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Cited by 65Adolescent and Pediatric HealthcareAutism Spectrum Disorder ResearchChild and Adolescent Health

Health Care Transition Services for Youth With Autism Spectrum Disorders: Perspectives of Caregivers

Kuhlthau, Karen A., Delahaye, Jennifer, Erickson-Warfield, Marji, Shui, Amy, Crossman, Morgan, van der Weerd, Emma·2016·Pediatrics
DOI 10.1542/peds.2015-2851n
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Abstract

BACKGROUND AND OBJECTIVE: This paper seeks to describe the experience of youth with autism spectrum disorder (ASD) in making the health care transition (HCT) to adult care. METHODS: We surveyed 183 parents and guardians of youth with ASD, assessing the extent to which youth and families experienced and desired HCT services, their satisfaction with services, and obstacles to transition. Descriptive statistics were used to examine HCT measures and Fisher’s exact and t tests assessed whether demographic or health measures were associated with service receipt. Any measures with a P value <.05 were included in a logistic regression model, with service receipt as the dependent variable. RESULTS: The receipt of transition services was low overall, with rates for individual services ranging from 3% to 33% and only 60% of the sample receiving any transition service. Despite these low rates, a majority of respondents reported wanting services (73.3%–91.6%), and satisfaction for received services was high (89%–100%). Regression analyses showed depression to be the only variable significantly associated with service receipt. Youth who were identified by their caregivers as having depression experienced a higher rate of transition service receipt than those not identified as having depression. CONCLUSIONS: Findings suggest that there is a great need to address the provision of HCT services for youth with ASD. Although families who received HCT services were generally satisfied, overall rates of service receipt were quite low, and those who were not provided with services generally desired them.

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  • Multiple studies found that there is a lack of adult care physicians who have specialized understanding of the medical, behavioral, and social needs of individuals with ASD during transition.

    “Further, multiple studies found that there is a lack of adult care physicians who have specialized understanding of the medical, behavioral, and social needs of individuals with ASD during transition.”

    From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [19]

  • Many individuals with ASD, their families, and physicians have reported that physicians can lack the specialized knowledge required to screen, diagnose, and refer individuals with ASD.

    “Unfortunately, many individuals with ASD, their families, and even physicians have reported that physicians can lack specialized knowledge required to screen, diagnose, and refer individuals with ASD.”

    From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [19]

  • A Canadian study reported that 70% of pediatricians did not support youth with ASD in the transition to adult healthcare services, and another study found that more than 50% of families lacked information on the healthcare transition process.

    “A Canadian study reported that 70% of pediatricians did not support youth with ASD in the transition to adult healthcare services and another study found that &gt;50% of families lacked information on the HCT process.”

    From Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood (2022) · cites this paper as [19]

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Authors
Kuhlthau, K. A., Delahaye, J., Erickson-Warfield, M., Shui, A., Crossman, M., & van der Weerd, E.
Affiliations
  • Harvard University (US)
  • Massachusetts General Hospital (US)
  • Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts
  • Brandeis University (US)
  • Departments of Pediatrics Massachusetts General Hospital, Boston, Massachusetts
ORCID
Venue
Pediatrics
Publisher
American Academy of Pediatrics (AAP)
Published
2016-02-01
Volume
137
Issue
Supplement_2
Pages
S158-S166
ISSN
  • 0031-4005 (ISSN-L)
  • 1098-4275
DOI
10.1542/peds.2015-2851n
OpenAlex
W2289245078
Cited by
65
References
38
Citations by year
2026: 6 · 2025: 2 · 2024: 6 · 2023: 5 · 2022: 8 · 2021: 7 · 2020: 14 · 2019: 4 · 2018: 6 · 2017: 4 · 2016: 2
FWCI
11.07
Type
journal article
Language
en
Open access
closed
Locations
  • PEDIATRICS (publishedVersion)
  • PubMed (publishedVersion)
Funders
Maternal and Child Health Bureau
Topics
  • Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
Keywords
autism spectrum disorder, care transitions, transition services, autistic youth, parents and guardians, service receipt, service satisfaction, depression, barriers to transition, adult care
MeSH terms
Autism Spectrum Disorder, Adolescent, Adult, Autistic Disorder, Female, Humans, Male, Parents, Surveys and Questionnaires, Multivariate Analysis, Caregivers, Needs Assessment, Asperger Syndrome, Young Adult, Transition to Adult Care

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