Georgina Peacock

Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management A Scientific Statement From the American Heart Association

Background— The goal of this statement was to review the available literature on surveillance, screening, evaluation, and management strategies and put forward a scientific statement that would comprehensively review the literature and create recommendations to optimize neurodevelopmental outcome in the pediatric congenital heart disease (CHD) population. Methods and Results— A writing group appointed by the American Heart Association and American Academy of Pediatrics reviewed the available literature addressing developmental disorder and disability and developmental delay in the CHD population, with specific attention given to surveillance, screening, evaluation, and management strategies. MEDLINE and Google Scholar database searches from 1966 to 2011 were performed for English-language articles cross-referencing CHD with pertinent search terms. The reference lists of identified articles were also searched. The American College of Cardiology/American Heart Association classification of recommendations and levels of evidence for practice guidelines were used. A management algorithm was devised that stratified children with CHD on the basis of established risk factors. For those deemed to be at high risk for developmental disorder or disabilities or for developmental delay, formal, periodic developmental and medical evaluations are recommended. A CHD algorithm for surveillance, screening, evaluation, reevaluation, and management of developmental disorder or disability has been constructed to serve as a supplement to the 2006 American Academy of Pediatrics statement on developmental surveillance and screening. The proposed algorithm is designed to be carried out within the context of the medical home. This scientific statement is meant for medical providers within the medical home who care for patients with CHD. Conclusions— Children with CHD are at increased risk of developmental disorder or disabilities or developmental delay. Periodic developmental surveillance, screening, evaluation, and reevaluation throughout childhood may enhance identification of significant deficits, allowing for appropriate therapies and education to enhance later academic, behavioral, psychosocial, and adaptive functioning.

Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems

Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care.

Neurologic Disorders Among Pediatric Deaths Associated With the 2009 Pandemic Influenza

OBJECTIVE: The goal of this study was to describe reported influenza A (H1N1)pdm09 virus (pH1N1)-associated deaths in children with underlying neurologic disorders. METHODS: The study compared demographic characteristics, clinical course, and location of death of pH1N1-associated deaths among children with and without underlying neurologic disorders reported to the Centers for Disease Control and Prevention. RESULTS: Of 336 pH1N1-associated pediatric deaths with information on underlying conditions, 227 (68%) children had at least 1 underlying condition that conferred an increased risk of complications of influenza. Neurologic disorders were most frequently reported (146 of 227 [64%]), and, of those disorders, neurodevelopmental disorders such as cerebral palsy and intellectual disability were most common. Children with neurologic disorders were older (P = .02), had a significantly longer duration of illness from onset to death (P < .01), and were more likely to die in the hospital versus at home or in the emergency department (P < .01) compared with children without underlying medical conditions. Many children with neurologic disorders had additional risk factors for influenza-related complications, especially pulmonary disorders (48%). Children without underlying conditions were significantly more likely to have a positive result from a sterile-site bacterial culture than were those with an underlying neurologic disorder (P < .01). CONCLUSIONS: Neurologic disorders were reported in nearly two-thirds of pH1N1-associated pediatric deaths with an underlying medical condition. Because of the potential for severe outcomes, children with underlying neurologic disorders should receive influenza vaccine and be treated early and aggressively if they develop influenza-like illness.

Pediatric Anthrax Clinical Management

Anthrax is a zoonotic disease caused by Bacillus anthracis, which has multiple routes of infection in humans, manifesting in different initial presentations of disease. Because B anthracis has the potential to be used as a biological weapon and can rapidly progress to systemic anthrax with high mortality in those who are exposed and untreated, clinical guidance that can be quickly implemented must be in place before any intentional release of the agent. This document provides clinical guidance for the prophylaxis and treatment of neonates, infants, children, adolescents, and young adults up to the age of 21 (referred to as “children”) in the event of a deliberate B anthracis release and offers guidance in areas where the unique characteristics of children dictate a different clinical recommendation from adults.

Ebola Virus Disease and Children: What Pediatric Health Care Professionals Need to Know

The largest outbreak of Ebola virus disease (EVD) in history is occurring in West Africa. On August 8, 2014, the World Health Organization (WHO) declared this outbreak to be a Public Health Emergency of International Concern.1 As of October 8, 2014, 8399 EVD cases (including 416 in health care personnel) with 4033 deaths were reported, although reported cases are likely a substantial underestimate of the outbreak magnitude.2 Most EVD cases have been reported in Guinea, Liberia, and Sierra Leone, with fewer cases in Nigeria and a single case in Senegal. Although the suspected index case for this outbreak is believed to be a 2-year-old child who died in Guinea in December 2013, limited information is available on the impact of this outbreak on children.3 Cases of EVD were also identified in the Democratic Republic of the Congo, but analyses of viruses suggest that the Democratic Republic of the Congo outbreak is not linked to the wider epidemic. As of October 15, 2014, 3 EVD cases, including 2 health care personnel, had been identified in the United States and 5 EVD cases, including 4 health care personnel, were identified in West Africa and medically evacuated to the United States for further care. This situation is rapidly evolving, and new information will be posted to the Centers for Disease Control and Prevention (CDC) (http://www.cdc.gov/vhf/ebola/index.html) and WHO (http://www.who.int/mediacentre/factsheets/fs103/en/) websites as it becomes available. Our report is intended to complement information on the CDC webpages, with a focus on what pediatric health care professionals need to know.

Mass Screening for Severe Problem Behavior among Infants and Toddlers In Peru.

Severe behavior problems among people with intellectual and developmental disabilities (IDD) are a major barrier to integration in the community. Recent research suggests that these behaviors often begin very early in life and might be prevented by early identification and intervention (Rojahn, Schroeder, & Hoch, 2008). The current article presents a method of mass screening for early signs of severe behavior problems among infants and toddlers in Peru. A Parental Concerns Questionnaire (PCQ), which asks 15 questions, each related to a risk factor for severe behavior problems, based on past research on IDD, was used by veteran parents to interview 341 new parents who had been solicited by TV, radio, and public service announcements across the country. Of these, 262 were recruited and enrolled in a longitudinal study in which they will be followed for 12 months to see if at-risk children actually will develop severe behavior problems. An extensive initial interdisciplinary evaluation was given to each child. Consumer satisfaction questionnaires were given to the parents as to their attitude toward the screening method. Data from the Interdisciplinary Evaluations of the sample suggest a very high hit rate (96%) by the screening instrument (PCQ). Consumer satisfaction was 98%, suggesting that the method was tolerated well by parents. The PCQ is a brief and efficient method to screen infants and toddlers at risk for severe behavior problems. The data also suggest that parents suspect these problems at a very early age. Early intervention thus seems a feasible strategy to intervene before these problems become deeply ingrained as children develop.

Autism training in pediatric residency: evaluation of a case-based curriculum

Despite recent studies indicating the high prevalence of autism spectrum disorders (ASDs), there has been little focus on improving ASD education during pediatric residency training. The objective of this study was to evaluate a new curriculum developed in partnership with the Centers for Disease Control and Prevention and the Maternal and Child Health Bureau about ASDs. “Autism Case Training (ACT): A Developmental-Behavioral Pediatrics Curriculum” consists of 7 case-based teaching modules. Modules were facilitated by faculty at 26 pediatric residency programs and data were obtained on 114 residents. Pre- and post-test data revealed significant short-term improvements in residents’ knowledge and self-assessed competence regarding ASDs. Findings suggest that the ACT curriculum is effective in enhancing training about ASDs in pediatric residency programs.

Public Health Emergency Planning for Children in Chemical, Biological, Radiological, and Nuclear (CBRN) Disasters

Children represent nearly a quarter of the US population, but their unique needs in chemical, biological, radiological, and nuclear (CBRN) emergencies may not be well understood by public health and emergency management personnel or even clinicians. Children are different from adults physically, developmentally, and socially. These characteristics have implications for providing care in CBRN disasters, making resulting illness in children challenging to prevent, identify, and treat. This article discusses these distinct physical, developmental, and social traits and characteristics of children in the context of the science behind exposure to, health effects from, and treatment for the threat agents potentially present in CBRN incidents.

Policy statement - Supplemental security income (SSI) for children and youth with disabilities

The Supplemental Security Income (SSI) program remains an important source of financial support for low-income families of children with special health care needs and disabling conditions. In most states, SSI eligibility also qualifies children for the state Medicaid program, providing access to health care services. The Social Security Administration (SSA), which administers the SSI program, considers a child disabled under SSI if there is a medically determinable physical or mental impairment or combination of impairments that results in marked and severe functional limitations. The impairment(s) must be expected to result in death or have lasted or be expected to last for a continuous period of at least 12 months. The income and assets of families of children with disabilities are also considered when determining financial eligibility. When an individual with a disability becomes an adult at 18 years of age, the SSA considers only the individuals income and assets. The SSA considers an adult to be disabled if there is a medically determinable impairment (or combination of impairments) that prevents substantial gainful activity for at least 12 continuous months. SSI benefits are important for youth with chronic conditions who are transitioning to adulthood. The purpose of this statement is to provide updated information about the SSI medical and financial eligibility criteria and the disability-determination process. This statement also discusses how pediatricians can help children and youth when they apply for SSI benefits.

Autism spectrum disorder in fragile X syndrome: Cooccurring conditions and current treatment

BACKGROUND AND OBJECTIVE: Individuals with fragile X syndrome (FXS) are frequently codiagnosed with autism spectrum disorder (ASD). Most of our current knowledge about ASD in FXS comes from family surveys and small studies. The objective of this study was to examine the impact of the ASD diagnosis in a large clinic-based FXS population to better inform the care of people with FXS. METHODS: The study employed a data set populated by data from individuals with FXS seen at specialty clinics across the country. The data were collected by clinicians at the patient visit and by parent report for nonclinical and behavioral outcomes from September 7, 2012 through August 31, 2014. Data analyses were performed by using χ2 tests for association, t tests, and multiple logistic regression to examine the association between clinical and other factors with ASD status. RESULTS: Half of the males and nearly 20% of females met Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition criteria for current ASD. Relative to the FXS-only group, the FXS with ASD (FXS+ASD) group had a higher prevalence of seizures (20.7% vs 7.6%, P < .001), persistence of sleep problems later in childhood, increased behavior problems, especially aggressive/disruptive behavior, and higher use of α-agonists and antipsychotics. Behavioral services, including applied behavior analysis, appeared to be underused in children with FXS+ASD (only 26% and 16% in prekindergarten and school-age periods, respectively) relative to other populations with idiopathic ASD. CONCLUSIONS: These findings confirm among individuals with FXS an association of an ASD diagnosis with important cooccurring conditions and identify gaps between expected and observed treatments among individuals with FXS+ASD.