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Research gaps in the neurodevelopmental assessment of children with complex congenital heart defects: a scoping
Johannes Hofer1,2, Marina Blum1, Regina Wiltsche1
1Research Institute for Developmental Medicine, Johannes Kepler University of Linz, Linz, Austria.
Insights
Children with congenital heart defects (CHD) face developmental risks. This review highlights underrepresented areas in neurodevelopmental assessments, particularly social communication and early language measures, calling for more longitudinal research.
Area of Science:
- Pediatric Cardiology
- Developmental Neuroscience
- Clinical Psychology
Background:
- Children with congenital heart defects (CHD) are susceptible to neurodevelopmental disabilities affecting cognition, executive function, self-regulation, communication, social-emotional skills, and motor abilities.
- Early and comprehensive developmental surveillance is crucial for optimizing neurodevelopmental outcomes in this population.
- Assessment tools must encompass a wide range of neurodevelopmental domains to identify predictors and modifiable factors.
Purpose of the Study:
- To systematically review and synthesize existing literature on neurodevelopmental assessment measures used in children aged 1-8 years with complex congenital heart defects (CHD).
- To identify the specific developmental domains covered by these neurodevelopmental measures.
- To pinpoint gaps in current research regarding neurodevelopmental assessments in children with complex CHD.
Main Methods:
- A comprehensive literature search was conducted using PubMed, focusing on psycho-social, cognitive, and linguistic-communicative outcomes in children with CHD.
- 1,380 papers focusing on complex CHD and reporting neurodevelopmental assessments were identified.
- Data from 78 articles employing standardized neurodevelopmental assessment tools were extracted for analysis.
Main Results:
- Cognition was the most frequently assessed domain (53%), followed by psychosocial functioning (16%), language/communication/speech production (18%), and motor development (13%).
- A significant proportion of studies excluded children with syndromes (50%) or disorders of intellectual development (12%).
- Only 10% of the reviewed studies were longitudinal in design.
Conclusions:
- There is a notable underrepresentation of data concerning social communication, expressive and receptive language, speech motor skills, and overall motor function.
- Research is lacking in the assessment of the practical, everyday use of language and early-life language and communication measures.
- Future research should prioritize longitudinal studies that integrate communication measures and explore their interrelationships with other developmental domains in children with complex CHD.
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.
