Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement.

Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.

Receipt of Behavioral Therapy in Preschool-Age Children with ADHD and Coexisting Conditions: A DBPNet Study.

OBJECTIVE: Practice guidelines from the American Academy of Pediatrics and Society for Developmental and Behavioral Pediatrics recommend evidence-based behavioral therapy (BT) as first-line treatment for preschool-age children with ADHD, prior to medication initiation. Thus, this study's objective is to present the frequency of physician-documented receipt of BT in preschool-age children with ADHD prior to medication initiation and to determine factors associated with receipt BT receipt. METHODS: This retrospective medical record review was conducted across 7 Developmental Behavioral Pediatrics Research Network (DBPNet) sites. Data were abstracted for children <72 months old seen by a DBP clinician and initiated on ADHD medication between 1/1/2013-7/1/2017. From narrative text of the medical records, BT receipt was coded as: parent training in behavior management (PTBM), Applied Behavior Analysis (ABA), other, or did not receive. RESULTS: Of the 497 children in this study; 225 children (45%) had reported receipt of any BT prior to ADHD medication initiation, with 15.9% (n = 79) receiving PTBM. Children with co-existing diagnoses of ASD or disruptive behavior disorder were more likely to receive BT than children without co-existing conditions (59.3% vs 69.0% vs 30.6%). There was significant site variability in reported receipt of BT, ranging from 22.4% to 74.1%, and sex and insurance were not associated with BT rates. CONCLUSION: The percentage of children with documented receipt of any BT, and particularly PTBM, was low across all sites and co-existing conditions. These findings highlight the universal need to increase receipt of evidence-based BT for all young children with ADHD.

Do Externalizing and Internalizing Symptoms Moderate Medication Response in Preschool Attention-Deficit/Hyperactivity Disorder? A DBPNet Study.

OBJECTIVES: This study aimed to determine whether parent ratings of attention-deficit/hyperactivity disorder (ADHD) symptom severity or externalizing symptoms (EXT) or internalizing symptoms (INT) moderate response to stimulants (STIM) and alpha-2 adrenergic agonists (A2As) in preschool ADHD. METHODS: Health records for children treated with medication for ADHD and with parent rating scale data available (N = 309; age <72 months) were reviewed at 7 Developmental-Behavioral Pediatric Research Network sites. Severity of ADHD was defined as the number of ADHD symptoms occurring often or very often on DSM-IV-based parent rating scales. EXT or INT from standardized rating scales were categorized as T score <60, 60 to <70, or ≥70. Ordinal logistic regression models predicting response to medication were calculated. RESULTS: The median (interquartile range) age at ADHD diagnosis was 59 (54-65) months. One hundred eighty-three participants had ADHD symptom severity, and 195 had EXT or INT data. ADHD severity was not associated with medication response. Both EXT and INT were associated with medication response but with significant medication class by EXT/INT interactions. Children with higher EXT were less likely to respond to STIM, with percentage of nonresponders for T-score categories <60, 60 to <70, and ≥70 being 3.6%, 25.7%, and 33.3% (p = 0.016) and, for A2As, being 60%, 50%, and 33.3% (p = 0.55), respectively. A similar pattern was observed for INT categories: STIM 19.4%, 22.5%, and 50.0% (p = 0.002) and A2As 42.3%, 30%, and 42.3% (p = 0.48), respectively. CONCLUSION: For preschool ADHD, low ratings of EXT or INT are associated with a high likelihood of response to STIM. By contrast, response rates to STIM and A2As are more similar for children with high levels of EXT or INT.

Effect of Family Navigation on Participation in Part C Early Intervention.

OBJECTIVE: Part C Early Intervention (EI) services have been shown to reduce autism symptoms and promote healthy development among young children. However, EI participation remains low, particularly among children from structurally marginalized communities. We investigated whether family navigation (FN) improved EI initiation following positive primary care screening for autism compared to conventional care management (CCM). METHODS: We conducted a randomized clinical trial among 339 families of children (ages 15-27 months) who screened as having an increased likelihood for autism at 11 urban primary care sites in 3 cities. Families were randomized to FN or CCM. Families in the FN arm received community-based outreach from a navigator trained to support families to overcome structural barriers to autism evaluation and services. EI service records were obtained from state or local agencies. The primary outcome of this study, EI service participation, was measured as the number of days from randomization to the first EI appointment. RESULTS: EI service records were available for 271 children; 156 (57.6%) children were not engaged with EI at study enrollment. Children were followed for 100 days after diagnostic ascertainment or until age 3, when Part C EI eligibility ends; 65 (89%, 21 censored) children in the FN arm and 50 (79%, 13 censored) children in the CCM arm were newly engaged in EI. In Cox proportional hazards regression, families receiving FN were approximately 54% more likely to engage EI than those receiving CCM (1.54 (95% confidence interval: 1.09-2.19), P = .02). CONCLUSIONS: FN improved the likelihood of EI participation among urban families from marginalized communities.

Adverse Effects of α-2 Adrenergic Agonists and Stimulants in Preschool-age Attention-deficit/Hyperactivity Disorder: A Developmental-Behavioral Pediatrics Research Network Study.

OBJECTIVES: To characterize and compare the type and frequency of a range of common and uncommon adverse effects (AEs) associated with α-2 adrenergic agonist (A2A) and stimulant treatment of attention-deficit/hyperactivity disorder at preschool-age as well as to evaluate the impact of age on common AEs. STUDY DESIGN: This was a retrospective electronic medical record review of children <72 months of age (n = 497) evaluated at outpatient developmental-behavioral pediatric practices at 7 US academic medical centers within the Developmental-Behavioral Pediatrics Research Network. Data on AEs were abstracted for children who had treatment initiated by a developmental-behavioral pediatrician with an A2A or stimulant medication between January 2013 and July 2017; follow-up was complete by February 2019. RESULTS: A2A and stimulants had distinctive AE profiles. A2A compared with stimulants had a greater proportion with daytime sleepiness and headaches; stimulants had significantly greater proportions for most other AE, including moodiness/irritability, difficulty with sleep, appetite suppression, stomachaches, skin picking/repetitive behaviors, withdrawn behavior, and weight loss. Younger age was associated with disruptive behavior and difficulty with sleep. CONCLUSIONS: Stimulants had a greater rate of most AEs compared with A2A. AE profiles, together with efficacy, should inform clinical decision-making. Prospective randomized clinical trials are needed to fully compare efficacy and AE profiles of A2A and stimulants.

Treatment of Attention-Deficit/Hyperactivity Disorder with Medication in Children with Autism Spectrum Disorder With and Without Intellectual Disability: A DBPNet Study.

Children with autism spectrum disorder (ASD) and intellectual disability (ID)/global delay (GD) frequently have symptoms of attention-deficit/hyperactivity disorder (ADHD). We describe the practice patterns of developmental behavioral pediatricians (DBPs) in the treatment of children with ASD and coexisting ADHD and compare medication classes for children with and without intellectual disability. In bivariate analyses, we compared demographic characteristics, co-occurring conditions, and medication classes for children with and without intellectual disability. Significantly more patients with ID/GD were prescribed α-agonists than patients without ID/GD, but the difference was no longer significant when controlling for age in logistic regression children with ID/GD had more comorbidities and were more likely to be prescribed more than on psychotropic medication. In conclusion, age rather than ID/GD was associated with medication choice.

Improving Care Management in Attention-Deficit/Hyperactivity Disorder: An RCT.

OBJECTIVES: To compare the effectiveness of care management combined with a patient portal versus a portal alone for communication among children with attention-deficit/hyperactivity disorder (ADHD). METHODS: Randomized controlled trial conducted at 11 primary care practices. Children aged 5 to 12 years old with ADHD were randomly assigned to care management + portal or portal alone. The portal included parent-reported treatment preferences and goals, medication side effects, and parent- and teacher-reported ADHD symptom scales. Care managers provided education to families; communicated quarterly with parents, teachers, and clinicians; and coordinated care. The main outcome, changes in the Vanderbilt Parent Rating Scale (VPRS) score as a measure of ADHD symptoms, was assessed using intention-to-treat analysis. RESULTS: A total of 303 eligible children (69% male; 46% Black) were randomly assigned, and 273 (90%) completed the study. During the 9-month study, parents in the care management + portal arm communicated inconsistently with care managers (mean 2.2; range 0-6) but similarly used the portal (mean 2.3 vs 2.2) as parents in the portal alone arm. In multivariate models, VPRS scores decreased over time (Adjusted ß = -.015; 95% confidence interval -0.023 to -0.07) in both groups, but there were no intervention-by-time effects (Adjusted ß = .000; 95% confidence interval -0.011 to 0.012) between groups. Children who received ≥2 care management sessions had greater reductions in VPRS scores than those with fewer sessions. CONCLUSIONS: Results did not provide evidence that care management combined with a patient portal was different from portal use alone among children with ADHD. Both groups demonstrated similar reductions in ADHD symptoms. Those families with greater care management engagement demonstrated greater reductions than those with less engagement.

α2-Adrenergic Agonists or Stimulants for Preschool-Age Children With Attention-Deficit/Hyperactivity Disorder.

Importance: Attention-deficit/hyperactivity disorder (ADHD) is diagnosed in approximately 2.4% of preschool-age children. Stimulants are recommended as first-line medication treatment. However, up to 25% of preschool-age children with ADHD are treated with α2-adrenergic agonist medications, despite minimal evidence about their efficacy or adverse effects in this age range. Objective: To determine the frequency of reported improvement in ADHD symptoms and adverse effects associated with α2-adrenergic agonists and stimulant medication for initial ADHD medication treatment in preschool-age children. Design, Setting, and Participants: Retrospective electronic health record review. Data were obtained from health records of children seen at 7 outpatient developmental-behavioral pediatric practices in the Developmental Behavioral Pediatrics Research Network in the US. Data were abstracted for 497 consecutive children who were younger than 72 months when treatment with an α2-adrenergic agonist or stimulant medication was initiated by a developmental-behavioral pediatrician for ADHD and were treated between January 1, 2013, and July 1, 2017. Follow-up was complete on February 27, 2019. Exposures: α2-Adrenergic agonist vs stimulant medication as initial ADHD medication treatment. Main Outcomes and Measures: Reported improvement in ADHD symptoms and adverse effects. Results: Data were abstracted from electronic health records of 497 preschool-age children with ADHD receiving α2-adrenergic agonists or stimulants. Median child age was 62 months at ADHD medication initiation, and 409 children (82%) were males. For initial ADHD medication treatment, α2-adrenergic agonists were prescribed to 175 children (35%; median length of α2-adrenergic agonist use, 136 days) and stimulants were prescribed to 322 children (65%; median length of stimulant use, 133 days). Improvement was reported in 66% (95% CI, 57.5%-73.9%) of children who initiated α2-adrenergic agonists and 78% (95% CI, 72.4%-83.4%) of children who initiated stimulants. Only daytime sleepiness was more common for those receiving α2-adrenergic agonists vs stimulants (38% vs 3%); several adverse effects were reported more commonly for those receiving stimulants vs α2-adrenergic agonists, including moodiness/irritability (50% vs 29%), appetite suppression (38% vs 7%), and difficulty sleeping (21% vs 11%). Conclusions and Relevance: In this retrospective review of health records of preschool-age children with ADHD treated in developmental-behavioral pediatric practices, improvement was noted in the majority of children who received α2-adrenergic agonists or stimulants, with differing adverse effect profiles between medication classes. Further research, including from randomized clinical trials, is needed to assess comparative effectiveness of α2-adrenergic agonists vs stimulants.

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

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.

Use of Telehealth in Fellowship-Affiliated Developmental Behavioral Pediatric Practices During the COVID-19 Pandemic.

OBJECTIVE: This study aims to describe the use of telehealth in developmental behavioral pediatric (DBP) fellowship-affiliated practices during the coronavirus disease 2019 (COVID-19) global pandemic. METHODS: An electronic survey was disseminated to all DBP fellowship-associated practice locations to determine the use of telehealth in DBP care provision, before and since the beginning of the COVID-19 pandemic. We analyzed responses using descriptive statistics. RESULTS: A total of 35 of 42 eligible practice sites responded (83% response rate). Most sites (51.4%) reported using telehealth less than once per month before the COVID-19 pandemic. Since the onset of COVID-19, 100% of programs reported conducting video-based telehealth visits multiple days per week. Most sites reported conducting evaluations and follow-up visits for attention-deficit/hyperactivity disorder, autism spectrum disorder, behavioral concerns, developmental delay, genetic disorders, and learning disability. Most sites were able to continue medication management by telehealth (>88%), offer interpreter services for families with limited English proficiency participating in telehealth visits (>90%), and incorporate trainees and interdisciplinary team members in telehealth visits (>90%). Greater variability was observed in sites' ability to collect telehealth practice evaluation measures. CONCLUSION: Most sites are providing evaluations and ongoing care for DBP conditions through telehealth. The rapid adoption of telehealth can have ramifications for the way that DBP care is delivered in the future; therefore, it is imperative to understand current practice patterns and variations to determine the best use of telehealth.

Epidemiology of Treatment for Preschoolers on Kentucky Medicaid Diagnosed with Attention-Deficit/Hyperactivity Disorder.

Objectives: The National Survey of Children's Health reported a concerning increase in children 2-5 years being diagnosed with attention-deficit/hyperactivity disorder (ADHD) in 2016. Concerns include both the increase in diagnosing and potential deviations from published guidelines for the treatment of ADHD in preschoolers. The present study aims to describe the epidemiology and factors associated with receiving the diagnosis and treatment types for low-income preschoolers. Methods: Using Kentucky Medicaid claims from 2012 to 2017, a retrospective cohort study of children 2-5 years of age (n = 337,631) with a diagnosis of ADHD (n = 11,712) was completed. Trends in demographics, comorbidities, and treatment and provider types are presented. Multinomial logistic regression was used to determine predictors of receipt of the diagnosis and treatment type (a stimulant only, an alpha-2 agonist [A2A] only, both, or neither) based on nonmissing 2017 data (n = 2394). Results: The number of children in the cohort diagnosed with ADHD and receiving a stimulant decreased from 2012 to 2017, but the use of A2As increased. Primary care physicians were the most frequent prescribers of both medications. The adjusted odds ratios (AORs) of receipt of an A2A alone, stimulant alone, or both medications over receiving no ADHD medication were associated with specific demographics and comorbid conditions for each medication regimen. Race/ethnicity is associated with receiving the diagnosis of ADHD and treatment with A2A. Comorbid mental health conditions and provider type are associated with treatment type. Conclusion: Use of stimulants for preschoolers in Kentucky has decreased and A2A use has increased since 2012. Continued vigilance and long-term follow-up of preschoolers with ADHD are warranted. The appropriateness of the diagnosis and treatment type could not be determined.

Behavioral Health Screening: Validation of a Strength-Based Approach.

OBJECTIVE: To evaluate the validity of the Behavioral Health Checklist (BHCL) strength-based factor scores and the extent to which this factor has a buffering effect on the relationship between behavioral health symptom severity and children's social problems. METHOD: The parents of 1,392 children aged 4 to 12 completed the BHCL and Child Behavior Checklist (CBCL) during sick and well-child visits to urban and suburban primary care practices affiliated with a large children's hospital. RESULTS: Findings support a single, strength-based factor on the BHCL, and the structure was largely invariant across race, sex, and socioeconomic status. Increased psychopathology symptoms (internalizing, externalizing, and attention-deficit hyperactivity disorder) and lower levels of strengths predicted increased social problems (p < 0.001). Moreover, the interaction terms were statistically significant in all analyses, suggesting that higher levels of strengths may buffer the deleterious impact of psychopathology symptoms on social problems. Post hoc analyses indicated that the buffering influence of strengths on the relationship between psychopathology symptoms and social problems was clinically meaningful except in the older sample for the relationship between externalizing and social problems. CONCLUSION: The findings support the validity of a strength-based factor of the BHCL and indicate that this factor has a buffering effect on the association between the degree of child mental health symptoms and level of social impairment. This factor, in combination with the problem-focused factors of the BHCL, provides a balanced approach to screening children's mental health functioning.

Chronic Care for Attention-Deficit/Hyperactivity Disorder: Clinical Management from Childhood Through Adolescence.

OBJECTIVE: Impairments generally persist when children diagnosed with attention-deficit/hyperactivity disorder (ADHD) mature into adolescence. To examine changes in ADHD care during the transition from childhood to adolescence, we conducted a retrospective, longitudinal cohort study of patients diagnosed with ADHD before the age of 10 years to assess changes from preadolescence through adolescence in (1) frequency by which primary care providers offer ADHD care to patients, (2) range of concerns assessed during patient encounters, and (3) treatments implemented or recommended. METHODS: We identified patients from 3 practices included in a large primary care network who (1) were born between 1996 and 1997, (2) were diagnosed with ADHD before the age of 10 years, and (3) received primary care continuously from age 9 through late adolescence. Clinical care was compared among patients in preadolescence (age 9-11), early adolescence (age 12-14), and late adolescence (age 15-18). RESULTS: Children diagnosed with ADHD before the age of 10 years were less likely to have a documented visit for ADHD during late adolescence (41% of patients) compared with preadolescence (63%, p < 0.001). Evidence of monitoring for depression, suicide, and substance abuse increased from preadolescence to adolescence (p < 0.001) and occurred in about 90% of adolescent patients. However, monitoring for risky sexual activity occurred in only about 50% of adolescents. Discussions of medication diversion and driver readiness were essentially not documented. CONCLUSION: The findings raise concerns about how primary care providers manage adolescents with a history of ADHD. Improving monitoring of risky sexual behavior and driver readiness and providing patient education about medication diversion are needed.

Sharing of ADHD Information between Parents and Teachers Using an EHR-Linked Application.

BACKGROUND: Appropriate management of attention-deficit/hyperactivity disorder (ADHD) involves parents, clinicians, and teachers. Fragmentation of interventions between different settings can lead to suboptimal care and outcomes. Electronic systems can bridge gaps across settings. Our institution developed an email-based software to collect ADHD information from parents and teachers, which delivered data directly to the clinician within the electronic health record (EHR). OBJECTIVE: We sought to adapt our institution's existing EHR-linked system for ADHD symptom monitoring to support communication between parents and teachers and then to assess child characteristics associated with sharing of ADHD information. METHODS: We updated our software to support automated sharing of ADHD information between parents and teachers. Sharing was optional for parents but obligatory for teachers. We conducted a retrospective cohort study involving 590 patients at 31 primary care sites to evaluate a system for sharing of ADHD-specific health information between parents and teachers. We used multivariable logistic regression to estimate associations between child characteristics and parental sharing. We further investigated the association between child characteristics and viewing of survey results delivered through the electronic communication system. RESULTS: Most parents (64%) elected to share survey results with teachers at the first opportunity and the vast majority (80%) elected to share all possible information. Parents who elected to share usually continue sharing at subsequent opportunities (89%). Younger child age and performance impairments were associated with increased likelihood of sharing. However, parents viewed only 16% of teacher submitted surveys and teachers only viewed 30% of surveys shared by parents. CONCLUSION: This study demonstrates that electronic systems to capture ADHD information from parents and teachers can be adapted to support communication between them, and that parents are amenable to sharing ADHD information with teachers. However, strategies are needed to encourage viewing of shared information.

Autism Spectrum Disorder and Transition-Aged Youth.

PURPOSE OF REVIEW: This article discusses common issues surrounding transition to adulthood in youth with autism spectrum disorder (ASD). We review recent evidence on co-occurring medical and mental health conditions and topics of education and employment, sexuality and relationships, independent living, and financial support. RECENT FINDINGS: Transitioning individuals with ASD have increased risk for several medical and behavioral health comorbidities and should be routinely screened for co-occurring conditions. Evidence on interventions for mental health disorders is limited but emerging, particularly with respect to mindfulness training and cognitive behavioral therapy. Many autistic adults or their families express a desire for independent living, participation in education/employment, and intimacy and social relationships, but they often lack skills and/or resources to successfully achieve these outcomes. The time of transition to adulthood for adolescents with ASD is an opportunity for physicians to provide anticipatory guidance and necessary supports around issues of community participation. To allow time for planning, these discussions should occur well before the child reaches adulthood. Clinicians should also routinely screen for and address medical and/or behavioral health comorbidities.

The Interprofessional/Family-Centered-Care Observation Rubric (I-FOR): Results of a Multicenter Study of a New Measure of Educational Outcomes.

Introduction The ability to provide family-centered care (FCC) and the ability to work in interprofessional care teams (IPC) are essential educational outcomes in graduate training programs. Lack of standardized measures leave programs to rely on idiosyncratic methods to monitor outcomes. We developed a faculty observation tool as part of an effort to create a national quality improvement database. We present evidence for the feasibility and validity of the faculty observation tool. Methods Trainees and faculty at four independent training programs participated. Nineteen maternal and child health disciplines were represented. Faculty supervisors rated trainees using the new measure (I-FOR), and trainees completed related subscales of a previously developed self-report measure, the core competency measure (CCM). Faculty provided qualitative feedback regarding the I-FOR in a separate questionnaire. Results Faculty (n = 78) completed the I-FOR on 86 trainees (86/92 = 93%) and reported satisfaction with completing the measures. The I-FOR demonstrated good internal consistency (Cronbach's alpha > 0.930) and test-retest reliability (IPC r = 0.862, FCC r = 0.823, p < 0.001). Greater than 95% of participants reported that the I-FOR accurately addressed the relevant skills for each practice domain. The I-FOR showed no correlation with the CCM. Significant improvements over time in the I-FOR ratings were demonstrated in three out of four programs. Discussion The I-FOR demonstrated good internal consistency and test-retest reliability. Faculty responses provide evidence for the feasibility and validity of the instrument. Self-report and faculty-observation measures both increased with training but were not correlated with each other.

Common Use of Stimulants and Alpha-2 Agonists to Treat Preschool Attention-Deficit Hyperactivity Disorder: A DBPNet Study.

OBJECTIVE: To describe the use of stimulants and alpha-2 agonists (A2As) for the treatment of preschool-aged children with attention-deficit hyperactivity disorder (ADHD) at 2 Developmental-Behavioral Pediatrics Research Network sites. METHODS: Demographic information, diagnoses, and medications prescribed by developmental-behavioral pediatricians (DBPs) were extracted from the electronic health record for all outpatient visits from January 1, 2010, to December 31, 2011. The subset of visits for children aged 2 to 5 years who had a diagnosis of ADHD was included in this analysis. Multivariable models were constructed to identify factors associated with prescribing stimulants and A2As. RESULTS: Over the 2-year period, 984 children with a diagnosis of ADHD were seen at 1779 visits. Of the 984 children, 342 (34.8%) were prescribed a stimulant, and 243 (24.7%) were prescribed an A2A. Both medications were prescribed at the same visit at least once during the 2-year period for 97 children (9.9%). Alpha-2 agonists were prescribed more often at site 2 than site 1 (OR [odds ratio] = 1.62, p = 0.015). Stimulants were more likely to be prescribed for older preschool-aged children (OR = 1.66, p < 0.001), and A2As were more likely to be prescribed for younger children (OR = 0.82, p = 0.02). Both stimulants and A2As were more likely to be prescribed to children with ADHD and comorbid conditions. CONCLUSION: Alpha-2 agonists are commonly used by some DBPs for preschool ADHD. Variation in the use of A2As across sites may indicate a lack of consensus on when to use these medications and suggests a need for comparative effectiveness research to better define the relative benefits and side effects of A2As and stimulants for the treatment of preschool ADHD.

Private Versus Medicaid Patients Referred to Developmental Behavioral Pediatricians: Do They Differ? A DBPNet Study.

BACKGROUND: It is unknown how insurance status affects elements of evaluation at developmental behavioral (DB) pediatric sites. OBJECTIVE: To compare DB referrals, evaluation, and treatment for children with Medicaid and private insurance. DESIGN/METHODS: Fifty-six developmental behavioral pediatricians at 12 sites recorded anonymous data on structured forms for ≤15 consecutive referrals. Children with Medicaid (n = 309) and private insurance (n = 393) were compared on sociodemographic factors, referral concerns, evaluation elements, and resulting diagnoses. All significant bivariate findings were verified in multivariable models controlling for site and sociodemographic characteristics. RESULTS: Those with Medicaid were significantly less likely to be white (30% vs 63%) and to have parents who went beyond high school (50% vs 92%) and who spoke English (89% vs 97%) (all p < 0.001). Referral sources were similar, except that fewer children with Medicaid were self-referred (12% vs 22%; p < 0.01). Both groups presented with multiple concerns, ∼3/child, especially speech and language delays, autism spectrum disorder, and attention-deficit hyperactivity disorder. Children with Medicaid tended to present more often with concerns about other behavior problems (14% vs 7%; p = 0.05). Wait times to appointments were similar (∼20 weeks), and visits were over 2 hours in length. Only 1 of 92 services and recommendations differed significantly. CONCLUSION: There were few differences in care, but most DB patients presented with multiple concerns and had complex evaluations. Regardless of the insurance type, they experienced long wait times that may be detrimental to therapeutic outcomes.

Bilateral Cochlear Implants: Maximizing Expected Outcomes.

CASE: Sonia is a 4 years 1 month-year-old girl with Waardenburg syndrome and bilateral sensorineural hearing loss who had bilateral cochlear implants at 2 years 7 months years of age. She is referred to Developmental-Behavioral Pediatrics by her speech/language pathologist because of concerns that her language skills are not progressing as expected after the cochlear implant. At the time of the implant, she communicated using approximately 20 signs and 1 spoken word (mama). At the time of the evaluation (18 months after the implant) she had approximately 70 spoken words (English and Spanish) and innumerable signs that she used to communicate. She could follow 1-step directions in English but had more difficulty after 2-step directions.Sonia was born in Puerto Rico at 40 weeks gestation after an uncomplicated pregnancy. She failed her newborn hearing test and was given hearing aids that did not seem to help.At age 2 years, Sonia, her mother, and younger sister moved to the United States where she was diagnosed with bilateral severe-to-profound hearing loss. Genetic testing led to a diagnosis of Waardenburg syndrome (group of genetic conditions that can cause hearing loss and changes in coloring [pigmentation] of the hair, skin, and eyes). She received bilateral cochlear implants 6 months later.Sonia's mother is primarily Spanish-speaking and mostly communicates with her in Spanish or with gestures but has recently begun to learn American Sign Language (ASL). In a preschool program at a specialized school for the deaf, Sonia is learning both English and ASL. Sonia seems to prefer to use ASL to communicate.Sonia receives speech and language therapy (SLT) 3 times per week (90 minutes total) individually in school and once per week within a group. She is also receiving outpatient SLT once per week. Therapy sessions are completed in English, with the aid of an ASL interpreter. Sonia's language scores remain low, with her receptive skills in the first percentile, and her expressive skills in the fifth percentile.During her evaluation in Developmental and Behavioral Pediatrics, an ASL interpreter was present, and the examiner is a fluent Spanish speaker. Testing was completed through a combination of English, Spanish, and ASL. Sonia seemed to prefer ASL to communicate, although she used some English words with errors of pronunciation. On the Beery Visual-Motor Integration Test, she obtained a standard score of 95. Parent and teacher rating scales were not significant for symptoms of attention-deficit/hyperactivity disorder.What factors are contributing to her slow language acquisition and how would you modify her treatment plan?