Meredith A Nelson, Rebecca C Shaffer, Lauren M Schmitt, Marika C Coffman, Paul S Horn, Debra L Reisinger, Craig A Erickson
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引用次数: 0
Abstract
Purpose: The construct Quality of Life (QoL) involves a range of factors related to one's well-being. Individuals on the autism spectrum have been previously reported to have lower QoL. The purpose of the present study is to examine QoL in autistic individuals and their families and to evaluate associations between QoL and measures of functioning using the PedsQL 4.0.
Method: Thirty-six autistic youth (ages 9-21 years) and their caregivers completed the PedsQL. Caregivers completed additional measures of their children's adaptive, social, behavioral, and emotional functioning.
Results: Parents and youth generally agreed on the PedsQL, with the exception of the Social Functioning domain, which youth rated higher. The parent rated PedsQL did not correlate with most areas of caregiver-rated functioning; however, there were significant negative correlations between irritability and family functioning.
Conclusion: Limitations of this study included small sample size; broad range of intellectual functioning; lack of sample diversity; and likely recruiting bias for a drug treatment study. Despite limitations, HRQoL is an important feature that should be measured in addition to features of autism or symptoms of co-occurring symptoms.
目的：建构生活品质（Quality of Life, QoL）包含一系列与个人幸福感相关的因素。以前有报道称自闭症谱系的个体生活质量较低。本研究的目的是检查自闭症个体及其家庭的生活质量，并使用PedsQL 4.0评估生活质量与功能测量之间的关系。方法：36名自闭症青少年（9-21岁）及其照顾者完成PedsQL。照顾者完成了他们孩子的适应、社会、行为和情感功能的额外测量。结果：父母和青少年对PedsQL的评价基本一致，但社会功能领域的评价较高。父母对PedsQL的评分与大多数照护者评定的功能没有相关性；然而，易怒与家庭功能之间存在显著的负相关。结论：本研究的局限性包括样本量小；广泛的智力功能；缺乏样本多样性；而且很可能是药物治疗研究的招募偏见。尽管存在局限性，HRQoL是除了自闭症特征或共存症状的症状之外应该测量的重要特征。
期刊介绍：
The Journal of Autism and Developmental Disorders seeks to advance theoretical and applied research as well as examine and evaluate clinical diagnoses and treatments for autism and related disabilities. JADD encourages research submissions on the causes of ASDs and related disorders, including genetic, immunological, and environmental factors; diagnosis and assessment tools (e.g., for early detection as well as behavioral and communications characteristics); and prevention and treatment options. Sample topics include: Social responsiveness in young children with autism Advances in diagnosing and reporting autism Omega-3 fatty acids to treat autism symptoms Parental and child adherence to behavioral and medical treatments for autism Increasing independent task completion by students with autism spectrum disorder Does laughter differ in children with autism? Predicting ASD diagnosis and social impairment in younger siblings of children with autism The effects of psychotropic and nonpsychotropic medication with adolescents and adults with ASD Increasing independence for individuals with ASDs Group interventions to promote social skills in school-aged children with ASDs Standard diagnostic measures for ASDs Substance abuse in adults with autism Differentiating between ADHD and autism symptoms Social competence and social skills training and interventions for children with ASDs Therapeutic horseback riding and social functioning in children with autism Authors and readers of the Journal of Autism and Developmental Disorders include sch olars, researchers, professionals, policy makers, and graduate students from a broad range of cross-disciplines, including developmental, clinical child, and school psychology; pediatrics; psychiatry; education; social work and counseling; speech, communication, and physical therapy; medicine and neuroscience; and public health.
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