Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism: A Randomized Clinical Trial From DBPNet
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...
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| Published in: | JAMA pediatrics Vol. 175; no. 3; p. 243 |
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| Main Authors: | , , , , , , , , , , , , , , , , , , , |
| Format: | Journal Article |
| Language: | English |
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01.03.2021
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| ISSN: | 2168-6211, 2168-6211 |
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| Abstract | 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.
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.
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.
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.
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.
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]).
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.
ClinicalTrials.gov Identifier: NCT02359084. |
|---|---|
| AbstractList | 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.
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.
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.
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.
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.
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]).
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.
ClinicalTrials.gov Identifier: NCT02359084. 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.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.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.ObjectiveTo 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.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.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.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.InterventionsFamilies 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.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.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.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]).ResultsAmong 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]).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.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 differential effects of FN by site and ethnicity.ClinicalTrials.gov Identifier: NCT02359084.Trial RegistrationClinicalTrials.gov Identifier: NCT02359084. |
| Author | Chu, Andrea Rosenberg, Jessica Fenick, Ada M Bennett, Amanda Guevara, James P Feinberg, Emily Hickey, Emily Fernandez-Pastrana, Ivys Patts, Gregory Weitzman, Carol Broder-Fingert, Sarabeth Blum, Nathan J Augustyn, Marilyn Cabral, Howard J Sandler Eilenberg, Jenna Silverstein, Michael Miller, Judith S Levinson, Julia Kuhn, Jocelyn Diaz-Linhart, Yaminette |
| Author_xml | – sequence: 1 givenname: Emily surname: Feinberg fullname: Feinberg, Emily organization: Department of Community Health Sciences, Boston University School of Public Health, Boston, Massachusetts – sequence: 2 givenname: Marilyn surname: Augustyn fullname: Augustyn, Marilyn organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 3 givenname: Sarabeth surname: Broder-Fingert fullname: Broder-Fingert, Sarabeth organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 4 givenname: Amanda surname: Bennett fullname: Bennett, Amanda organization: Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania – sequence: 5 givenname: Carol surname: Weitzman fullname: Weitzman, Carol organization: Now with Division of Developmental Medicine, Boston Children's Hospital, Boston, Massachusetts – sequence: 6 givenname: Jocelyn surname: Kuhn fullname: Kuhn, Jocelyn organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 7 givenname: Emily surname: Hickey fullname: Hickey, Emily organization: Now with Waisman Center, University of Wisconsin-Madison, Madison – sequence: 8 givenname: Andrea surname: Chu fullname: Chu, Andrea organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 9 givenname: Julia surname: Levinson fullname: Levinson, Julia organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 10 givenname: Jenna surname: Sandler Eilenberg fullname: Sandler Eilenberg, Jenna organization: Department of Psychological and Brain Sciences, Boston University, Boston, Massachusetts – sequence: 11 givenname: Michael surname: Silverstein fullname: Silverstein, Michael organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 12 givenname: Howard J surname: Cabral fullname: Cabral, Howard J organization: Department of Biostatistics, Boston University School of Public Health, Boston, Massachusetts – sequence: 13 givenname: Gregory surname: Patts fullname: Patts, Gregory organization: Biostatistics, Epidemiology, and Data Analytics Center, Boston University School of Public Health, Boston, Massachusetts – sequence: 14 givenname: Yaminette surname: Diaz-Linhart fullname: Diaz-Linhart, Yaminette organization: The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts – sequence: 15 givenname: Ivys surname: Fernandez-Pastrana fullname: Fernandez-Pastrana, Ivys organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 16 givenname: Jessica surname: Rosenberg fullname: Rosenberg, Jessica organization: Department of Pediatrics, Boston Medical Center, Boston, Massachusetts – sequence: 17 givenname: Judith S surname: Miller fullname: Miller, Judith S organization: Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia – sequence: 18 givenname: James P surname: Guevara fullname: Guevara, James P organization: Department of Biostatistics, Epidemiology, and Informatics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia – sequence: 19 givenname: Ada M surname: Fenick fullname: Fenick, Ada M organization: Developmental and Behavioral Pediatrics, Division of General Pediatrics, Department of Pediatrics, Yale School of Medicine, New Haven, Connecticut – sequence: 20 givenname: Nathan J surname: Blum fullname: Blum, Nathan J organization: Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia |
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| Snippet | Early identification of autism spectrum disorder (ASD) is associated with improved cognitive and behavioral outcomes. Targeted strategies are needed to support... |
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| SubjectTerms | Autistic Disorder - diagnosis Autistic Disorder - psychology Child, Preschool Diagnostic Techniques and Procedures - psychology Diagnostic Techniques and Procedures - standards Family Relations - psychology Female Humans Infant Male Patient Acceptance of Health Care - psychology Patient Acceptance of Health Care - statistics & numerical data Patient Navigation - methods Patient Navigation - standards Patient Navigation - statistics & numerical data |
| Title | Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism: A Randomized Clinical Trial From DBPNet |
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