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

J Dev Behav Pediatr. 2018 Jul/Aug;39(6):471-480. doi: 10.1097/DBP.0000000000000576.

Abstract

: 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.

MeSH terms

  • Autism Spectrum Disorder / therapy
  • Child
  • Child Health Services / organization & administration*
  • Child, Preschool
  • Developmental Disabilities / therapy
  • Female
  • Humans
  • Intellectual Disability / therapy
  • Male
  • Neurodevelopmental Disorders / therapy*
  • Patient Care Management / organization & administration*
  • Patient Care Planning
  • Primary Health Care / organization & administration*
  • Process Assessment, Health Care*