Objective:

We aim to evaluate and improve the pediatric to adult transition process for young adults with autism or intellectual disability.

Background:

Transition from pediatric to adult care is a daunting process for patients, especially those with autism and intellectual disabilities. Access to insurance, management of finances, and identifying a qualified primary adult care physician are some of the barriers to care. Pediatric neurology clinics play a critical role in preparing their families for the transition from pediatrics to adult care.

Design/Methods:

We assessed the current process to advise families on the adult transition process and available resources. We created a questionnaire to assess guardians’ comfort and understanding of the adult transition process. Questions probed guardians’ confidence concerning accessing resources, plans made by providers, and other aspects of the transition process. 

Results:

Review of current processes revealed a lack of standardized procedures for adult transition planning. Age at the first conversation about transition varied, there were redundant resources, and outdated online resources that caused delays in transition and confusion for families. Additionally, there was an insufficient breadth of resources to serve the diverse socioeconomic and health literacy levels of the patient families. Preliminary results of guardian questionnaires showed confidence in the general understanding of transitioning from pediatrics to adult providers but were not confident when questioned about how to access resources, having a detailed plan, and knowledge of patient rights.

Conclusions:

Results suggest that guardians have confidence in the idea of transition broadly but lack sufficient knowledge or resources to successfully execute the process. We will continue to collect questionnaires and conduct semi-structured interviews with guardians of adolescent patients in order to generate a standardized process for pediatric to adult transitioning. The new process should increase patient knowledge, increase provider accountability, and improve efficiency of the transition process.