Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism

Abstract

IMPORTANCEEarly identification of autism spectrum disorder (ASD) is associated with improved cognitive and behavioral outcomes. Targeted strategies are needed to support equitable access to diagnostic services to ensure that children from low-income and racial/ethnic minority families receive the benefits of early ASD identification and treatment.OBJECTIVE To test the efficacy of family navigation (FN), an individually tailored, culturally informed care management strategy, to increase the likelihood of achieving diagnostic ascertainment among young children at risk for ASD. DESIGN, SETTING, AND PARTICIPANTSThis randomized clinical trial of 249 families of children aged 15 to 27 months who had positive screening results for possible ASD was conducted in 11 urban primary care sites in 3 cities. Data collection occurred from February 24, 2015, through November 5, 2018. Statistical analysis was performed on an intent-to-treat basis from November 5, 2018, to July 27, 2020.INTERVENTIONS Families were randomized to FN or conventional care management (CCM). Families receiving FN were assigned a navigator who conducted community-based outreach to families to address structural barriers to care and support engagement in recommended services. Families receiving CCM were assigned to a care manager, who did limited telephone outreach. Families received FN or CCM after positive initial screening results and for 100 days after diagnostic ascertainment. MAIN OUTCOMES AND MEASURESThe primary outcome, diagnostic ascertainment, was measured as the number of days from randomization to completion of the child's clinical developmental evaluation, when a diagnosis of ASD or other developmental disorder was determined.RESULTS Among 250 families randomized, 249 were included in the primary analysis (174 boys [69.9%]; mean [SD] age, 22.0 [3.5] months; 205 [82.3%] publicly insured; 233 [93.6%] non-White). Children who received FN had a greater likelihood of reaching diagnostic ascertainment over the course of 1 year (FN, 108 of 126 [85.7%]; CCM, 94 of 123 [76.4%]; unadjusted hazard ratio [HR], 1.39 [95% CI, 1.05-1.84]). Site (Boston, New Haven, and Philadelphia) and ethnicity (Hispanic vs non-Hispanic) moderated the effect of FN (treatment × site interaction; P = .03; Boston: HR, 2.07 [95% CI, 1.31-3.26]; New Haven: HR, 1.91 [95% CI, 0.94-3.89]; and Philadelphia: HR, 0.91 [95% CI, 0.60-1.37]) (treatment × ethnicity interaction; P < .001; Hispanic families: HR, 2.81 [95% CI, 2.23-3.54] vs non-Hispanic families: HR, 1.49 [95% CI,). The magnitude of FN's effect was significantly greater among Hispanic families than among non-Hispanic families (diagnostic ascertainment among Hispanic families: FN, 90.9% [30 of 33], and CCM, 53.3% [16 of 30]; vs non-Hispanic families: FN, 89.7% [35 of 39], and CCM, 77.5% [31 of 40]). CONCLUSIONS AND RELEVANCEFamily navigation improved the likelihood of diagnostic ascertainment among children from racial/ethnic minority, low-income families who were detected as at risk for ASD in primary care. Results suggest ...

Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder

“…FN is a structured, manualized intervention consisting of core components (Broder-Fingert et al, 2020) designed to support families from the time of a positive ASD screen through engagement in recommended services. FN has been found to increase the likelihood of, and decrease time to, diagnostic ascertainment, particularly for Hispanic families (Feinberg et al, 2021).…”

“…In conclusion, Hispanic families seem to report lower stress, coping, and family impact throughout the diagnostic process, indicating significant protective and resilience factors. Although Hispanic families experience disparities in access to timely ASD diagnostic and treatment services (Christensen et al, 2018;Maenner et al, 2020;Magaña et al, 2013;Yingling et al, 2018), they also respond particularly well to culturally informed intervention efforts (Feinberg et al, 2021;Magaña et al, 2017), which may be due to their lower levels of stress and family impact. While there remains a need to test culturally informed interventions and better understand the unique needs of Hispanic families, our work suggests that differences in parent experiences may provide leverage and allow interventions and support to capitalize on the unique strengths of Hispanic families to reduce disparities.…”

Future Directions in Lay Health Worker Involvement in Children’s Mental Health Services in the U.S.

“…Navigation is particularly valuable in situations where families must interact with complex systems of care (Broder-Fingert, Qin, et al, 2019). For example, a recent study found that family navigation improves access to services for children with autism spectrum disorder (ASD), specifically decreasing the time from an initial positive screen to formal diagnosis (Feinberg et al, 2021). However, findings varied across site, suggesting differences in implementation that might lead to the success of the program.…”

“…If an LHW model of care is adopted that does not match the concerns regarding supply or demand for services, it is unlikely to impact equity in reach. For example, data from our team has shown that in a navigator/bridge role, LHWs can successfully link families to autism assessments and mental health services through making referrals and supporting access to specialist care (Barnett, Kia-Keating, et al, 2020;Feinberg et al, 2021). However, this could have a negative impact on the clinics that receive these referrals if it leads to longer waitlists.…”

“…Implementation refers to the consistent delivery of an EBP, including the strategies (e.g., training, supervision) that are needed to support delivering the EBP with fidelity (Shelton et al, 2020). Multi-site trials of LHW models of care consistently find differences across sites, suggesting differences in implementation that need to be understood (Dorsey et al, 2020;Feinberg et al, 2021;Patel et al, 2010). In order to study implementation, it is important to understand what high fidelity delivery of LHW delivered interventions is.…”