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.

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.

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.

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.

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.

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.

A community cross-sectional survey of medical problems in 440 children with Down syndrome in New York State.

OBJECTIVE: To determine the frequency of medical problems in a large population of children with Down syndrome. STUDY DESIGN: Study population included 440 children with Down syndrome (ages 3-14 years) identified primarily through the New York Congenital Malformations Registry. Parents completed questionnaires on medical problems. RESULTS: Our study population was predominately White (92.3%), non-Hispanic (72.3%) with at least 1 college educated parent (72.3%). The prevalence of medical problems was as follows: heart disease (55%), hearing problem (39%), vision problem (39%), thyroid disease (27%), celiac disease (5%), alopecia (5%), seizures (7%), asthma/reactive airway disease (32%), diabetes (1%), and juvenile rheumatoid arthritis (0.2%). Of the children with heart disease, 58% needed surgery at a mean age of 9 months. Of the children with hearing loss, 29% were identified on newborn screening and 13% used an amplification device. Of the children with thyroid disease, 31% were diagnosed in the newborn period. Only 7% of these children with Down syndrome had no medical problem listed. CONCLUSION: Prevalence data of medical illnesses in a large population of children with Down syndrome provide us with data to support implementation of the American Academy of Pediatrics guidelines for health supervision for children with Down syndrome. The long-term health implications of the conditions we surveyed will be important for decreasing morbidity and increasing overall health and wellness into adulthood.

22q11.2 deletion syndrome: are motor deficits more than expected for IQ level?

OBJECTIVE: To examine motor function in children with 22q11.2 deletion syndrome (22q11.2) and a Full Scale IQ (FSIQ) comparable control group. STUDY DESIGN: This study was part of a prospective study of neuropsychological function in children 9 to 15 years of age with 22q11.2 and community control subjects and included children from these two populations with comparable FSIQs. RESULTS: Verbal IQs on the WISC-R for 40 children with 22q11.2 (88.4) and 24 community control subjects (87.2) were not different (P=.563). However, the performance IQs were (22q11.2; 81.1 vs community controls; 89.3; P<.001). On the Visual Motor Inventory, there was no difference between the standard scores of the two groups (22q11.2; 93.0 vs community control subjects; 98.1; P=.336) but on the motor coordination part of the Visual Motor Inventory, the scores of the 22q11.2 deletion syndrome group were lower (77.2 vs 89.3; P=.002). On the general neurologic examination (P=.906), the tone examination (P=.705), and the ball skills part of the Motor Battery, (P=.378), there were no differences. However, on the axial stability part of the Motor Battery, the children with 22q11.2 exhibited less good balance (P=.026). CONCLUSIONS: School-aged children with 22q11.2 have specific motor deficits in axial stability and graphomotor skills.

Comfort level of pediatricians and family medicine physicians diagnosing and treating child and adolescent psychiatric disorders.

CONTEXT: Twelve to twenty-one percent of children and adolescents have psychiatric disorders with at least mild functional impairment. Pediatricians and family medicine physicians prescribe 85% of psychotropic medications taken by children. However, little is known about the comfort level of these physicians with the diagnosis and treatment of psychiatric disorders in children. OBJECTIVE: To determine the comfort level of physicians in diagnosing and treating psychiatric disorders in children. METHOD: An anonymous survey was sent to pediatricians and family medicine physicians in upstate New York. Of 483 surveys, 200 surveys were returned. OUTCOME MEASURES: To compare differences between pediatricians and family medicine physicians in comfort in diagnosing and prescribing medications for psychiatric disorders. RESULTS: After controlling for age, race, and years since residency, pediatricians were more comfortable in diagnosing (O.R. = 3.05, C.I. = 1.40-6.63) and prescribing stimulants for (O.R. = 4.16, C.I. = 1.96-8.84) Attention Deficit Disorder. Family medicine physicians were more comfortable in diagnosing (O.R. = .28, C.I. = .14-.57) and prescribing medication for (O.R. = .44, C.I. = .22-.87) anxiety and depression. Despite the differences in comfort, there were no differences in the percentage of each group prescribing the different medications. Of those who were comfortable in making the diagnoses, 13%-64% were not comfortable in prescribing medications, although they did prescribe. CONCLUSIONS: Pediatricians and family medicine physicians who prescribe the majority of psychotropic medications for children report disconcerting degrees of discomfort with the diagnosis and treatment of children's psychiatric disorders. The authors discuss the multiple factors that may impact primary care physician's comfort in diagnosing and treating children and adolescents with psychiatric disorders.

22q11.2DS deletion syndrome: developmental milestones in infants and toddlers.

BACKGROUND: The majority of children with 22q11.2DS deletion syndrome (22q11.2DS) have learning disabilities, and a substantial number have mental retardation. Although cognitive data have been reported on several samples of children with 22q11.2DS, data on their early developmental milestones are limited. METHODS: The present study used a retrospective design and asked parents to recall developmental milestones. The participants were 88 children with 22q11.2DS, 47 community controls, and 29 sibling controls. RESULTS: Although very early gross motor and expressive language milestones did not differ significantly from comparison groups, subsequent gross motor and expressive language milestones did, suggesting that children with 22q11.2DS may begin to lag behind their peers sometime after the first year of life in these two domains. These patterns were also apparent when a subset of intellectually comparable children (22q11.2DS, n = 40 vs community controls, n = 24) was analyzed. We further found that receptive language and social adaptive milestones did not differ from comparison samples in either the early or later period. Receptive language delays were predictive of later Wechsler Intelligence Scale for Children-Third Edition Perceptual Organization Index scores, particularly in girls with 22q11.2DS. CONCLUSIONS: This suggests that although receptive language may be an area of relative strength in the developmental profile of young children with 22q11.2DS, even mild receptive delays should not be overlooked in early interventions with children with this disorder.

ADHD, major depressive disorder, and simple phobias are prevalent psychiatric conditions in youth with velocardiofacial syndrome.

OBJECTIVE: To examine prevalence rates of psychopathology in children with velocardiofacial syndrome (VCFS). METHOD: One hundred fifty-four children ages 6 to 15 participated in our between-group design with three samples, 84 children with VCFS (37 girls, 47 boys), 32 sibling controls (18 girls, 14 boys), and 38 community controls (12 girls, 26 boys). The Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime version and several other parent report measures were used to assess for psychopathology. RESULTS: Compared to both control samples, children with VCFS had higher prevalence rates of major depressive disorder, attention-deficit/hyperactivity disorder, simple phobias, and enuresis. Additional findings from our analyses include (1) no gender differences in VCFS psychopathology prevalence rates, (2) children with VCFS who have comorbid psychopathology were rated by their parents as having less well-developed executive functions, and (3) across all three samples, the higher the IQ was, the higher the level of global functioning. CONCLUSIONS: These findings are consistent with previous research and suggest that major depressive disorder, attention-deficit/hyperactivity disorder, and simple phobias are salient features of the VCFS psychiatric phenotype.

Terapias complementarias y alternativas para el síndrome de Down / No disponible

Los padres de hijos con síndrome de Down, en su papel de defensores comprometidos de sus hijos, han indagado siempre por terapias alternativas, sobre todo para mejorar su función cognitiva, pero también para mejorar su aspecto. Las terapias complementarias y alternativas más frecuentemente utilizadas han sido los suplementos de tipo nutritivo. Se ha usado la terapia celular, la cirugía plástica, la terapia hormonal y un conjunto de otras estrategias como puede ser el masaje. Carecemos de estudios científicos bien diseñados sobre el empleo de las terapias alternativas en las personas con síndrome de Down. Los productos antioxidantes ofrecen una perspectiva terapéutica para el tratamiento de los problemas de tipo cognitivo, inmunitario, neoplásico y de envejecimiento precoz, asociados al síndrome de Down que están en fase de estudio. Los medicamentos para el tratamiento de la enfermedad de Alzheimer pueden también beneficiar a la población con síndrome de Down (AU)

No disponible

Complementary and alternative therapies for Down syndrome.

In their role as committed advocates, parents of children with Down syndrome have always sought alternative therapies, mainly to enhance cognitive function but also to improve their appearance. Nutritional supplements have been the most frequent type of complementary and alternative therapy used. Cell therapy, plastic surgery, hormonal therapy, and a host of other therapies such as massage therapy have been used. There is a lack of well-designed scientific studies on the use of alternative therapies in individuals with Down syndrome. Antioxidants hold theoretical promise for treatment of the cognitive, immune, malignancy, and premature aging problems associated with Down syndrome. Medications for treatment of Alzheimer's disease may also result in benefit for the population of individuals with Down syndrome.

Improving guideline adherence for the diagnosis of ADHD in an ambulatory pediatric setting.

BACKGROUND: The American Academy of Pediatrics (AAP) has published clinical practice guidelines for the diagnosis of Attention Deficit Hyperactivity Disorder (ADHD). However, implementation of guidelines has been notoriously difficult to achieve in the wider context of changing individual physicians' clinical practice. OBJECTIVE: Implement a formalized diagnostic protocol for ADHD and study whether this protocol improved adherence of pediatric residents and faculty to published guidelines for the diagnosis of ADHD. METHODS: Quasi-experimental retrospective record review of 63 pediatric patients evaluated for ADHD by pediatric residents and faculty in an outpatient pediatric clinic before (n = 25) and after (n = 38) implementation of a formal diagnostic process for ADHD. The key elements of the new diagnostic process include completion of a semistructured interview and mandatory rating scales for home and school. The published AAP guidelines include 1) documentation of Diagnostic and Statistical Manual for Mental Disorders (DSM) IV criteria; 2) evidence of core symptoms obtained directly from home and 3) from school; and 4) assessment for coexisting conditions. Adherence was assessed to each criterion individually (yes/no) and was summarized in a single score. RESULTS: Only 4% of clinicians and nurse practitioners diagnosing children in the before group adhered to all 4 AAP guidelines, compared to 82% in the after group (P < .001). Significant improvement was observed across each of the 4 criteria in the AAP guidelines. Moreover, the improvement in adherence to all 4 guidelines was noted for residents and faculty. CONCLUSION: A significant improvement in adherence to AAP guidelines was obtained for all providers through implementation of a structured diagnostic approach to ADHD.

Nongenetic causes of hearing loss.

Nongenetic as well as genetic etiologies must be explored in the child with identified hearing loss. Graduates of the neonatal intensive care unit are at increased risk for developing hearing loss due to hypoxia, hyperbilirubinemia, very low birth weight, and ototoxic medications. Although meningitis has decreased in frequency, it is still a risk factor for hearing loss. Cytomegalovirus remains the most common congenital infection and a relatively common etiology of hearing loss, which can be progressive. Preventable causes of hearing loss include those caused by head trauma, noise, and ototoxic medications. Identification of the etiology of hearing loss can facilitate the development of a treatment and management plan.

Developmental and behavioral pediatric practice patterns and implications for the workforce: results of the Future of Pediatric Education II Survey of Sections Project.

A survey of developmental-behavioral pediatricians was conducted to obtain data and insights on their current practice. As part of the Future of Pediatric Education (FOPE) II Survey of Sections Project, questionnaires were sent to individuals who were most likely to represent those pediatricians engaged in the subspecialty of developmental-behavioral pediatrics. Four groups of physicians were compared within the survey: developmental-behavioral fellowship group (n = 272), developmental disabilities fellowship group (n = 139), general academic pediatrics or other fellowship group (n = 57), and a nonfellowship group (n = 224). A majority of respondents indicated a need for an increased number of subspecialists in developmental-behavioral pediatrics in their community during the next 3 to 5 years. There were significant differences in the survey results of a variety of practice issues between those who had and had not received formal fellowship training. The survey data illustrate a developmental-behavioral pediatrician workforce that is becoming increasingly fellowship trained, receiving more referrals, and encountering constraints to seeing more patients in an era of declining reimbursement for services. To overcome these obstacles, stakeholders in child health, including health care payers, will need to be educated about the unique skills and clinical expertise of physicians in developmental-behavioral pediatrics and neurodevelopmental disabilities.