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Centre de recherche
Tuesday, October 6 2020
Press release

Shaping the life course of children with complex congenital heart disease

CHU Sainte-Justine launches an innovative program to manage children with complex congenital heart disease and promote healthy neurodevelopment

MONTREAL, October 6, 2020 – A research team at CHU Sainte-Justine has shed light on the importance of early and systematic follow-up in promoting the neurodevelopment of children with complex congenital heart defects who require surgery in the first months of life.

The results of the study conducted at the interdisciplinary neurocardiac investigation clinic (CINC) at CHU Sainte-Justine are presented today in the journal Frontiers in Pediatrics.

Congenital heart disease is the most common type of birth defect, affecting up to 1% of live births. Approximately 1 in 4 babies will develop the "complex" or "severe" form and almost half of these children will develop long-term neurodevelopmental co-morbidities, ranging in severity from mild to severe (e.g. delays or impairments in motor, language and cognitive functions, and behavioural and psychosocial maladjustment).

A research team led by Professor Anne Gallagher has demonstrated for the first time a lower prevalence of developmental delay in a group of children who benefited from an early intervention program, compared to a control group receiving standard health care. This suggests that systematic management of children with complex congenital heart disease from a very young age can have a positive impact.

Neurocardiac investigation clinic: CINC

CINC was founded in 2013 by Dr. Nancy Poirier and Dr. Lionel Carmant, following publication of monitoring recommendations by the American Heart Association (AHA) and the American Academy of Pediatrics (AAP). The AHA and AAP have recommended systematic developmental monitoring and assessment starting from the first year of life, in order to aid early diagnosis and improve neurodevelopmental prognosis in these children.

CINC is the first clinic in Canada to offer a program of systematic interdisciplinary assessments and individualized interventions beginning at 4 months of age for all infants with complex congenital heart disease.

CINC is headed by Dr. Nancy Poirier, a pediatric cardiac surgeon at CHU Sainte-Justine and co-investigator for the study, and brings together professionals from multiple backgrounds (e.g. clinical research, heart surgery, neurology, physiotherapy, occupational therapy, neuropsychology, speech therapy, nutrition, nursing), working together for the benefit of patients and their families.

"We recruited 80 children aged 3 ½ with complex congenital heart disease, half of whom were followed up at CINC, while the other half, who were born before the clinic was set up, received standard health care," says Professor Anne Gallagher, researcher at CHU Sainte-Justine, associate professor in the Department of Psychology at the Université de Montréal and holder of the Canada Research Chair in Child Neuropsychology and Brain Imaging.

"With all of these children, our interdisciplinary team conducted cognitive, motor and behavioural evaluations, as well as social-emotional and behavioural screenings, to compare the outcomes of the two groups. Our data at 3½ years are promising. We found that the children who were followed-up at CINC demonstrated better receptive language skills and tended to show better visuo-constructive abilities compared to the control group. We know that these functions are often impaired in children with complex congenital disease. So it's encouraging that the results suggest our program may have an impact on the development of these functions," continues Professor Gallagher.

From birth to school age

"While encouraging, our results at 3 ½ years remain nuanced and raise questions about the persistence and potential improvement in these benefits at school age. We believe that the impact will be more pronounced as environmental, academic and psychosocial demands increase with age. Thus, we will continue to follow these children within a larger cohort at ages 5 and 8 in order to better understand the impact of our program of systematic follow-up and individualized intervention on cognitive, motor and behavioural functioning at school age," says Professor Gallagher, who is working closely with Professor Marie-Noelle Simard, occupational therapist and co-principal researcher, in this longitudinal study.

"We firmly believe that the expertise and interdisciplinarity of the clinic, as well as the synergy between the clinical and research teams, are key factors in ensuring the long-term success of this innovative program," says Dr. Poirier.

This program may indeed have a significant impact on the clinical management of this at-risk population by providing strong arguments to convince government authorities to develop other similar clinics and sustain and improve existing ones.

CINC's position internationally

CINC is part of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), an international group created to develop and implement the best psychosocial and neurodevelopmental interventions for people with pediatric and congenital heart disease and their families.

As a participant in this initiative, CHU Sainte-Justine is gathering significant data that will contribute to a global database, thus helping to improve research and the development of guidelines for better clinical practice. Professor Gallagher and Dr. Laurence Beaulieu-Genest, pediatrician at CINC, are actively involved in the CNOC, being members of the program, publications and education committees.

About the study

The article "Impacts of an Interdisciplinary Developmental Follow-up Program on Neurodevelopment in Congenital Heart Disease: the CINC Study" was published in the journal Frontiers in Pediatrics in October 2020. The first author is Solène Fourdain, doctoral student in clinical neuropsychology research and intervention under the supervision of Anne Gallagher. The principal author is Anne Gallagher, associate professor in the Department of Psychology at the Université de Montréal, researcher at CHU Sainte-Justine and director of LIONLAB. The study was funded by the Heart and Stroke Foundation of Canada.

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About the CHU Sainte-Justine Research CentRE

The CHU Sainte-Justine Research Centre is a leading mother-child research institution affiliated with Université de Montréal. It brings together more than 210 research investigators, including over 110 clinician-scientists, as well as 450 graduate and postgraduate students focused on finding innovative prevention means, faster and less invasive treatments, as well as personalized approaches to medicine. The Centre is part of CHU Sainte-Justine, which is the largest mother-child centre in Canada. For more information, go to research.chusj.org.

CHU Sainte-Justine


Maude Hoffmann
Communications, CHU Sainte-Justine Research Centre

Media contact:

Florence Meney
Senior Advisor – Media Relations
CHU Sainte-Justine
Tel.: 514-755-2516

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Updated on 10/6/2020
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