Transitioning Pediatric Patients with Autism Spectrum Disorders to Adult Care

Background: Children with Autism Spectrum Disorders (ASD) have a variety of medical and psychiatric co-morbidities, and increased use of health care services. As they become adults, their medical needs continue. The transition from pediatric to adult medicine can be challenging for patients with ASD, caregivers and health care providers. We conducted a study to determine barriers and facilitators of a smooth transition from pediatric to adult care for patients with ASD, and to inform the development of tools to support a smooth transition.

Objectives: To identify factors that influence the transition from pediatric to adult healthcare.

Methods: We conducted interviews (N=32) with patients, parents and clinical providers of transition age youth and young adults with ASD receiving health services at Kaiser Permanente (KP). We used a non-probabilistic purposive sampling approach to capture the range of ages (pre and post transition to adult care), sex and race/ethnic groups among patients. The provider group included KP adult and family providers and pediatricians. Three interviewers trained in qualitative methods developed guides and conducted all interviews. Areas explored in the interviews with patients and parents included communication with providers, accommodations (if any), experiences during appointments in pediatric and in adult care including registration, waiting room and interactions with medical assistants. In addition, we explored preparation, tools and resources for the transition. Questions to providers about their experiences transitioning patients with ASD completed the picture. Interviews, completed by telephone, ranged from 30 minutes to 1 hour.

Results: Many patients and parents expressed confusion and difficulty navigating a complex healthcare system. Obstacles to a smooth transition included gaps in care coordination and late or no preparation of the patient for the transition, lack of knowledge about ASD among adult care providers. Immigrant families encountered additional obstacles including language, cultural, and literacy barriers, and lack of culturally competent support. Many KP providers echoed the patients’ and parents’ frustration with the lack of patient preparation for transition, lack of resources and tools, and difficulties managing young adult patients with ASD. Possible solutions suggested by patients, parents, and KP clinicians included improved education and training for adult providers, active case management, improved care coordination, and tools to help patients move towards independence in terms of their healthcare.

Conclusions: The interviews provided insights about the experiences of a diverse group of ASD patients receiving healthcare at Kaiser Permanente. Many barriers were experienced by patients, their families and providers. Overcoming them is necessary in order to ensure a smooth transition and optimal care for this growing population of young adults.