Health System Integration of Tools to Improve Primary Care for Autistic Adults

Despite growing attention to the needs of autistic children, the health system is ill
equipped to meet the needs of autistic adults. The investigators' prior work has identified
significant healthcare disparities experienced by autistic adults, including greater unmet
healthcare needs, lower use of preventive services, and greater use of the Emergency
Department (ED). These disparities likely stem from a complex interaction between patient-,
provider-, and system-level factors. Autism entails atypical communication and interpersonal
relationships, and challenges with executive function - factors that are critically important
for effective healthcare interactions and health system navigation. Moreover, a majority of
primary care providers (PCPs) lack the skills needed to care for autistic adults, yet
competing priorities make it unlikely they will attend trainings on autism. The heterogeneity
of the autism spectrum may also make it challenging to understand a specific patient's needs.
Finally, autistic patients may be disproportionally affected by the complexity of the health
system, low socio-economic status, and societal biases, yet few systems can afford
autism-specific care coordination programs for adults.

The Academic Autism Spectrum Partnership in Research and Education (AASPIRE), an
academic-community partnership comprised of academics, autistic adults, healthcare providers,
and supporters, has used a community based participatory research (CBPR) approach to develop
and test an online healthcare toolkit aimed at improving primary care services for autistic
adults. It was specifically designed as a low-intensity, sustainable intervention that can
realistically be used in busy primary care practices that do not have a special focus on
autism or other developmental disabilities. The toolkit includes the Autism Healthcare
Accommodations Tool (AHAT)--an automated tool which allows patients and/or their supporters
to create a personalized accommodations report for their PCP--and other targeted resources,
worksheets, checklists, and information. A series of NIMH-funded studies demonstrated that
the AHAT has strong construct validity and test-retest stability, and that the toolkit is
highly acceptable and accessible. In a 1-month pre-post intervention comparison, the
investigators found a decrease in barriers to care and increases in patient-provider
communication and confidence in healthcare. Despite these promising preliminary results, more
data is needed to test its effectiveness and understand how to best integrate it into diverse
primary care practices and health systems.

The investigators' long-term plan is to conduct a hybrid effectiveness-implementation trial,
using a cluster randomized trial design, both to test the effectiveness of the AASPIRE
Healthcare Toolkit in improving healthcare quality and utilization and to determine the
potential utility of implementation strategies in diverse healthcare systems. The objective
of this proposal is to use a CBPR approach to understand how to best integrate the toolkit
into these health systems, collect more robust efficacy data, and explore potential
mechanisms of action. The investigators will do so by conducting a 6-month pilot study with
patients assigned to intervention and control clinics in three diverse health systems. The
investigators will meet our objectives by achieving the following specific aims:

1. To determine how to integrate use of the toolkit within diverse health systems. The
investigators' existing CBPR partnership will expand to include local patients,
providers, staff, and administrators from each system. Together, the investigators will
decide how to make patients and providers aware of the toolkit, integrate the AHAT into
the electronic medical record, and respond to recommendations. The investigators will
collaboratively develop implementation protocols and determine how to track them. The
investigators will then conduct a mixed-methods, formative process evaluation to
optimize the likelihood of success of future implementation efforts.'

2. To test the effect of the toolkit on short-term healthcare outcomes. The investigators
hypothesize that, over 6 months, the toolkit will increase satisfaction with
patient-provider communication and decrease barriers to healthcare in patients from
intervention clinics as compared to patients from control clinics.

3. To use a mixed-methods approach to further explore the toolkit's mechanisms of action.
Quantitative data will help the investigators refine and psychometrically test our
measures of patient self-advocacy and visit preparedness; provider/staff use of desired
accommodations and strategies; and patient and provider self-efficacy. Qualitative data
will allow the investigators to obtain a richer understanding of how the toolkit is
affecting care and potentially suggest additional mechanisms of action.

4. To refine our recruitment, retention, data collection, and system integration strategies
in preparation for the larger cluster-randomized trial. The investigators will use this
study to confirm or modify our change model, choose long-term health utilization
outcomes to be further studied in the R01, finalize study protocols and data collection
instruments, and develop a flexible implementation strategy that can be feasibly applied
to diverse primary care clinics.

Successful integration of this scalable and sustainable low-intensity intervention into
primary care practices within diverse health systems will empower patients and providers to
work together to improve health outcomes for a large, underserved and understudied population
with great barriers to care.

Inclusion Criteria:

- Diagnostic code in chart related to autism spectrum disorder or other communication
disability

- Receiving care at one of participating clinics

Exclusion Criteria:

- Can neither participate directly (with or without support), nor has an
English-speaking supporter who can answer surveys on their behalf.