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Implementing neurodevelopmental follow-up care for children with congenital heart disease: A scoping review with
Bridget R Abell1, Karen Eagleson2,3, Benjamin Auld2
1Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public Health and Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia.
Insights
This scoping review identified common elements in neurodevelopmental follow-up care for children with congenital heart disease (CHD). Key components include early enrollment, standardized assessments, and multidisciplinary teams to improve developmental outcomes.
Area of Science:
- Pediatric Cardiology
- Neurodevelopmental Pediatrics
- Health Services Research
Background:
- Children with congenital heart disease (CHD) face increased risks of neurodevelopmental delays.
- Effective neurodevelopmental follow-up care is crucial for optimizing outcomes in this population.
- Existing follow-up programs exhibit variability, necessitating a comprehensive understanding of their components.
Purpose of the Study:
- To systematically identify and map the components of existing neurodevelopmental follow-up care for children with CHD.
- To understand the common characteristics, implementation barriers, and enablers of these care pathways.
Main Methods:
- A scoping review methodology was employed, including database searches, citation tracking, and expert recommendations.
- Data from 33 eligible studies were screened and extracted by two independent reviewers.
- An evidence matrix and qualitative content analysis were used to synthesize findings on care pathways and implementation.
Main Results:
- Twenty-two distinct neurodevelopmental follow-up care pathways/programs were identified across four countries, with 14 originating from the USA.
- Common attributes included high-risk enrollment, centralized clinics, pre-discharge referral, periodic assessments at fixed ages, and multidisciplinary team involvement.
- Key implementation barriers were service cost, patient burden, and lack of awareness, while stakeholder engagement and service integration were critical success factors.
Conclusions:
- Defining effective neurodevelopmental follow-up program components and care pathways is essential.
- Enhancing and expanding guideline-based care across diverse regions and contexts should be a priority.
- Addressing implementation barriers is crucial for successful and widespread adoption of best practices.
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.
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