A preliminary study of care coordination services within a specialized outpatient setting for youth with autism spectrum disorder

Vini Singh, Melanie Pinkett-Davis, Luther G. Kalb, Gazi Azad, Jason Neely, Rebecca Landa

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction: Parents of children with autism spectrum disorder often experience high levels of stress and challenges when organizing medical and behavioral services for their child. Care coordination could alleviate these challenges, however little is known about the effectiveness of this service. This study examined the need, feasibility, and acceptability of a care coordination program. Methods: Families of 176 children with autism, seen at a multidisciplinary autism clinic in the United States, participated in a prospective observational study. Families received a three-month structured care coordination program and completed pre- and post-program questionnaires that probed parents’ beliefs about the need and acceptability of the program through structured and open-ended questions. Results: Most (≥90%) parents reported both a need for care coordination and satisfaction with the program. Qualitative themes identified valuable aspects and ways to improve the program. Discussion: Parents raising a child with autism spectrum disorder experience an unmet need for care coordination. When provided, parents’ demonstrated high uptake of service and high levels of satisfaction with the program.

Original languageEnglish (US)
Pages (from-to)109-116
Number of pages8
JournalInternational Journal of Care Coordination
Volume22
Issue number3-4
DOIs
StatePublished - Sep 1 2019

Keywords

  • Patient-centered care
  • autism spectrum disorder
  • tertiary healthcare

ASJC Scopus subject areas

  • Leadership and Management
  • Health Policy

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