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Utilisation of early intervention services in infants with congenital heart disease following open-heart surgery

Published online by Cambridge University Press:  30 December 2020

Caroline West Open the ORCID record for Caroline West [Opens in a new window] ,
Sunkyung Yu ,
Ray Lowery ,
Caren S. Goldberg  and
Karen Uzark
Caroline West*
Affiliation:
Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Sunkyung Yu
Affiliation:
Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Ray Lowery
Affiliation:
Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Caren S. Goldberg
Affiliation:
Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
Karen Uzark
Affiliation:
Department of Pediatrics, University of Michigan Mott Children’s Hospital, Ann Arbor, MI, USA
*
Author for correspondence: Dr C. West, MD, MS, University of Michigan Mott Children’s Hospital, 1540 East Hospital Drive, C&W 11-715, SPC 4204, Ann Arbor, MI48104, USA. Tel: +1 412-498-3845; Fax: 1-734-936-9470. E-mail: wecaroli@med.umichedu
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Abstract

Objective:

To examine the use of early intervention services in infants with CHD after open-heart surgery and identify factors associated with receipt of services.

Study design:

Surveys were administered to caregivers of infants who underwent open-heart surgery before 1 year of age at a single institution between July, 2017 and July, 2018. Information regarding the infant’s use of early intervention services and the caregiver’s experience with the programme was obtained. Clinical data were retrieved from the medical record review. Logistic regression identified factors associated with receipt of services.

Results:

The study included 158 eligible infants. Ninety-eight caregivers (62%) completed the surveys. Of those surveyed, 53.1% of infants were currently or previously enrolled in early intervention services. Infants most frequently received physical therapy (76.9%). The majority of caregivers found services to be moderately/very helpful (92.3%) and sufficient for their child (76.9%). In the univariate analysis, single-ventricle disease, known syndrome/genetic abnormality, extracardiac anomaly, and longer intensive care and hospital length of stay were associated with receipt of services. Single-ventricle disease (p = 0.004) and known syndrome/genetic abnormality (p < 0.0001) remained independently associated with receipt of services in the multivariable analysis.

Conclusion:

Amongst infants at risk for neurodevelopmental deficits, approximately half received services after open-heart surgery. Caregivers expressed satisfaction with the programme. While infants with single-ventricle disease and a known syndrome/genetic abnormality were more likely to receive early intervention services, many at-risk infants with CHD failed to receive services. Further research is needed to identify barriers to early intervention services and promote developmental outcomes.

Keywords

CHDdevelopmental delayneurodevelopment
Type
Original Article
Information
Cardiology in the Young , Volume 31 , Issue 5 , May 2021 , pp. 786 - 791
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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Footnotes

*

Presented at the 8th Annual Scientific Sessions of the Cardiac Neurodevelopmental Outcomes Collaborative, Toronto, Ontario, 2019, Canada.

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