Receipt of Health Care Transition Planning Services Amongst Youth with Autism Spectrum Disorder

Background/Purpose:  Transition to adult health care can impact youth and family quality of life, finances, and overall physical health.  The purpose of this study is to gain increased understanding of the predictors of and barriers to receipt of adult health care transition planning services for youth with autism spectrum disorder.  This analysis examines three research questions: 1) Are health care providers who treat only children less likely to discuss transition to adult health care services with their patients and families? 2) Are parents who report receiving various components of family centered care (e.g. sensitivity to family values and customs, receiving specific information needed, partnership in care) from their child’s health care provider more likely to receive health care transition planning services for their child? and 3) Do care coordination services enhance the likelihood of receipt of adult health care transition planning services?

Methods: Data and samples: Secondary data analysis was conducted using the 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN).  The NS-CSHCN is a nationwide telephone survey sponsored by the U.S. Department of Health and Human Services, Health Resources Survey Administration and the Maternal and Child Health Bureau (MCHB). Data were collected from parents of 372,698 children ages 0-17 living in 196,159 households nationwide between July 2009-March 2011. 

Adolescents (ages 12-17) with a current diagnosis of ‘autism, asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder’ at the time parents were interviewed were included in this analysis (n=1115). Logistic regression was used to examine factors related to provision of adult health care transition planning services. . 

Independent variables for this analysis were drawn from the 2009/2010 NS-CSHCN survey categories of demographics, health and functional status, family centered care and shared decision making, care coordination and transition issues.

Results: The frequency of receipt of adult health care transition planning services shows that it is more common for parents to indicate that their child’s doctor had not talked with them about transition to adult health care services (60%). Among the significant logistic regression findings, health care providers who treat children and adults were 72% more likely to provide health care transition planning services (OR 1.715, 95% CI 1.214-2.171). Youth with greater symptom severity (scale of mild, moderate, severe) were 24% more likely receive health care transition planning services (OR 1.243, 95% CI 1.025-1.508).  Parent endorsement of components of family centered care (how often the health care provider listened carefully, provided specific information needed, discussed the range of treatment options, and provided encouragement to ask questions and raise concerns) suggested increased likelihood of receipt of health care transition planning services. Finally, adolescent youth who do not have care coordination support services are 32% less likely to receive health care transition planning services (OR .682, 95% CI .504-.923).

Conclusions and Implications: These findings suggest that a gap remains in transition to adult health care services for youth with autism spectrum disorder, and that further training for pediatric health care providers concerning adult health care transition planning services is needed.