Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 May 23:12:1340495.
doi: 10.3389/fped.2024.1340495. eCollection 2024.

Research gaps in the neurodevelopmental assessment of children with complex congenital heart defects: a scoping review

Johannes Hofer  1   2 , Marina Blum  1 , Regina Wiltsche  1 , Nikoletta Deluggi  1 , Daniel Holzinger  1   2   3 , Johannes Fellinger  1   2   4 , Gerald Tulzer  5 , Gina Blum  1 , Raphael Oberhuber  1   5   6
Affiliations

Research gaps in the neurodevelopmental assessment of children with complex congenital heart defects: a scoping review

Johannes Hofer et al. Front Pediatr. .

Abstract

Background: Children with congenital heart defects (CHD) are at risk for a range of developmental disabilities that challenge cognition, executive functioning, self-regulation, communication, social-emotional functioning, and motor skills. Ongoing developmental surveillance is therefore key to maximizing neurodevelopmental outcome opportunities. It is crucial that the measures used cover the spectrum of neurodevelopmental domains relevant to capturing possible predictors and malleable factors of child development.

Objectives: This work aimed to synthesize the literature on neurodevelopmental measures and the corresponding developmental domains assessed in children aged 1-8 years with complex CHD.

Methods: PubMed was searched for terms relating to psycho-social, cognitive and linguistic-communicative outcomes in children with CHD. 1,380 papers with a focus on complex CHD that reported neurodevelopmental assessments were identified; ultimately, data from 78 articles that used standardized neurodevelopmental assessment tools were extracted.

Results: Thirty-nine (50%) of these excluded children with syndromes, and 9 (12%) excluded children with disorders of intellectual development. 10% of the studies were longitudinal. The neurodevelopmental domains addressed by the methods used were: 53% cognition, 16% psychosocial functioning, 18% language/communication/speech production, and 13% motor development-associated constructs.

Conclusions: Data on social communication, expressive and receptive language, speech motor, and motor function are underrepresented. There is a lack of research into everyday use of language and into measures assessing language and communication early in life. Overall, longitudinal studies are required that include communication measures and their interrelations with other developmental domains.

Keywords: assessment; complex congenital heart defects (CHD); malleable predictors; neurodevelopment; social communication; speech motor.

PubMed Disclaimer

Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
PRISMA 2020 flow chart of the process of study selection.
See this image and copyright information in PMC

References

    1. Hoffman JI, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. (2002) 39(12):1890–900. 10.1016/S0735-1097(02)01886-7 - DOI - PubMed
    1. Sun R, Liu M, Lu L, Zheng Y, Zhang P. Congenital heart disease: causes, diagnosis, symptoms, and treatments. Cell Biochem Biophys. (2015) 72:857–60. 10.1007/s12013-015-0551-6 - DOI - PubMed
    1. Gerstle M, Beebe DW, Drotar D, Cassedy A, Marino BS. Executive functioning and school performance among pediatric survivors of complex congenital heart disease. J Pediatr. (2016) 173:154–9. 10.1016/j.jpeds.2016.01.028 - DOI - PMC - PubMed
    1. Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoffman JI, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. (2001) 37(5):1170–5. 10.1016/S0735-1097(01)01272-4 - DOI - PubMed
    1. Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. (2012) 126(9):1143–72. 10.1161/CIR.0b013e318265ee8a - DOI - PubMed

Publication types

LinkOut - more resources