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

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.

Medical care experiences of children with autism and their parents: A scoping review

“…This time commitment is also a burden to families (van Tongerloo et al, ). Nonetheless, they still experience unmet needs, despite their higher rate of utilization, greater expenditure, and longer time spent in medical appointments (Cheak‐Zamora & Farmer, ; Kogan et al, ; Kuhlthau et al, ; Strunk et al, ; Williams et al, ; Zuckerman et al, ). Although having a medical home is associated with fewer unmet needs (Cheak‐Zamora & Teti, ; Kogan et al, ) and greater satisfaction with care (Zuckerman et al, ), most children with ASD do not have medical homes (Williams et al, ).…”

“…Despite these challenges, parents report that they are satisfied overall with their child's care on measures of parent satisfaction. One large study (n = 2,088) by Chiri and Warfield (2012) found that only 7.9% of caregivers were dissatisfied with their child's general health care, and another study found that only 3.2% of parents were dissatisfied with their child's transition services (Kuhlthau et al, 2016). Higher levels of satisfaction are associated with receiving care in a medical home (Golnik, Maccabee-Ryaboy, et al, 2012).…”

The Autism Intervention Research Network on Physical Health and the Autism Speaks Autism Treatment Network

“…6 epilepsy, and behavioral/psychiatric conditions, 7,8 among the most promising and important areas, along with understanding more about adolescence and the transition to adulthood with ASD. 9,10 Some network studies have addressed quality of life, health services, and health economic issues, which are areas that merit more attention and investment. 11,12 Nonetheless, it remains clear that there is much more to do to understand clinical conditions among children with ASD and to improve the underlying science needed to inform treatment choices.…”

Health Care Transitions for Adolescents and Young Adults With Special Health Care Needs: Where Are We Now?

“…31,32 A survey of 183 parents and guardians of youth with autism spectrum disorders revealed that only 60% received transition services, despite high rates of insured status and access to health care. 33 The greatest impediments in this population included reported lack of information regarding the transition process and difficulty finding an adult primary care clinician with sufficient knowledge of autism spectrum disorder. 33 A convenience sample survey of 155 transitioning patients with various childhood chronic diseases and 104 parents reported that significant gaps in transition education existed regarding a variety of health-related and future vocational issues.…”

“…33 The greatest impediments in this population included reported lack of information regarding the transition process and difficulty finding an adult primary care clinician with sufficient knowledge of autism spectrum disorder. 33 A convenience sample survey of 155 transitioning patients with various childhood chronic diseases and 104 parents reported that significant gaps in transition education existed regarding a variety of health-related and future vocational issues. 32 This report also cited lack of adult specialist providers as a barrier to transition.…”