Emily Feinberg

The impact of race on participation in Part C early intervention services

Objective: To quantify racial differences in receipt of early intervention (EI) services among children ages birth to 3 years. Methods: Multivariable analyses of a nationally representative sample of children eligible for EI services using data from the Early Child Longitudinal Study, Birth Cohort was conducted. Birth weight <1000 g, genetic and medical conditions associated with developmental delay, or low scores on a standardized measure of developmental performance defined EI eligibility. Receipt of EI services was ascertained from parent self-report. The effect of race on receipt of EI services was examined in main effect models and models stratified by EI qualifying condition, which was defined as either established medical condition or developmental delay in the absence of an underlying medical diagnosis. Results: At 9 months of age, among the 1000 children eligible for EI services, 9% of children received services; there were no black-white racial differences in receipt of services. At 24 months of age, among the 1000 children eligible for EI services, 12% received services; black children were 5 times less likely to receive services than white children (adjusted odds ratio [aOR] 0.19; 95% confidence interval [CI] 0.09, 0.39). In models stratified by qualifying condition, black children who qualified for services at 24 months based on developmental delay alone were less likely to receive services (aOR 0.09; 95% CI 0.02, 0.39); there were no differences by race among children who qualified based on established medical conditions (aOR 0.56; 95% CI 0.18, 1.72). Conclusions: Racial disparities in EI service receipt, which were not present during infancy, emerged as children became toddlers. These disparities were found most consistently among children who qualified for services based on developmental delay alone.

Improving Maternal Mental Health After a Child’s Diagnosis of Autism Spectrum Disorder: Results From a Randomized Clinical Trial

IMPORTANCE The prevalence of psychological distress among mothers of children with autism spectrum disorder (ASD) suggests a need for interventions that address parental mental health during the critical period after the childs autism diagnosis when parents are learning to navigate the complex system of autism services. OBJECTIVE To investigate whether a brief cognitive behavioral intervention, problem-solving education (PSE), decreases parenting stress and maternal depressive symptoms during the period immediately following a childs diagnosis of ASD. DESIGN, SETTING, AND PARTICIPANTS A randomized clinical trial compared 6 sessions of PSE with usual care. Settings included an autism clinic and 6 community-based early intervention programs that primarily serve low-income families. Participants were mothers of 122 young children (mean age, 34 months) who recently received a diagnosis of ASD. Among mothers assessed for eligibility, 17.0% declined participation. We report outcomes after 3 months of follow-up (immediate postdiagnosis period). INTERVENTIONS Problem-solving education is a brief, cognitive intervention delivered in six 30-minute individualized sessions by existing staff (early intervention programs) or research staff without formal mental health training (autism clinic). MAIN OUTCOMES AND MEASURES Primary outcomes were parental stress and maternal depressive symptoms. RESULTS Fifty-nine mothers were randomized to receive PSE and 63 to receive usual care. The follow-up rate was 91.0%. Most intervention mothers (78.0%) received the full PSE course. At the 3-month follow-up assessment, PSE mothers were significantly less likely than those serving as controls to have clinically significant parental stress (3.8% vs 29.3%; adjusted relative risk [aRR], 0.17; 95% CI, 0.04 to 0.65). For depressive symptoms, the risk reduction in clinically significant symptoms did not reach statistical significance (5.7% vs 22.4%; aRR, 0.33; 95% CI, 0.10 to 1.08); however, the reduction in mean depressive symptoms was statistically significant (Quick Inventory of Depressive Symptomatology score, 4.6 with PSE vs 6.9 with usual care; adjusted mean difference, -1.67; 95% CI, -3.17 to -0.18). CONCLUSIONS AND RELEVANCE The positive effects of PSE in reducing parenting stress and depressive symptoms during the critical postdiagnosis period, when parents are asked to navigate a complex service delivery system, suggest that it may have a place in clinical practice. Further work will monitor these families for a total of 9 months to determine the trajectory of outcomes. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT01021384.

Ethnically Diverse Mothers’ Views on the Acceptability of Screening for Maternal Depressive Symptoms during Pediatric Well-Child Visits

The under-identification of depressive symptoms among low-income, minority women contributes to disparities in mental health outcomes. Pediatric visits offer a new venue for the identification of such symptoms. We explored women’s views related to depression screening during pediatric well-child visits in interviews conducted with 42 mothers of diverse ethnicities. Women considered their child’s pediatric provider to be an appropriate person with whom to discuss their emotional health and were aware of the inter-relationship between their mood and their child’s well-being. Thus, they felt discussing their emotional health was an acceptable component of pediatric health care. Stigma and fear of child protective services were concerns. Women articulated strategies to improve acceptability of screening, including providing a clear rationale for screening, services available, and child protective service involvement. The perspectives of women of diverse ethnicities provide information that may improve identification of mothers with depressive symptoms and potentially reduce disadvantages in mental health outcomes in minority populations.

Collaborative Care for Children With ADHD Symptoms: A Randomized Comparative Effectiveness Trial

OBJECTIVES: Although many attention-deficit/hyperactivity disorder (ADHD) care models have been studied, few have demonstrated individual-level symptom improvement. We sought to test whether complementing basic collaborative care with interventions that address common reasons for symptom persistence improves outcomes for children with inattention and hyperactivity/impulsivity. METHODS: We conducted a randomized comparative effectiveness trial of 2 care management systems for 6- to 12-year-old children being evaluated for ADHD (n = 156). All participants received care management with decision support. Care managers in the enhanced care arm also were trained in motivational and parent management techniques to help parents engage in their child’s treatment, address their own mental health needs, and manage challenging child behaviors. We used multivariable models to assess inattention, hyperactivity/impulsivity, oppositionality, and social skills over 1 year. RESULTS: Both treatment arms generated guideline concordant diagnostic processes in 94% of cases; 40% of children had presentations consistent with ADHD. For the entire sample, there were no differences in symptom trajectories between study arms; mean differences in change scores at 12 months were –0.14 (95% confidence interval –0.34 to 0.07) for inattention; –0.13 (–0.31 to 0.05) for hyperactivity/impulsivity; –0.09 (–0.28 to 0.11) for oppositionality; and 3.30 (–1.23 to 7.82) for social skills. Among children with ADHD-consistent presentations, enhanced arm participants experienced superior change scores for hyperactivity/impulsivity of –0.36 (–0.69 to –0.03), oppositionality –0.40 (–0.75 to –0.05), and social skills 9.57 (1.85 to 17.28). CONCLUSIONS: Among children with ADHD-consistent presentations, addressing barriers to engagement with care and challenging child behaviors has potential to improve the effectiveness of collaborative care.

Adaptation of problem-solving treatment for prevention of depression among low-income, culturally diverse mothers

Adapting evidence-based interventions to be more accessible and culturally sensitive to the needs of diverse populations is a potential strategy to address disparities in mental health care. We adapted an evidence-based depression-treatment strategy, Problem-Solving Treatment, to prevent depression among low-income mothers with vulnerable children. Intervention adaptations spanned 3 domains: (1) the interventions new prevention focus, (2) conducting a parent-focused intervention in venues oriented to children; and (3) cultural competency. The feasibility of adaptations was assessed through 2 pilot-randomized trials (n = 93), which demonstrated high participant adherence, satisfaction, and retention, demonstrating the feasibility of our adaptations.

Comorbid Posttraumatic Stress Symptoms in an Urban Population of Mothers Screening Positive for Depression

Screening for maternal depression in clinical and community settings has been the topic of numerous recent studies and an important component of the 2009 Institute of Medicine (IOM) report, Depression in Parents, Parenting, and Children.1 According to the IOM report, however, studies of maternal depression screening have largely ignored the implications of comorbid mental health conditions on screening approaches and evaluation of screening effectiveness.1 One condition that may accompany – and complicate – maternal depression is posttraumatic stress disorder (PTSD). PTSD and depression share several diagnostic criteria, and depression – when accompanied by posttraumatic stress symptoms – is less responsive to treatment.2 Whereas depression has an extensive evidence-base for effective primary care-based treatment, PTSD typically requires mental health specialty services. In certain high risk populations, therefore, it is important to understand the likelihood with which depression screening instruments identify mothers who may have PTSD.

Patient Navigation for Mothers with Depression who Have Children in Head Start: A Pilot Study

This study assesses the potential of social work–facilitated patient navigation to help mothers with depression engage with mental health care. We conducted a randomized pilot trial (N = 47) in Head Start—a U.S. preschool program for low-income children. Seven lay navigators received training and supervision from professional social workers. After 6 months, more navigated participants engaged with a psychologist, therapist, or social worker (45% vs. 13%, 95% confidence interval [CI] [2, 57]); engaged with any provider, (55% vs. 26%, 95% CI [1, 56]); and reported having a “depression care provider” (80% vs. 41%, 95% CI [9, 65]). Community-based navigation appears feasible; however, more definitive testing is necessary.

Efficacy of a Maternal Depression Prevention Strategy in Head Start: A Randomized Clinical Trial

Importance Low-income and minority mothers experience a disproportionate incidence of depression and lack access to treatment services. Development of prevention strategies in accessible community-based venues is a potentially important public health strategy. Objective To determine the efficacy of a depression prevention strategy embedded in Head Start. Design, Setting, and Participants This randomized clinical trial was performed from February 15, 2011, through May 9, 2016, at 6 Head Start agencies serving families at or below the federal poverty level. Participants included mothers with depressed mood, anhedonia, or depression history but who were not in a current major depressive episode. Participants were followed up for 12 months with masked outcome assessments. Final follow-up was completed on May 9, 2016. Interventions Participants were randomized to a problem-solving education (PSE) intervention (n = 111) or usual Head Start services (n = 119). Main Outcomes and Measures Primary outcomes were problem-solving skills and depressive symptoms. To capture the chronicity and intensity of symptoms, the Quick Inventory of Depressive Symptoms was administered bimonthly, and rates of clinically significant symptom elevations were compared across groups. Secondarily, the presence of a major depressive episode was assessed using the Structured Clinical Interview for DSM-IV Axis I Disorders. Results Among the 230 participants, 152 (66.1%) were Hispanic, with a mean (SD) age of 31.4 (7.3) years. An intention-to-treat analysis among 223 participants contributing follow-up data found no differences in problem-solving skills across groups. The mean (SD) number of depressive symptom elevations among the PSE participants was 0.84 (1.39) compared with 1.12 (1.47) among the usual service participants (adjusted incident rate ratio [aIRR], 0.60; 95% CI, 0.41-0.90). In analyses stratified according to baseline depressive symptoms, PSE exerted a preventive effect among those with lower-level baseline symptoms, with a mean (SD) of 0.39 (0.84) elevations among PSE participants compared with 0.88 (1.37) among usual service participants (aIRR, 0.39; 95% CI, 0.21-0.75). However, no difference was observed among those with higher-level baseline symptoms (mean [SD] elevations, 2.06 [1.92] for PSE and 2.00 [1.91] for usual service; aIRR, 1.10; 95% CI, 0.67-1.80). Analysis of symptom scores followed the same pattern, with an adjusted mean reduction of 1.33 (95% CI, 0.36-2.29) among participants with lower-level baseline symptoms. Conclusions and Relevance The PSE intervention is efficacious in preventing depressive symptom episodes and performs optimally among those with initial low-level symptoms. Additional effectiveness studies in Head Start are necessary to develop meaningful public health programs. Trial Registration clinicaltrials.gov Identifier: NCT01298804

Music Therapy for Children With Autism Spectrum Disorder

In this issue of JAMA, Bieleninik and colleagues1 present the results of a large, well-designed, multicenter randomized clinical trial (RCT) of improvisational music therapy for young children with autism spectrum disorder (ASD). Music therapy is “a systematic process of intervention wherein the therapist helps the client to promote health, using musical experiences and the relationships that develop through them.”2 Among 364 children aged 4 to 7 years, over 5 months, the mean scores on the Autism Diagnostic Observation Schedule (ADOS), social affect domain, decreased from 14.08 to 13.23 among children randomized to improvisational music therapy and from 13.49 to 12.58 among those randomized to enhanced standard care, a mean difference in change scores of 0.06 (95% CI, −0.70 to 0.81), with no significant differences between groups. The results of the RCT by Bieleninik et al contrast with those of a Cochrane Collaboration meta-analysis by Geretsegger et al3 that found sufficient evidence that music therapy was associated with improvement in core symptoms of ASD. The meta-analysis of 10 studies (9 RCTs, 165 children), found moderate-to-large effects of music therapy on social interaction, nonverbal communication, social-emotional reciprocity, and parent-child relationship. The contradictory results between the RCT by Bieleninik et al and the Cochrane review by Geretsegger et al highlight an important debate concerning the differential merits of a large RCT and a comprehensive meta-analysis.4 These 2 types of studies are generally considered the most rigorous forms of clinical evidence5; when they produce inconsistent findings, exploring the basis for this inconsistency is important. The Cochrane review included studies that were limited by small sample sizes (median, 10 [range, 4-50]), included children with wide age ranges (2-9 years), and tested a heterogeneous group of music therapies (eg, interactive music therapy, structured receptive music therapy, relational music therapy). All studies in the meta-analysis were graded by Cochrane investigators as either of moderate or low quality. The RCT by Bieleninik et al addresses a number of the limitations of the Cochrane review by Geretsegger et al. The RCT enrolled a large number of participants (n = 364), used a narrow age range for inclusion (4-7 years), tested a single form of music therapy, and monitored intervention fidelity. Given the findings of no difference between groups produced by such a rigorous study design, it is important to ask whether this RCT marks the end of improvisational music therapy as a potential intervention for children with ASD. Such a definitive conclusion seems premature. Randomized clinical trials are the cornerstone of clinical effectiveness research, and designing them invariably confronts investigators with a series of important methodologic trade-offs. In recent years, concerns have been raised that traditional RCTs with restrictive eligibility criteria and optimized intervention delivery may overestimate benefits and sacrifice generalizability for the sake of control of internal validity.6 In response to these concerns, the last decade has seen an increase in pragmatic trials.7 Pragmatic trials aim to produce data that inform health care decision making in actual clinical settings; explanatory trials, by contrast, ascertain outcomes that interventions could produce under controlled circumstances.8 Whereas participant eligibility criteria for a pragmatic trial should mimic the diversity of community-based practice, explanatory eligibility criteria might restrict a population to those most likely to respond. Whereas a pragmatic approach to intervention delivery would allow adaptation to demands of clinical practice, an explanatory approach would prioritize fidelity over adaptability.9 Both explanatory and pragmatic trials have important roles in clinical research. Deciding when a trial should emphasize one approach vs the other is important to establishing a usable evidence base. Bieleninik et al conducted a fundamentally pragmatic trial. The authors recruited participants from 9 countries, and despite the appropriately narrow age range, they imposed few other exclusion criteria. Children were ineligible only if they had a serious sensory disorder or had received music therapy in the last 12 months. Children with any intelligence level were included, and there were no exclusions for comorbid conditions. Therefore, study participants represented many different languages, musical traditions, cultural expectations around child development, and cognitive abilities, and they likely were embedded in communities with variability in available ASD services. Although such broad inclusion criteria reflect clinical practice, this approach creates the possibility that results were averaged over a heterogeneous population of possible responders and nonresponders, thereby reducing investigators’ ability to show differences in aggregate. For example, autistic children with intellectual disabilities are less likely to respond to many forms of ASD treatment10; these children constituted nearly half the population in the trial. The investigators also took a pragmatic approach to intervention delivery. Children in both the music therapy and the standard care groups received a number of concomitant interventions as part of their usual care (eg, speech therapy, social skills training). Because investigators allowed families flexibility in determining their own treatment schedule, Related article page 525 Opinion

Reducing Disparities in Timely Autism Diagnosis Through Family Navigation: Results From a Randomized Pilot Trial

OBJECTIVE Emerging evidence suggests that autism spectrum disorder (ASD) can be diagnosed by age 18 months and that early intensive behavioral intervention positively affects ASD core deficits. This pilot randomized controlled trial examined the feasibility of using an adapted form of patient navigation, Family Navigation (FN), to improve timely diagnosis of ASD in low-income families from racial-ethnic minority groups. METHODS Forty children referred for an ASD diagnostic assessment were randomly allocated to receive FN or usual care. The primary outcome, time to diagnostic resolution, was assessed with survival analysis. RESULTS Nineteen of 20 FN children completed the diagnostic assessment, compared with 11 of 19 children receiving usual care (hazard ratio=3.21, 95% confidence interval=1.47-6.98, p<.01). In regard to engagement of participants, 17 of 20 families (85%) met with the navigator for the targeted three in-person visits (median=4, range 1-9). CONCLUSIONS FN may be a promising intervention to address barriers that impede timely ASD diagnosis.