Access to Tailored Autism Integrated Care Pilot Study
Condition: Autism Spectrum Disorder; Mental Health Issue
MeSH terms: Autistic Disorder; Autism Spectrum Disorder
Study type: Observational

Summary: 
      Children with autism spectrum disorder (ASD) represent a rapidly growing, high-priority
      clinical population highlighted by the NIMH and Interagency Autism Coordinating Committee
      due, in part, because they have multiple service needs including access to effective mental
      health treatment given high rates of psychiatric comorbidities. Pediatric primary care is a
      critical and ongoing point of health care access for children with ASD and thus represents an
      ideal setting for identification of mental health service needs and appropriate linkage to
      care. The proposed study will use implementation science theory and methods and a
      research-community partnership approach to: 1) identify targets to improve mental health
      screening and linkage to mental health services in primary care for children with ASD, 2)
      adapt integrated care procedures into "Access To Tailored Autism INtegrated Care," ATTAIN, to
      facilitate identification of mental health problems and linkage to evidence-based care for
      youth with ASD, and 3) conduct an open trial feasibility pilot test of ATTAIN in pediatric
      primary care.
    

Detailed description: 
      This description is focused solely on the feasibility pilot test of ATTAIN in pediatric
      primary care.

      Phase 3. Conduct an open trial feasibility pilot test of ATTAIN (directly informed by
      adaptations identified earlier in the larger study) in pediatric primary care.

      Participants

      Providers: A total of 45 pediatric care providers and staff will be recruited for enrollment
      from primary care practices in the region. This targeted sample size was chosen based on
      sample sizes used within completed pilot studies focused on service interventions in
      pediatric care. Each provider and healthcare staff member will be asked to use or support use
      of ATTAIN with up to 5 eligible patients over four months.

      Families: Eligible pediatric patients must be: 1) English and/or Spanish-speaking, 2) between
      4-16 years of age and 3) have a documented ASD diagnosis in the electronic health record.
      After four months of ATTAIN use by their child's primary care provider, caregivers will be
      contacted by the research team to be invited to complete an online survey about their child's
      healthcare experiences over the past four months.

      Procedure Leadership at each primary care organization will be approached about their primary
      care practices participating in the pilot study. Primary care practices within each
      organization will be purposively selected for targeted recruitment of providers for ATTAIN
      implementation based on volume of patients with ASD. Members of the research team will
      request an invitation to present at regularly scheduled staff meetings to recruit primary
      care providers. Interested providers will be asked to complete a study interest form and
      indicate preferred times to attend a group meeting to review study participation details, the
      Study Information Sheet, and receive training in using the ATTAIN model. For some clinics,
      leadership may prefer that the recruitment and training be conducted during the same meeting
      for the purpose of reducing staff burden. At these meetings, the research team will provide a
      meal and refreshments. Subsequently, trained providers will be asked to use ATTAIN with up to
      5 eligible patients during any outpatient appointment (e.g., annual check-ups, drop-in
      appointments) to maximize early detection of mental health problems and opportunity to link
      to mental health services. Throughout the 4 months, we may ask providers and supporting staff
      to elaborate on their experiences using ATTAIN via e-mail or phone-call to understand
      challenges to implementation, recommendations for improving implementation or adaptations in
      implementing the ATTAIN model in their clinic. Time to complete these brief reflections will
      take no more than 5-10 minutes each. Quantitative data of ATTAIN use will be extracted from
      patient charts and de-identified data will be sent to the research team during the four month
      study period and at the end of 4 months. After 4 months of ATTAIN delivery, participating
      providers and caregivers of youth with ASD with whom providers used ATTAIN will be asked to
      complete a brief online survey regarding their experiences using ATTAIN. Providers and staff
      will be asked to attend a meeting, where food and light refreshments will be provided, to
      complete the survey. In addition, providers and staff will be invited to participate in a
      post-study interview that will be offered to be completed by phone or in-person. Caregivers
      will receive $20 for survey completion. The ATTAIN model was developed to be embedded within
      routine primary care settings and workflow so there are minimal risks to primary care
      providers, caregivers or children associated with participation.
    

Intervention name(s): ATTAIN
Intervention type(s): Behavioral
Intervention description(s): ATTAIN is an 8-step model to identify co-occurring mental health conditions and facilitate linkage to mental health services for youth with an existing autism spectrum disorder diagnosis.
Observational model: Ecologic or Community
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Providers and families will be recruited from pre-identified pediatric primary care clinics
        in Southern California serving children with autism spectrum disorder.
      
Keywords: pediatric primary care; implementation science; co-occurring mental health conditions; community academic partnership