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Updated: Jun 5, 2025
Measuring Cardiac Autonomic Nervous System ANS Activity in Children
Published on: April 29, 2013
Rate and setting of neurodevelopmental and psychosocial encounters for children with CHD
James C Bohnhoff1,2, Anya Cutler2, Julia Price3
1Department of Pediatrics, MaineHealth, Portland, ME, USA.
Insights
Most children with complex congenital heart disease (CHD) in Maine receive neurodevelopmental and psychosocial care outside of surgical centers. These findings highlight the need for better integration of community-based services for improved pediatric cardiac care outcomes.
Area of Science:
- Pediatric Cardiology
- Neurodevelopmental Pediatrics
- Health Services Research
Background:
- Less than 30% of children with complex congenital heart disease (CHD) in North America receive recommended neurodevelopmental and psychosocial follow-up care.
- While follow-up care at surgical centers is documented, services outside these specialized centers remain understudied.
Purpose of the Study:
- To investigate the utilization of developmental and psychosocial services among children with complex CHD in Maine.
- To identify the types of services received and the locations where these services are accessed by children with complex CHD.
Main Methods:
- A cohort study utilizing Maine Health Data Organization's All Payer Claims Data from 2015 to 2019.
- Identification of children aged 0-18 with complex CHD and analysis of their developmental and psychosocial-related healthcare encounters.
- Classification of encounters into developmental, psychological, neuropsychological testing, mental health interventions, and health/behavioral assessments.
Main Results:
- Out of 799 children with complex CHD, 23% received at least one developmental or psychosocial encounter.
- Only 1.6% of these children received care at a surgical center; most services were accessed in community clinics, state programs, or hospital-affiliated clinics.
- Service utilization varied by type: developmental testing occurred across various settings, mental health interventions were predominantly in community clinics, and health/behavioral assessments were primarily at hospital clinics.
Conclusions:
- Children with complex CHD in Maine access essential developmental and psychosocial services in diverse locations beyond surgical centers.
- Congenital heart disease centers should foster collaborations with external providers to enhance neurodevelopmental support for pediatric patients.
Background:
In North America, less than 30% of children with complex CHD receive recommended follow-up for neurodevelopmental and psychosocial care. While rates of follow-up care at surgical centres have been described, little is known about similar services outside of surgical centres.
Methods:
This cohort study used Maine Health Data Organization's All Payer Claims Data from 2015 to 2019 to identify developmental and psychosocial-related encounters received by children 0-18 years of age with complex CHD. Encounters were classified as developmental, psychological, and neuropsychological testing, mental health assessment interventions, and health and behaviour assessments and interventions. We analysed the association of demographic and clinical characteristics of children and the receipt of any encounter.
Results:
Of 799 unique children with complex CHD (57% male, 56% Medicaid, and 64% rural), 185 (23%) had at least one developmental or psychosocial encounter. Only 13 children (1.6%) received such care at a surgical centre. Developmental testing took place at a mix of community clinics/private practices (39%), state-based programmes (31%), and hospital-affiliated clinics (28%) with most encounters billing Medicaid (86%). Health and behavioural assessments occurred exclusively at hospital-affiliated clinics, predominately with Medicaid claims (82%). Encounters for mental health interventions, however, occurred in mostly community clinics/private practices (80%) with the majority of encounters billing commercial insurance (64%).
Conclusion:
Children with complex CHD in Maine access developmental and psychosocial services in locations beyond surgical centres. To better support the neurodevelopmental outcomes of their patients, CHD centres should build partnerships with these external providers.
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