health system integration of tools to improve primary care for autistic adults

Conditions: Autism Spectrum Disorder

Summary: the health system is ill-equipped to meet the needs of autistic 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 primary care provider (pcp)--and other targeted resources, worksheets, checklists, and information. the investigators' pilot work has demonstrated that the ahat has strong construct validity and test-retest stability, the toolkit is highly acceptable and accessible, and it has the potential to decrease barriers to care and increase patient-provider communication. 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 assess the utility of implementation strategies in diverse healthcare systems. the objective of this proposal is to use a cbpr approach to understand how to 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; 2) to test the effect of the toolkit on short-term healthcare outcomes; 3) to use a mixed-methods approach to further explore the toolkit's mechanisms of action; and 4) to refine the recruitment, retention, data collection, and system integration strategies in preparation for the larger cluster-randomized trial.

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.

Eligibility criteria:
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.

Keywords: healthcare services adults