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Adaptive Functioning in Adolescents with Congenital Heart Disease Referred for Neurodevelopmental Follow-Up

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Abstract

Objective

Limited outcome research so far suggests concerns about adaptive functioning in children with congenital heart disease (CHD). Given the importance of adaptive skills for functional independence, supporting progress in the high-risk CHD population could allow for timely identification and intervention as needed. The goal of the current study is to characterize adaptive functioning abilities in a high-risk clinical sample of adolescents with CHD.

Methods

Participants (n = 109) included adolescents (ages 12–20; mean = 14 years) with high-risk CHD (i.e., cardiac surgery < 12 months) who were clinically referred for a cardiac neurodevelopmental evaluation between 2015 and 2020. Retrospective data was retrieved from a larger clinical registry in the Cardiac Neurodevelopmental Program and included standardized measures of adaptive, intellectual, and academic abilities. Descriptive, strengths and weaknesses, and correlational analyses were completed.

Results

Functional independence in this sample was below age expectations across six of the nine adaptive skill areas. Demographic and medical risk factors were not associated with adaptive outcomes. Lower adaptive skills were associated with two-ventricle CHD, higher service utilization, lower intellectual and academic abilities, and developmental diagnoses. The sample exhibited relative strengths in communication, leisure, and health and safety, and relative weaknesses in functional academics, self-direction, social, and home living skills.

Conclusions

Findings support that adolescents with high-risk CHD typically followed by cardiac neurodevelopmental programs show delayed functional skills integral in the transition to adulthood. Avenues for supporting development of adaptive functioning skills are discussed.

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Authors and Affiliations

  1. Department of Neuropsychology, Children’s Healthcare of Atlanta, 1400 Tullie Road, NE, Atlanta, GA, 30329, USA

    Alexander Tan & Dawn Ilardi

  2. Department of Psychology, Children’s Hospital of Orange County, Orange, CA, USA

    Alexander Tan

  3. Department of Psychology, Georgia State University, Atlanta, GA, USA

    Eric S. Semmel & Meredith Bishop

  4. Division of General and Community Pediatrics, Children’s National Health System, Washington, DC, USA

    Nikita Rodrigues

  5. Department of Pediatrics, School of Medicine and Health Sciences, The George Washington University, Washington, DC, USA

    Nikita Rodrigues

  6. Department of Pediatrics, Miller School of Medicine, University of Miami, Miami, FL, USA

    Meredith Bishop

  7. Department of Rehabilitation Medicine, Emory University, Atlanta, GA, USA

    Dawn Ilardi

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  1. Alexander Tan
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  2. Eric S. Semmel
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Correspondence to Dawn Ilardi.

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Tan, A., Semmel, E.S., Rodrigues, N. et al. Adaptive Functioning in Adolescents with Congenital Heart Disease Referred for Neurodevelopmental Follow-Up. J Pediatr Neuropsychol 8, 68–78 (2022). https://doi.org/10.1007/s40817-022-00120-6

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