Pediatrics : Health Care for Children and Youth With Autism and Other Neurodevelopmental Disorders (Février 2016)

mardi 1er mars 2016

Le supplément du numéro de février de la revue Pediatrics est consacré au soin et aux traitements de l’autisme et des troubles du neurodéveloppement chez l’enfant.

1. Erickson Warfield M, Zwaigenbaum L. Editors’ Note and Prologue : Health Care for Children and Youth With Autism and Other Neurodevelopmental Disorders. Pediatrics ;2016 (Feb) ;137 Suppl 2:S1-7.

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2. Park HY, Harwood RL, Yu SM, Kavanagh L, Lu MC. Autism and Other Developmental Disabilities Research Programs of the Maternal and Child Health Bureau. Pediatrics ;2016 (Feb) ;137 Suppl 2:S61-66.

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3. Perrin JM, Coury DL, Klatka K, Winklosky B, Wolfe A, Murray D, Kuhlthau KA. The Autism Intervention Research Network on Physical Health and the Autism Speaks Autism Treatment Network. Pediatrics ;2016 (Feb) ;137 Suppl 2:S67-71.

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4. Murray DS, Fedele A, Shui A, Coury DL. The Autism Speaks Autism Treatment Network Registry Data : Opportunities for Investigators. Pediatrics ;2016 (Feb) ;137 Suppl 2:S72-78.

OBJECTIVE : Patient registries can effectively collect data over a long period of time to provide a better understanding of the typical presentation of specific conditions. The autism spectrum disorders (ASDs) have experienced a marked increase in reported prevalence over the past 20 years for reasons that are not completely clear. The Autism Treatment Network (ATN) Registry was established to facilitate investigations into a variety of questions critical to expanding our understanding of ASDs. Here we describe the establishment of the registry, its components, some of its findings to date, and opportunities for further use of this data. METHODS : Participants are eligible for enrollment into the ATN registry if they are between the ages of 2.0 and 17.6 years at the time of enrollment and meet criteria for ASD as determined by clinical consensus on the basis of specific diagnostic measures (Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule, Second Edition ; Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition/Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition). Baseline measures include demographics, autism assessment, cognitive assessment data, behavioral data, sleep habits, quality of life, sensory data, and treatments. Several of the measures are collected at annual follow-up visits. RESULTS : More than 6800 children with ASD have been enrolled in the Autism Speaks ATN registry. Data from the registry have been reported at numerous scientific meetings and in several publications and have led to new recommendations for best practices in the management of ASD. CONCLUSIONS : A patient registry for children and adolescents with ASD has had and will continue to have a significant impact on care for this population. Investigators are encouraged to query this database to further its impact by testing novel hypotheses and conducting preliminary proof-of-concept analyses.

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5. Hansen RL, Blum NJ, Gaham A, Shults J. Diagnosis of Autism Spectrum Disorder by Developmental-Behavioral Pediatricians in Academic Centers : A DBPNet Study. Pediatrics ;2016 (Feb) ;137 Suppl 2:S79-89.

OBJECTIVES : To describe the clinical practices of physicians in the Developmental-Behavioral Pediatrics Network (DBPNet) to (1) diagnose autism spectrum disorders (ASDs), identify comorbidities, and evaluate etiology and (2) compare actual practice to established guidelines. METHODS : A total of 56 developmental-behavioral pediatricians completed encounter forms, including demographic/clinical information, for up to 10 consecutive new-patient visits given a diagnosis of ASD. Data were summarized by using descriptive statistics. Analysis of the statistical significance of differences between sites (n = 10) used general estimating equations and mixed-effects logistic regression to adjust for clustering by clinician within site. RESULTS : A total of 284 ASD forms were submitted. Most assessments (56%) were completed in 1 visit (27.5% in 2 visits, 8.6% in 3 visits). Use of the Childhood Autism Rating Scale, Autism Diagnostic Observation Schedule, or Screening Tool for Autism in Toddlers and Young Children varied across sites from 28.6% to 100% of encounters (P < .001). A developmental assessment was reviewed/completed at 87.7% of encounters (range : 77.8%-100% ; P = .061), parent behavior rating scales were reviewed/completed at 65.9% (range : 35.7%-91.4% ; P = .19), and teacher behavior rating scales were reviewed/completed at 38.4% (range : 15%-69.2% ; P = .19). Only 17.3% (95% confidence interval : 12.8%-21.7%) of evaluations were completed by an interdisciplinary team. A majority (71%) of patients had at least 1 comorbid diagnosis (31% had at least 2 and 12% at had least 3). Etiologic evaluations were primarily genetic (karyotype : 49% ; microarray : 69.7% ; fragile X : 71.5%). CONCLUSIONS : Despite site variability, the majority of diagnostic evaluations for ASD within DBPNet were completed by developmental-behavioral pediatricians without an interdisciplinary team and included a developmental assessment, ASD-specific assessment tools, and parent behavior rating scales. These findings document the multiple components of assessment used by DBPNet physicians and where they align with existing guidelines.

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6. Ezell J, Shui A, Sanders K, Veenstra-VanderWeele J. Pattern of Diagnosis and Co-occurring Symptoms in Adopted Children With Autism Spectrum Disorder. Pediatrics ;2016 (Feb) ;137 Suppl 2:S90-97.

OBJECTIVES : To determine whether adopted children with autism spectrum disorder (ASD) differ from the general ASD population in terms of diagnosis, internalizing and externalizing behaviors, sleep problems, and medications. METHODS : We studied 163 adoptees in the Autism Speaks Autism Treatment Network (ATN) in comparison with 5624 nonadopted ATN participants (aged 1.5-17.6 years ; mean [SD] = 6.2 [3.4] years). Gender, age, race, ethnicity, IQ, and categorical Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, ASD diagnosis were tested for differences by group (adopted versus nonadopted) by using independent-samples t tests for continuous variables and Fisher’s exact tests for categorical variables. Logistic or linear regression models were used to examine the association between adoption status and several outcome variables, after controlling for covariates. RESULTS : After controlling for demographics and diagnosis, there were significant differences in group characteristics, including greater propensity for externalizing behavior (P < .001), internalizing behavior (P = .001), and sleep problems (P < .001) in the adopted population. Adoptees were also prescribed psychotropic medications (P < .001) more often than the nonadoptees. Adoptees received a diagnosis of pervasive developmental disorder-not otherwise specified significantly more frequently than controls (odds ratio = 1.8 ; CI = 1.3-2.5 ; P < .001), despite no significant difference in symptoms on standardized measures. CONCLUSIONS : These results suggest that the population of adopted children with ASD differs from the general ASD population both with regard to diagnostic subtype and co-occurring behavioral problems. Future research should evaluate the contributions of specific factors associated with adoption such as biological family history, pregnancy history, early childhood experience, and age at adoption.

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7. Malow BA, Katz T, Reynolds AM, Shui A, Carno M, Connolly HV, Coury D, Bennett AE. Sleep Difficulties and Medications in Children With Autism Spectrum Disorders : A Registry Study. Pediatrics ;2016 (Feb) ;137 Suppl 2:S98-S104.

OBJECTIVES : Sleep difficulties are common in children with autism spectrum disorders, with wide-ranging effects on the child’s daytime behavior. We reviewed data within our Autism Speaks Autism Treatment Network Registry to determine the prevalence of sleep difficulties and patterns of medication use. METHODS : Data from 1518 children ages 4 to 10 years were analyzed to determine the number of children documented to have sleep difficulties by parent-completed questionnaires and clinician-completed forms and how these findings related to the use of sleep medications. RESULTS : The Children’s Sleep Habits Questionnaire total score was >/=41 (associated with clinically significant sleep problems in past research) in 71% of children. The prevalence of sleep diagnoses was less frequent (30% of children aged 4-10 years ; P < .0001). Medications for sleep were prescribed in 46% of 4- to 10-year-olds given a sleep diagnosis. The most common medication used for sleep was melatonin followed by alpha-agonists, with a variety of other medications taken for sleep (anticonvulsants, antidepressants, atypical antipsychotics, and benzodiazepines). Children taking medications for sleep had worse daytime behavior and pediatric quality of life than children not taking sleep medications. CONCLUSIONS : Parent concerns about sleep may not be reflected in the information gathered during a clinic visit, supporting the need to develop screening practice pathways for sleep in autism spectrum disorders. Furthermore, many medications taken for sleep have adverse effects, supporting the need for evidence-based interventions in this population.

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8. Greenlee JL, Mosley AS, Shui AM, Veenstra-VanderWeele J, Gotham KO. Medical and Behavioral Correlates of Depression History in Children and Adolescents With Autism Spectrum Disorder. Pediatrics ;2016 (Feb) ;137 Suppl 2:S105-114.

BACKGROUND AND OBJECTIVES : Depression is commonly associated with autism spectrum disorder (ASD) across the life span. We sought to identify medical and behavioral problems associated with a history of a parent-reported diagnosis of depression in a large sample of school-aged children and adolescents with ASD. METHODS : A sample of 1272 participants (aged 6-17 years ; mean [SD] : 9.56 [2.79] years) from the Autism Speaks Autism Treatment Network consortium were divided into "ever-depressed" (n = 89) and "nondepressed" (n = 1183) groups on the basis of caregiver endorsement of children’s current or previous diagnoses of depression. RESULTS : In total, 7.0% of children with ASD (4.8% of those aged 6-12 years and 20.2% of those aged 13-17 years) were reported to have a history of a depression diagnosis. Positive depression history was associated with greater chronological age, higher IQ, and Asperger disorder diagnosis. After controlling for age, IQ, and within-spectrum categorical diagnosis, the ever-depressed group exhibited significantly greater rates of seizure disorders (odds ratio = 2.64) and gastrointestinal problems (odds ratio = 2.59) and trend-level differences in aggression, somatic complaints, and social impairments. The groups did not differ in autism severity, repetitive behaviors, sleep problems, eating problems, self-injurious behavior, or current intervention use. CONCLUSIONS : Co-occurring depression is a particularly common problem in higher-functioning older children within the Autism Treatment Network. Our findings indicate that children with ASD and a history of a depression diagnosis are more likely to also have co-occurring medical problems, although the presence and direction of causality is unclear.

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9. Vasa RA, Mazurek MO, Mahajan R, Bennett AE, Bernal MP, Nozzolillo AA, Arnold LE, Coury DL. Assessment and Treatment of Anxiety in Youth With Autism Spectrum Disorders. Pediatrics ;2016 (Feb) ;137 Suppl 2:S115-123.

OBJECTIVES : Anxiety is one of the most prevalent co-occurring symptoms in youth with autism spectrum disorder (ASD). The assessment and treatment recommendations proposed here are intended to help primary care providers with the assessment and treatment of anxiety in ASD. METHODS : The Autism Speaks Autism Treatment Network/Autism Intervention Research on Physical Health Anxiety Workgroup, a multidisciplinary team of clinicians and researchers with expertise in ASD, developed the clinical recommendations. The recommendations were based on available scientific evidence regarding anxiety treatments, both in youth with ASD and typically developing youth, and clinical consensus of the workgroup where data were lacking. RESULTS : Assessment of anxiety requires a systematic approach to evaluating symptoms and potential contributing factors across various developmental levels. Treatment recommendations include psychoeducation, coordination of care, and modified cognitive-behavioral therapy, particularly for children and adolescents with high-functioning ASD. Due to the limited evidence base in ASD, medications for anxiety should be prescribed cautiously with close monitoring of potential benefits and side effects. CONCLUSIONS : Assessment and treatment of clinical anxiety in youth with ASD require a standardized approach to improve outcomes for youth with ASD. Although this approach provides a framework for clinicians, clinical judgment is recommended when making decisions about individual patients.

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10. Fung LK, Mahajan R, Nozzolillo A, Bernal P, Krasner A, Jo B, Coury D, Whitaker A, Veenstra-Vanderweele J, Hardan AY. Pharmacologic Treatment of Severe Irritability and Problem Behaviors in Autism : A Systematic Review and Meta-analysis. Pediatrics ;2016 (Feb) ;137 Suppl 2:S124-135.

BACKGROUND : Autism spectrum disorder (ASD) is increasingly recognized as a public health issue. Irritability and aggression (IA) often negatively affect the lives of people with ASD and their families. Although many medications have been tested for IA in ASDs in randomized controlled trials (RCTs), critical quantitative analyses of these trials are lacking in the literature. OBJECTIVES : To systematically review and quantitatively analyze the efficacy and safety of pharmacologic treatments for IA in youth with ASD. DATA SOURCES : Studies were identified from Medline, PsycINFO, Embase, and review articles. METHODS : Original articles on placebo-controlled RCTs of pharmacologic treatments of IA in youth age 2 to 17 years with ASD were included. Data items included study design, study goals, details of study participants, details of intervention, study results, statistical methods, side effects, and risks of bias. The primary study outcome measure was the effect size of reduction in the Aberrant Behavioral Checklist-Irritability (ABC-I) scores in the medication group, as compared with placebo, in RCTs using parallel groups design. RESULTS : Forty-six RCTs were identified. Compared with placebo, 3 compounds resulted in significant improvement in ABC-I at the end of treatment. Risperidone and aripiprazole were found to be the most effective, with the largest effect sizes. Sedation, extrapyramidal sides effects, and weight gain were assessed quantitatively. CONCLUSIONS : Although risperidone and aripiprazole have the strongest evidence in reducing ABC-I in youth with ASD, a few other compounds also showed significant efficacy with fewer potential side effects and adverse reactions in single studies.

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11. McGuire K, Fung LK, Hagopian L, Vasa RA, Mahajan R, Bernal P, Silberman AE, Wolfe A, Coury DL, Hardan AY, Veenstra-VanderWeele J, Whitaker AH. Irritability and Problem Behavior in Autism Spectrum Disorder : A Practice Pathway for Pediatric Primary Care. Pediatrics ;2016 (Feb) ;137 Suppl 2:S136-148.

OBJECTIVE : Pediatric primary care providers (PCPs) caring for patients with autism spectrum disorder (ASD) often encounter irritability (vocal or motoric outbursts expressive of anger, frustration, or distress) and problem behavior (directed acts of aggression toward other people, self, or property). The Autism Intervention Research Network on Physical Health and Autism Speaks Autism Treatment Network charged a multidisciplinary workgroup with developing a practice pathway to assist PCPs in the evaluation and treatment of irritability and problem behavior (I/PB). METHODS : The workgroup reviewed the literature on the evaluation and treatment of contributory factors for I/PB in ASD. The workgroup then achieved consensus on the content and sequence of each step in the pathway. RESULTS : The practice pathway is designed to help the PCP generate individualized treatment plans based on contributing factors identified in each patient. These factors may include medical conditions, which the PCP is in a key position to address ; functional communication challenges that can be addressed at school or at home ; psychosocial stressors that may be ameliorated ; inadvertent reinforcement of I/PB ; and co-occurring psychiatric conditions that can be treated. The pathway provides guidance on psychotropic medication use, when indicated, within an individualized treatment plan. In addition to guidance on assessment, referral, and initial treatment, the pathway includes monitoring of treatment response and periodic reassessment. CONCLUSIONS : The pediatric PCP caring for the patient with ASD is in a unique position to help generate an individualized treatment plan that targets factors contributing to I/PB and to implement this plan in collaboration with parents, schools, and other providers.

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12. Austin J, Manning-Courtney P, Johnson ML, Weber R, Johnson H, Murray D, Ratliff-Schaub K, Tadlock AM, Murray M. Improving Access to Care at Autism Treatment Centers : A System Analysis Approach. Pediatrics ;2016 (Feb) ;137 Suppl 2:S149-157.

OBJECTIVE : The prevalence of autism spectrum disorder is steadily increasing and placing more demands on already overburdened diagnostic and treatment systems. A thoughtful, systematic reorganization of autism service delivery may reduce delays and better meet the growing need. METHODS : Two clinical centers in the Autism Intervention Research Network on Physical Health, Cincinnati Children’s Hospital Medical Center (CCHMC) and Nationwide Children’s Hospital (NCH), undertook a year-long access improvement project to reduce delays to care by using system analysis to identify sources of delay and to target changes by using a set of defined access principles. Although both sites addressed access, they focused on slightly different targets (reducing number of patients with autism spectrum disorders waiting for follow-up appointments at NCH and reducing delay to new diagnosis at CCHMC). RESULTS : Both sites achieved dramatic improvements in their complex, multidisciplinary systems. A 94% reduction in number of patients on the waitlist from 99 to 6 patients and a 22% reduction in median delay for a new ongoing care appointment were realized at NCH. A 94% reduction in third next available appointment for new physician visits for children 3 to 5 years old was realized at CCHMC. CONCLUSIONS : This article demonstrates that 2 different clinical systems improved access to care for autism diagnosis and follow-up care by identifying sources of delay and using targeted changes based on a set of access change principles. With appropriate guidance and data analysis, improvements in access can be made.

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13. Kuhlthau KA, Delahaye J, Erickson-Warfield M, Shui A, Crossman M, van der Weerd E. Health Care Transition Services for Youth With Autism Spectrum Disorders : Perspectives of Caregivers. Pediatrics ;2016 (Feb) ;137 Suppl 2:S158-166.

BACKGROUND AND OBJECTIVE : This paper seeks to describe the experience of youth with autism spectrum disorder (ASD) in making the health care transition (HCT) to adult care. METHODS : We surveyed 183 parents and guardians of youth with ASD, assessing the extent to which youth and families experienced and desired HCT services, their satisfaction with services, and obstacles to transition. Descriptive statistics were used to examine HCT measures and Fisher’s exact and t tests assessed whether demographic or health measures were associated with service receipt. Any measures with a P value <.05 were included in a logistic regression model, with service receipt as the dependent variable. RESULTS : The receipt of transition services was low overall, with rates for individual services ranging from 3% to 33% and only 60% of the sample receiving any transition service. Despite these low rates, a majority of respondents reported wanting services (73.3%-91.6%), and satisfaction for received services was high (89%-100%). Regression analyses showed depression to be the only variable significantly associated with service receipt. Youth who were identified by their caregivers as having depression experienced a higher rate of transition service receipt than those not identified as having depression. CONCLUSIONS : Findings suggest that there is a great need to address the provision of HCT services for youth with ASD. Although families who received HCT services were generally satisfied, overall rates of service receipt were quite low, and those who were not provided with services generally desired them.

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14. Lindgren S, Wacker D, Suess A, Schieltz K, Pelzel K, Kopelman T, Lee J, Romani P, Waldron D. Telehealth and Autism : Treating Challenging Behavior at Lower Cost. Pediatrics ;2016 (Feb) ;137 Suppl 2:S167-175.

OBJECTIVE : To determine whether challenging behavior in young children with autism and other developmental disabilities can be treated successfully at lower cost by using telehealth to train parents to implement applied behavior analysis (ABA). METHODS : We compared data on the outcomes and costs for implementing evidence-based ABA procedures to reduce problem behavior by using 3 service delivery models : in-home therapy, clinic-based telehealth, and home-based telehealth. Participants were 107 young children diagnosed with autism or other neurodevelopmental disorders, and data analysis focused on the 94 children who completed treatment. RESULTS : All 3 service delivery models demonstrated successful reduction of problem behavior by training parents to conduct functional analysis and functional communication training. The mean percentage reduction in problem behavior was >90% in all 3 groups after treatment, and treatment acceptability based on parent ratings was high for all groups. Total costs for implementing treatment were lowest for home telehealth, but both telehealth models were significantly less costly than in-home therapy. CONCLUSIONS : This research demonstrated that parents can use ABA procedures to successfully treat behavior problems associated with autism spectrum disorders regardless of whether treatment is directed by behavior consultants in person or via remote video coaching. Because ABA telehealth can achieve similar outcomes at lower cost compared with in-home therapy, geographic barriers to providing access to ABA for treating problem behavior can be minimized. These findings support the potential for using telehealth to provide research-based behavioral treatment to any family that has access to the Internet.

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15. Benevides TW, Carretta HJ, Mandell DS. Differences in Perceived Need for Medical, Therapeutic, and Family Support Services Among Children With ASD. Pediatrics ;2016 (Feb) ;137 Suppl 2:S176-185.

OBJECTIVE : Identifying racial and ethnic differences in perceived need for treatment among families of children with autism spectrum disorder (ASD) will improve understanding of disparities in care seeking. We described racial and ethnic differences in perceived need for services that children with ASD and their families frequently use. METHODS : We conducted bivariate analyses of racial and ethnic categories and perceived need for 6 common services used by children with ASD as found in the 2005 to 2006 (n = 2123) and the 2009 to 2010 (n = 3055) National Survey of Children With Special Health Care Needs data sets. Multivariate logistic regressions within concatenated data sets were conducted to examine associations between racial and ethnic category and perceived service needs while controlling for predisposing, enabling, and child factors. RESULTS : Compared with caregivers of white non-Hispanic children with ASD, caregivers of Hispanic children reported less need for prescription medications in adjusted multivariate analyses. Caregivers of black non-Hispanic children with ASD reported less need for prescription medications and for child and family mental health services than caregivers of white non-Hispanic children. Both English-speaking Hispanic caregivers and black non-Hispanic caregivers reported greater need for occupational, speech, and physical therapy than white non-Hispanic caregivers. No racial or ethnic differences were found in perceived need for specialty medical care or respite care. CONCLUSIONS : Caregivers of children with ASD from different racial and ethnic backgrounds may differentially perceive need for different types of care. Their perceptions may in turn affect how they prioritize and seek care, independent of their child’s specific needs.

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16. Thomas KC, Williams CS, deJong N, Morrissey JP. Examination of Parent Insurance Ratings, Child Expenditures, and Financial Burden Among Children With Autism : A Mismatch Suggests New Hypotheses to Test. Pediatrics ;2016 (Feb) ;137 Suppl 2:S186-195.

OBJECTIVE : Families raising children with autism contribute significant amounts to the cost of care. In this era of health care reform, families have more insurance choices, but people are unfamiliar with health insurance terms. This study uses 2 national data sets to examine health insurance ratings from parents raising children with autism and child expenditures to explore how these measures align. METHODS : Children with autism who met criteria for special health care needs and were continuously insured were examined. Data from the National Survey of Children With Special Health Care Needs 2009-2010 were used to examine parent report of adequate insurance (n = 3702). Pooled data from the Medical Expenditure Panel Survey 2002-2011 were used to examine expenditures (n = 346). Types of health insurance included private alone, Medicaid alone, and combined private and wrap-around Medicaid. RESULTS : Having Medicaid doubled the odds of reporting adequate insurance compared with private insurance alone (P < .0001), and children on Medicaid had the lowest out-of-pocket costs ($150, P < .0001). Children covered by combined private and wrap-around Medicaid had the highest total expenditures ($11 596, P < .05) and the highest expenditures paid by their insurance ($10 638, P < .05). CONCLUSIONS : These findings highlight a mismatch between parent ratings of insurance adequacy, child expenditures, and relative financial burden. Findings generate a number of questions to address within single sources of data. By elaborating the frameworks families use to judge the adequacy of their insurance, future research can develop policy strategies to improve both their satisfaction with their insurance coverage and the service use of children with autism.

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17. Broder-Fingert S, Shui A, Ferrone C, Iannuzzi D, Cheng ER, Giauque A, Connors S, McDougle CJ, Donelan K, Neumeyer A, Kuhlthau K. A Pilot Study of Autism-Specific Care Plans During Hospital Admission. Pediatrics ;2016 (Feb) ;137 Suppl 2:S196-204.

BACKGROUND AND OBJECTIVE : Hospital admissions can be difficult for patients with autism spectrum disorder (ASD). We created an autism-specific care plan (ACP) to help improve the hospital experience for patients with ASD, and we tested feasibility and acceptability and compared the experience of care for children with and without an ACP. METHODS : We performed a nonrandomized, retrospective chart review of all patients with ASD and a hospital admission from January 2013 to December 2013 (n = 142) to determine feasibility of the intervention. We then mailed surveys to all 142 families to measure experience with the ACP and to compare experience of care in those who did and did not have an ACP. Using multivariable linear regression we assessed the association of experience of care with ACP use while adjusting for covariates. RESULTS : The ACP was well tolerated by parents and used frequently by staff. Compared with parents who did not use the ACP, parents who used the ACP reported a better experience relating to their general hospital experience (B = 1.48, P < .001) and staff attention to their child’s ASD-specific needs (B = 3.07, P < .001). CONCLUSIONS : According to this pilot study, care plans are feasible and hold promise to improve the experience of care for children with ASD and their families in the hospital setting.

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18. Nicholas DB, Zwaigenbaum L, Muskat B, Craig WR, Newton AS, Cohen-Silver J, Sharon RF, Greenblatt A, Kilmer C. Toward Practice Advancement in Emergency Care for Children With Autism Spectrum Disorder. Pediatrics ;2016 (Feb) ;137 Suppl 2:S205-211.

BACKGROUND AND OBJECTIVE : There is increasing recognition that children with autism spectrum disorder (ASD) experience challenges in busy clinical environments such as the emergency department (ED). ASD may heighten adverse responses to sensory input or transitions, which can impose greater difficulty for a child to cope with situational demands. These problems can be amplified in the ED because of its busy and unpredictable nature, wait times, and bodily care. There is little literature documenting ED-based needs of children with ASD to inform clinical guidelines. The objective was to identify stakeholder perspectives in determining clinical priorities and recommendations to guide ED service delivery for children with ASD. METHODS : After qualitative interviews with children, parents, and health care providers conducted in a previous phase of this study, focus groups were convened with parents of children with ASD, ED clinicians, and ED administrators (total n = 60). Qualitative data were analyzed based on an interpretive description approach. RESULTS : Participants identified the ED and its delivery of care as insufficient to meet the unique needs of children with ASD. The following clinical priorities were identified : ASD-focused preparedness for ED procedures and processes, wait time management, proactive strategies for sedation and restraint, child-focused support, health care provider capacity building, post-ED follow-up resources, and transition planning to adult care. Heightened child- and family-centered care were strongly recommended.

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