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moodiness/irritability, difficulty with sleep, appetite suppression, stomachaches, skin picking/repetitive behaviors, withdrawn behavior, and weight loss.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.

Cultural relevance of fine motor domain of the ASQ in Guatemala.

Previous research suggests that the Ages and Stages Questionnaire-3rd ed. (ASQ) fine motor domain (FMD) may not be culturally relevant for developmental screening in a rural Guatemalan community, as the FMD accounts for 40% of all abnormal screenings after a needs assessment in this community. We hypothesize this is due to a lack of exposure to objects assessed in the questionnaire, such as blocks or light switches. The FMD scores of rural Guatemalan children (n = 56) participating in a child development program were compared with Spanish- and English-speaking Latinx-American children attending a US primary care clinic and screened at yearly well-child checks. Groups were matched for age gender, and socioeconomic status. Item-level analyses explored differences across the three groups. In the Guatemalan sample, the FMD abnormal score rates were 16%, 62%, and zero in the 12-, 24-, and 36-month-old children, respectively. Abnormal scores for the Guatemalan sample on the 24-month ASQ-3 significantly differed (p = .01) when compared to the Latinx-American groups. The 24-month questionnaire has more questions about objects than the 12- and 36-month questionnaires, which may explain the higher rates of abnormal scores. Developmental screening with ASQ-3 may not adequately capture the skills of children in similar communities.

La investigación previa ha sugerido que el dominio de motricidad fina (FMD) del Cuestionario de Edades y Etapas - Tercera edición (ASQ) pudiera no ser culturalmente relevante para examinar el desarrollo en una comunidad rural de Guatemala, ya que el FMD representa el 40% de todas las examinaciones anormales después de la evaluación de necesidades en esta comunidad. Nuestra hipótesis es que esto se debe a la falta de exposición a objetos evaluados en el cuestionario, tales como bloques o interruptores de luz. Se compararon los puntajes del FMD de niños de áreas rurales en Guatemala (n=56) que participan en un programa de desarrollo del niño con niños norteamericanos latin-x hablantes del español y del inglés, quienes asisten a una clínica de cuidado primario y son examinados en chequeos anuales de rutina para niños sanos. Se clasificaron los grupos según la edad, el género y la condición económica. Los análisis del nivel de cada punto exploraron las diferencias a lo largo de los 3 grupos. En el grupo muestra de Guatemala, los índices de puntajes anormales de FMD fueron 16%, 62% y cero en los niños de 12, 24 y 36 meses de edad, respectivamente. Los puntajes anormales para el grupo de Guatemala en el ASQ-3 a los 24 meses significativamente difirieron (p=0.01) cuando se les comparó con los grupos muestras norteamericanos latin-x. El cuestionario para la edad de 24 meses tiene más preguntas acerca de objetos que los cuestionarios para las edades de 12 y 36 meses, lo cual pudiera explicar los más altos índices de puntajes anormales. La examinación del desarrollo con ASQ-3 pudiera no captar adecuadamente las destrezas de niños en comunidades similares.

Les recherches précédentes suggèrent que le domaine de la motricité fine (FMD en anglais) du Questionnaire des Ages et des Etapes - 3e édition (ASQ en anglais) pourrait ne pas être pertinent sur le point culturel pour le dépistage développemental dans une communauté rurale du Guatémala puisque le FMD explique 40% de tous les dépistages anormaux après une évaluation des besoins dans cette communauté. Nous émettons l'hypothèse que cela est dû au manque d'exposition à des objets évalués dans le questionnaire, comme des blocs ou des interrupteurs (électricité). Les scores de FMD d'enfants de milieu rural au Guatémala (n=56) participant à un programme de développement de l'enfant ont été comparés à ceux d'enfants Latinx-Américains parlant espagnol et anglais, patients d'une clinique de soins primaires aux Etats-Unis d'Amérique et dépisté avec des contrôles de santé annuels. Les groupes ont été assortis par groupe de genre et de statut socioéconomique. Des analyses de précision ont exploré les différences entre les 3 groupes. Dans l'échantillon du Guatémala les taux de score anormal FMD étaient de 16%, 62% et zéro chez les enfants de 12, 24 et 36 mois, respectivement. Les scores anormaux pour l'échantillon du Guatémala pour le ASQ-3 à 24 moi a différé de manière importante (p=0.01) lors de la comparaison aux groupes Latinx-Américains. Le questionnaire de 24 mois a plus de questions sur les objets que les questionnaires de 12 mois et de 36 mois, ce qui peut expliquer les taux plus élevés de scores anormaux. Le dépistage développemental avec le ASQ-3 pourrait s'avérer ne pas capturer de manière adéquate les compétences des enfants dans des communautés similaires.

Child feeding practices in children with Down syndrome in relationship to ethnicity and BMI.

Children with Down syndrome (DS) exhibit higher overweight and obesity rates than their typically developing peers, although it is unknown whether parent feeding practices for children with DS are associated with child weight status or parental and demographic factors, especially in the Hispanic and Latino populations. A prospective study of 68 children with DS from 2 to 7 years of age, who received care at a single, large, pediatric academic hospital was conducted to evaluate parent child feeding practices. Parents completed the Child Feeding Questionnaire+ (CFQ+) assessing seven primary factors of feeding practices and comparisons to children without DS were conducted. Data for body mass index (BMI) and BMI-for-sex/age z score (BMIz scores) were collected in clinic at the time of CFQ+ completion for both parent and child. Parents of children with DS endorsed higher perceived responsibility but lower concern about child weight and restriction compared to previously reported feeding practices in typically developing children. Hispanic/Latino parents of children with DS reported higher perceived responsibility and monitoring than non-Hispanic/Latino parents of children with DS. Higher BMIz scores in children with DS correlated with greater perceived child weight (p = 0.001) and concern about child weight (p = 0.008). Differences in BMIz scores were observed when comparing sex/ethnicity groups as determined by one-way ANOVA (F(3,64) = 4.170, p = 0.009); with Hispanic/Latino boys with DS more likely to have obesity. Our results suggest a need for specific DS Guidelines to educate providers and parents of children with DS on recommended feeding practices prior to parental concern about their child's weight, especially in the Hispanic/Latino population.

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.

Assessing Community Needs for Autism Spectrum Disorder: A Review of Rural/Frontier Needs Through Community Outreach With Developmental Pediatrics.

Early intervention is known to improve long-term outcomes for individuals with autism spectrum disorder (ASD). Access barriers to care limit timely engagement with supportive services. This report characterized the community needs and supportive services for children and families with suspected or diagnosed ASD. Families and providers participating in outreach clinics identified available services and their attitudes about support for ASD diagnosis. Chart reviews provided referral history, insurance, and current services. Children were nearly 6 years old, 95% of families relied on public health insurance, whereas 50% reported traveling 11 miles or greater for supportive services. Most providers (83%) were medically trained in primary care and placed 1-5 referrals per month to a tertiary referral hospital. Providers reported travel difficulty as the primary reason for referring patients for evaluation. Multiple barriers for supportive services were identified, highlighting the importance to increase the capacity and availability of local ASD supportive services.

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.

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.

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.

Association of Coexisting Conditions, Attention-Deficit/Hyperactivity Disorder Medication Choice, and Likelihood of Improvement in Preschool-Age Children: A Developmental Behavioral Pediatrics Research Network Study.

Objectives: To determine whether conditions coexisting with attention-deficit/hyperactivity disorder (ADHD) in preschool-age children are associated with choice of stimulants or alpha-2 adrenergic agonists (A2As) and/or likelihood of improvement in ADHD symptoms. Methods: A retrospective electronic health record review of 497 children from 7 Developmental Behavioral Pediatrics Research Network (DBPNet) sites. Children were <72 months when treated with medication for ADHD from January 1, 2013 to July 1, 2017. We abstracted coexisting conditions, initial medication prescribed, and whether the medication was associated with improvement in symptoms. Analysis of improvement was adjusted for clustering by clinician and site. Results: The median (interquartile range) child age at the time of initiation of ADHD medication was 62 (54-67) months. The most common coexisting conditions included language disorders (40%), sleep disorders (28%), disruptive behavior disorders (22.7%), autism spectrum disorder (ASD; 21.8%), and motor disorders (19.9%). No coexisting conditions were present in 17.1%; 1 in 36.8%, 2 in 26.8%, and ≥3 in 19.3%. Stimulants were initially prescribed for 322 (64.8%) and A2A for 175 (35.2%) children. Children prescribed stimulants were more likely to have no coexisting conditions than those prescribed A2A (22.3% vs. 7.4%; p < 0.001). Coexisting ASD and sleep disorder were associated with increased likelihood of starting A2As versus stimulants (p < 0.0005; p = 0.002). The association between medication treatment and improvement varied by number of coexisting conditions for 0, 1, 2, or ≥3, respectively (84.7%, 73.8%, 72.9%, 64.6%; p = 0.031). Children with ≥3 coexisting conditions were less likely to respond to stimulants than children with no coexisting conditions (67.4% vs. 79.9%; p = 0.037). Conclusions: Among preschool-age children with ADHD, those with ≥3 coexisting conditions were less likely to respond to stimulants than those with no coexisting conditions. This was not found for A2A, but further research is needed as very few children with no coexisting conditions were treated with A2A.

Peri-Pregnancy Cannabis Use and Autism Spectrum Disorder in the Offspring: Findings from the Study to Explore Early Development.

The association of autism spectrum disorder (ASD) with self-reported maternal cannabis use from 3 months pre-conception to delivery ("peri-pregnancy") was assessed in children aged 30-68 months, born 2003 to 2011. Children with ASD (N = 1428) were compared to children with other developmental delays/disorders (DD, N = 1198) and population controls (POP, N = 1628). Peri-pregnancy cannabis use was reported for 5.2% of ASD, 3.2% of DD and 4.4% of POP children. Adjusted odds of peri-pregnancy cannabis use did not differ significantly between ASD cases and DD or POP controls. Results were similar for any use during pregnancy. However, given potential risks suggested by underlying neurobiology and animal models, further studies in more recent cohorts, in which cannabis use and perception may have changed, are needed.

Primary contributors to gastrostomy tube placement in infants with Congenital Diaphragmatic Hernia.

OBJECTIVE: To identify factors associated with gastrostomy tube (GT) placement in infants with congenital diaphragmatic hernia (CDH). METHODS: Retrospective cohort study of 114 surviving infants with CDH at a single tertiary care neonatal intensive care unit from 2010-2019. Prenatal, perinatal and postnatal characteristics were compared between patients who were discharged home with and without a GT. Prenatal imaging was available for 50.9% of the cohort. Logistic regression was used to assess the association between GT placement and pertinent clinical factors. ROC curves were generated, and Youden's J statistic was used to determine optimal predictive cutoffs for continuous variables. Elastic net regularized regression was used to identify variables associated with GT placement in multivariable analysis. RESULTS: GT was placed in 43.9% of surviving infants with CDH. Prenatal variables predictive of GT placement were percent predicted lung volume (PPLV) <21%, total lung volume (TLV) <30 ml, lung-head ratio (LHR) <1.2 or observed to expected LHR (O/E LHR) <55%. Infants who required a GT were diagnosed earlier prenatally (23.6 ± 3.4 vs. 26.4 ± 5.6 weeks). Patients whose stomach was above the diaphragm on prenatal ultrasound (up) had a higher odds of GT placement compared to those with stomachs below the diaphragm (down) position by a factor of 2.9 (95% CI: 1.25, 7.1); p = 0.0154. Postnatally, infants with GT had lower Apgar scores at 1 and 5 min, longer lengths of stay and higher proportion of flap closures. Infants with a type C or D defect and extracorporeal membrane oxygenation (ECMO) were associated with increased odds of needing a GT. Postnatal association included being NPO for >12 days, need for transpyloric (TP) feeds for >10 days, >14 days to transition to a 30 min bolus feed, presence of gastro-esophageal reflux (GER), chronic lung disease and pulmonary hypertension. In multivariable analysis, duration of NPO, time to TP feeds, transition to 30 min bolus feeds remained significantly associated with GT placement after adjusting for severity of pulmonary hypertension (PH), GER diagnosis and sildenafil treatment. CONCLUSION: Identification of risk factors associated with need for long-term feeding access may improve timing of GT placement and prevent prolonged hospitalization related to feeding issues. LEVEL OF EVIDENCE RATING: Level II (Retrospective Study).

Preschool Attention-Deficit/Hyperactivity Disorder and Telephone Medication Management at Developmental-Behavioral Pediatric Network Sites.

OBJECTIVE: To understand developmental-behavioral pediatricians' (DBPs') use of clinic versus telephone encounters for preschool attention-deficit/hyperactivity disorder (ADHD) medication management. Understanding use of telephone encounters for pharmacologic management of ADHD in preschoolers may inform care for children with ADHD. METHODS: DBP investigators within Developmental Behavioral Pediatrics Research Network abstracted data from medical records of 503 children aged younger than 72 months treated for ADHD with medication by a DBP clinician between January 1, 2013, and July 1, 2017, across 7 sites. We abstracted data about medication treatment episodes (defined as start and end/change of a specific type, dose, and frequency of ADHD medication) and encounter type (clinic vs telephone). We present descriptive statistics related to encounter types and χ2 analyses to compare frequencies across reasons for the end of treatment episode and across sites. RESULTS: The study included 503 participants with a total of 1734 treatment episodes. The initial medication was started via a clinic encounter 85.9% of the time and via telephone encounters 14.1% of the time. When evaluating reasons for end of treatment episode, decreases in dose/frequency of medication were less common for clinic versus telephone encounters (27% vs 73%; p < 0.001) and adding an additional medication was more common at clinic versus telephone encounters (64% vs 36% p < 0.001). Sites varied significantly in frequency of telephone encounters, ranging from 16.9% to 68.9% (mean 45.7%). CONCLUSION: Telephone encounters were used for pharmacologic management of ADHD in preschoolers to varying degrees across 7 DBP sites. These findings suggest that telephone management serves an important role in ADHD care.

Deletions of NRXN1 (neurexin-1) predispose to a wide spectrum of developmental disorders.

Research has implicated mutations in the gene for neurexin-1 (NRXN1) in a variety of conditions including autism, schizophrenia, and nicotine dependence. To our knowledge, there have been no published reports describing the breadth of the phenotype associated with mutations in NRXN1. We present a medical record review of subjects with deletions involving exonic sequences of NRXN1. We ascertained cases from 3,540 individuals referred clinically for comparative genomic hybridization testing from March 2007 to January 2009. Twelve subjects were identified with exonic deletions. The phenotype of individuals with NRXN1 deletion is variable and includes autism spectrum disorders, mental retardation, language delays, and hypotonia. There was a statistically significant increase in NRXN1 deletion in our clinical sample compared to control populations described in the literature (P = 8.9 x 10(-7)). Three additional subjects with NRXN1 deletions and autism were identified through the Homozygosity Mapping Collaborative for Autism, and this deletion segregated with the phenotype. Our study indicates that deletions of NRXN1 predispose to a wide spectrum of developmental disorders.

Use of Transition Resources by Primary Care Providers for Youth With Intellectual and Developmental Disabilities.

Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.

Parent resuscitation preferences for young people with severe developmental disabilities.

OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility. DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not. SETTING: Pediatric skilled nursing facility in Massachusetts. PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years. MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR. RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053). CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.

Out-of-Home Placement for Children and Adolescents With Disabilities-Addendum: Care Options for Children and Adolescents With Disabilities and Medical Complexity.

Children and adolescents with significant intellectual and developmental disabilities and complex medical problems require safe and comprehensive care to meet their medical and psychosocial needs. Ideally, such children and youth should be cared for by their families in their home environments. When this type of arrangement is not possible, there should be exploration of appropriate, alternative noncongregate community-based settings, especially alternative family homes. Government funding sources exist to support care in the community, although there is variability among states with regard to the availability of community programs and resources. It is important that families are supported in learning about options of care. Pediatricians can serve as advocates for their patients and their families to access community-based services and to increase the availability of resources to ensure that the option to live in a family home is available to all children with complex medical needs.

Developmental Behavioral Pediatrician Support of the Medical Home for Children with Autism Spectrum Disorders.

OBJECTIVE: To identify challenges primary care providers (PCPs) experience providing a Medical Home for children with autism spectrum disorders (ASDs) and to describe the role developmental behavioral pediatricians (DBPs) play in the Medical Home Neighborhood. METHODS: The authors used purposeful sampling to recruit 25 PCPs from around Colorado to participate in 4 focus groups. Member checking was performed at the end of each group. Sampling continued until themes repeated and saturation was achieved. Focus groups were transcribed verbatim, and transcripts were analyzed using content analysis; an outside reviewer audited the data. RESULTS: Qualitative analysis yielded 30 codes that fell into 7 themes: provider education, shared model of care, initial diagnostic evaluation by the DBP, communication, office factors, cost and coverage, and access. PCPs identified knowledge gaps that led to decreased comfort and desired ongoing education and a centralized resource for providers. They envisioned a shared care model with ongoing specialist collaboration and improved communication within the care team. A specific role desired of the DBP was to provide the initial diagnostic evaluation and treatment plan with specific resources. Office factors, high cost and variable coverage, and poor access to services were barriers to providing a Medical Home for children with ASD. CONCLUSION: Working to remove barriers to shared care as well as providing continued educational opportunities will help improve access to a Medical Home Neighborhood for children with ASD. Advocacy is needed to help remove barriers related to cost, coverage, and access to services.

Out-of-home placement for children and adolescents with disabilities.

The vast majority of children and youth with chronic and complex health conditions who also have intellectual and developmental disabilities are cared for in their homes. Social, legal, policy, and medical changes through the years have allowed for an increase in needed support within the community. However, there continues to be a relatively small group of children who live in various types of congregate care settings. This clinical report describes these settings and the care and services that are provided in them. The report also discusses reasons families choose out-of-home placement for their children, barriers to placement, and potential effects of this decision on family members. We examine the pediatrician's role in caring for children with severe intellectual and developmental disabilities and complex medical problems in the context of responding to parental inquiries about out-of-home placement and understanding factors affecting these types of decisions. Common medical problems and care issues for children residing outside the family home are reviewed. Variations in state and federal regulations, challenges in understanding local systems, and access to services are also discussed.

End-of-life care policies and practices in pediatric skilled nursing facilities.

Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have elevated mortality with end-of-life care (EOLC) routinely provided. The present study explored policies and practice in such settings by surveying administrators, nursing directors, and medical directors in facilities across the United States. In addition to EOLC policies and practices, staff reported on their understanding of definitions of do-not-resuscitate orders, family involvement in EOLC planning, and the availability of in-service training. The presence of an official EOLC policy was associated with higher ratings of perception of effectiveness among staff. Staff felt more prepared and comfortable providing EOLC when in-service training was provided.