The Medical Home and Healthcare Transition in Youth with Autism

Background: A medical home is a recommended concept of care by the American Academy of Pediatrics for all children.  A medical home is generally shown to improve child health outcomes, satisfaction with care and promote patient/family centered care.  Healthcare transition planning prepares the child to transition to healthcare services as an adult, with the possibility of different healthcare providers and insurance coverage.  Children with autism less often receive care within a medical home or healthcare transition planning services than other children and youth with special health care needs (CYSCHN).  According to the AAP, AAFP, AOA, and ACP the goal of health care transition planning is to provide uninterrupted health care services that are developmentally appropriate and maximize lifelong functioning.  Children with autism receive transition services half as often as other CYSHCN.  

Objectives: A major aim of this study is to determine if the presence of a medical home affects the odds of youth with autism receiving healthcare transition services.   This study also assesses the proportion of youth with autism with and without a medical home, and all CYSHCN, who meet certain aspects of transition planning, such as discussing health care needs as the youth becomes an adult.

Methods: This study used data from the National Survey of Children with Special Health Care Needs 2009/10. We used medical home as the main predictor in a logistic regression model to assess odds of receipt of transition planning when controlling for other covariates.  The distribution of covariates was compared in youth with and without a medical home, as were the survey questions that make up the core indicator of “receipt of transition services.”

Results: Twenty six percent of youth with autism age 12-17 received care within a medical home, compared to 43% of all youth with special health care needs age 12-17.  Youth with autism age 12-17 were more than twice as likely to meet the CAHMI core outcome of transition planning as youth without a medical home (2.57, 95%CI (1.58, 4.18)).  Fewer youth with autism met the transition outcome, 21% compared to 40% of all CYSHCN.  Youth with autism with a medical home were also more often encouraged by their doctor to take responsibility for their healthcare needs, and were more often talked to about their healthcare needs when they become an adult.  Youth with more comorbid conditions and increasing severity of autism were less likely to receive care within a medical home.  Having fewer comorbid conditions was also statistically significantly associated with increased odds of receiving transition planning services, as was higher family income and having public insurance versus private.   

Conclusions: The presence of a medical home had a positive impact on receiving transition services, as defined by the CAHMI core outcome for transition planning.  However, youth with autism are less likely to receive care within a medical home than their peers with SHCN, and are less likely to receive healthcare transition planning.  Receiving care within a medical home more than doubled the odds of youth with autism receiving transition planning.