Original Article Canadian Developmental Follow-up Practices in Children With Congenital Heart Defects: A National Environmental Scan Marie-Eve Bolduc, MSc, a,b Janet E. Rennick, PhD, c,d,e Isabelle Gagnon, PhD, a,e Annette Majnemer, PhD, a,e,f and Marie Brossard-Racine, PhD a,b,e,f a School of Physical and Occupational Therapy, McGill University, Montr eal, Qu ebec, Canada b Advances in Brain and Child Development Research Laboratory, Research Institute of the McGill University Health Centre, Montr eal, Qu ebec, Canada c Department of Nursing, The Montreal Children’s Hospital, McGill University Health Centre, Montr eal, Qu ebec, Canada d Ingram School of Nursing, McGill University, Montr eal, Qu ebec, Canada e Department of Pediatrics, McGill University, Montr eal, Qu ebec, Canada f Department of Neurology and Neurosurgery, McGill University, Montr eal, Qu ebec, Canada ABSTRACT Background: Developmental follow-up is central to the timely identi- fication 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 pro- fessionals 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. R ESUM E Contexte : Le suivi d eveloppemental est essentiel afind’identifier rapidement les retards chez les enfants à risque. Il n’existe actuelle- ment pas de donn ees sur le suivi des enfants atteints d’une car- diopathie cong enitale ayant n ecessit e une intervention chirurgicale à cœur ouvert. L’objectif de cette etude consistait à d ecrire les pratiques actuelles de suivi d eveloppemental et à explorer les obstacles à un suivi optimal au Canada. M ethodologie : Une etude transversale a et e men ee auprès de pro- fessionnels de la sant e assurant le suivi du d eveloppement d’enfants atteints de cardiopathie cong enitale dans huit hôpitaux sp ecialis es qui pratiquent des chirurgies à cœur ouvert au Canada. Un questionnaire a permis de recueillir des renseignements descriptifs sur les etablissements et les pratiques actuelles de suivi. De plus, une Children and adolescents with congenital heart disease (CHD) are at high risk for developmental delays. 1-3 These delays can affect various developmental domains, such as cognitive, language, psychosocial, and motor abilities, to different degrees based in part on the complexity of the CHD. 1-4 Although approximately 10% of children with less complex forms of CHD (eg, atrial septal defect and ven- tricular septal defect) experience persisting developmental impairments, delays are documented in up to 50% of the children with more complex CHD (eg, tetralogy of Fallot, coarctation of the aorta, transposition of the great arteries, and single functional ventricle). 4 Some of these develop- mental challenges will become evident in early childhood, but others, such as impaired executive functions and learning, become apparent only as the child gets older or during adolescence. 1,4,5 Developmental follow-up practices for at-risk populations include surveillance, screening, and/or the formal evaluation of developmental domains and activity limitations. 6 Devel- opmental surveillance is a flexible and longitudinal process that involves identifying and documenting the presence of risk factors, as well as the collecting of parent’s concerns over time. 6 Developmental screening typically relies on short, validated parental questionnaires that can be used on their own or to further assess areas of concerns identified during the developmental surveillance. 6 Finally, formal developmental CJC Pediatric and Congenital Heart Disease 1 (2022) 3e10 Received for publication October 29, 2021. Accepted November 5, 2021. Corresponding author: Dr Marie Brossard-Racine, Advances in Brain and Child Development Research Laboratory, Research Institute of the McGill University Health Centre, 5252 boulevard de Maisonneuve-3F.46, Montr eal, Qu ebec H4A 3S5, Canada. Tel.: 1-514-934-1934. E-mail: [email protected] https://doi.org/10.1016/j.cjcpc.2021.11.002 2772-8129/Ó 2021 Published by Elsevier Inc. on behalf of the Canadian Cardiovascular Society. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
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