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Influence of CHDs on psycho-social and neurodevelopmental outcomes in children with Down syndrome

Published online by Cambridge University Press:  16 February 2015

Jeannie Visootsak ,
Lillie Huddleston ,
Allison Buterbaugh ,
Adrienne Perkins ,
Stephanie Sherman  and
Jessica Hunter
Jeannie Visootsak*
Affiliation:
Department of Human Genetics, Emory University, Atlanta, Georgia, United States of America Department of Pediatrics, Emory University, Atlanta, Georgia, United States of America
Lillie Huddleston
Affiliation:
Department of Human Genetics, Emory University, Atlanta, Georgia, United States of America
Allison Buterbaugh
Affiliation:
Department of Pediatrics, Emory University, Atlanta, Georgia, United States of America
Adrienne Perkins
Affiliation:
Department of Human Genetics, Emory University, Atlanta, Georgia, United States of America
Stephanie Sherman
Affiliation:
Department of Human Genetics, Emory University, Atlanta, Georgia, United States of America
Jessica Hunter
Affiliation:
Department of Human Genetics, Emory University, Atlanta, Georgia, United States of America
*
Correspondence to: J. Visootsak, MD, Department of Human Genetics, Emory University, 2165 N. Decatur Road, Decatur, GA 30033, United States of America. Tel: +1 404 778 8590; Fax: +1 404 778 8562; E-mail: Jvisoot@emory.edu
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Abstract

Objective

To evaluate the family psycho-social outcomes of children with Down syndrome and atrioventricular septal defect, and examine the impact of these variables on the child’s neurodevelopmental outcome.

Methods

This was a cross-sectional study that consisted of 57 children with Down syndrome – 20 cases and 37 controls – of ~12–14 months of age. In both groups, we assessed the development of the child, the quality of the child’s home environment, and parenting stress.

Results

Compared with the Down syndrome without CHD group, the atrioventricular septal defect group revealed lower scores in all developmental domains, less optimal home environments, and higher parental stress. Significant differences in development were seen in the areas of cognition (p=0.04), expressive language (p=0.05), and gross motor (p<0.01). The Home Observation for Measurement of the Environment revealed significant differences in emotional and verbal responsiveness of the mother between the two groups. The Parenting Stress Index revealed that the Down syndrome with atrioventricular septal defect group had a significantly higher child demandingness subdomain scores compared with the Down syndrome without CHD group.

Conclusions

The diagnosis of a CHD in addition to the diagnosis of Down syndrome may provide additional stress to the child and parents, elevating parental concern and disrupting family dynamics, resulting in further neurodevelopmental deficits. Finding that parental stress and home environment may play a role in the neurodevelopmental outcomes may prompt new family-directed interventions and anticipatory guidance for the families of children with Down syndrome who have a CHD.

Keywords

Down syndromeCHDsneurodevelopmental outcomespsychosocial
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 2 , February 2016 , pp. 250 - 256
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Copyright
© Cambridge University Press 2015 

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