Health Care Transition Services for Youth with Autism Spectrum Disorders

Friday, May 16, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
K. A. Kuhlthau1, M. Erickson Warfield2, J. Delahaye3, A. Shui4, M. K. Crossman2 and E. Van Der Weerd5, (1)Pediatrics, Massachusetts General Hospital, Boston, MA, (2)Brandeis University, Boston, MA, (3)Massachusetts General Hospital, Boston, MA, (4)Massachusettes General Hospital for Children, Boston, MA, (5)Harvard University/Massachusetts General Hospital, Boston, MA

Pediatric societies and the Maternal and Child Health Bureau endorse the notion of transitioning to adult services.  The National Survey of  Children with Special Health Care Needs showed that only 21% of youth with ASD received a set of transition planning services whereas for other youth with special needs 42% received transition planning services (Cheak-Zamora et al 2013).


We sought to describe the health are transition services youth with ASD received, satisfaction with those services, the services families desired, and barriers to receiving care.  We further describe the covariates of receipt of services. 


This is a cross cross-sectional survey or parents of youth (age13-26) with ASD living in the community.  We examined descriptive data on receipt of transition services, desire for the services, and barriers to use.  We further examined demographic and health-related characteristics associated with receipt of services.


This is a relatively well off group of families.  Receipt of transition services was low overall. It ranged from 3% of the sample receiving a written transition plan, to between 10 and 20% of respondents who indicated that youth received informative materials about the transition process (17%), help with teaching the child to manage their own health care needs (19%) and other transition-related services or support (13%).  Even fewer respondents reported getting information on adult medical specialists (11.8%) and support in searching for an adult PCP (7.3%). Similarly low percentages of respondents reported getting a written medical summary (9%) or getting information about guardianship (9%). Overall, only 60% received any transition service.  Reciept of these services was related to symptoms of anxiety and depression. In general, satisfaction for the services that were received was quite high with nearly everyone reporting that they were somewhat or fully satisfied. The low levels of use are in sharp contrast to the high percentage of parents who would like the services that they don’t currently receive. Between 65 and 90% of families wanted each of these HCT services.


Our findings suggest that there is a great need to address the provision of HCT services for youth with ASD.  Families who have the services are generally satisfied and those who do not have them generally want them.  We further found that parents reported barriers to obtaining these services at high levels with a particular desire for more information and adult providers who could better meet their needs

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