Implementing neurodevelopmental follow-up care for children with congenital heart disease: A scoping review with evidence mapping.
Bridget R Abell, Karen Eagleson, Benjamin Auld and 6 others
PMID 37421232WHAT IT FOUND
Structured neurodevelopmental follow-up for children with congenital heart disease is highly variable and often absent outside the USA.
Where programmes exist, they improve access to therapies and parental satisfaction, but there is no evidence they improve long-term developmental outcomes.
Key findings
01Neurodevelopmental follow-up practices are highly varied and perceived to be suboptimal, with specialized programmes lacking at up to one-half of sites in some surveys conducted in the USA, Europe, and Canada.
02Existing evidence shows programmes improve access to evaluation and services, with uptake as high as 96% in some Canadian catchments, but no studies compared different care pathways to determine which is optimal.
03Key barriers to implementation include travel to centralized clinics, limited specialist workforce, and lack of provider knowledge about guidelines, while enablers include dedicated multidisciplinary teams and leveraging existing local resources.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The evidence is constrained to a few geographical regions, with most programmes described in the USA. There is a lack of data from low- and middle-income countries. Included studies were mostly observational, retrospective, and single-centre, with only four using comparator groups and none using randomized designs. This limits the ability to attribute outcomes to the care pathways themselves. Descriptions of care pathways were often incomplete, making it difficult to define specific components or compare programmes accurately. There is no evidence comparing different care pathways to determine which model is optimal for neurodevelopmental outcomes. Long-term neurodevelopmental outcomes were rarely measured; most studies reported on process outcomes like access to care or parental satisfaction.
Declared interests
The review team included clinicians experienced in paediatric cardiology, psychology, physiotherapy, and health services research. The protocol was not registered or published. No specific funding source or conflicts of interest are declared in the provided text.
The easy way to misread this
Do not assume that implementing a structured neurodevelopmental follow-up programme will improve long-term developmental outcomes in children with congenital heart disease. The review found no randomized trials or comparative studies proving this; the evidence supports improved access to care and parental satisfaction, but not necessarily better child development.