Using a Patient Centered Outcomes Research Institute (PCORI) Approach to Engage Key Stakeholders on the Topic of Transitioning to Adulthood in Autism Spectrum Disorders (ASD)

Background: There has been a significant increase in the incidence and prevalence of autism spectrum disorder (ASD) in recent years with current estimates of 1 in 68 children diagnosed with ASD and 3.5 million Americans living with ASD (CDC, 2017), including individuals with ASD transitioning from childhood to adulthood. Symptoms of ASD (e.g., impairments in social interaction, communication, repetitive behaviors) emerge in early childhood and span across adulthood. Considering ASD presents in early childhood, educating medical providers has largely focused on Pediatrics as opposed to Adult Internal Medicine. Thus, a growing concern on the forefront of everyone’s mind is ‘what next?’ as these children transition to adults and parents, as well as providers, are no longer able to care for them

Objectives: The overarching aim of this Patient Centered Outcomes Research Institute (PCORI) award is to form equitable partnerships with key stakeholders to gain meaningful insight into issues encountered during transitioning to adulthood in ASD. This, in turn, will lead to the development of a comparative effectiveness research (CER) study on transition to adulthood in ASD.

Methods: Stakeholders were divided into four groups: two groups of young adults with ASD of varying degrees of severity, one group of caregivers of adults with ASD, and an Autism Advisory Board (AAB) comprised of diverse professionals and stakeholders. The AAB provided oversight on how to engage stakeholders and ways to formulate CER questions based on the stakeholder identified topics. Stakeholders engaged in monthly meetings and bi-annual united stakeholder group meetings to identify gaps in research, care, and services for individuals with ASD transitioning to adulthood.

Results: This newly funded PCORI Tier A award is the first step in PCORI’s tiered Pipeline to PCORI. Expected results include gaining insight into the issues encountered during transitioning to adulthood that will enable the development of future research questions meaningful to this population. Given this health issue is not limited to any one area of the country (e.g., rural, urban, state), connections and outcomes have the potential to expand and influence nationally and internationally.

Conclusions: Historically, treatment and services in ASD have been targeted towards early childhood to promote developmental trajectories. While this is important, there is a need to shift interventions and services as the individual transitions from childhood into adulthood in order to account for their growing needs. Recent studies suggest that medical providers are not adequately trained or prepared to care for individuals with ASD transitioning to adulthood. As a result, families often report struggling to navigate this period between childhood and adulthood. Thus, the use of a PCORI approach to engage key stakeholders is an optimal method to gain insight into issues encountered by individuals with ASD and their families in order to build towards future research responsive to the needs of stakeholders.