The origins and development of the cardiac neurodevelopment outcome collaborative: creating innovative clinical, quality improvement, and research opportunities. (November 2020)

• Record Type: Journal Article
• Authors: Marino, Bradley S.; Sood, Erica; Cassidy, Adam R.; Miller, Thomas A.; Sanz, Jacqueline H.; Bellinger, David; Newburger, Jane; Goldberg, Caren S.
• Is Part Of: Cardiology in the young. Volume 30:Number 11(2020)
• Page Start: 1597
• Page End: 1602
• Publication Date: 2020-11
• Subjects: Congenital heart disease, -- neurodevelopmental outcomes, -- psychosocial outcomes, -- quality of life, -- quality improvement; Pediatric cardiology -- Periodicals; 618.9212
• DOI: 10.1017/S1047951120003510
• Languages: English
• ISSNs: 1047-9511

Abstract

Abstract: Compared to the general population, individuals with complex congenital heart disease are at increased risk for deficits in cognitive, neurodevelopmental, psychosocial, and physical functioning, resulting in a diminished health-related quality of life. These deficits have been well described over the past 25 years, but significant gaps remain in our understanding of the best practices to improve neurodevelopmental and psychosocial outcomes and health-related quality of life for individuals with paediatric and congenital heart disease. Innovative clinical, quality improvement, and research opportunities with collaboration across multiple disciplines and institutions were needed to address these gaps. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with a described mission to determine and implement best practices of neurodevelopmental and psychosocial services for individuals and their families with paediatric and congenital heart disease through clinical, quality improvement, and research initiatives. The vision is to be a multi-centre, multi-national, multi-disciplinary group of healthcare professionals committed to working together and partnering with families to optimise neurodevelopmental outcomes for individuals with paediatric and congenital heart disease through clinical, quality, and research initiatives, intending to maximise quality of life for every individual across the lifespan. This manuscript describes the development and organisation of the Cardiac Neurodevelopmental Outcome Collaborative.