Rate and setting of neurodevelopmental and psychosocial encounters for children with CHD.

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.