The Effect of Intellectual Disability on Transition Preparation to Adult Healthcare

Background and Purpose:

Approximately 500,000 U.S. youth transition annually from pediatric to adult healthcare systems and some experience serious gaps in outcomes. One prior study found that most youth with special health care needs are not receiving needed transition preparation from health care providers to transfer from pediatric to adult healthcare, including attention to maintaining insurance coverage. In addition, parents of young adults with intellectual/developmental disabilities have reported that the transition period is a source of stress, and this population experiences a longer and more complex transition period to adulthood.

Study Aim, Research Question, & Hypothesis: This study aims to identify whether there is an association between youth with intellectual disabilities and receipt of healthcare transition preparation, including what factors may influence this preparation. The research question examined is: Does presence of intellectual disability have a negative effect on transition preparation to healthcare? This study proposes that youth with intellectual disability are not as prepared for transition to adult healthcare as youth with physical disabilities.

Methods:

This study utilizes data from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample of more than 40,000 parent respondents who have youth with special health care needs. Transition preparation questions are asked of parents with youth ages 12 – 17, with a total of 17,114 interviews conducted. The sample for this study includes 14,167 respondents who had a response on all variables included in the full multivariate models. Transition preparation questions consist of whether doctors have discussed the shift to an adult health care provider, future health care needs, future insurance needs, and/or how often the youth has been encouraged to take responsibility for his/her own health care needs.

Measures & Statistical Analysis: Intellectual disability was defined as having a diagnosis of autism, mental retardation, and/or Down syndrome. Physical disability was defined as having a diagnosis of cerebral palsy, muscular dystrophy, epilepsy, and/or cystic fibrosis. Using transition preparation questions as a 4-point scale for the outcome variable, multivariate logistic regression models were utilized to identify the effect of intellectual or physical disability on transition preparation and identified 12 control variables that could potentially influence this outcome variable.

Results:

Results of regression models indicate that there is a strong and negative relationship between intellectual disability and transition preparation, and that this effect holds true even after controlling for demographics, socioeconomic status, health conditions, and insurance coverage. Preliminary findings indicate intellectual disability is associated with poor transition preparation to adult healthcare, while physical disability does not appear to have an effect on transition preparation score, as hypothesized.

Conclusions and Implications:

The findings of this study indicate that focused attention on the transition preparation of youth with intellectual disability is both important and necessary to prevent serious gaps in health care and service needs. Future steps for this study include identifying potential variables and interaction effects that could be moderating this relationship between intellectual disability and poor health care transition preparation.