家长对出生后第一年自闭症预测测试的态度。

IF 4.1 2区 医学 Q1 CLINICAL NEUROLOGY Journal of Neurodevelopmental Disorders Pub Date : 2024-08-17 DOI:10.1186/s11689-024-09561-w
Aurora M Washington, Amanda H Mercer, Catherine A Burrows, Stephen R Dager, Jed T Elison, Annette M Estes, Rebecca Grzadzinski, Chimei Lee, Joseph Piven, John R Pruett, Mark D Shen, Benjamin Wilfond, Jason Wolff, Lonnie Zwaigenbaum, Katherine E MacDuffie
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引用次数: 0

摘要

背景:新兴的生物标记技术(如核磁共振成像、脑电图、数字表型、眼球追踪)有可能将自闭症的识别时间提前到婴儿出生后的第一年。我们调查了家长对通过婴儿期基于生物标志物的测试预测日后自闭症诊断的预期效用和影响的看法:方法:我们对婴儿家长进行了访谈,以了解他们对使用新兴生物标记技术进行早期(6-12 个月)自闭症预测的接受程度和观点。其中一组家长有养育年长自闭症儿童的经验(30 人),另一组家长之前没有养育自闭症儿童的经验(25 人)。我们采用归纳定性编码方法对家长的回答进行了分析:两组中几乎所有家长都对自闭症预测测试感兴趣,其中一些家长表示,他们只有在担心婴儿发育的情况下才会寻求测试。测试的主要预期优势是能够获得早期干预。家长们还描述了他们对测试结果的预期情绪、得知婴儿可能患上自闭症后可能采取的行动、对预测儿童未来支持需求的态度以及预测不准确的潜在影响:在定性访谈中,有自闭症经历和没有自闭症经历的婴儿的父母分享了他们对婴儿出生后第一年自闭症预测测试的预期动机和担忧。据报告,进行测试的主要动机是为了有更多的时间做好准备并及早干预,但这可能会受到家庭资源和服务可用性的限制。本文讨论了结果的道德交流、公平的早期干预和未来研究的意义。
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Parent attitudes towards predictive testing for autism in the first year of life.

Background: Emerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy.

Methods: Parents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods.

Results: Almost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant's development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child's future support needs, and the potential impacts of inaccurate prediction.

Conclusion: In qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing-to have more time to prepare and intervene early-could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed.

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来源期刊
CiteScore
7.60
自引率
4.10%
发文量
58
审稿时长
>12 weeks
期刊介绍: Journal of Neurodevelopmental Disorders is an open access journal that integrates current, cutting-edge research across a number of disciplines, including neurobiology, genetics, cognitive neuroscience, psychiatry and psychology. The journal’s primary focus is on the pathogenesis of neurodevelopmental disorders including autism, fragile X syndrome, tuberous sclerosis, Turner Syndrome, 22q Deletion Syndrome, Prader-Willi and Angelman Syndrome, Williams syndrome, lysosomal storage diseases, dyslexia, specific language impairment and fetal alcohol syndrome. With the discovery of specific genes underlying neurodevelopmental syndromes, the emergence of powerful tools for studying neural circuitry, and the development of new approaches for exploring molecular mechanisms, interdisciplinary research on the pathogenesis of neurodevelopmental disorders is now increasingly common. Journal of Neurodevelopmental Disorders provides a unique venue for researchers interested in comparing and contrasting mechanisms and characteristics related to the pathogenesis of the full range of neurodevelopmental disorders, sharpening our understanding of the etiology and relevant phenotypes of each condition.
期刊最新文献
Atypical audio-visual neural synchrony and speech processing in early autism. The striatal matrix compartment is expanded in autism spectrum disorder. An exploratory fetal MRI study examining the impact of 22q11.2 microdeletion syndrome on early brain growth. Validation of the Food Safe Zone questionnaire for families of individuals with Prader-Willi syndrome. Regional hippocampal thinning and gyrification abnormalities and associated cognition in children with prenatal alcohol exposure.
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