- Toddlerhood (13-35 months)
AbstractDespite its relatively high rate of occurrence, autism spectrum disorder (ASD) is underdiagnosed and under-treated in young children, particularly in minority and disadvantaged populations. National guidelines recommend routine ASD screening in primary care, but inadequate attention has been paid to other important obstacles to earlier diagnosis and treatment, including barriers to referral after positive screens and to receipt of diagnostic evaluations and services. One potential solution is patient navigation, an intervention originally developed to reduce health care disparities. The patient navigator, trained to address barriers to care, guides patients with suspicious findings (e.g., positive screening) through and around such barriers to ensure timely diagnosis and treatment. Patient navigation has improved receipt of preventive care among low-income, minority children but has not been tested for improving early ASD identification and treatment. The goal of Screening and Linkage to Services for Autism (SaLSA) is to test the effect of patient navigation on identification and treatment of ASD within the first three years of life among minority, disadvantaged children in an urban, safety net health system. SaLSA uses the RE-AIM framework, a set of criteria for translating research into action, to guide planning and evaluation of autism patient navigation in order to increase its potential for widespread application and public health impact. The study population comprises children aged 16-30 months (74% Hispanic) who are seen for well visits in pediatric community health centers (CHC) within a large, urban CHC system. In a mixed-methods design, a randomized controlled trial of children with positive M-CHAT-R screens will test the effectiveness of patient navigation for improving rates and timing, and reducing age, of referral, diagnostic evaluation / eligibility determination and initiation and sustained engagement in early intervention (EI) services (Effectiveness, Maintenance). Descriptive and qualitative methods will examine Reach in the target population, Implementation consistency, and potential for widespread Adoption and Maintenance. Data collection will include linked electronic records of the CHC system and EI provider, patient navigator records, standardized interviews with intervention families, and key informant interviews with clinical and service providers and families. To assure the project's cultural competence, a community-based network of Spanish-speaking families who have children with disabilities will collaborate on planning and evaluation. If proven effective, patient navigation could be implemented widely to identify and treat children with ASD at an earlier age, particularly children from minority, disadvantaged populations previously shown to have significant barriers to receipt of ASD services, thereby substantially improving health and well-being and reducing disparities among children with ASD.
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