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Original Investigation
January 11, 2021

Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism: A Randomized Clinical Trial From DBPNet

Author Affiliations
  • 1Division of General Academic Pediatrics, Department of Pediatrics, Boston University School of Medicine, Boston, Massachusetts
  • 2Department of Community Health Sciences, Boston University School of Public Health, Boston, Massachusetts
  • 3Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Boston University School of Medicine, Boston, Massachusetts
  • 4Department of Pediatrics, Boston Medical Center, Boston, Massachusetts
  • 5Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 6Developmental and Behavioral Pediatrics, Division of General Pediatrics, Department of Pediatrics, Yale School of Medicine, New Haven, Connecticut
  • 7Now with Division of Developmental Medicine, Boston Children’s Hospital, Boston, Massachusetts
  • 8Now with Waisman Center, University of Wisconsin–Madison, Madison
  • 9Department of Psychological and Brain Sciences, Boston University, Boston, Massachusetts
  • 10Department of Biostatistics, Boston University School of Public Health, Boston, Massachusetts
  • 11Biostatistics, Epidemiology, and Data Analytics Center, Boston University School of Public Health, Boston, Massachusetts
  • 12The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts
  • 13Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia
  • 14Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia
  • 15Department of Biostatistics, Epidemiology, and Informatics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia
JAMA Pediatr. Published online January 11, 2021. doi:10.1001/jamapediatrics.2020.5218
Key Points

Question  Does family navigation (FN), an individually tailored, culturally informed care management strategy, increase the likelihood of achieving diagnostic ascertainment among children from low-income, racial/ethnic minority families who have positive screening results for autism spectrum disorder (ASD)?

Findings  In this multisite randomized clinical trial of 249 children aged 15 to 27 months, FN decreased the time to diagnostic ascertainment and increased the likelihood of diagnostic ascertainment over the course of 1 year. However, Hispanic ethnicity and site moderated the effect of FN.

Meaning  Family navigation is a promising approach to improve early ASD diagnosis among children from low-income, racial/ethnic minority families; its effects may be contextually dependent.

Abstract

Importance  Early 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 Participants  This 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 Measures  The 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, 1.45-1.53]). 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 Relevance  Family 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 differential effects of FN by site and ethnicity.

Trial Registration  ClinicalTrials.gov Identifier: NCT02359084

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