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Risk of Autoimmune Disease in Research-Identified Cases of Autism Spectrum Disorder: A Longitudinal, Population-Based Birth Cohort Study. 研究发现的自闭症谱系障碍病例患自身免疫性疾病的风险:基于人群的出生队列纵向研究》。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2024-01-01 DOI: 10.1097/DBP.0000000000001232
Veronica R Villarreal, Maja Z Katusic, Scott M Myers, Amy L Weaver, James J Nocton, Robert G Voigt

Objective: Determine the risk of autoimmune disease in research-identified cases of autism spectrum disorder (ASD) compared with referents using a longitudinal, population-based birth cohort.

Methods: ASD incident cases were identified from a population-based birth cohort of 31,220 individuals. Inclusive ASD definition based on DSM-IV-TR autistic disorder, Asperger syndrome, and pervasive developmental disorder, not otherwise specified, was used to determine ASD cases. For each ASD case, 2 age- and sex-matched referents without ASD were identified. Diagnosis codes assigned between birth and December 2017 were electronically obtained. Individuals were classified as having an autoimmune disorder if they had at least 2 diagnosis codes more than 30 days apart. Cox proportional hazards models were fit to estimate the hazard ratio (HR) between ASD status and autoimmune disorder.

Results: Of 1014 ASD cases, 747 (73.7%) were male. Fifty ASD cases and 59 of the 1:2 matched referents were diagnosed with first autoimmune disorder at the median age of 14 and 17.1 years, respectively. ASD cases had increased risk of autoimmune disease compared with matched referents (HR 1.74; 95% confidence interval [CI], 1.21-2.52). The increased risk was statistically significant among male patients (HR 2.01; 95% CI, 1.26-3.21) but not among the smaller number of female subjects (HR 1.38; 95% CI, 0.76-2.50).

Conclusion: This study provides evidence from a longitudinal, population-based birth cohort for co-occurrence of ASD and autoimmune disorders. Thus, children with ASD should be monitored for symptoms of autoimmune disease and appropriate workup initiated.

目标:利用纵向人群出生队列,确定研究发现的自闭症谱系障碍(ASD)病例与参照者相比患自身免疫性疾病的风险:通过纵向人群出生队列,确定研究发现的自闭症谱系障碍(ASD)病例与参照者相比患自身免疫性疾病的风险:方法:从31,220人的人群出生队列中识别自闭症谱系障碍事件病例。在确定 ASD 病例时,采用了基于 DSM-IV-TR 自闭症、阿斯伯格综合症和广泛性发育障碍(未另作指示)的包容性 ASD 定义。对于每个 ASD 病例,均确定了 2 名年龄和性别匹配的无 ASD 的参照者。通过电子方式获取出生至 2017 年 12 月期间的诊断代码。如果至少有 2 个诊断代码相隔超过 30 天,则被归类为患有自身免疫性疾病。通过拟合Cox比例危险模型来估算ASD状态与自身免疫性疾病之间的危险比(HR):在1014例ASD病例中,747例(73.7%)为男性。50名ASD病例和59名1:2匹配的参照者分别在14岁和17.1岁的中位年龄首次被诊断出患有自身免疫性疾病。与匹配参照者相比,ASD 病例患自身免疫性疾病的风险更高(HR 1.74;95% 置信区间 [CI],1.21-2.52)。男性患者的风险增加具有统计学意义(HR 2.01;95% CI,1.26-3.21),但在人数较少的女性受试者中,风险增加不具有统计学意义(HR 1.38;95% CI,0.76-2.50):这项研究从一个纵向的、基于人群的出生队列中为 ASD 和自身免疫性疾病的共同发生提供了证据。因此,应监测患有 ASD 的儿童是否出现自身免疫性疾病的症状,并进行适当的检查。
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引用次数: 0
Stress and Infant Media Exposure During COVID-19: A Study Among Latino Families. COVID-19 期间的压力与婴儿媒体接触:拉丁裔家庭研究
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2024-01-01 Epub Date: 2023-12-21 DOI: 10.1097/DBP.0000000000001231
Sarah Zanzoul, Pamela Ohman Strickland, Alan L Mendelsohn, Keanaan Malke, Alicja Bator, Jennifer Hemler, Manuel E Jimenez

Objective: The COVID-19 pandemic disproportionately harmed Latino families; however, its effects on their stress and media routines remain understudied. We examined economic and parenting stress patterns during the COVID-19 pandemic and estimated associations between these forms of stress and nonadherence to American Academy of Pediatrics (AAP) infant media exposure recommendations among Latino families. We also explored how nonadherence with AAP recommendations varied with COVID-19 cases.

Methods: We analyzed baseline data from an ongoing clinical trial recruiting low-income Latino parent-infant dyads. Nonadherence with AAP media exposure recommendations (ScreenQ) and economic and parent stress were measured using parent reports. Additional variables included epidemiological data on COVID-19 cases. Linear models examined associations between the pandemic and both stress variables as well as between stress and ScreenQ. Using locally weighted scatterplot smoothing curve fitting, the rise and fall of NJ COVID-19 cases were overlayed with ScreenQ scores over time to visualize and explore trends.

Results: All parents identified as Latino (62.6% unemployed, 91.5% limited English proficiency). Mean infant age was 8.2 months. Parent stress increased over time during the COVID-19 pandemic (r = 0.13, p = 0.0369). After covariate adjustment, economic and parent stress were associated with increased nonadherence with AAP recommendations (standardized beta = 0.16, 95% confidence interval [CI], 0.03-0.29; standardized beta = 0.18, 95% CI, 0.04-0.31, respectively). Nonadherence to media exposure recommendations seemed to track with rises in the number of COVID-19 cases with a lag of 7 days.

Conclusion: Parent and economic stress were associated with nonadherence to infant media exposure recommendations among Latino families. These findings highlight the need for practitioners to support families from under-resourced communities and to promote healthy media routines.

目的:COVID-19 大流行对拉丁裔家庭造成了极大的伤害;然而,大流行对这些家庭的压力和媒体常规的影响仍未得到充分研究。我们研究了 COVID-19 大流行期间的经济和养育压力模式,并估算了这些压力形式与拉丁裔家庭不遵守美国儿科学会 (AAP) 婴儿媒体接触建议之间的关联。我们还探讨了不遵守 AAP 建议的情况如何随 COVID-19 病例而变化:我们分析了一项正在进行的临床试验的基线数据,该试验招募了低收入拉丁裔父母-婴儿二人组。我们使用家长报告对不遵守 AAP 媒体接触建议(ScreenQ)以及经济和家长压力进行了测量。其他变量包括 COVID-19 病例的流行病学数据。线性模型检验了大流行与两个压力变量之间以及压力与 ScreenQ 之间的关联。使用局部加权散点图平滑曲线拟合法,将新泽西州 COVID-19 病例的上升和下降与 ScreenQ 分数随时间推移的变化叠加起来,以直观地显示和探索趋势:所有父母均为拉丁裔(62.6% 无业,91.5% 英语水平有限)。婴儿平均年龄为 8.2 个月。在 COVID-19 大流行期间,家长的压力随着时间的推移而增加(r = 0.13,p = 0.0369)。经过协变量调整后,经济压力和家长压力与不遵守 AAP 建议的情况增加有关(标准化贝塔值 = 0.16,95% 置信区间 [CI],分别为 0.03-0.29; 标准化贝塔值 = 0.18,95% 置信区间 [CI],分别为 0.04-0.31 )。不遵守媒体接触建议似乎与COVID-19病例数的上升有关,但滞后7天:结论:父母和经济压力与拉丁裔家庭不遵守婴儿媒体接触建议有关。这些研究结果突出表明,从业人员需要为来自资源不足社区的家庭提供支持,并推广健康的媒体生活方式。
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引用次数: 0
AI, Parenting, and Child Development. 人工智能、养育子女和儿童发展。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2024-01-01 Epub Date: 2024-02-09 DOI: 10.1097/DBP.0000000000001256
Jenny Radesky
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引用次数: 0
Abstracts of Posters and Poster Symposia Accepted for Presentation at the 2023 Annual Meeting of the Society for Developmental and Behavioral Pediatrics. 接受在发育和行为儿科学会 2023 年年会上发表的海报和海报专题讨论会摘要。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2024-01-01 DOI: 10.1097/DBP.0000000000001239
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引用次数: 0
Cross-Sectional Analysis of Caregiver-Reported Expressive Language Profiles and Associated Covariates in Individuals with Down Syndrome. 对唐氏综合症患者的护理人员报告的表达性语言概况及相关变量进行横断面分析。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2024-01-01 Epub Date: 2023-12-20 DOI: 10.1097/DBP.0000000000001236
Arielle Spellun, Elizabeth Harstad, Margaret Hojlo, Anna Milliken, Katherine Pawlowski, Georgios Sideridis, Nicole Baumer

Objective: To describe the distribution of expressive language abilities of individuals with Down syndrome (DS) in a clinical sample and characterize demographic, environmental, and medical factors associated with varying expressive language profiles.

Methods: Cross-sectional analysis was completed on a sample of 345 individuals with DS between the ages of 4 and 22 years who were enrolled into a longitudinal clinical database between March 2018 and August 2021. Expressive language-related items on a standardized caregiver-reported questionnaire assessing domains of functioning in neurodevelopmental disorders were used to conduct latent variable modeling and determine caregiver-reported expressive language (CREL) classes across the sample. Linear regression was used to explore associations between CREL classes and predictor variables.

Results: Latent variable modeling revealed 3 distinct classes of CREL abilities representing higher, middle, and lower CREL. Individuals in the lower CREL class were more likely to be female, to use sign language or visual communication systems, have reduced pronunciation, attend private or residential school, and to be in a substantially separate classroom. Membership was not predicted by complex medical histories or co-occurring neurodevelopmental diagnoses.

Conclusion: Caregiver-reported expressive language abilities in a cohort of individuals with DS were variable, with most of the individuals belonging to higher or middle CREL classes, relative to one another. Additional studies are indicated to understand factors that predict higher expressive language ability and explore how to direct services to individuals who are at risk of more profound language delays.

目的描述临床样本中唐氏综合征(DS)患者语言表达能力的分布情况,并描述与不同语言表达能力相关的人口、环境和医疗因素:方法:对2018年3月至2021年8月期间纳入纵向临床数据库的345名年龄在4岁至22岁之间的唐氏综合征患者样本进行横断面分析。在评估神经发育障碍功能领域的标准化照顾者报告问卷中,与表达性语言相关的项目被用来进行潜变量建模,并确定样本中照顾者报告的表达性语言(CREL)等级。线性回归用于探讨 CREL 类别与预测变量之间的关联:潜变量建模显示了 CREL 能力的三个不同等级,分别代表较高、中等和较低 CREL。CREL 较低等级中的个体更有可能是女性、使用手语或视觉交流系统、发音较弱、就读于私立或寄宿学校,以及在一个非常独立的教室中。复杂的病史或并发的神经发育诊断并不能预测其成员资格:结论:在一组 DS 患者中,护理人员报告的语言表达能力参差不齐,相对于其他患者而言,大多数患者属于较高或中等 CREL 等级。需要进行更多的研究,以了解预测较高语言表达能力的因素,并探索如何为有可能出现更严重语言障碍的患者提供服务。
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引用次数: 0
A Note From the Editor-in-Chief. 主编的话
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2024-01-01 DOI: 10.1097/DBP.0000000000001240
Lee M Pachter
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引用次数: 0
Assessing Parental Perceptions of Meaningful Outcomes for Children with Autism Spectrum Disorder. 评估父母对自闭症谱系障碍儿童有意义结果的认知。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2023-12-01 Epub Date: 2023-10-11 DOI: 10.1097/DBP.0000000000001220
Meredith Close, Gabriella Aberbach, Eugenia Chan, Elizabeth Harstad

Background: Outcomes of children diagnosed with autism spectrum disorder (ASD) generally focus on cognition, language, behavioral, and adaptive functioning, yet it is unknown whether this reflects patient and caregiver priorities.

Objective: Identify parental perceptions of ASD outcomes and identify whether health care providers are currently addressing these concerns.

Methods: Participant were 60 parents of school-aged children previously diagnosed with ASD participating in a larger autism outcomes study. Parents answered the open-ended question, "What aspect of your child's functioning matters most for your child at this time?" They also ranked a list of outcome categories (thinking and reasoning skills, daily living skills, etc). Parents answered a second open-ended question, "What should healthcare providers be asking about how your child is doing, that they may not be currently asking?" Open-ended independent coding and thematic analysis were used to identify themes for the open-ended questions.

Results: The most common themes identified with "what aspect of your child's functioning matters most" were "Social," "Communication," "Emotional," and "Behavior." These were similar to the results of a ranking question in which parents ranked "Communicating with and understanding others," "Social skills," and "Behavior" as most important. "Emotional" was a unique theme, although there is potential overlap between this and the theme of "Behavior." The most common theme identified with the question about what health care providers should be asking was "Social," followed by "Nothing."

Conclusion: This study demonstrates that parental concerns largely match previous outcome categories, with the exception of a theme identified as "Emotional" which may overlap with "Behavior."

背景:被诊断为自闭症谱系障碍(ASD)的儿童的结果通常集中在认知、语言、行为和适应功能上,但尚不清楚这是否反映了患者和护理者的优先事项。目的:确定父母对ASD结果的看法,并确定医疗保健提供者目前是否正在解决这些问题。方法:参与者是60名先前被诊断为自闭症谱系障碍的学龄儿童的父母,他们参与了一项更大规模的自闭症结果研究。家长们回答了一个开放式问题,“在这个时候,孩子的功能的哪个方面对孩子最重要?”他们还列出了一系列结果类别(思维和推理技能、日常生活技能等)。家长们回答了第二个开放式问题“医疗保健提供者应该问你的孩子过得怎么样,而他们目前可能没有问?”使用开放式独立编码和主题分析来确定开放式问题的主题。结果:与“孩子功能的哪个方面最重要”相关的最常见主题是“社交”、“沟通”、“情感”和“行为”。这与父母将“与他人沟通和理解”、“社交技能”和“举止”列为最重要的排名问题的结果相似。“情绪化”是一个独特的主题,尽管这与“行为”的主题之间可能存在重叠。关于医疗保健提供者应该问什么的问题,最常见的主题是“社交”,其次是“什么都没有”。结论:这项研究表明,父母的担忧在很大程度上与以前的结果类别相匹配,除了一个被认定为“情感”的主题,它可能与“行为”重叠
{"title":"Assessing Parental Perceptions of Meaningful Outcomes for Children with Autism Spectrum Disorder.","authors":"Meredith Close, Gabriella Aberbach, Eugenia Chan, Elizabeth Harstad","doi":"10.1097/DBP.0000000000001220","DOIUrl":"10.1097/DBP.0000000000001220","url":null,"abstract":"<p><strong>Background: </strong>Outcomes of children diagnosed with autism spectrum disorder (ASD) generally focus on cognition, language, behavioral, and adaptive functioning, yet it is unknown whether this reflects patient and caregiver priorities.</p><p><strong>Objective: </strong>Identify parental perceptions of ASD outcomes and identify whether health care providers are currently addressing these concerns.</p><p><strong>Methods: </strong>Participant were 60 parents of school-aged children previously diagnosed with ASD participating in a larger autism outcomes study. Parents answered the open-ended question, \"What aspect of your child's functioning matters most for your child at this time?\" They also ranked a list of outcome categories (thinking and reasoning skills, daily living skills, etc). Parents answered a second open-ended question, \"What should healthcare providers be asking about how your child is doing, that they may not be currently asking?\" Open-ended independent coding and thematic analysis were used to identify themes for the open-ended questions.</p><p><strong>Results: </strong>The most common themes identified with \"what aspect of your child's functioning matters most\" were \"Social,\" \"Communication,\" \"Emotional,\" and \"Behavior.\" These were similar to the results of a ranking question in which parents ranked \"Communicating with and understanding others,\" \"Social skills,\" and \"Behavior\" as most important. \"Emotional\" was a unique theme, although there is potential overlap between this and the theme of \"Behavior.\" The most common theme identified with the question about what health care providers should be asking was \"Social,\" followed by \"Nothing.\"</p><p><strong>Conclusion: </strong>This study demonstrates that parental concerns largely match previous outcome categories, with the exception of a theme identified as \"Emotional\" which may overlap with \"Behavior.\"</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41219097","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A Randomized Clinical Trial Targeting Daily Living Skills in Autistic Adolescents Without an Intellectual Disability Before the Transition to Adulthood. 一项针对成年前无智力残疾的自闭症青少年日常生活技能的随机临床试验。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2023-12-01 Epub Date: 2023-10-19 DOI: 10.1097/DBP.0000000000001222
Amie Duncan, Jareen Meinzen-Derr, Lisa Ruble, Carrie Fassler, Lori J Stark

Objectives: In the United States, more than 75,000 autistic adolescents graduate from high school each year, and many lack the skills to successfully transition to college, work, and independent living. Daily living skills (DLS) in autistic adolescents without an intellectual disability (ID) fall 6 to 8 years behind peers. Better DLS are linked to more positive adult outcomes for autistic individuals. Surviving and Thriving in the Real World (STRW) is the only known evidence-based intervention that targets age-appropriate DLS in autistic adolescents without ID. The study objective was to evaluate STRW's efficacy compared with an active comparator (Program for the Evaluation and Enrichment of Relational Skills [PEERS]).

Method: Autistic adolescents in their last 2 years of high school were randomized to STRW or PEERS. Outcome measures were the Vineland Adaptive Behavior Scales, Third Edition (VABS-3), DLS domain and subdomains (Personal, Domestic, Community), and DLS Goal Attainment Scaling (DLS-GAS) areas (Morning Routine, Cooking, Laundry, Money).

Results: Adolescents were randomly assigned to STRW (n = 34) or PEERS (n = 30). Owing to COVID-19, 28.1% received in-person intervention and 71.9% received telehealth intervention. STRW youth made significant gains on the VABS-3 DLS domain ( p = 0.01) and Domestic subdomain ( p = 0.005) and DLS-GAS Total, Laundry, and Money areas (all p 's < 0.05) compared with PEERS.

Conclusion: STRW shows promise for acquiring age-appropriate DLS compared with PEERS. Adolescents in STRW progressed toward achieving DLS in the average range and closing the gap between chronological age and DLS. By improving DLS, STRW may facilitate more successful adult outcomes.

目标:在美国,每年有超过75000名自闭症青少年从高中毕业,许多人缺乏成功过渡到大学、工作和独立生活的技能。无智力残疾的自闭症青少年的日常生活技能(DLS)落后同龄人6至8年。更好的DLS与自闭症患者更积极的成人结果有关。在现实世界中生存和繁荣(STRW)是唯一已知的针对无ID自闭症青少年适龄DLS的循证干预措施。本研究的目的是评估STRW与主动对照(关系技能评估和强化计划[PEERS])的疗效。方法:将高中最后2年的自闭症青少年随机分为STRW或PEERS。结果测量是Vineland适应性行为量表,第三版(VABS-3),DLS域和子域(个人、家庭、社区),以及DLS目标实现量表(DLS-GAS)区域(晨练、烹饪、洗衣、金钱)。结果:青少年被随机分为STRW(n=34)或PEERS(n=30)。由于新冠肺炎,28.1%接受了住院干预,71.9%接受了远程医疗干预。与PEERS相比,STRW青年在VABS-3 DLS结构域(p=0.01)和家庭子域(p=0.005)以及DLS-GAS总面积、洗衣面积和金钱面积(均p<0.05)方面取得了显著进步。结论:与PEERS相比较,STRW有望获得适合年龄的DLS。STRW的青少年在平均范围内实现DLS,并缩小了按年龄顺序排列的年龄和DLS之间的差距。通过改善DLS,STRW可以促进更成功的成人结果。
{"title":"A Randomized Clinical Trial Targeting Daily Living Skills in Autistic Adolescents Without an Intellectual Disability Before the Transition to Adulthood.","authors":"Amie Duncan, Jareen Meinzen-Derr, Lisa Ruble, Carrie Fassler, Lori J Stark","doi":"10.1097/DBP.0000000000001222","DOIUrl":"10.1097/DBP.0000000000001222","url":null,"abstract":"<p><strong>Objectives: </strong>In the United States, more than 75,000 autistic adolescents graduate from high school each year, and many lack the skills to successfully transition to college, work, and independent living. Daily living skills (DLS) in autistic adolescents without an intellectual disability (ID) fall 6 to 8 years behind peers. Better DLS are linked to more positive adult outcomes for autistic individuals. Surviving and Thriving in the Real World (STRW) is the only known evidence-based intervention that targets age-appropriate DLS in autistic adolescents without ID. The study objective was to evaluate STRW's efficacy compared with an active comparator (Program for the Evaluation and Enrichment of Relational Skills [PEERS]).</p><p><strong>Method: </strong>Autistic adolescents in their last 2 years of high school were randomized to STRW or PEERS. Outcome measures were the Vineland Adaptive Behavior Scales, Third Edition (VABS-3), DLS domain and subdomains (Personal, Domestic, Community), and DLS Goal Attainment Scaling (DLS-GAS) areas (Morning Routine, Cooking, Laundry, Money).</p><p><strong>Results: </strong>Adolescents were randomly assigned to STRW (n = 34) or PEERS (n = 30). Owing to COVID-19, 28.1% received in-person intervention and 71.9% received telehealth intervention. STRW youth made significant gains on the VABS-3 DLS domain ( p = 0.01) and Domestic subdomain ( p = 0.005) and DLS-GAS Total, Laundry, and Money areas (all p 's < 0.05) compared with PEERS.</p><p><strong>Conclusion: </strong>STRW shows promise for acquiring age-appropriate DLS compared with PEERS. Adolescents in STRW progressed toward achieving DLS in the average range and closing the gap between chronological age and DLS. By improving DLS, STRW may facilitate more successful adult outcomes.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10843140/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49684421","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Caregiver Perspectives on the Health Care System for Tic Disorders: Utilization and Barriers. Tic疾病医疗保健系统的护理人员视角:利用和障碍。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2023-12-01 Epub Date: 2023-10-11 DOI: 10.1097/DBP.0000000000001221
Brianna C M Wellen, Kirsten R Bootes, Emily I Braley, Christine A Conelea, Douglas W Woods, Michael B Himle

Objective: This study aimed to understand health care experiences among a sample of caregivers of children with TDs to inform future directions for improving the health care system.

Methods: We conducted a survey of caregivers of youth with TDs and used descriptive statistics and quantitative analyses to characterize the health care utilization practices of the sample.

Results: The majority (70%) of families first consulted their pediatrician/primary care provider, and caregivers reported receiving care in line with current best practice guidelines. However, caregivers in the current sample perceived a lack of knowledgeability on the part of their first providers, which significantly predicted more providers seen and also reported difficulty finding specialty providers (63% of the sample reported difficulty finding a treatment provider who understood tics).

Conclusion: Results suggest that improving caregiver satisfaction with early health care experiences for their child's TD may help to relieve the burden on families and the health care system more broadly, along with continued efforts to increase the number of specialty providers available.

目的:本研究旨在了解TDs儿童护理人员的医疗保健经验,为改善医疗保健系统的未来方向提供信息。方法:我们对患有TDs的青年护理人员进行了调查,并使用描述性统计和定量分析来描述样本的医疗保健利用实践。结果:大多数(70%)的家庭首先咨询了儿科医生/初级保健提供者,护理人员报告说,他们接受了符合当前最佳实践指南的护理。然而,当前样本中的护理人员认为他们的第一提供者缺乏知识能力,这显著预测了更多的提供者,也报告了难以找到专业提供者(63%的样本报告难以找到理解抽搐的治疗提供者)。结论:研究结果表明,提高照顾者对孩子TD早期医疗体验的满意度可能有助于减轻家庭和医疗系统的负担同时继续努力增加专业供应商的数量。
{"title":"Caregiver Perspectives on the Health Care System for Tic Disorders: Utilization and Barriers.","authors":"Brianna C M Wellen, Kirsten R Bootes, Emily I Braley, Christine A Conelea, Douglas W Woods, Michael B Himle","doi":"10.1097/DBP.0000000000001221","DOIUrl":"10.1097/DBP.0000000000001221","url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to understand health care experiences among a sample of caregivers of children with TDs to inform future directions for improving the health care system.</p><p><strong>Methods: </strong>We conducted a survey of caregivers of youth with TDs and used descriptive statistics and quantitative analyses to characterize the health care utilization practices of the sample.</p><p><strong>Results: </strong>The majority (70%) of families first consulted their pediatrician/primary care provider, and caregivers reported receiving care in line with current best practice guidelines. However, caregivers in the current sample perceived a lack of knowledgeability on the part of their first providers, which significantly predicted more providers seen and also reported difficulty finding specialty providers (63% of the sample reported difficulty finding a treatment provider who understood tics).</p><p><strong>Conclusion: </strong>Results suggest that improving caregiver satisfaction with early health care experiences for their child's TD may help to relieve the burden on families and the health care system more broadly, along with continued efforts to increase the number of specialty providers available.</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41219098","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Complex Autism Spectrum Disorder: Structural Determinants of Health and Their Impact on the Diagnosis. 复杂自闭症谱系障碍:健康的结构决定因素及其对诊断的影响。
IF 2.4 3区 医学 Q2 Medicine Pub Date : 2023-12-01 Epub Date: 2023-11-03 DOI: 10.1097/DBP.0000000000001219
Sarah Canale, Britany Weissman, Carmen Rosa Noroña, Ivys Fernández-Pastrana, Soukaina Adolphe, Audrey Christiansen, Arathi Reddy, Marilyn Augustyn

Case: Emmanuel is a 6.5-year-old boy who was referred to your evaluation clinic for concerns about his social skills and communication. He arrived in the United States (US) 1 year ago after an immigration trajectory that began in Haiti when he was aged 3 years; passed through Mexico, where the family was in various shelters for over a year; and concluded 2 years later, with the family eventually settling in an urban center in the northeastern United States. While in Mexico, the family was living in a camp without access to utilities. They faced significant food insecurity and experienced multiple relocations because of fears of physical safety.Emmanuel's native language is Haitian Creole, but he learned some Spanish during the year spent in Mexico. Now in the United States, he has been enrolled for the last year in the public school system, where he participates in an inclusion English as a Second Language kindergarten classroom. The school has expressed concern about several behaviors including bolting from the classroom, shouting out inappropriately, and taking food from other children's lunches.On initial meeting with a DBP clinician, Emmanuel's parents report that they do not have any concerns at home about his behavior, although they do feel that he "talks less than his 3 older siblings." The 6-person household is currently living in one-room, temporary housing; they deny current food insecurity.As part of his evaluation, you perform an Autism Diagnostic Observation Scale-2 Module 3 in English with the support of an in-person Haitian Creole interpreter. Emmanuel does not make eye contact throughout the evaluation but does respond to your questions in a combination of English and Haitian Creole. He can define the concept of a "friend" but cannot name one of his own friends. He is not able to engage in the demonstration task with words but does use gestures to indicate the actions involved in brushing teeth. His free play is perseverative and centers around fighting between the action figures.Brief cognitive testing reveals normal nonverbal intelligence. He is unable to decode in English on achievement testing. The family completes a Social Responsiveness Scale in English, which shows normal scores except in the repetitive behaviors section, where the family endorses pacing and some restricted interests, particularly around video games.He is not yet on an Individualized Education Plan, and there have been no formal assessments from the school except for language dominance testing indicating that his dominant language is Haitian Creole, with emerging English skills. What specific topics are unique to the evaluation for autism in an English language learner with a significant trauma history? What factors should be considered when assessing a child with a history of immigration trauma?

案例:Emmanuel是一名6.5岁的男孩,由于担心他的社交技能和沟通能力,他被转介到您的评估诊所。一年前,他在3岁时从海地开始移民,之后抵达美国;途经墨西哥,一家人在那里的各个避难所呆了一年多;两年后,他们一家最终定居在美国东北部的一个城市中心。在墨西哥期间,这家人住在一个没有公用设施的营地里。由于担心人身安全,他们面临严重的粮食不安全问题,并经历了多次搬迁。Emmanuel的母语是海地克里奥尔语,但在墨西哥度过的一年里,他学会了一些西班牙语。现在在美国,他已经在公立学校系统注册了最后一年,在那里他参加了一个将英语作为第二语言的幼儿园课堂。学校对一些行为表示担忧,包括逃离教室、不恰当地大喊大叫以及从其他孩子的午餐中拿走食物。在与DBP临床医生的初次会面中,Emmanuel的父母报告说,他们在家里对他的行为没有任何担忧,尽管他们确实觉得Emmanuel“比他的3个哥哥姐姐说话少”。这个6人家庭目前住在一个临时住房里;他们否认当前的粮食不安全。作为评估的一部分,你在海地克里奥尔语翻译的支持下用英语进行了自闭症诊断观察量表-2模块3。Emmanuel在整个评估过程中不会进行眼神交流,但会用英语和海地克里奥尔语组合回答您的问题。他可以定义“朋友”的概念,但不能说出自己朋友的名字。他不能用语言进行演示,但会用手势来表示刷牙时的动作。他的自由发挥是坚持不懈的,围绕着动作人物之间的战斗。简短的认知测试揭示了正常的非语言智力。在成绩测试中,他不会用英语解码。这家人用英语完成了社交反应量表,该量表显示了正常的分数,但重复行为部分除外,在重复行为部分,家人支持节奏和一些受限制的兴趣,尤其是在电子游戏方面。他还没有参加个性化教育计划,除了语言优势测试表明他的主要语言是海地克里奥尔语,并具有新兴的英语技能外,学校也没有进行正式评估。对于有严重创伤史的英语学习者来说,自闭症的评估有哪些独特的主题?评估有移民创伤史的儿童时应考虑哪些因素?
{"title":"Complex Autism Spectrum Disorder: Structural Determinants of Health and Their Impact on the Diagnosis.","authors":"Sarah Canale, Britany Weissman, Carmen Rosa Noroña, Ivys Fernández-Pastrana, Soukaina Adolphe, Audrey Christiansen, Arathi Reddy, Marilyn Augustyn","doi":"10.1097/DBP.0000000000001219","DOIUrl":"10.1097/DBP.0000000000001219","url":null,"abstract":"<p><strong>Case: </strong>Emmanuel is a 6.5-year-old boy who was referred to your evaluation clinic for concerns about his social skills and communication. He arrived in the United States (US) 1 year ago after an immigration trajectory that began in Haiti when he was aged 3 years; passed through Mexico, where the family was in various shelters for over a year; and concluded 2 years later, with the family eventually settling in an urban center in the northeastern United States. While in Mexico, the family was living in a camp without access to utilities. They faced significant food insecurity and experienced multiple relocations because of fears of physical safety.Emmanuel's native language is Haitian Creole, but he learned some Spanish during the year spent in Mexico. Now in the United States, he has been enrolled for the last year in the public school system, where he participates in an inclusion English as a Second Language kindergarten classroom. The school has expressed concern about several behaviors including bolting from the classroom, shouting out inappropriately, and taking food from other children's lunches.On initial meeting with a DBP clinician, Emmanuel's parents report that they do not have any concerns at home about his behavior, although they do feel that he \"talks less than his 3 older siblings.\" The 6-person household is currently living in one-room, temporary housing; they deny current food insecurity.As part of his evaluation, you perform an Autism Diagnostic Observation Scale-2 Module 3 in English with the support of an in-person Haitian Creole interpreter. Emmanuel does not make eye contact throughout the evaluation but does respond to your questions in a combination of English and Haitian Creole. He can define the concept of a \"friend\" but cannot name one of his own friends. He is not able to engage in the demonstration task with words but does use gestures to indicate the actions involved in brushing teeth. His free play is perseverative and centers around fighting between the action figures.Brief cognitive testing reveals normal nonverbal intelligence. He is unable to decode in English on achievement testing. The family completes a Social Responsiveness Scale in English, which shows normal scores except in the repetitive behaviors section, where the family endorses pacing and some restricted interests, particularly around video games.He is not yet on an Individualized Education Plan, and there have been no formal assessments from the school except for language dominance testing indicating that his dominant language is Haitian Creole, with emerging English skills. What specific topics are unique to the evaluation for autism in an English language learner with a significant trauma history? What factors should be considered when assessing a child with a history of immigration trauma?</p>","PeriodicalId":50215,"journal":{"name":"Journal of Developmental and Behavioral Pediatrics","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41219099","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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Journal of Developmental and Behavioral Pediatrics
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