Are Health Care Providers Ready to Transition Teens with Autism Spectrum Disorders to Adult Care? a Survey of Clinical Providers in California.

Background: Health care continuity during the transition from pediatric to adult health care is critical to helping individuals with autism spectrum disorders (ASD) manage complex medical and psychiatric co-morbidities that start in childhood and evolve with age. However, the transition process is often difficult to navigate for young adults and their families. Youth with ASD often receive fewer transition resources than their peers with other special health care needs (SHCN) and experience lapses in care. While several studies have examined the health care transition from the perspective of patients and their families, fewer have approached the problem from the perspective of the providers.

Objectives: To assess providers’ departmental and personal practices surrounding the transition of patients with SHCN from pediatric to adult care.

Methods: In 2016, we conducted a brief online survey (~20 questions) of pediatric and adult health care providers at Kaiser Permanente Northern California (KPNC), a large integrated healthcare delivery system serving over 4.2 million members. The survey was developed in consultation with the “Got Transition” Project and piloted by KPNC pediatric and adult care providers. Questions assessed departmental policies and personal approaches to transitioning patients with SHCN and desired training and resources to improve the process. Response formats included Likert scale, multiple choice, or select all that apply as well as space for optional free response.

Results: A total of 354 pediatric (43%) and 715 adult providers (33%) completed the survey. Survey respondents were approximately 75% primary care and 25% mental health providers. We found that a large majority of departments do not have transition policies, practices, or mechanisms in place. Even when departmental policies do exist, this information is only transferred to medical staff and patients less than 50% of the time. Furthermore, the majority of providers do not provide transition resources, review legal changes, use a standardized assessment tool, or communicate with next/previous provider – strategies endorsed by the American Academy of Pediatrics. When a transition readiness assessment tool was used, approximately 60% of providers incorporated the results into a care plan and shared the care plan with patients and/or their families. Deficiencies in transition approaches were apparent in both primary care and mental health settings. Pediatric providers also reported starting the transition planning when the patient reached age 17+, despite current recommendations to initiate the process earlier. Ninety percent of pediatric providers desired training in the specific transition needs of patients with ASD.

Conclusions: Our findings indicate that most pediatric and adult providers do not have consistent approaches to the transition of care for youth with SHCN and feel inadequately prepared to handle the process for children with ASD. As the population of transition-age youth with ASD continues to grow, there is urgent need to understand how to best implement transition policies that promote early and clear communication between providers and families and track outcomes among transitioning patients with SHCN.