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

McAllister, Jeanne W. BSN, MS, MHA*; McNally Keehn, Rebecca PhD; Rodgers, Rylin BA; Mpofu, Philani Brian BA; Monahan, Patrick O. PhD; Lock, Thomas M. MD§

Journal of Developmental & Behavioral Pediatrics: July/August 2018 - Volume 39 - Issue 6 - p 471–480
doi: 10.1097/DBP.0000000000000576
Original Articles
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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.

*Department of Pediatrics, Children's Health Services Research, Indiana University School of Medicine, Indianapolis, IN;

Department of Pediatrics, Riley Child Development Center, Indiana University School of Medicine, Indianapolis, IN;

Department of Biostatistics, Indiana University School of Medicine, Indianapolis, IN;

§Developmental Pediatrics, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN.

Address for reprints: Jeanne W. McAllister, BSN, MS, MHA, Department of Pediatrics, Children's Health Services Research, Indiana University School of Medicine, Health Information and Translational Sciences Building, 410 W 10th St, HS Suite 2000, Indianapolis, IN 46202-5140; e-mail: jwmcalli@iupui.edu.

Disclosure: The authors declare no conflict of interest.

See the Video Abstract at jdbp.org

Received July 25, 2017

Accepted March 07, 2018

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