Child Health Needs and the Developmental-Behavioral Pediatrics Workforce Supply: 2020-2040.

Developmental-behavioral pediatrics (DBP) subspecialists care for children with complex neurodevelopmental and behavioral health conditions; additional roles include education and training, advocacy, and research. In 2023, there were 1.0 DBP subspecialists per 100 000 US children aged 0 to 17 years (range 0.0-3.8), with wide variability in DBP subspecialist distribution. Given the prevalence of DB conditions, the current workforce is markedly inadequate to meet the needs of patients and families. The American Board of Pediatrics Foundation led a modeling project to forecast the US pediatric subspecialty workforce from 2020 to 2040 using current trends in each subspecialty. The model predicts workforce supply at baseline and across alternative scenarios and reports results in headcount (HC) and HC adjusted for percent time spent in clinical care, termed "clinical workforce equivalent." For DBP, the baseline model predicts HC growth nationally (+45%, from 669 to 958), but these extremely low numbers translate to minimal patient care impact. Adjusting for population growth over time, projected HC increases from 0.8 to 1.0 and clinical workforce equivalent from 0.5 to 0.6 DBP subspecialists per 100 000 children aged 0 to 18 years by 2040. Even in the best-case scenario (+12.5% in fellows by 2030 and +7% in time in clinical care), the overall numbers would be minimally affected. These current and forecasted trends should be used to shape much-needed solutions in education, training, practice, policy, and workforce research to increase the DBP workforce and improve overall child health.

Clinician Diagnostic Certainty and the Role of the Autism Diagnostic Observation Schedule in Autism Spectrum Disorder Diagnosis in Young Children.

Importance: Autism spectrum disorder (ASD) affects 1 in 44 children. The Autism Diagnostic Observation Schedule (ADOS) is a semi-structured observation developed for use in research but is considered a component of gold standard clinical diagnosis. The ADOS adds time and cost to diagnostic assessments. Objective: To evaluate consistency between clinical diagnosis (index ASD diagnosis) and diagnosis incorporating the ADOS (reference standard ASD diagnosis) and to examine clinician and child factors that predict consistency between index diagnoses and reference standard diagnoses. Design, Setting, and Participants: This prospective diagnostic study was conducted between May 2019 and February 2020. Developmental-behavioral pediatricians (DBPs) made a diagnosis based on clinical assessment (index ASD diagnosis). The ADOS was then administered, after which the DBP made a second diagnosis (reference standard ASD diagnosis). DBPs self-reported diagnostic certainty at the time of the index diagnoses and reference standard diagnoses. The study took place at 8 sites (7 US and 1 European) that provided subspecialty assessments for children with concerns for ASD. Participants included children aged 18 months to 5 years, 11 months, without a prior ASD diagnosis, consecutively referred for possible ASD. Among 648 eligible children, 23 refused, 376 enrolled, and 349 completed the study. All 40 eligible DBPs participated. Exposures: ADOS administered to all child participants. Main Outcomes and Measures: Index diagnoses and reference standard diagnoses of ASD (yes/no). Results: Among the 349 children (279 [79.7%] male; mean [SD] age, 39.9 [13.4] months), index diagnoses and reference standard diagnoses were consistent for 314 (90%) (ASD = 250; not ASD = 64) and changed for 35. Clinician diagnostic certainty was the most sensitive and specific predictor of diagnostic consistency (area under curve = 0.860; P < .001). In a multilevel logistic regression, no child or clinician factors improved prediction of diagnostic consistency based solely on clinician diagnostic certainty at time of index diagnosis. Conclusions and Relevance: In this prospective diagnostic study, clinical diagnoses of ASD by DBPs with vs without the ADOS were consistent in 90.0% of cases. Clinician diagnostic certainty predicted consistency of index diagnoses and reference standard diagnoses. This study suggests that the ADOS is generally not required for diagnosis of ASD in young children by DBPs and that DBPs can identify children for whom the ADOS may be needed.

Do Referral Factors Predict a Probable Autism Spectrum Disorder Diagnosis? A DBPNet Study.

OBJECTIVE: To determine the proportion of children referred to academic medical centers with concerns about autism spectrum disorders (ASDs) who received a probable ASD diagnosis, identify factors predicting ASD diagnosis, and describe the children with ASD concerns who were not found to have autism. METHODS: A total of 55 developmental-behavioral pediatricians (DBP) at 12 academic sites in the DBPNet research network recorded data on ≤15 consecutive new patients. They coded presumed diagnoses after their first visit with the child. RESULTS: Of 784 new visits, 324 (41%) had concern for ASD; of these, 221 (68%) were presumptively ASD+; 103 (32%) were ASD-. In a mixed model accounting for clustering within site and covariates significant in bivariate analysis, significant predictors of receiving a presumptive ASD diagnoses were socialization concerns, languages other than English spoken in the home, and coming for second opinion. Also concern for "other behavior problems" (not mood, oppositionality, anxiety, attention, or repetitive behaviors) predicted not receiving ASD diagnoses. This model was not clinically useful because it misclassified 26.9% of children. ASD- children <4 years old had more language delay and less cognitive impairment and socialization concern than their ASD+ age peers. ASD- children ≥4 years old were more likely to have attention-deficit /hyperactivity disorder (ADHD) and learning disability with normal cognition than their ASD+ age peers. CONCLUSIONS: Two thirds of children referred to academic centers with concern for ASD received a presumptive diagnosis of ASD. While those with ASD were not easily distinguished from those without ASD at referral, virtually all children with ASD concerns had multiple DBP diagnoses made and required DBP follow-up care.

Safety, efficacy, and tolerability of memantine for cognitive and adaptive outcome measures in adolescents and young adults with Down syndrome: a randomised, double-blind, placebo-controlled phase 2 trial.

BACKGROUND: Down syndrome is a chromosomal disorder with considerable neurodevelopmental impact and neurodegenerative morbidity. In a pilot trial in young adults with Down syndrome, memantine (a drug approved for Alzheimer's disease) showed a significant effect on a secondary measure of episodic memory. We aimed to test whether memantine would improve episodic memory in adolescents and young adults with Down syndrome. METHODS: We did a randomised, double-blind, placebo-controlled phase 2 trial with a parallel design, stratified by age and sex. Participants (aged 15-32 years) with either trisomy 21 or complete unbalanced translocation of chromosome 21 and in general good health were recruited from the community at one site in Brazil and another in the USA. Participants were randomly assigned (1:1) to receive either memantine (20 mg/day orally) or placebo for 16 weeks. Computer-generated randomisation tables for both sites (allocating a placebo or drug label to each member of a unique pair of participants) were centrally produced by an independent statistician and were shared only with investigational pharmacists at participating sites until unblinding of the study. Participants and investigators were masked to treatment assignments. Neuropsychological assessments were done at baseline (T1) and week 16 (T2). The primary outcome measure was change from baseline to week 16 in the California Verbal Learning Test-second edition short-form (CVLT-II-sf) total free recall score, assessed in the per-protocol population (ie, participants who completed 16 weeks of treatment and had neuropsychological assessments at T1 and T2). Linear mixed effect models were fit to data from the per-protocol population. Safety and tolerability were monitored and analysed in all participants who started treatment. Steady-state concentrations in plasma of memantine were measured at the end of the trial. This study is registered at ClinicalTrials.gov, number NCT02304302. FINDINGS: From May 13, 2015, to July 22, 2020, 185 participants with Down syndrome were assessed for eligibility and 160 (86%) were randomly assigned either memantine (n=81) or placebo (n=79). All participants received their allocated treatment. Linear mixed effect models were fit to data from 149 (81%) participants, 73 in the memantine group and 76 in the placebo group, after 11 people (eight in the memantine group and three in the placebo group) discontinued due to COVID-19 restrictions, illness of their caregiver, adverse events, or low compliance. The primary outcome measure did not differ between groups (CVLT-II-sf total free recall score, change from baseline 0·34 points [95% CI -0·98 to 1·67], p=0·61). Memantine was well tolerated, with infrequent mild-to-moderate adverse events, the most common being viral upper respiratory infection (nine [11%] participants in the memantine group and 12 [15%] in the placebo group) and transient dizziness (eight [10%] in the memantine group and six [8%] in the placebo group). No serious adverse events were observed. Amounts of memantine in plasma were substantially lower than those considered therapeutic for Alzheimer's disease. INTERPRETATION: Memantine was well tolerated, but cognition-enhancing effects were not recorded with a 20 mg/day dose in adolescents and young adults with Down syndrome. Exploratory analyses point to a need for future work. FUNDING: Alana Foundation. TRANSLATION: For the Portuguese translation of the abstract see Supplementary Materials section.

Opportunities, barriers, and recommendations in down syndrome research.

BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. CONCLUSIONS: This review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy.

Developmental-Behavioral Pediatrics 13 Years After the First Board Certification: Evolving Subspecialty.

OBJECTIVE: To examine and define the evolving subspecialty of developmental-behavioral pediatrics (DBP) by analyzing workforce surveys presubspecialty and postsubspecialty certification. METHODS: In 2015, an electronic workforce survey was sent to the members of the American Academy of Pediatrics Section on DBP and Council on Children with Disabilities and the Society for DBP. Answers from the 1998 survey for respondents with subspecialty fellowship training were compared. RESULTS: Compared with the 1998 group of 265 DBPs, the 368 DBPs in the 2015 group were older, more female, and more diverse. In both groups, ≥80% evaluated and treated autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), and developmental delays, but significantly (p < 0.001) fewer cared for children with physical disabilities (e.g., cerebral palsy [58% to 41%], multihandicapped [53% to 39%], neonatal follow-up [47% to 31%], and spina bifida [26% to 13%]) and other disorders (e.g., failure to thrive and obesity/eating disorders [27% to 15%]). Time for new patient and return visits remained the same (1.5 hours and 0.7 hours). Pediatric generalists and family practice physicians initiated most referrals; fewer 2015 DBPs (p < 0.001) reported school districts (83% to 70%) and more reported pediatric subspecialty (57% to 77%; p < 0.001) referrals. Acknowledgment of the need for more community DBP specialists increased from 66% to 80% (p < 0.001). CONCLUSION: Survey data indicated that the workforce is aging and changing. ADHD, ASD, and developmental delays are solidifying as the defining clinical focus of DBP. Current trends can identify training needs, facilitate recruitment, and advocate for system change to support the DBP workforce to respond to the great need.

DBP Evaluations in DBPNet Sites: Is Race/Ethnicity a Significant Factor in Care?

OBJECTIVE: To examine whether there are differences between non-Hispanic white (NHW) and nonwhite (NW) children in referral questions, evaluations, and diagnoses during developmental behavioral pediatrician (DBP) evaluations at academic medical centers and the potential role of socioeconomic factors in any disparities noted. DESIGN/METHODS: This observational study used survey data from 56 DBPs at 12 sites participating in DBPNet. Child race and ethnicity were obtained from DBP report. Mixed-model logistic and linear regression analyses controlling for site, provider, and socioeconomic proxy variables (insurance type, parent education, and language spoken at home) were used to compare groups on referral concerns, evaluation procedures, and diagnoses. RESULTS: Among the patients evaluated, 349 were NHW, 406 were NW (187 Hispanic, 135 black, 58 Asian/Pacific Islander, and 26 other/mixed), and 29 were missing race/ethnicity data. The mean waiting time controlling for site and provider was 20.4 weeks for NHW children and 20.5 weeks for NW children. Reasons for referral were similar in the NWH and NW groups, with only sleep problem concerns being more frequent among NHW children (9.2% vs 3.4% NW, p = 0.01). Patients also had similar evaluations in the 2 groups; the only differences found were that more NHW than NW children had genetic testing (33.1% vs 19.3%, p = 0.02), ophthalmology evaluations (8.7% vs 3.4%, p = 0.03), and psychopharmacologic evaluations (19.1% vs 9.7%, p = 0.008). Numbers and types of diagnoses did not vary by race/ethnicity. CONCLUSION: This study suggests little inequality between NHW and NW children in wait time to care, reasons for referral, workup, or final diagnosis for initial DBP evaluation at these 12 academic DBP centers when socioeconomic factors are considered. Nevertheless, because differences in these related factors may be mechanisms through which racial/ethnic disparities can arise, it will be important to consider them in planning models and care protocols for underserved communities.

Using Telehealth to address disparities in cognitive, language, and emotion regulation problems in young children: A case illustration using the INvesT model.

Over the past decade, there has been a rise in the prevalence of developmental disabilities. Early diagnosis and access to healthcare services are essential for children with developmental delays to optimize development. For families living in poverty, accessing specialized assessment/intervention services for children with developmental disabilities is often a formidable task. In this study, we provide preliminary evidence for the implementation of a developmental risk assessment screening questionnaire using a telehealth format to address the gap in access to services in a community clinic serving a low-income urban neighborhood. Ninety-seven caregivers of children between 12 months and 7 years of age participated in this study. Caregivers completed the risk assessment screening questionnaire using an iPad that was available to them at the clinic. Results showed that while only 11% of caregivers indicated they were initially concerned about their child's overall development, completion of the focused risk assessment resulted in a completely different picture. Fifty percent of caregivers reported that their child had three or more concerns in at least one area of development that would warrant further evaluation. Alerting both families and professionals to these concerns as early as possible may position the family and child to receive the much-needed services that have the potential to mitigate more serious developmental problems. This article discusses the promising role that Telehealth can play in providing screening services for all families, but especially low-income urban households.

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.

A Workforce Survey on Developmental-Behavioral Pediatrics.

BACKGROUND AND OBJECTIVES: Developmental-behavioral conditions are common, affecting ∼15% of US children. The prevalence and complexity of these conditions are increasing despite long wait times and a limited pipeline of new providers. We surveyed a convenience sample of the developmental-behavioral pediatric (DBP) workforce to determine current practices, workforce trends, and future needs. METHODS: An electronic survey was e-mailed to 1568 members of the American Academy of Pediatrics Section on Developmental and Behavioral Pediatrics and Council on Children with Disabilities, the Society for Developmental and Behavioral Pediatrics, and the National Association of Pediatric Nurse Practitioners Developmental and Behavioral Mental Health Special Interest Group. RESULTS: The response rate was 48%. There were 411 fellowship-trained physicians, 147 nonfellowship-trained physicians, and 125 nurse practitioners; 61% were women, 79% were white, and 5% were Hispanic. Physicians had a mean of 29 years since medical school graduation, and one-third planned to retire in 3 to 5 years. Nurse practitioners were earlier in their careers. Respondents reported long wait times for new appointments, clinician burnout, increased patient complexity and up to 50% additional time spent per visit in nonreimbursed clinical-care activities. Female subspecialists spent more time per visit in billable and nonbillable components of clinical care. CONCLUSIONS: The DBP workforce struggles to meet current service demands, with long waits for appointments, increased complexity, and high volumes of nonreimbursed care. Sex-based practice differences must be considered in future planning. The viability of the DBP subspecialty requires strategies to maintain and expand the workforce, improve clinical efficiency, and prevent burnout.

Factors Influencing the Adequacy of Bowel Preparation in Patients With Developmental Disabilities.

BACKGROUND: The rate of inadequate bowel preparation in the general population is approximately 23%. As more individuals with developmental disabilities enter late adulthood, a concomitant rise in endoscopic procedures for this population, including screening colonoscopies, is anticipated. However, there are sparse data on the adequacy of bowel preparation in patients with developmental disabilities. METHODS: A retrospective analysis of 91 patients with developmental disabilities who underwent colonoscopy from 2006 to 2014 was performed. Bowel preparation adequacy from these procedures was evaluated, together with other data, including age, developmental disability diagnoses, procedure type, indication and setting. RESULTS: Mean age at the time of endoscopy was 52.6 ± 13.4 years, with an age range of 18 - 74 years. Inadequate bowel preparation was found in approximately 51% of documented cases. Outpatients were more likely to have adequate bowel preparation compared to inpatients, with an odds ratio of 2.75 (95% confidence interval: 1.14 - 6.62, P = 0.022). No other major factors identified had any statistically significant influence on the adequacy of bowel preparation. CONCLUSION: Over half of patients with developmental disabilities undergoing colonoscopy had inadequate bowel preparations in our study, which is more than twice the rate for the general population. Furthermore, outpatients were 2.75 times more likely to have adequate bowel preparation compared to inpatients. Further studies are recommended to improve endoscopic practices for this patient population.

Co-occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines.

Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. The United States Preventive Service Task Force (USPSTF) has developed criteria for prioritizing conditions of public health importance with the potential for providing screening recommendations to improve clinical care. The quality of existing evidence needed to inform clinical guidelines has not been previously reviewed. Using the National Library of Medicine (NLM) database PubMed, we first identified 18 peer reviewed articles that addressed co-occurring medical conditions in adults with DS. Those conditions discussed in over half of the articles were prioritized for further review. Second, we performed detailed literature searches on these specific conditions. To inform the search strategy and review process a series of key questions were formulated a priori. The quality of available evidence was then graded and knowledge gaps were identified. The number of participating adults and the design of clinical studies varied by condition and were often inadequate for answering all of our key questions. We provide data on thyroid disease, cervical spine disease, hearing impairment, overweight-obesity, sleep apnea, congenital heart disease, and osteopenia-osteoporosis. Minimal evidence demonstrates massive gaps in our clinical knowledge that compromises clinical decision-making and management of these medically complex individuals. The development of evidence-based clinical guidance will require an expanded clinical knowledge-base in order to move forward.

Academic Developmental-Behavioral Pediatric Faculty at Developmental-Behavioral Pediatric Research Network Sites: Changing Composition and Interests.

OBJECTIVE: To obtain and review workforce data, given the critical demand for developmental pediatricians (DPs). METHODS: Survey of demographics and professional activities of DP physician faculty at Developmental-Behavioral Pediatric (DBP) Research Network fellowship training sites. RESULTS: Of the eligible providers at 12 centers, 76% (n = 50) completed surveys. They were on average 50 years old and mostly female (86%), white (82%), and working full time (74%). Full timers reported a mean 50.2-hour week made up of clinical work (23.2 hours), supervision (5.9 hours), research (8.8 hours), administration (5.2 hours), teaching (1.5 hours), advocacy (1.1 hours), and other (4.3 hours). Compared with those >10 years out of training, the 20 physicians (40%) ≤10 years out of fellowship were more likely to be nonwhite (p = .003). Overall faculty interest/expertise (I/E) was highest in autism (90%) and attention deficit hyperactivity disorder (ADHD; 86%). Those ≤10 years out of fellowship had more I/E in autism (p = .05) and less in chronic illness (p = .06) and parenting (p = .06). DPs practiced most frequently in a General DBP Clinic (74%), followed by clinics specific for: Autism (36%), Toddlers (22%), ADHD (20%), Infants (18%) and Preschoolers (16%). Common clinics were Autism (9), syndrome specific (9), ADHD (6), and School-Aged (5). CONCLUSION: Developmental pediatrician faculty in DBP training sites feed the pipeline of much needed DP physicians. This survey provides baseline information on the professional activities of DP faculty and found changing demographics and I/E as well as a wide variety of clinic types.

Perceived Mentoring Practices in Developmental-Behavioral Pediatrics Fellowship Programs.

OBJECTIVE: Junior physicians describe mentoring relationships as integral to their career development and success. Current evidence suggests that mentoring is under-utilized despite interest from trainees. The purpose of this study is to describe the mentoring practices in developmental-behavioral pediatric (DBP) fellowship programs and identify mentoring needs of DBP fellows and recent graduates. METHODS: DBP fellows and recent graduates less than 5 years out of training from US-based DBP fellowship programs were contacted to complete a survey on their mentoring experiences in fellowship and early career. RESULTS: A total of 90 respondents completed the entire survey including 47 current DBP fellows and 43 recent graduates. Only 52% of respondents reported having a formal faculty mentor during their fellowship. Only 45% of recent graduates reported that they currently have a mentor, of those without a current mentor 83% said they would like to have a mentor. Adequate mentoring during fellowship was lowest for career development and research (34% and 27%). Satisfaction with mentoring was associated with having a formal mentor (p < .001) and receiving mentoring in multiple areas (p < .001). Qualitative responses suggested that effective mentoring addresses the mentee's career goals, provides insight into being a developmental-behavioral pediatrician, assists in navigating academics, and involves a personal relationship. CONCLUSION: Results suggest opportunities for improved mentoring in DBP fellowship programs, particularly in the areas of career development and research and that there is a significant need for mentorship among recent graduates. Findings from this study can inform program improvement in mentoring for DBP fellows and recent graduates.

Attention-Deficit/Hyperactivity Disorder, Behavior Regulation and Virtual School Support.

CASE: Tony is a 6-year-old multiracial boy diagnosed as having attention-deficit/hyperactivity disorder-combined type who is followed in your primary care practice and has started on a stimulant medication. Tony continues to have difficulty with emotion regulation and impulse control both at home and at school. He was asked to leave his private school soon after beginning first grade because of physical fighting, emotional outbursts, and arguing with teachers.His mother made the decision to enroll Tony in online virtual schooling for the remainder of the academic year, with the plan to transition back to traditional school for the next academic year. They have enrolled in a program that offers lessons online and sends materials to the home for the child to use to complete certain types of assignments (e.g., science experiments). Virtual schools are different from traditional home schooling because children receive their instruction from teachers online with parental assistance as opposed to parents being responsible for teaching all material. Tony's mother comes to your practice requesting assistance with setting up an appropriate school environment for her son at home, where she can monitor and support his academic progress.Tony is a bright child, with an Intelligence Quotient in the superior range. He has advanced academic skills, but he becomes dysregulated if he is told he is wrong or that he has answered a question incorrectly. For example, if he answered a question incorrectly in class, he would become verbally abusive toward his teacher and often have temper tantrums. This challenging behavior occurred daily at school and was one of the factors leading to his expulsion. The behavior had predated the introduction of stimulant medication and had remained consistent after he began medication.Tony's parents are highly educated, and both parents hold professional jobs with steady income. His parents have good command of typical behavior management strategies such as the use of rewards, time out, and behavioral contingencies to target noncompliance and temper tantrums. However, Tony's difficulty identifying and regulating his emotions leads to emotional outbursts and shutdowns that have thus far been unresponsive to standard behavior management techniques. Tony continued to have outbursts even when the behavior was ignored. His mother is concerned not only about his learning during the coming year but also about his social relationships and the family dynamic. Tony's outbursts cause significant disruption in the home and are a source of tension among parents and siblings.His mother is asking for advice on how to support his behavior better at home now that he will be spending his entire day there. How might you assist this child and his mother by helping to integrate therapeutic goals into the academic environment?

Attention-Deficit/Hyperactivity Disorder, Behavior Regulation and Virtual School Support.

CASE: Tony is a 6-year-old multiracial boy diagnosed as having attention-deficit/hyperactivity disorder-combined type who is followed in your primary care practice and has started on a stimulant medication. Tony continues to have difficulty with emotion regulation and impulse control both at home and at school. He was asked to leave his private school soon after beginning first grade because of physical fighting, emotional outbursts, and arguing with teachers.His mother made the decision to enroll Tony in online virtual schooling for the remainder of the academic year, with the plan to transition back to traditional school for the next academic year. They have enrolled in a program that offers lessons online and sends materials to the home for the child to use to complete certain types of assignments (e.g., science experiments). Virtual schools are different from traditional home schooling because children receive their instruction from teachers online with parental assistance as opposed to parents being responsible for teaching all material. Tony's mother comes to your practice requesting assistance with setting up an appropriate school environment for her son at home, where she can monitor and support his academic progress.Tony is a bright child, with an Intelligence Quotient in the superior range. He has advanced academic skills, but he becomes dysregulated if he is told he is wrong or that he has answered a question incorrectly. For example, if he answered a question incorrectly in class, he would become verbally abusive toward his teacher and often have temper tantrums. This challenging behavior occurred daily at school and was one of the factors leading to his expulsion. The behavior had predated the introduction of stimulant medication and had remained consistent after he began medication.Tony's parents are highly educated, and both parents hold professional jobs with steady income. His parents have good command of typical behavior management strategies such as the use of rewards, time out, and behavioral contingencies to target noncompliance and temper tantrums. However, Tony's difficulty identifying and regulating his emotions leads to emotional outbursts and shutdowns that have thus far been unresponsive to standard behavior management techniques. Tony continued to have outbursts even when the behavior was ignored. His mother is concerned not only about his learning during the coming year but also about his social relationships and the family dynamic. Tony's outbursts cause significant disruption in the home and are a source of tension among parents and siblings.His mother is asking for advice on how to support his behavior better at home now that he will be spending his entire day there. How might you assist this child and his mother by helping to integrate therapeutic goals into the academic environment?

Impact of Autism Navigator on Access to Services.

OBJECTIVE: To determine whether access to an Autism Patient Navigator (APN) for children diagnosed with autism spectrum disorder (ASD) at <48 months of age would be useful and lead to more appointments with needed services. METHOD: Participants included parents of 39 children diagnosed with ASD in a multidisciplinary clinic. After diagnosis, the patients were randomized to 4 groups: Medicaid early (n = 9) or late support (n = 9) and non-Medicaid early (n = 11) or late support (n = 10). Early access to the APN was at the family meeting and later at 3 months after diagnosis. Data included demographic information and completion by phone interview at 3 months postdiagnosis of a questionnaire on the usefulness of the assessment and parent's desire or ability to obtain recommended services. RESULTS: Demographically, the groups were not different. Children were most frequently male, white, non-Hispanic, and non-Medicaid with a mean age of 35 months. In comparison with the non-Medicaid groups, the Medicaid groups more often endorsed the 9 questions on the usefulness of the assessment as being "A Great Deal" useful (p = .022). Groups with early support were more successful in scheduling or completing appointments for recommended services overall including medical, educational, therapeutic, and parent resource appointments (p = .031). Barriers to services or resources were reported by 35.9%. CONCLUSION: Parents of young children with Medicaid with a recent diagnosis of ASD found the assessment "very useful" compared with non-Medicaid group. The groups with immediate access to an APN were more successful with scheduling and completing appointments.

Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders.

This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder-affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder-affected children require early, broad intervention strategies that positively impact the whole family.

Identification of neurodevelopmental disabilities in underserved children using telehealth (INvesT): Clinical trial study design.

BACKGROUND: Children living in poverty are at high risk for delays in development of language and behavior and they experience a discrepancy in diagnosis and access to intervention services. This gap is partially caused by barriers in access as well as traits that are specific to each child and family. The Identification of Neurodevelopmental Disabilities in Underserved Children using Telehealth (INvesT) trial is a novel intervention approach that was specifically designed to address these barriers. AIMS: The INvesT trial has three primary aims: 1) to reduce the age of identification of neurodevelopmental disability for high-risk, low-income children. 2) To validate the INvesT protocol as a service delivery model that will decrease age of identifications of neurodevelopmental disability for high-risk, low-income children; and 3) to identify important child-specific factors, family-specific factors, and environmental factors that impact feasibility and success of the INvesT trial for high-risk, low-income children. METHODS: The INvesT trial is an open-label, double-blinded, placebo-controlled multi-level study that includes telehealth risk assessment, telehealth screening, traditional full assessment, and follow through to enrollment in early intervention. The trial is conducted in partnership with an urban community health clinic that largely serves a low-income patient population. CONCLUSIONS: The results of the INvesT trial will provide evidence for the use of a telehealth service delivery model to improve access to care for neurodevelopmental disabilities for high-risk, low-income children.

The prevalence of congenital hearing loss in neonates with Down syndrome.

OBJECTIVE: To determine the prevalence of hearing loss in newborns with Down syndrome. STUDY DESIGN: We performed a cross-sectional, retrospective chart review of all infants with Down syndrome born at a university-affiliated hospital (n = 77) or transferred in to the associated pediatric hospital (n = 32) following birth at an outlying hospital between 1995 and 2010. We determined the rate of failure of newborn hearing screens, the proportion of infants lost to follow-up, and the rate of confirmed hearing loss, as well as the associations of risk factors for hearing loss with confirmed hearing loss. RESULTS: Of the 109 patients with hearing screening data, 28 failed their newborn hearing screen. Twenty-seven infants were referred for audiologic evaluation, and 19 completed the evaluation. Fifteen of these 19 infants (79%) had confirmed hearing loss. The prevalence of congenital hearing loss in this sample of neonates with Down syndrome was 15%. Exposure to mechanical ventilation was the sole known risk factor associated with hearing loss. In this study, the loss to follow-up rate for infants with positive hearing screens was 32%. CONCLUSION: Newborns with Down syndrome have a higher prevalence of congenital hearing loss compared with the total neonatal population (15% vs 0.25%). Continued monitoring of hearing is needed in children with Down syndrome.