Pediatrics : Improving Health and Health Care for Children and Youth With Autism Spectrum Disorder (Avril 2020)

jeudi 9 avril 2020

1. Anagnostou E, Levy SE, Mazurek MO, Veenstra-VanderWeele J. Editors’ Note and Prologue. Pediatrics. 2020 ; 145(Supplement 1) : S1.

Abbreviations:AIR-P — Autism Intervention Research Network on Physical HealthASD — autism spectrum disorderATN — Autism Treatment NetworkED — emergency departmentHRSA — Health Resources and Services AdministrationMCHB — Maternal and Child Health BureauChildren with autism spectrum disorder (ASD) experience significant developmental challenges and complex co-occurring medical and psychiatric conditions,1–3 and they are at risk for considerable unmet health care needs.4–8 As the reported prevalence of ASD continues to rise,9,10 the need for a health care system that is fully equipped to meet the needs of this population is increasingly important. We are pleased to introduce the third supplement to Pediatrics led by the Autism Intervention Research Network on Physical Health (AIR-P) with support from the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) through the Autism Collaboration, Accountability, Research, Education, and Support Act.11 The 2 previous supplements led by the AIR-P were published in 2012 and 2016, and the work presented in this volume represents significant advances in improving the health and well-being of children with ASD through innovations in research and practice.The articles in this supplement describe infrastructure investments, multiinstitutional collaborations, new models of practice, and original research focused on improving care in multiple locations and contexts for children with ASD and their families. The work reflected in this supplement would not have been possible without considerable federal and private foundation funding. This infrastructure support enabled researchers, clinicians, family members, and key stakeholders to engage in dynamic partnerships to share knowledge and improve systems of care.The supplement begins with an overview of the reach of the HRSA-MCHB Autism and Other Developmental Disabilities Program and its alignment with federal priorities for ASD research.11 The AIR-P represents 1 of 5 autism research networks funded by HRSA and MCHB. In 2008, the … Address correspondence to Evdokia Anagnostou, MD, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, ON M4G1R8, Canada. Email : eanagnostouathollandbloorview.ca

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2. DiBari JN, Azuine RE, Linares DE, Rocha I, Park HY, Raskin Ramos L, Kogan MD, Kavanagh L. Maternal and Child Health Bureau’s Autism Research Program. Pediatrics. 2020 ; 145(Suppl 1) : S5-s12.

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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3. Coury DL, Murray DS, Fedele A, Hess T, Kelly A, Kuhlthau KA. The Autism Treatment Network : Bringing Best Practices to All Children With Autism. Pediatrics. 2020 ; 145(Suppl 1) : S13-s9.

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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4. Anixt JS, Murray DS, Coury DL, Kuhlthau KA, Eskra D, Seide J, Kelly A, Hess A, Lipkin PH, Law JK, Fedele A, Lannon C. Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network. Pediatrics. 2020 ; 145(Suppl 1) : S20-s9.

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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5. Eidson T, Hess A, Hess T, Kelly A. Family Engagement in the Autism Treatment and Learning Health Networks. Pediatrics. 2020 ; 145(Suppl 1) : S30-s4.

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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6. Smith KA, Gehricke JG, Iadarola S, Wolfe A, Kuhlthau KA. Disparities in Service Use Among Children With Autism : A Systematic Review. Pediatrics. 2020 ; 145(Suppl 1) : S35-s46.

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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7. Levy SE, Wolfe A, Coury D, Duby J, Farmer J, Schor E, Van Cleave J, Warren Z. Screening Tools for Autism Spectrum Disorder in Primary Care : A Systematic Evidence Review. Pediatrics. 2020 ; 145(Suppl 1) : S47-s59.

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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8. Crossman MK, Lindly OJ, Chan J, Eaves M, Kuhlthau KA, Parker RA, Coury DL, Zand DH, Nowinski LA, Smith K, Tomkinson M, Murray DS. Families’ Experiences With Family Navigation Services in the Autism Treatment Network. Pediatrics. 2020 ; 145(Suppl 1) : S60-s71.

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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9. Locke J, Ibanez LV, Posner E, Frederick L, Carpentier P, Stone WL. Parent Perceptions About Communicating With Providers Regarding Early Autism Concerns. Pediatrics. 2020 ; 145(Suppl 1) : S72-s80.

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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10. Weitlauf AS, Broderick N, Stainbrook JA, Taylor JL, Herrington CG, Nicholson AG, Santulli M, Dykens EM, Juarez AP, Warren ZE. Mindfulness-Based Stress Reduction for Parents Implementing Early Intervention for Autism : An RCT. Pediatrics. 2020 ; 145(Suppl 1) : S81-s92.

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 (beta = -1.42, -1.25, -0.92 ; P < 0.001), depressive symptoms, and anxiety symptoms (beta = -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 (beta = -1.91 and -1.38, respectively ; P < 0.01). Groups differed in change in mindfulness during treatment (beta = 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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11. Nicholas DB, Muskat B, Zwaigenbaum L, Greenblatt A, Ratnapalan S, Kilmer C, Craig W, Roberts W, Cohen-Silver J, Newton A, Sharon R. Patient- and Family-Centered Care in the Emergency Department for Children With Autism. Pediatrics. 2020 ; 145(Suppl 1) : S93-s8.

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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12. Ziskind D, Bennett A, Jawad A, Blum N. Therapy and Psychotropic Medication Use in Young Children With Autism Spectrum Disorder. Pediatrics. 2020 ; 145(Suppl 1) : S99-s107.

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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13. Hazen EP, Ravichandran C, Rao Hureau A, O’Rourke J, Madva E, McDougle CJ. Agitation in Patients With Autism Spectrum Disorder Admitted to Inpatient Pediatric Medical Units. Pediatrics. 2020 ; 145(Suppl 1) : S108-s16.

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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14. Capal JK, Macklin EA, Lu F, Barnes G. Factors Associated With Seizure Onset in Children With Autism Spectrum Disorder. Pediatrics. 2020 ; 145(Suppl 1) : S117-s25.

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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15. Curtin C, Hyman SL, Boas DD, Hassink S, Broder-Fingert S, Ptomey LT, Gillette MD, Fleming RK, Must A, Bandini LG. Weight Management in Primary Care for Children With Autism : Expert Recommendations. Pediatrics. 2020 ; 145(Suppl 1) : S126-s39.

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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16. Lindly OJ, Chan J, Levy SE, Parker RA, Kuhlthau KA. Service Use Classes Among School-aged Children From the Autism Treatment Network Registry. Pediatrics. 2020 ; 145(Suppl 1) : S140-s50.

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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