Care Coordination for Children with Neurodevelopmental Disorders and Medical Complexity: Is Child Behavioral Health a Key Mediator of Caregiver Stress?

Abstract

Introduction: Children with neurodevelopmental disorders and medical complexity experience care that is fragmented, costly, and ineffective, causing health disparities and harm. The Neurodevelopmental Disorders Care Coordination (NDD-CC) program addresses these issues by connecting families with support across medical and social services. While NDD-CC has improved outcomes in several areas, many families continue to experience challenges.

Objective: Using data from a longitudinal study, we investigated patterns of change across child health and behavior and caregiver stress during care coordination (CC).

Methods: We performed an exploratory analysis of prospectively collected data from 67 caregivers of children with a neurodevelopmental disorder aged 2 to 17 years referred for CC. We examined changes in child health states (EQ-5D-Y), care-related quality of life (CarerQoL), and parenting stress (Parental Stress Index-Short Form) to assess impacts of CC over time and within subgroups.

Results: Most caregivers who reported CarerQoL scores in the bottom half of the distribution at baseline saw improvements at 3 (89%) and 12 months (71%). Gains were strongly associated with improvements in mental health at both time points. Similarly, child health states in the bottom half of the distribution improved the most. The difficult child domain of the parenting stress index was the key contributor to clinically significant stress scores, and changes in the difficult child score were negatively associated with changes in CarerQoL, explaining 36% of the variance.

Conclusion: Findings show that CC has the most impact on those with the greatest need; yet clinically significant child behavior may prevent sustained improvements if left unaddressed.