Screening and Linkage to Services for Autism (SaLSA): Randomized Controlled Trial of Family Navigation

Background: Autism spectrum disorder (ASD) is under-diagnosed and under-treated in young children, particularly minority and disadvantaged children. Even with routine ASD screening, many screen-positive children fail to receive appropriate referral, evaluation, or services. Patient navigation, originally developed to address healthcare disparities, could facilitate referral, evaluation, and linkage to early intervention (EI) services.

Objectives: Evaluate the effect of family navigation for children with positive ASD screening on referral, evaluation and linkage to EI services.

Methods: Using a randomized controlled trial design, children aged 16-30 months seen for well care in a community health center network, who had an initial score ≥3 on the Modified Checklist for Autism in Toddlers-Revised with Follow-Up (M-CHAT-R/F), were randomly allocated to family navigation (if needed) or usual care. A bilingual, trained family navigator (FN) contacted intervention-group families if referral for evaluation was indicated (whether or not a referral had occurred) based on the M-CHAT-R/F: initial score ≥8 or initial score 3-7 with Follow-Up score ≥2. The FN offered care coordination, education, coaching, translation/interpretation, and psychosocial and practical support. The FN also assisted families of children with initial scores of 3-7 to obtain the indicated Follow-Up when not done, and offered navigation if the Follow-Up score was ≥2. Outcome data were obtained from electronic health and EI records. Generalized linear models with log links were used to compare outcomes between groups based on intention-to-treat.

Results: Families of 275 children were randomized to intervention (n=142) or control (n=133). Children were 62% male, 61% Hispanic, 44% non-White, and 93% insured by Medicaid (for low-income families); 30% lived in non-English-speaking households. Of intervention-group families, 52 were eligible for family navigation based on the need for referral; 22 families (42%) were successfully contacted and accepted FN assistance. Intervention children were significantly more likely than controls to complete the full two-step M-CHAT-R/F (68% vs. 54%, RR=1.25, 95%CI: 1.03, 1.52, p=0.02). There were no significant between-group differences in their likelihood of being referred for EI eligibility determination (45% vs. 45%, p=0.99), completing an evaluation for EI eligibility (25% vs. 23%, p=0.69), or initiating services (20% vs. 20%, p=0.86). However, intervention children were nearly three times as likely to undergo a diagnostic evaluation for ASD (11% vs 4%, RR=2.81 [1.05, 7.52], p=0.04). Twelve (8%) intervention and five (4%) control children were diagnosed with ASD (RR=2.25 [0.81, 6.21], p=0.12). Results were similar when limited to children who had received a referral for eligibility determination.

Conclusions: With family navigator assistance, young, minority, low-income children at risk for ASD were more likely to complete the full two-step M-CHAT-R/F and an ASD diagnostic evaluation. However, family navigation did not increase referral by healthcare providers, evaluation for EI eligibility or initiation of EI services. In both study groups, large proportions of referred children failed to complete evaluations for EI eligibility and for ASD. Even with trained, bilingual, Latina navigators, engaging families was difficult. Research is needed to identify effective methods to improve uptake of family navigation and to increase evaluation after a positive ASD screen in low-income, minority families.