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Marijuana Legalization and Youth

Various states have legalized marijuana for medical purposes and/or decriminalized recreational marijuana use. These changes coincide with a decrease in perceived harmfulness of the drug and an increase in its use among youth. This change is of critical concern because of the potential harmful impact of marijuana exposure on adolescents. Marijuana use has been associated with several adverse mental health outcomes, including increased incidence of addiction and comorbid substance use, suicidality, and new-onset psychosis. Negative impacts on cognition and academic performance have also been observed. As the trend toward legalization continues, the pediatric community will be called on to navigate the subsequent challenges that arise with changing policies. Pediatricians are uniquely positioned to provide innovative care and educate youth and families on the ever-evolving issues pertaining to the impact of marijuana legalization on communities. In this article, we present and analyze the most up-to-date data on the effects of legalization on adolescent marijuana use, the effects of adolescent use on mental health and cognitive outcomes, and the current interventions being recommended for use in pediatric office settings.


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Public Health Considerations for Adolescent Initiation of Electronic Cigarettes

Adolescent use of electronic cigarettes (e-cigarettes) has increased dramatically, with younger and nicotine-naive adolescents starting to use these devices and use them more frequently than combustible cigarettes. In emerging evidence, it is shown that e-cigarettes are not effective in helping adult smokers quit and that youth using e-cigarettes are at risk for becoming nicotine dependent and continuing to use as adults. Important gaps in our knowledge remain regarding the long-term health impact of e-cigarettes, effective strategies to prevent and reduce adolescent e-cigarette use, and the impact of provider screening and counseling to address this new method of nicotine use.


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Screening for Problematic Internet Use

Problematic Internet use (PIU) by adolescents is of growing concern among both parents and pediatricians. Early controversies may have contributed to challenges in defining and measuring PIU. A variety of screening tools have evolved, aligned with different constructs of PIU, although a validated screening tool does exist. Current data and American Academy of Pediatrics policy reflect evidence-driven screening for PIU for all youth.


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Technology Use for Adolescent Health and Wellness

As avid users of technology, adolescents are a key demographic to engage when designing and developing technology applications for health. There are multiple opportunities for improving adolescent health, from promoting preventive behaviors to providing guidance for adolescents with chronic illness in supporting treatment adherence and transition to adult health care systems. This article will provide a brief overview of current technologies and then highlight new technologies being used specifically for adolescent health, such as artificial intelligence, virtual and augmented reality, and machine learning. Because there is paucity of evidence in this field, we will make recommendations for future research.


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Primary and Secondary Prevention of Youth Suicide

Youth suicide is a national and global public health crisis. Pediatricians can use primary and secondary prevention strategies to intervene with youth before or after the onset of suicidal behaviors. Universal suicide risk screening programs can be used to identify youth in medical settings who may otherwise pass through the health care setting with undetected suicide risk. Pediatricians are uniquely positioned to help foster resilience in their young patients and equip families of at-risk youth with safety plans and lethal means safety counseling. Pediatricians on the frontlines of this critical public health crisis require education and training in detecting suicide risk, managing those who screen positive, and connecting their patients to much needed mental health interventions and treatments. Evidence-based suicide risk screening and assessment tools, paired with interventions, are feasible and potentially life-saving in the medical setting.


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Sleep Disorders in Adolescents

Chronic sleep deprivation is a common, treatable condition among adolescents. Growing literature supports a myriad consequences that impact overall health, behavior, mood, and academic performance in this vulnerable age group during a time when there are rapid changes in physical development and emotional regulation. This article reviews the epidemiology and health effects of sleep deprivation in adolescents as well as common disorders leading to sleep loss and evidence to support treatment. Although a variety of important sleep disorders may disrupt quality of sleep in adolescents, such as obstructive sleep apnea, restless leg syndrome, and narcolepsy, this article will focus on common disorders that affect the quantity of sleep, such as poor sleep hygiene, circadian rhythm disorders, and insomnia.


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Diagnosis and Management of Polycystic Ovary Syndrome in Adolescents

Polycystic ovary syndrome (PCOS) is a common female reproductive disorder that often manifests during adolescence and is associated with disruptions in health-related quality of life. Prompt evaluation and clinical support after diagnosis may prevent associated complications and optimize overall health management. This article incorporates the most recent evidence and consensus guidelines to provide an updated review of the pathogenesis, clinical presentation, diagnostic evaluation, and management strategies for adolescents with this complex condition. We will review the recent international guidelines on PCOS; because the diagnosis of PCOS remains controversial, management of this condition is inconsistent. In 2019, PCOS remains a common, yet neglected, condition, in part, because of the lack of agreement around both diagnosis and management.


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Office-Based Screening for Sexually Transmitted Infections in Adolescents

Almost 1 in 4 adolescents have a sexually transmitted infection (STI). These infections are preventable through safe sexual practices and routine screening. Pediatricians are the first line of clinical care for adolescents and are well positioned to offer sexual and reproductive health care counseling and services to their patients; yet, there is a paucity of sexual health screening provided at routine health supervision visits. This article addresses the epidemiology of STIs in adolescents, reviews the evidence of current clinical practice, presents recommended STI screening from government and medical agencies, and offers strategies to address barriers to providing care for adolescents and for sexual health screening in primary care.


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Current Issues in the Treatment of Acne Vulgaris

Acne vulgaris is an extraordinarily common skin condition in adolescents. The mainstays of acne treatment have remained largely unchanged over recent years. In the context of increasing antibiotic resistance worldwide, there is a global movement away from antibiotic monotherapy toward their more restrictive use. Classically reserved for nodulocystic acne, isotretinoin has become the drug of choice by dermatologists for moderate to severe acne. Given the virtually ubiquitous nature of acne in teenagers, there remains an appreciable need for novel therapies. In this article, we will cover the currently used acne treatments, evaluate the issues and data supporting their use, explore the issues of compliance and the mental health implications of acne care, and recommend directions for the field of acne management in adolescents in the years ahead.


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Title Page


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STEPP IN: Working Together to Keep Infants Warm in the Perioperative Period

OBJECTIVES:

Reduce postoperative hypothermia by up to 50% over a 12-month period in children’s hospital NICUs and identify specific clinical practices that impact success.

METHODS:

Literature review, expert opinion, and benchmarking were used to develop clinical practice recommendations for maintaining perioperative euthermia that included the following: established euthermia before transport to the operating room (OR), standardized practice for maintaining euthermia on transport to and from the OR, and standardized practice to prevent intraoperative heat loss. Process measures were focused on maintaining euthermia during these time points. The outcome measure was the proportion of patients with postoperative hypothermia (temperature ≤36°C within 30 minutes of a return to the NICU or at the completion of a procedure in the NICU). Balancing measures were the proportion of patients with postoperative temperature >38°C or the presence of thermal burns. Multivariable logistic regression was used to identify key practices that improved outcome.

RESULTS:

Postoperative hypothermia decreased by 48%, from a baseline of 20.3% (January 2011 to September 2013) to 10.5% by June 2015. Strategies associated with decreased hypothermia include >90% compliance with patient euthermia (36.1–37.9°C) at times of OR arrival (odds ratio: 0.58; 95% confidence interval [CI]: 0.43–0.79; P < .001) and OR departure (odds ratio: 0.0.73; 95% CI: 0.56–0.95; P = .017) and prewarming the OR ambient temperature to >74°F (odds ratio: 0.78; 95% CI: 0.62–0.999; P = .05). Hyperthermia increased from a baseline of 1.1% to 2.2% during the project. No thermal burns were reported.

CONCLUSIONS:

Reducing postoperative hypothermia is possible. Key practices include prewarming the OR and compliance with strategies to maintain euthermia at select time points throughout the perioperative period.


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Preventing Asthma Emergencies in Schools

Asthma is a significant public health issue, impacting quality of life, morbidity, and health care costs nationally. Stock asthma rescue medication policies authorize school districts to maintain unassigned albuterol and enable trained staff members to administer the medication in response to asthma symptoms, exercise premedication, and asthma emergencies. Stock asthma rescue (or reliever) medication laws serve as an important fail-safe measure. Such laws provide districts with the ability to respond if a student has an asthma emergency at school but either lacks a diagnosis or does not have access to their own medication. As of September 2019, 13 states have enacted either a law or regulation authorizing the stocking of asthma rescue medication in schools: Arizona, Colorado, Georgia, Illinois, Missouri, New Hampshire, New Jersey, New Mexico, Oklahoma, Ohio, Texas, Utah, and West Virginia. Three additional states provide stock albuterol asthma guidelines but do not have legislation: Indiana, New York, and Nebraska. Some states have found that these policies reduce the need for 911 calls and emergency medical services transports as a result of asthma exacerbations. Initial data also demonstrate that these policies reach populations in need and improve health outcomes. This case study will describe the current state of asthma in Illinois, an innovative policy solution to address asthma emergencies in schools, and the steps taken to advocate for stock asthma rescue medication in Illinois. Legislation for stock albuterol in Illinois was signed into law in August 2018.


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Chronic Thrombocytopenia as the Initial Manifestation of STIM1-Related Disorders

Pediatric thrombocytopenia has a wide differential diagnosis, and recently, genetic testing to identify its etiology has become more common. We present a case of a 16-year-old boy with a history of chronic moderate thrombocytopenia, who later developed constitutional symptoms and bilateral hand edema with cold exposure. Laboratory evaluation revealed evidence both of inflammation and elevated muscle enzymes. These abnormalities persisted over months. His thrombocytopenia was determined to be immune mediated. Imaging revealed lymphadenopathy and asplenia, and a muscle biopsy was consistent with tubular aggregate myopathy. Ophthalmology evaluation noted photosensitivity, pupillary miosis, and iris hypoplasia. Genetic testing demonstrated a pathogenic variant in STIM1 consistent with autosomal dominant Stormorken syndrome. Our case is novel because of the overlap of phenotypes ascribed to both gain-of-function and loss-of-function pathogenic variants in STIM1, thereby blurring the distinctions between these previously described syndromes. Pediatricians should consider checking muscle enzymes when patients present with thrombocytopenia and arthralgia, myalgia, and/or muscle weakness. Our case highlights the importance of both multidisciplinary care and genetic testing in cases of chronic unexplained thrombocytopenia. By understanding the underlying genetic mechanism to a patient’s thrombocytopenia, providers are better equipped to make more precise medical management recommendations.


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Can a Parent Refuse the Brain Death Examination?

The American Academy of Neurology believes that doctors have the right to do tests to evaluate whether a patient is brain dead even if the family does not consent. They argue that physicians have "both the moral authority and professional responsibility" to do such evaluations, just as they have the authority and responsibility to declare someone dead by circulatory criteria. Not everyone agrees. Truog and Tasker argue that apnea testing to confirm brain death has risks and that, for some families, those risks may outweigh the benefits. So, what should doctors do when caring for a patient whom they believe to be brain dead but whose parents refuse to allow testing to confirm that the patient meets neurologic criteria for death? In this article, we analyze the issues that arise when parents refuse such testing.


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Reflections From a Pediatrician Who Went Back to Summer Camp


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Improving Antibiotic Prescribing for Pediatric Urinary Tract Infections in Outpatient Settings

OBJECTIVES:

To determine if a multicomponent intervention was associated with increased use of first-line antibiotics (cephalexin or sulfamethoxazole and trimethoprim) among children with uncomplicated urinary tract infections (UTIs) in outpatient settings.

METHODS:

The study was conducted at Kaiser Permanente Colorado, a large health care organization with ~127 000 members <18 years of age. After conducting a gap analysis, an intervention was developed to target key drivers of antibiotic prescribing for pediatric UTIs. Intervention activities included development of new local clinical guidelines, a live case-based educational session, pre- and postsession e-mailed knowledge assessments, and a new UTI-specific order set within the electronic health record. Most activities were implemented on April 26, 2017. The study design was an interrupted time series comparing antibiotic prescribing for UTIs before versus after the implementation date. Infants <60 days old and children with complex urologic or neurologic conditions were excluded.

RESULTS:

During January 2014 to September 2018, 2142 incident outpatient UTIs were identified (1636 preintervention and 506 postintervention). Pyelonephritis was diagnosed for 7.6% of cases. Adjusted for clustering of UTIs within clinicians, the proportion of UTIs treated with first-line antibiotics increased from 43.4% preintervention to 62.4% postintervention (P < .0001). The use of cephalexin (first-line, narrow spectrum) increased from 28.9% preintervention to 53.0% postintervention (P < .0001). The use of cefixime (second-line, broad spectrum) decreased from 17.3% preintervention to 2.6% postintervention (P < .0001). Changes in prescribing practices persisted through the end of the study period.

CONCLUSIONS:

A multicomponent intervention with educational and process-improvement elements was associated with a sustained change in antibiotic prescribing for uncomplicated pediatric UTIs.


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The History of the Personal Belief Exemption


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Weakness, Anemia, and Neutropenia in a 9-Year-Old Girl With Influenza

A previously healthy 9-year-old immigrant girl from Mexico was evaluated in the emergency department (ED) with one week of fatigue, fevers, rhinorrhea, and cough. She initially presented to her primary pediatrician, where a complete blood count revealed neutropenia, prompting referral to the ED. In the ED, she was found to be influenza A–positive. Because of dehydration, she received intravenous fluids and was admitted to the pediatric hospital medicine service. After 2 days, influenza symptoms improved, and oral intake increased. However, she was noted to have decreased bilateral lower-extremity strength, absent Achilles reflexes, decreased lower-extremity sensation and proprioception, a positive result on the Romberg sign, and abnormal heel-to-shin testing results. These findings prompted an urgent neurology consultation. After extensive imaging, laboratory evaluation, and further consultations, a diagnosis was established.


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Perspectives on Informed Consent Practices for Minimal-Risk Research Involving Foster Youth


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Eosinophilic Pneumonia and Lymphadenopathy Associated With Vaping and Tetrahydrocannabinol Use

Idiopathic acute eosinophilic pneumonia is a rare and potentially life-threatening condition that is defined by bilateral pulmonary infiltrates and fever in the presence of pulmonary eosinophilia. It often presents acutely in previously healthy individuals and can be difficult to distinguish from infectious pneumonia. Although the exact etiology of idiopathic acute eosinophilic pneumonia remains unknown, an acute hypersensitivity reaction to an inhaled antigen is suggested, which is further supported by recent public health risks of vaping (electronic cigarette) use and the development of lung disease. In this case, a patient with a year-long history of vaping in conjunction with tetrahydrocannabinol cartridge use who was diagnosed with idiopathic acute eosinophilic pneumonia with associated bilateral hilar lymphadenopathy is described.


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Anaerobic Necrotizing Pneumonia: Another Potential Life-threatening Complication of Vaping?

An adolescent girl with a history of frequent electronic cigarette use of nicotine was hospitalized with severe necrotizing pneumonia. Blood cultures obtained before the administration of empirical broad-spectrum intravenous antibiotics had positive results for the growth of Fusobacterium necrophorum. The pathogen is an uncommon but well-known cause of anaerobic pneumonia with unique features that are collectively referred to as Lemierre syndrome or postanginal sepsis. The syndrome begins as a pharyngeal infection. Untreated, the infection progresses to involve the ipsilateral internal jugular vein, resulting in septic thrombophlebitis with direct spread from the neck to the lungs causing multifocal necrotizing pneumonia. The teenager we present in this report had neither a preceding pharyngeal infection nor Doppler ultrasonographic evidence for the presence of deep neck vein thrombi, leading us to explore alternative mechanisms for her pneumonia. We propose the possibility that her behavior of frequent vaping led to sufficient pharyngeal irritation such that F necrophorum colonizing her oropharynx was inhaled directly into her lungs during electronic cigarette use. Preexisting, but not yet recognized, vaping-related lung injury may have also contributed to her risk of developing the infection. The patient was hospitalized for 10 days. At follow-up one month later, she still became short of breath with minimal exertion.


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Benzalkonium Chloride in Albuterol Solutions: Time for a Change?


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Red Cell Transfusion and Thrombotic Risk in Children


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Growing Evidence for Successful Care Management in Children With Medical Complexity


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Authors Response


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The Costs and Benefits of Regionalized Care for Children


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Promoting Ideal Cardiovascular Health Through the Life Span


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Understanding Gaps in Developmental Screening and Referral


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Pediatricians Are Perfectly Positioned to Help Mothers Reach Their Breastfeeding Goals


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Editors Note and Prologue


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Maternal and Child Health Bureaus Autism Research Program

OBJECTIVES:

To provide an overview and quantitatively demonstrate the reach of the Health Resources and Services Administration’s Maternal and Child Health Bureau autism research program.

METHODS:

We reviewed program reports and internal data from 59 autism research grantees. The US federal Interagency Autism Coordinating Committee’s strategic plan questions were used as a framework to highlight the contributions of the autism research program in advancing the field.

RESULTS:

The autism research program grantees advance research in several ways. Grantees have strengthened the evidence for autism interventions by conducting 89 studies at 79 distinct research sites. A total of 212 708 participants have enrolled in autism research program studies and 361 researchers have contributed to furthering autism research. The program addresses topics that align with the majority of the Interagency Autism Coordinating Committee’s priority topic areas, including advancements in treatments and interventions, services and supports, and identifying risk factors. Grantee products include 387 peer-reviewed publications, 19 tools, and 13 practice guidelines for improving care and intervention practices.

CONCLUSIONS:

The autism research program has contributed to medical advances in research, leveraged innovative training platforms to provide specialized training, and provided access to health services through research-based screening and diagnostic procedures. Autism research program studies have contributed to the development of evidence-based practice guidelines, informed policy guidelines, and quality improvement efforts to bolster advancements in the field. Although disparities still exist, the Health Resources and Services Administration’s Maternal and Child Health Bureau can reduce gaps in screening and diagnosis by targeting interventions to underserved populations including minority and rural communities.


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The Autism Treatment Network: Bringing Best Practices to All Children With Autism

The Autism Treatment Network and Autism Intervention Research Network on Physical Health were established in 2008 with goals of improving understanding of the medical aspects of autism spectrum disorders. Over the past decade, the combined network has conducted >2 dozen clinical studies, established clinical pathways for best practice, developed tool kits for professionals and families to support better care, and disseminated these works through numerous presentations at scientific meetings and publications in medical journals. As the joint network enters its second decade continuing this work, it is undergoing a transformation to increase these activities and accelerate their incorporation into clinical care at the primary care and specialty care levels. In this article, we describe the past accomplishments and present activities. We also outline planned undertakings such as the establishment of the Autism Learning Health Network, the increasing role of family members as co-producers of the work of the network, the growth of clinical trials activities with funding from foundations and industry, and expansion of work with primary care practices and autism specialty centers. We also discuss the challenges of supporting network activities and potential solutions to sustain the network.


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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.


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Family Engagement in the Autism Treatment and Learning Health Networks

Family involvement in the Autism Intervention Research Network on Physical Health, the Autism Treatment Network, and the Autism Learning Health Network, jointly the Autism Networks, has evolved and grown into a meaningful and robust collaboration between families, providers, and researchers. Family involvement at the center of the networks includes both local and national network-wide coproduction and contribution. Family involvement includes actively co-authoring research proposals for large grants, equal membership of network committees and workgroups, and formulating quality improvement pathways for local recruitment efforts and other network initiatives. Although families are involved in every aspect of network activity, families have been the driving force of specifically challenging the networks to concentrate research, education, and dissemination efforts around 3 pillar initiatives of addressing comorbidities of anxiety, attention-deficit/hyperactivity disorder, and irritability in autism during the networks’ upcoming funding cycle. The expansion of the networks’ Extension for Community Healthcare Outcomes program is an exciting network initiative that brings best practices in autism care to community providers. As equal hub members of each Extension for Community Healthcare Outcomes team, families ensure that participants are intimately cognizant of family perspectives and goals. Self-advocacy involvement in the networks is emerging, with plans for each site to have self-advocacy representation by the spring of 2020 and ultimately forming their own coproduction committee. The Autism Treatment Network, the Autism Intervention Research Network on Physical Health, and the Autism Learning Health Network continue to be trailblazing organizations in how families are involved in the growth of their networks, production of meaningful research, and dissemination of information to providers and families regarding emerging work in autism spectrum disorders.


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Disparities in Service Use Among Children With Autism: A Systematic Review

CONTEXT:

Research reveals racial, ethnic, and socioeconomic disparities in autism diagnosis; there is limited information on potential disparities related to other dimensions of services.

OBJECTIVE:

We reviewed evidence related to disparities in service use, intervention effectiveness, and quality of care provided to children with autism by race, ethnicity, and/or socioeconomic status.

DATA SOURCES:

Medline, PsychInfo, Educational Resources Informational Clearinghouse, and the Cumulative Index to Nursing and Allied Health Literature were searched by using a combination of Medical Subject Headings terms and keywords related to autism, disparities, treatment, and services.

STUDY SELECTION:

Included studies addressed at least one key question and met eligibility criteria.

DATA EXTRACTION:

Two authors reviewed the titles and abstracts of articles and reviewed the full text of potentially relevant articles. Authors extracted information from articles that were deemed appropriate.

RESULTS:

Treatment disparities exist for access to care, referral frequency, number of service hours, and proportion of unmet service needs. Evidence revealed that racial and ethnic minority groups and children from low-income families have less access to acute care, specialized services, educational services, and community services compared with higher-income and white families. We found no studies in which differences in intervention effectiveness were examined. Several studies revealed disparities such that African American and Hispanic families and those from low-income households reported lower quality of care.

LIMITATIONS:

The body of literature on this topic is small; hence it served as a limitation to this review.

CONCLUSIONS:

The documented disparities in access and quality of care may further identify groups in need of outreach, care coordination, and/or other interventions.


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Screening Tools for Autism Spectrum Disorder in Primary Care: A Systematic Evidence Review

CONTEXT:

Recommendations conflict regarding universal application of formal screening instruments in primary care (PC) and PC-like settings for autism spectrum disorder (ASD).

OBJECTIVES:

We systematically reviewed evidence for universal screening of children for ASD in PC.

DATA SOURCES:

We searched Medline, PsychInfo, Educational Resources Informational Clearinghouse, and Cumulative Index of Nursing and Allied Health Literature.

STUDY SELECTION:

We included studies in which researchers report psychometric properties of screening tools in unselected populations across PC and PC-like settings.

DATA EXTRACTION:

At least 2 authors reviewed each study, extracted data, checked accuracy, and assigned quality ratings using predefined criteria.

RESULTS:

We found evidence for moderate to high positive predictive values for ASD screening tools to identify children aged 16 to 40 months and 1 study for ≥48 months in PC and PC-like settings. Limited evidence evaluating sensitivity, specificity, and negative predictive value of instruments was available. No studies directly evaluated the impact of screening on treatment or harm.

LIMITATIONS:

Potential limitations include publication bias, selective reporting within studies, and a constrained search.

CONCLUSIONS:

ASD screening tools can be used to accurately identify percentages of unselected populations of young children for ASD in PC and PC-like settings. The scope of challenges associated with establishing direct linkage suggests that clinical and policy groups will likely continue to guide screening practices. ASD is a common neurodevelopmental disorder associated with significant life span costs.1,2 Growing evidence supports functional gains and improved outcomes for young children receiving intensive intervention, so early identification on a population level is a pressing public health challenge.3,4


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Families Experiences With Family Navigation Services in the Autism Treatment Network

BACKGROUND AND OBJECTIVES:

Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN’s effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families’ experiences with FN services.

METHODS:

Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3.

RESULTS:

Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources.

CONCLUSIONS:

Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.


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Parent Perceptions About Communicating With Providers Regarding Early Autism Concerns

BACKGROUND:

Long delays between parents’ initial concerns about their children’s development and a subsequent autism spectrum disorder (ASD) diagnosis are common. Although discussions between parents and providers about early ASD concerns can be difficult, they are critical for initiating early, specialized services. The principles of shared decision-making can facilitate these discussions. This qualitative study was designed to gain insights from parents of young children with ASD about their experiences communicating with primary care providers with the goal of identifying strategies for improving conversations and decision-making regarding the early detection of ASD.

METHODS:

Three 2-hour focus groups were conducted with 23 parents of children with ASD <8 years old. Qualitative analysis employed an iterative and systematic approach to identify key themes related to parents’ experiences.

RESULTS:

Eight themes related to communication about early ASD concerns emerged: characteristics of the child that caused parental concerns, the response of others when the parent brought up concerns, how concerns were brought up to the parent by others, parental responses when others mentioned concerns, information seeking, barriers to and facilitators of acting on concerns, and recommendations to providers. Parent responses suggest the need for increased use of shared decision-making strategies and areas for process improvements.

CONCLUSIONS:

Primary care providers can play a key role in helping parents with ASD concerns make decisions about how to move forward and pursue appropriate referrals. Strategies include responding promptly to parental concerns, helping them weigh options, and monitoring the family’s progress as they navigate the service delivery system.


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Mindfulness-Based Stress Reduction for Parents Implementing Early Intervention for Autism: An RCT

BACKGROUND AND OBJECTIVES:

Systems of care emphasize parent-delivered intervention for children with autism spectrum disorder (ASD). Meanwhile, multiple studies document psychological distress within these parents. This pilot longitudinal randomized controlled trial compared the parent-implemented Early Start Denver Model (P-ESDM) to P-ESDM plus mindfulness-based stress reduction (MBSR) for parents. We evaluated changes in parent functioning during active treatment and at follow-up.

METHODS:

Participants included children (<36 months old) with autism spectrum disorder and caregivers. Participants were randomly assigned to P-ESDM only (n = 31) or P-ESDM plus MBSR (n = 30). Data were collected at baseline, midtreatment, the end of treatment, and 1, 3, and 6 months posttreatment. Multilevel models with discontinuous slopes were used to test for group differences in outcome changes over time.

RESULTS:

Both groups improved during active treatment in all subdomains of parent stress (β = –1.42, –1.25, –0.92; P < 0.001), depressive symptoms, and anxiety symptoms (β = –0.62 and –0.78, respectively; P < 0.05). Parents who received MBSR had greater improvements than those receiving P-ESDM only in parental distress and parent-child dysfunctional interactions (β = –1.91 and –1.38, respectively; P < 0.01). Groups differed in change in mindfulness during treatment (β = 3.15; P < .05), with P-ESDM plus MBSR increasing and P-ESDM declining. Treatment group did not significantly predict change in depressive symptoms, anxiety symptoms, or life satisfaction. Differences emerged on the basis of parent sex, child age, and child behavior problems.

CONCLUSIONS:

Results suggest that manualized, low-intensity stress-reduction strategies may have long-term impacts on parent stress. Limitations and future directions are described.


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Patient- and Family-Centered Care in the Emergency Department for Children With Autism

BACKGROUND:

Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD.

METHODS:

Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components.

RESULTS:

Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care.

CONCLUSIONS:

Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.


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Therapy and Psychotropic Medication Use in Young Children With Autism Spectrum Disorder

BACKGROUND AND OBJECTIVES:

Guidelines suggest young children with autism spectrum disorder (ASD) receive intensive nonpharmacologic interventions. Additionally, associated symptoms may be treated with psychotropic medications. Actual intervention use by young children has not been well characterized. Our aim in this study was to describe interventions received by young children (3–6 years old) with ASD. The association with sociodemographic factors was also explored.

METHODS:

Data were analyzed from the Autism Speaks Autism Treatment Network (AS-ATN), a research registry of children with ASD from 17 sites in the United States and Canada. AS-ATN participants receive a diagnostic evaluation and treatment recommendations. Parents report intervention use at follow-up visits. At follow-up, 805 participants had data available about therapies received, and 613 had data available about medications received.

RESULTS:

The median total hours per week of therapy was 5.5 hours (interquartile range 2.0–15.0), and only 33.4% of participants were reported to be getting behaviorally based therapies. A univariate analysis and a multiple regression model predicting total therapy time showed that a diagnosis of ASD before enrollment in the AS-ATN was a significant predictor. Additionally, 16.3% of participants were on ≥1 psychotropic medication. A univariate analysis and a multiple logistic model predicting psychotropic medication use showed site region as a significant predictor.

CONCLUSIONS:

Relatively few young children with ASD are receiving behavioral therapies or total therapy hours at the recommended intensity. There is regional variability in psychotropic medication use. Further research is needed to improve access to evidence-based treatments for young children with ASD.


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Agitation in Patients With Autism Spectrum Disorder Admitted to Inpatient Pediatric Medical Units

OBJECTIVES:

Our goals for this study were to characterize the frequency of agitation in patients with autism spectrum disorder (ASD) admitted to an inpatient pediatric medical unit and to identify risk factors associated with agitation.

METHODS:

Through a retrospective chart review, we identified every patient between 8 and 19 years of age with a documented ASD diagnosis admitted to a pediatric medical unit over a 5-year period. We performed a detailed review of each admission, with a focus on factors hypothesized to be correlated with risk of agitation.

RESULTS:

One or more episode of agitation occurred during 37 (12.4%) of the 299 admissions and for 31 (18.5%) of the 168 patients who met inclusion criteria. History of agitation (risk ratio 21.9 [95% confidence interval 5.4–88.3] for history of severe agitation; P < .001) and documented sensory sensitivities (risk ratio 2.3 [95% confidence interval 1.3–3.8]; P < .001) were associated with a significantly increased risk of agitation during admission. History of past psychiatric admissions was associated with increased risk before, but not after, controlling for history of agitation and sensory sensitivities. Psychiatric comorbidity, intellectual disability, acute pain on admission, number of preadmission psychotropic medications, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition ASD diagnosis, age, and sex were not significantly associated with increased risk.

CONCLUSIONS:

Hospitalization can be challenging for patients with ASD. A subset of these patients experience episodes of agitation during admission, posing a safety risk to patients and staff. Characterizing risk factors associated with these behaviors may allow for identification of at-risk patients and guide targeted intervention to prevent negative behavioral outcomes.


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Factors Associated With Seizure Onset in Children With Autism Spectrum Disorder

BACKGROUND AND OBJECTIVES:

Children with autism spectrum disorder (ASD) have a higher prevalence of epilepsy compared with general populations. In this pilot study, we prospectively identified baseline risk factors for the development of seizures in individuals with ASD and also identified characteristics sensitive to seizure onset up to 6 years after enrollment in the Autism Speaks Autism Treatment Network.

METHODS:

Children with ASD and no history of seizures at baseline who either experienced onset of seizures after enrollment in the Autism Treatment Network or remained seizure free were included in the analysis.

RESULTS:

Among 472 qualifying children, 22 (4.7%) experienced onset of seizures after enrollment. Individuals who developed seizures after enrollment exhibited lower scores at baseline on all domains of the Vineland Adaptive Behavior Scales, greater hyperactivity on the Aberrant Behavior Checklist (25.4 ± 11.8 vs 19.2 ± 11.1; P = .018), and lower physical quality of life scores on the Pediatric Quality of Life Inventory (60.1 ± 24.2 vs 76.0 ± 18.2; P < .001). Comparing change in scores from entry to call-back, adjusting for age, sex, length of follow-up, and baseline Vineland II composite score, individuals who developed seizures experienced declines in daily living skills (–8.38; 95% confidence interval –14.50 to –2.50; P = .005). Adjusting for baseline age, sex, and length of follow-up, baseline Vineland II composite score was predictive of seizure development (risk ratio = 0.95 per unit Vineland II composite score, 95% confidence interval 0.92 to 0.99; P = .007).

CONCLUSIONS:

Individuals with ASD at risk for seizures exhibited changes in adaptive functioning and behavior.


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Weight Management in Primary Care for Children With Autism: Expert Recommendations

Research suggests that the prevalence of obesity in children with autism spectrum disorder (ASD) is higher than in typically developing children. The US Preventive Services Task Force and the American Academy of Pediatrics (AAP) have endorsed screening children for overweight and obesity as part of the standard of care for physicians. However, the pediatric provider community has been inadequately prepared to address this issue in children with ASD. The Healthy Weight Research Network, a national research network of pediatric obesity and autism experts funded by the US Health Resources and Service Administration Maternal and Child Health Bureau, developed recommendations for managing overweight and obesity in children with ASD, which include adaptations to the AAP’s 2007 guidance. These recommendations were developed from extant scientific evidence in children with ASD, and when evidence was unavailable, consensus was established on the basis of clinical experience. It should be noted that these recommendations do not reflect official AAP policy. Many of the AAP recommendations remain appropriate for primary care practitioners to implement with their patients with ASD; however, the significant challenges experienced by this population in both dietary and physical activity domains, as well as the stress experienced by their families, require adaptations and modifications for both preventive and intervention efforts. These recommendations can assist pediatric providers in providing tailored guidance on weight management to children with ASD and their families.


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Service Use Classes Among School-aged Children From the Autism Treatment Network Registry

BACKGROUND AND OBJECTIVES:

Use of specific services may help to optimize health for children with autism spectrum disorder (ASD); however, little is known about their service use patterns. We aimed to (1) define service use groups and (2) determine associations of sociodemographic, developmental, behavioral, and health characteristics with service use groups among school-aged children with ASD.

METHODS:

We analyzed cross-sectional data on 1378 children aged 6 to 18 years with an ASD diagnosis from the Autism Speaks Autism Treatment Network registry for 2008–2015, which included 16 US sites and 2 Canadian sites. Thirteen service use indicators spanning behavioral and medical treatments (eg, developmental therapy, psychotropic medications, and special diets) were examined. Latent class analysis was used to identify groups of children with similar service use patterns.

RESULTS:

By using latent class analysis, school-aged children with ASD were placed into 4 service use classes: limited services (12.0%), multimodal services (36.4%), predominantly educational and/or behavioral services (42.6%), or predominantly special diets and/or natural products (9.0%). Multivariable analysis results revealed that compared with children in the educational and/or behavioral services class, those in the multimodal services class had greater ASD severity and more externalizing behavior problems, those in the limited services class were older and had less ASD severity, and those in the special diets and/or natural products class had higher income and poorer quality of life.

CONCLUSIONS:

In this study, we identified 4 service use groups among school-aged children with ASD that may be related to certain sociodemographic, developmental, behavioral, and health characteristics. Study findings may be used to better support providers and families in decision-making about ASD services.


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An Epidemic of Hardship and Hunger

Why won’t Republicans help Americans losing their jobs?


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Trump and His Infallible Advisers

Beware men who never admit having been wrong.


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Crashing Economy, Rising Stocks: What’s Going On?

What’s bad for America is sometimes good for the market.


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Peacocks and Vultures Are Circling the Deficit

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McConnell to Every State: Drop Dead

Blocking federal aid is vile, but it’s also hypocritical.


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