Evidence-Based Interventions in Autism.

Pediatricians have a critically important role in the care of children with autism, including conducting developmental screening to support early diagnosis and intervention, advising families about evidence-based treatments for autism spectrum disorder, and supporting families' emotional health as they care for a child with a developmental disability. The purpose of this article is to provide pediatricians with information about evidence-based autism treatments and how to determine which interventions are appropriate for children across the autism spectrum at different ages and developmental stages.

Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association.

Over the past decade, new research has advanced scientific knowledge of neurodevelopmental trajectories, factors that increase neurodevelopmental risk, and neuroprotective strategies for individuals with congenital heart disease. In addition, best practices for evaluation and management of developmental delays and disorders in this high-risk patient population have been formulated based on literature review and expert consensus. This American Heart Association scientific statement serves as an update to the 2012 statement on the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease. It includes revised risk categories for developmental delay or disorder and an updated list of factors that increase neurodevelopmental risk in individuals with congenital heart disease according to current evidence, including genetic predisposition, fetal and perinatal factors, surgical and perioperative factors, socioeconomic disadvantage, and parental psychological distress. It also includes an updated algorithm for referral, evaluation, and management of individuals at high risk. Risk stratification of individuals with congenital heart disease with the updated categories and risk factors will identify a large and growing population of survivors at high risk for developmental delay or disorder and associated impacts across the life span. Critical next steps must include efforts to prevent and mitigate developmental delays and disorders. The goal of this scientific statement is to inform health care professionals caring for patients with congenital heart disease and other key stakeholders about the current state of knowledge of neurodevelopmental outcomes for individuals with congenital heart disease and best practices for neuroprotection, risk stratification, evaluation, and management.

Stimulant Medication Treatment in Children with Congenital Heart Disease and Attention-Deficit/Hyperactivity Disorder: Cardiovascular Outcomes.

OBJECTIVE: Children with congenital heart disease (CHD) are at increased risk for attention-deficit/hyperactivity disorder (ADHD). The aim of this study was to determine whether children with CHD and ADHD clinically treated with stimulant medication were at increased risk for changes in cardiovascular parameters or death compared with CHD-matched controls. METHODS: In this retrospective cohort study, patients with CHD + ADHD treated with stimulant medication (exposed group [EG]) were matched by CHD diagnosis and visit age to patients not on stimulants (nonexposed group [NEG]). Cardiovascular parameters (heart rate [HR] and systolic and diastolic blood pressure [SBP and DBP]) and electrocardiograms (ECGs) from medical records over 12 months were compared using mixed effects models. RESULTS: Cardiovascular parameters for 151 children with CHD (mean age 8 ± 4 years) were evaluated (N = 46 EG and N = 105 NEG). Stimulant medication use was not associated with sudden cardiac death. HR and SBP did not significantly change over time in the EG and remained similar between groups. EG children had higher DBP compared with NEG children over time ( p = 0.001). Group × time interactions for HR, SBP, and DBP were not different between the EG and NEG. QTc was not significantly different between the EG and NEG (447 ms vs 439 ms, p = 0.23). EG children demonstrated improvement in ADHD symptoms. CONCLUSION: Stimulant medication use in children with CHD was not associated with clinically significant changes in cardiovascular parameters compared with controls. Stimulants should be considered for ADHD treatment in children with CHD when prescribed with appropriate monitoring and coordination with the cardiologist.

Altered white matter connectivity in children with congenital heart disease with single ventricle physiology.

Children born with congenital heart disease (CHD) have seen a dramatic decrease in mortality thanks to surgical innovations. However, there are numerous risk factors associated with CHD that can disrupt neurodevelopment. Recent studies have found that psychological deficits and structural brain abnormalities persist into adulthood. The goal of the current study was to investigate white matter connectivity in early school-age children (6-11 years), born with complex cyanotic CHD (single ventricle physiology), who have undergone Fontan palliation, compared to a group of heart-healthy, typically developing controls (TPC). Additionally, we investigated associations between white matter tract connectivity and measures on a comprehensive neuropsychological battery within each group. Our results suggest CHD patients exhibit widespread decreases in white matter connectivity, and the extent of these decreases is related to performance in several cognitive domains. Analysis of network topology showed that hub distribution was more extensive and bilateral in the TPC group. Our results are consistent with previous studies suggesting perinatal ischemia leads to white matter lesions and delayed maturation.

Long-Term Neurocognitive and Psychosocial Outcomes After Acute Myeloid Leukemia: A Childhood Cancer Survivor Study Report.

BACKGROUND: Survivors of childhood acute myeloid leukemia (AML) are vulnerable to medical late effects of treatment; however, less is known about their psychosocial outcomes. This study evaluated neurocognitive and psychosocial outcomes in long-term AML survivors treated with bone marrow transplantation (BMT) or intensive chemotherapy (IC) without BMT. METHODS: AML survivors (N = 482; median age at diagnosis = 8 [range = 0-20] years; median age at evaluation = 30 [range = 18-49] years) treated with BMT (n = 183) or IC (n = 299) and sibling controls (N = 3190; median age at evaluation = 32 [range = 18-58] years) from the Childhood Cancer Survivor Study were compared on emotional distress (Brief Symptom Inventory-18), neurocognitive problems (Childhood Cancer Survivor Study Neurocognitive Questionnaire), health-related quality of life (SF-36), and social attainment. Outcomes were dichotomized (impaired vs nonimpaired) using established criteria, and relative risks (RRs) were estimated with multivariable Poisson regression, adjusted for age at evaluation and sex. RESULTS: AML survivors were more likely than siblings to report impairment in overall emotional (RR = 2.19, 95% confidence interval [CI] = 1.51 to 3.18), neurocognitive (RR = 2.03, 95% CI = 1.47 to 2.79), and physical quality of life (RR = 2.71, 95% CI = 1.61 to 4.56) outcomes. Survivors were at increased risk for lower education (RR = 1.15, 95% CI = 1.03 to 1.30), unemployment (RR = 1.41, 95% CI = 1.16 to 1.71), lower income (RR = 1.39, 95% CI = 1.17 to 1.65), and not being married or having a partner (RR = 1.33, 95% CI = 1.17 to 1.51). BMT-treated survivors did not differ statistically significantly from IC-treated on any outcome measure. CONCLUSIONS: AML survivors are at increased risk for psychosocial impairment compared with siblings; however, BMT does not confer additional risk for psychosocial late effects compared with treatment without BMT.

The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States.

The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.

Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network.

OBJECTIVES: To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps. METHODS: A cross-sectional study of children 3 to 12 years old with ASD receiving care at 13 sites. Parent-reported characteristics of children with ASD were collected as outcome measures aligned with our network's aims of reducing rates of challenging behaviors, improving QoL, and ensuring receipt of recommended health services. Parents completed a survey about behavioral challenges, co-occurring conditions, health services, and the Patient-Reported Outcomes Measurement Information System Global Health Measure and the Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively. RESULTS: Analysis included 530 children. Challenging behaviors were reported by the majority of parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms, irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivity and irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-Reported Outcomes Measurement Information System Global Health Measure total score of 23.6 (3.7) was lower than scores reported in a general pediatric population. Most children had received recommended well-child (94%) and dental (85%) care in the past 12 months. CONCLUSIONS: This baseline data (1) affirmed the focus on addressing challenging behaviors; (2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability, and anxiety; and (3) identified targets for reducing severity of behaviors and strategies to improve data collection.

Characteristics of Treatment Decisions to Address Challenging Behaviors in Children with Autism Spectrum Disorder.

OBJECTIVE: To describe the characteristics of treatment decisions to address challenging behaviors in children with autism spectrum disorder (ASD). METHODS: Parents of children aged 4 to 15 years with ASD seen in a developmental behavioral pediatric (DBP) clinic completed validated measures to characterize their child's behaviors and their own level of stress. Parents reported their treatment priority before the visit. During the visit, we assessed shared decision making (SDM) using the Observing Patient Involvement (OPTION) scale and alignment of the clinician's treatment plan with the parent's priority. Before and after the visit, parents rated their uncertainty about the treatment plan using the Decisional Conflict Scale (DCS). We calculated descriptive statistics for the measures. RESULTS: Fifty-four families participated. Children were a mean (SD) age of 8.8 (3.3) years, and 87% were male. Children had a variety of behavioral challenges, and parents reported high levels of stress. Commonly reported parent treatment priorities were hyperactivity, tantrums, anxiety, and poor social skills. Levels of SDM were low, with a mean (SD) OPTION score of 24.5 (9.7). Parent priorities were addressed in 65% of treatment plans. Approximately 69% of parents had elevated DCS scores before the visit. Although levels of decisional conflict were lower after the visit compared with before the visit (p < 0.03), 46% of parents continued to report high scores on the DCS. CONCLUSION: Parents leave DBP visits with feelings of uncertainty about treatment decisions and with treatment plans that do not always address their priorities. SDM interventions hold promise to improve the quality of ASD treatment decisions.

Adolescent Perceptions of Outgrowing Childhood Attention-Deficit Hyperactivity Disorder: Relationship to Symptoms and Quality of Life.

OBJECTIVE: Parental and self-perceptions about outgrowing attention-deficit hyperactivity disorder (ADHD) likely impact treatment decisions; however, little is known about these perceptions. The aim of this study was to assess adolescent and parent perceptions of outgrowing childhood ADHD and evaluate how these perceptions relate to ADHD symptoms and quality of life (QoL). METHOD: Cross-sectional survey of adolescents (13-18 years) with a childhood diagnosis of ADHD and their parents. Participants were contacted by mail and completed questionnaires about: perceptions of outgrowing ADHD, current ADHD symptoms (the Conners' Scales), and QoL (PedsQL). ANCOVAs were conducted to assess the relationship between the perception of outgrowing ADHD and: (1) current ADHD symptoms and (2) QoL, controlling for co-morbidities and medication use. RESULTS: 115 adolescent-parent dyads were enrolled. Mean age was 15.5 ± 1.7 years, 73% were male, and 63% were taking ADHD medication. Only 16% of adolescents and 9% of parents reported outgrowing ADHD, with little correlation between parent and adolescent responses (kappa 0.3). Adolescents who reported Yes or Don't Know to outgrowing ADHD, compared to those who reported No, had lower scores on the inattention (IA) and hyperactivity (H) scales of both parent report and adolescent self-report Conners' scales and higher scores on the adolescent self-report PedsQL. CONCLUSION: A majority of adolescents do not endorse outgrowing their ADHD diagnosis, but those that do demonstrate fewer ADHD symptoms and better QoL than those who don't, suggesting that adolescents have insight about their level of impairment and should have a valued role in making treatment decisions.

Does Congenital Heart Disease Affect Neurodevelopmental Outcomes in Children with Down Syndrome?

OBJECTIVE: The impact that congenital heart disease (CHD) has on the neurodevelopment of children with Down syndrome (DS) is unknown and potentially has implications for targeted early intervention. This study assessed the relationship between CHD that required surgery in the first year of life and neurodevelopmental, behavioral and emotional functioning outcomes in children with DS. METHODS: A retrospective chart review of 1092 children (0-18 years) with DS who visited a single institution from 8/08-8/13 was performed. Children who underwent at least one of nine neurodevelopmental (cognitive, language, developmental) or academic tests were included in the analysis (N = 178). Cohort was age-divided into infants/toddlers (0-2 years), preschoolers (3-5 years), and school age/adolescent (6-18 years). Test scores of children with DS who underwent cardiac surgery in the first year of life were compared to children with DS without CHD. T test, chi-square and Mann Whitney U tests were used where appropriate. RESULTS: Infants/toddlers with cardiac surgery had lower scores for receptive (P = .01), expressive (P = .021) and composite language (P < .001) compared to those with no CHD. Preschoolers with cardiac surgery had lower language scores and lower visual motor scores, although not statistically significant. In school age children with cardiac surgery there were no differences in IQ scores, language scores, or academic achievement scores compared to those without CHD. Also at school-age there was no difference in the incidence of ADHD, executive function or on internalizing and externalizing behavior scores. CONCLUSION: Children with DS undergoing cardiac surgery during the first year demonstrated poorer neurodevelopmental outcomes as infants/toddler but had no difference at school age compared to children with DS without CHD. These results will guide early interventions to optimize neurodevelopmental outcomes in children with DS and will help with family counseling after CHD repair.

Shared Decision Making in the Care of Children with Developmental and Behavioral Disorders.

OBJECTIVE: Shared decision making (SDM) is most needed when there are multiple treatment options and no "right" choice. As with quality and experience of care, frequency of SDM may vary by health condition. The objectives of this study were (1) to compare parent report of SDM between a physical and a behavioral health condition and; (2) to compare parent report of SDM between two different behavioral health conditions. METHODS: Data on children age 3-17 years with asthma, attention deficit/hyperactivity disorder (ADHD), and/or autism spectrum disorder (ASD) were drawn from the 2009/10 National Survey of Children with Special Health Care Needs. Weighted logistic regression was used to compare a parent-reported, composite measure of SDM. Analyses controlled for sociodemographic factors that may influence experience of SDM. RESULTS: Compared to parents of children with asthma, parents of children with ADHD were significantly less likely to report experiencing consistent SDM (AOR 0.73). Compared to parents of children with ADHD, those of children with ASD had significantly lower odds of experiencing consistent SDM (AOR 0.59). Those with both ADHD and ASD had the same odds as those with ASD alone of experiencing consistent SDM. CONCLUSION: Use of SDM is particularly limited in developmental and behavioral conditions, such as ADHD and ASD. These data suggest that challenges to implementing SDM may include disease type, complexity, and use of specialty care. Research to identify specific barriers and facilitators of SDM is needed to inform interventions that will promote SDM in developmental and behavioral conditions.

Psychotropic Medication Use in Children and Adolescents With Down Syndrome.

OBJECTIVE: To estimate the rate of psychotropic medication use in children and adolescents with Down syndrome (DS) and to describe age-related trends. METHODS: Data were obtained from electronic health records from 2010 to 2013 for a retrospective cohort of 832 children with DS, aged 5 to 21 years, including 5324 visits. The following medication classes: central nervous system (CNS) stimulants, selective serotonin reuptake inhibitors, atypical antipsychotics, and alpha adrenergic agonists were examined. The distribution of rates of medication use across ages was assessed graphically and with the Cochran-Armitage trend test. Between-group comparisons of medication classes were conducted using χ. Repeated measures models with generalized estimating equations were used to assess changes in rates of medication use over time. RESULTS: Children aged 12 to 21 years were more likely to be on any medication at some point compared with children aged 5 to 11 years (25% vs 17%, respectively, p = .003). For 5 to 11 year olds, the odds of being on a psychotropic medication increased with age for all medication classes studied. For 12 to 18 year olds, the odds of being on a CNS stimulant significantly decreased with increasing age (odds ratio: 0.73, 95% confidence intervals, 0.58-0.91), whereas the odds of being on a medication from one of the other classes was stable. CONCLUSION: Changes in psychotropic medication use across the age span in children with DS suggest that the type and severity of neurobehavioral problems in this population likely also change over time. These findings will inform future research on the common mental health conditions and treatments for children with DS.

Burden of unmet mental health needs in assault-injured youths presenting to the emergency department.

OBJECTIVES: To determine if there is a gap between behavioral symptoms and previously recognized mental health conditions in youth victims of peer assault injuries and to describe gender differences in psychological symptoms. METHODS: A cross-sectional comparison of rates of previously diagnosed mental health conditions and clinical range behavioral symptoms as measured by the Child Behavior Checklist (CBCL) in 168 youths (range, 10-15 years old) presenting to the emergency department (ED) after an interpersonal assault injury. The Fisher exact test was used for comparisons. RESULTS: Mental health symptoms were common among assault-injured youths. More than half of the youths demonstrating clinical range symptoms on the attention problems or anxious/depressed scales of the CBCL had no prior diagnosis of these conditions. Girls were more likely than boys to exhibit clinical range aggressive behavior symptoms (odds ratio [OR], 3.61; 95% confidence interval [CI], 1.64-7.97). Aggressive behavior was associated with clinical range scores on the other problem scales of the CBCL. CONCLUSIONS: After an ED visit for an assault-related injury, less than half of 10 to 15 year olds with significant symptoms of common mental conditions reported having a previously diagnosed disorder, reflecting a burden of unmet psychological needs. An ED visit for an assault injury provides an opportunity to screen for emotional/behavioral symptoms and to refer to appropriate follow-up mental health care.

Update on environmental risk factors for attention-deficit/hyperactivity disorder.

Attention-deficit/hyperactivity disorder (ADHD) is a prevalent neurobehavioral disorder affecting 5% to 10% of children. Although considered to be a highly familial disorder, ADHD heritability estimates of 60% to 80% highlight the considerable role that environmental factors may still play in disorder susceptibility. Proposed ADHD environmental risk factors include prenatal substance exposures, heavy metal and chemical exposures, nutritional factors, and lifestyle/psychosocial factors. This paper reviews the literature published in 2010 investigating the association between environmental risk factors and ADHD or related symptomatology. Sources of risk factor exposure and the proposed mechanism by which each exposure is linked to ADHD-related neurobehavioral changes are also reported. Methodologic limitations of the current literature are discussed, and guidelines for future study are proposed. An improved understanding of the role that environmental factors play in ADHD etiology is critical to future ADHD prevention efforts.

Attitudes about stimulant medication for attention-deficit/hyperactivity disorder among African American families in an inner city community.

Limited information exists on views among African American families living in low-income, inner-city communities regarding the treatment of children with attention-deficit/hyperactivity disorder (ADHD). Parents of children treated for ADHD in an urban primary care setting were recruited to complete a survey to assess attitudes toward stimulant medications. Although most (71%) were initially hesitant to use stimulants based on what they heard in the lay press, 63% would recommend stimulant medication to a relative/friend whose child had ADHD. Approximately 17% believed stimulants led to drug abuse, 21% preferred counseling over medication, 21% felt medications had bad side effects, and 23% believed that too many children were medicated for ADHD. Most (90%) felt the medication was safe if a physician recommended it. Views did not differ between participants whose child had or had not received counseling. Additional studies are needed to clarify whether such views impact treatment choices and health outcomes.