Neurodevelopmental follow-up care pathways for children with congenital heart disease were mapped across 33 studies, identifying common attributes like centralized clinics and standardized assessments.
What are the components, barriers, and enablers of neurodevelopmental follow-up care for children with congenital heart disease?
This scoping review maps the components, barriers, and enablers of neurodevelopmental follow-up care for children with congenital heart disease, highlighting the need for standardized, multidisciplinary, and accessible care pathways.
AIM: To identify and map evidence describing components of neurodevelopmental follow-up care for children with congenital heart disease (CHD). METHOD: This was a scoping review of studies reporting components of neurodevelopmental follow-up programmes/pathways for children with CHD. Eligible publications were identified through database searches, citation tracking, and expert recommendations. Two independent reviewers screened studies and extracted data. An evidence matrix was developed to visualize common characteristics of care pathways. Qualitative content analysis identified implementation barriers and enablers. RESULTS: The review included 33 studies. Twenty-one described individual care pathways across the USA (n = 14), Canada (n = 4), Australia (n = 2), and France (n = 1). The remainder reported surveys of clinical practice across multiple geographical regions. While heterogeneity in care existed across studies, common attributes included enrolment of children at high-risk of neurodevelopmental delay; centralized clinics in children's hospitals; referral before discharge; periodic follow-up at fixed ages; standardized developmental assessment; and involvement of multidisciplinary teams. Implementation barriers included service cost/resourcing, patient burden, and lack of knowledge/awareness. Multi-level stakeholder engagement and integration with other services were key drivers of success. INTERPRETATION: Defining components of effective neurodevelopmental follow-up programmes and care pathways, along with enhancing and expanding guideline-based care across regions and into new contexts, should continue to be priorities. WHAT THIS PAPER ADDS: Twenty-two different neurodevelopmental follow-up care pathways/programmes were published, originating from four countries. Twelve additional publications described broad practices for neurodevelopmental follow-up across regions Common attributes across eligibility, service structure, assessment processes, and care providers were noted. Studies reported programme acceptability, uptake, cost, and effectiveness. Implementation barriers included service cost/resourcing, patient burden, and lack of knowledge/awareness.
Abell et al. (Sat,) conducted a review in congenital heart disease (n=33). Neurodevelopmental follow-up care was evaluated on Components of neurodevelopmental follow-up programmes/pathways. Neurodevelopmental follow-up care pathways for children with congenital heart disease were mapped across 33 studies, identifying common attributes like centralized clinics and standardized assessments.