Improving autism and developmental screening and referral in US primary care practices serving Latinos

Abstract

Improving autism spectrum disorder screening and referral in primary care may reduce autism spectrum disorder disparities for Latino children. The REAL-START intervention aimed to increase primary care provider adherence to autism spectrum disorder and developmental screening guidelines, and to increase Early Intervention referral for children at developmental risk in primary care clinics serving Latinos. This quasi-experimental study enrolled six Oregon primary care clinics. Clinic staff attended one initial and three follow-up trainings. Trainings addressed screening, billing, referral, and follow-up issues specific to Latinos. Clinic leaders met with a quality improvement facilitator to review performance. Medical record review measured screening and referral at 18- and 24-month well-child visits at baseline and 3, 6, 9, and 12 months. State Early Intervention database queries assessed Early Intervention eligibility. Overall, 2224 well-child visits were assessed (39% Latino). Clinics improved rates of autism spectrum disorder screening from 70% to 94% and general developmental screening from 62% to 95%. Adherence to screening guidelines increased from 46% to 91%. Proportion of children referred to Early Intervention for unchanged, but total referrals increased and age range of referred children broadened. Time to Early Intervention evaluation was slightly shorter among screening-age children. REAL-START may improve screening and referral for autism spectrum disorder and developmental delay in Latino communities. Lay abstract Latino children experience delays in access to diagnosis and treatment of autism spectrum disorder. Primary care–based screening of all children for autism spectrum disorder and referring them for services may reduce racial/ethnic differences and improve care. REAL-START, a yearlong screening intervention, was effective in increasing screening for autism spectrum disorder and general developmental delays, increasing therapy referrals, and shortening time for developmental assessment in primary care clinics with Latino patients.

Disparities in Early Intervention Program Participation by Children With Autism Spectrum Disorder in a US Metropolitan Area, 2006 to 2016

“…Universal autism screening of toddler-age children is needed to identify those who are at risk and to provide appropriate care and services for affected persons with a range of impairment. Some studies 44 suggest that autism screening is lagging in the US compared with other developed countries. Our findings show that underserved areas should be particularly targeted for ASD screening initiatives.…”

Associations Among Referral Concerns, Screening Results, and Diagnostic Outcomes of Young Children Assessed in a Statewide Early Autism Evaluation Network

“…These results bring into question how referring PCPs are using MCHAT-R/F results to inform their developmental concerns in children ultimately referred for evaluation, and whether they are communicating screening results to the child's caregivers. Although recent research suggests that there are low rates of subsequent referral for diagnostic evaluation after positive ASD screening (30,44,45), there has been little attention paid to the qualitative process of how PCPs make decisions about screening and referral. While the critical outcome is that children in our EAE Hub system were ultimately referred for evaluation, as discussed above, there are likely to be downstream consequences if a reciprocal dialogue between the PCP and caregiver regarding the potential meaning of screening results does not occur at the time of referral.…”

“…Finally, given that this is a quality improvement initiative and our goal was to minimize burden on the EAE Hubs, we did not collect demographic information on the children evaluated. It is critical that research addresses factors of racial and socioeconomic diversity, equity, and healthcare access in light of studies demonstrating disparities in ASD screening, referral, and diagnosis (22,30,44). Future research regarding the EAE Hub system must attend to this call (and, as such, we began collecting demographic data in 2020).…”

Parents' Concerns Are Associated with Early Intervention Evaluation and Eligibility Outcomes

“…Data for this study were collected as part of the REAL-START study. 20 REAL-START was a quasi-experimental intervention aiming to increase primary care provider (PCP) referrals to early intervention (EI) for children with autism spectrum disorder (ASD) and developmental delay (DD) risks by offering on-site training in developmental and ASD screening. The study lasted from 2016 to 2018 and was held in 6 Oregon primary care clinics serving many Latinx patients.…”

“…Primary outcomes of the larger study included rates of general developmental and ASD screening, rates of billing for screenings performed, and rates of referral to EI of children with high-risk screening results. 20 Overall, REAL-START included 2224 children (39% Latinx and 20% with Spanish as a primary language) screened at well-child checks and 428 who were referred to EI.…”