Volume 12, Issue 4 pp. 421-429
ORIGINAL ARTICLE

Rates of autism and potential risk factors in children with congenital heart defects

Jessica L. Bean Jaworski PhD

Corresponding Author

Jessica L. Bean Jaworski PhD

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

Correspondence Jessica L. Bean Jaworski, PhD, Baystate Medical Center, 3300 Main Street, Suite 4A, Springfield MA 01199. Email: [email protected]Search for more papers by this author
Thomas Flynn PhD, ABPP

Thomas Flynn PhD, ABPP

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Nancy Burnham RN, MSN, CRNP

Nancy Burnham RN, MSN, CRNP

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Jesse L. Chittams MS

Jesse L. Chittams MS

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Therese Sammarco MS

Therese Sammarco MS

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Marsha Gerdes PhD

Marsha Gerdes PhD

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Judy C. Bernbaum MD

Judy C. Bernbaum MD

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Robert R. Clancy MD

Robert R. Clancy MD

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Cynthia B. Solot MA, CCC-SLP

Cynthia B. Solot MA, CCC-SLP

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Elaine H. Zackai MD

Elaine H. Zackai MD

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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Donna M. McDonald-McGinn MS, LCGC

Donna M. McDonald-McGinn MS, LCGC

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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J. William Gaynor MD

J. William Gaynor MD

Cardiothoracic Surgery, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvainia, USA

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First published: 16 March 2017
Citations: 48

Funding information: This work was supported by a grant from the Fannie E. Rippel Foundation, an American Heart Association National Grant-in-Aid (9950480N), HL071834 from the National Institutes of Health, and the Daniel M. Tabas Endowed Chair in Pediatric Cardiothoracic Surgery

Abstract

Objective

Atypical development, behavioral difficulties, and academic underachievement are common morbidities in children with a history of congenital heart defects and impact quality of life. Language and social-cognitive deficits have been described, which are associated with autism spectrum disorders. The current study aimed to assess the rates of autism spectrum disorders in a large sample of children with a history of congenital heart defects and to assess medical, behavioral, and individual factors that may be associated with the risk of autism spectrum disorders.

Design

Participants included 195 children with a history of congenital heart defects, who are followed in a large-scale longitudinal study. Measures included behavioral data from 4-year-old neurodevelopmental evaluations and parent-report data from a later annual follow-up.

Results

Using established cutoffs on an autism spectrum disorder screener, children with congenital heart defects showed higher rates of “possible” autism spectrum disorders than national rates, (Chi-square Test of Equal Proportions), all Ps < .05. A stepwise variable selection method was used to create a “best prediction model” and multivariable logistic regression was used to identify variables predicting diagnostic status. Factors associated with diagnostic risk included medical (delayed sternal closure, prematurity, positive genetic findings), behavioral (cognitive, language, attention issues), and individual (socioeconomic, cultural/racial) variables. ROC analyses identified a cutoff of 7 to maximize sensitivity/specificity based on parent-reported diagnosis.

Conclusions

Risk of autism spectrum disorder screening status in children with congenital heart defects was higher than expected from population rates. Findings highlight the need for referral to a specialist to assess the presence and severity of social-communication issues and congenital heart defects population-specific screening thresholds for children with concern for autism spectrum disorders.

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