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Care Coordination for Children with Neurodevelopmental Disorders and Medical Complexity: Is Child Behavioral Health a
Myka Estes1, Genevieve Currie2,3, Dercia Materula3
1Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary AB, Canada.
Insights
Care coordination for children with neurodevelopmental disorders improves quality of life for caregivers, especially those most in need. Addressing challenging child behaviors is key to sustained improvements in family well-being.
Area of Science:
- Pediatric Health
- Care Coordination
- Neurodevelopmental Disorders
Background:
- Children with neurodevelopmental disorders face fragmented and ineffective care, leading to disparities.
- The Neurodevelopmental Disorders Care Coordination (NDD-CC) program aims to improve care by connecting families with medical and social services.
- Despite improvements, many families still encounter challenges within the NDD-CC program.
Purpose of the Study:
- To investigate changes in child health and behavior.
- To assess caregiver stress during care coordination (CC).
- To analyze patterns of change over time and within subgroups.
Main Methods:
- Exploratory analysis of prospectively collected data from 67 caregivers.
- Children aged 2-17 years with a neurodevelopmental disorder referred for CC.
- Examined changes in child health (EQ-5D-Y), caregiver quality of life (CarerQoL), and parenting stress (Parental Stress Index-Short Form).
Main Results:
- Most caregivers with low baseline CarerQoL scores improved at 3 and 12 months.
- Improvements were linked to better child mental health.
- Child health states in the lower range showed the most improvement.
- The 'difficult child' domain of parenting stress significantly impacted scores and was negatively associated with CarerQoL.
Conclusions:
- Care coordination most benefits children with the greatest needs.
- Addressing significant child behavior challenges is crucial for sustained caregiver well-being.
- The study highlights the impact of CC on vulnerable populations and identifies areas for further intervention.
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.
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