Effects of a Care Coordination Intervention with Children with Neurodevelopmental Disabilities and Their Families.

: Care coordination is integral to improving the health of children and families. Using a Shared Plan of Care (SPoC) as a care coordination activity is recommended, but related research on outcomes in pediatric populations with complex medical conditions is scarce.

OBJECTIVE: This study explores family outcomes associated with implementation of a care coordination/SPoC intervention with a population of children with neurodevelopmental disabilities and their families.

METHODS: Children aged 2 to 10 years with a neurodevelopmental disability (autism spectrum disorder: 60.9%; global developmental delay/intellectual disability: 39.1%) were referred by pediatric subspecialty programs for care coordination. The intervention included previsit assessments, planned care visits, SPoC development, and 6-month care coordination. A single-group, repeated-measures design was used to evaluate model feasibility and effects on care coordination access, SPoC use, family/clinician goals and needs met, family-professional partnerships, family empowerment, and worry. Times 1 and 2 survey data were collected from a total of 70 families.

RESULTS: Analysis shows significant improvement in care coordination access, SPoC use, goals achieved, needs met, family empowerment, and reduced worry. There was no significant change in family-professional partnerships and reported SPoC use.

CONCLUSION: Findings provide preliminary evidence that a care coordination model using a family-centered, goal-oriented SPoC is a feasible and effective approach with a cohort of children with complex neurodevelopmental disorders and is associated with improved family outcomes. Replication studies are warranted and should include a control group, prolonged time period, additional validated outcome measures, and measurement of costs and professional impact.