      "affiliations": [
        "Azrieli Research Centre of the CHU Sainte-Justine, Université de Montréal, Montreal, Quebec, Canada",
        "School of Rehabilitation, Faculty of Medicine, Université de Montréal, Montreal, Quebec, Canada"
      ],
      "name": "Marie-Noelle Simard"
    },
    {
      "affiliations": [
        "School of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada",
        "Departments of Pediatrics",
        "Neurology and Neurosurgery, McGill University, Montreal, Quebec, Canada",
        "Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada"
      ],
      "name": "Marie Brossard-Racine"
    },
    {
      "affiliations": [
        "School of Physical and Occupational Therapy, McGill University, Montreal, Quebec, Canada"
      ],
      "name": "Annette Majnemer"
    },
    {
      "affiliations": [
        "Neonatology, The Hospital for Sick Children, Toronto, Ontario, Canada"
      ],
      "name": "Linh G Ly"
    },
    {
      "affiliations": [
        "Department of Psychology, Division of Cardiology, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Renee Sananes"
    },
    {
      "affiliations": [
        "Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada",
        "Translational Medicine Program, SickKids Research Institute, Toronto, Ontario, Canada",
        "Department of Physiology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada",
        "Department of Diagnostic Imaging, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada"
      ],
      "name": "Mike Seed"
    }
  ],
  "title": "BRIGHT pathways: recommendations to improve the developmental follow-up of children with CHD in Canada – protocol for a nominal group study",
  "uid": "57fc13b4-6963-5941-aadd-14178bf87c95"
}