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Conceptualisation and development of a quality of life measure for parents of children with autism spectrum disorder.

作者信息

Eapen Valsamma, Crnčec Rudi, Walter Amelia, Tay Kwok Ping

机构信息

Academic Unit of Child Psychiatry, South Western Sydney Local Health District (AUCS), Liverpool Hospital, Mental Health Centre (Level 1: ICAMHS), Locked Bag 7103, Liverpool BC, NSW 1871, Australia ; University of New South Wales, Sydney, NSW 2052, Australia.

University of New South Wales, Sydney, NSW 2052, Australia.

出版信息

Autism Res Treat. 2014;2014:160783. doi: 10.1155/2014/160783. Epub 2014 Mar 20.


DOI:10.1155/2014/160783
PMID:24778873
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3977417/
Abstract

Parents of children with autism spectrum disorder (ASD) tend to experience greater psychological distress than parents of typically developing children or children with other disabilities. Quality of Life (QoL) is increasingly recognised as a critical outcome measure for planning and treatment purposes in ASD. There is a need for ASD-specific QoL measures as generic measures may not capture all relevant aspects of living with ASD. This paper describes the conceptualisation and development of an autism-specific measure of QoL, the Quality of Life in Autism Questionnaire (QoLA) for parents and caregivers of children with ASD, that is suitable to clinical and research settings. Preliminary psychometric properties (reliability and validity) of the measure are also presented. The QoLA has 48 items in two subscales: one comprising QoL items and the second a parent report of how problematic their child's ASD symptoms are. A study involving 39 families suggested the QoLA has excellent internal consistency as well as good known-groups validity between parents of children with ASD and those who were typically developing. The QoLA also showed good convergent validity with other measures of QoL and ASD symptom severity, respectively. The QoLA may be a valuable assessment tool and merits further psychometric evaluation.

摘要

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[10]
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本文引用的文献

[1]
Quality of Life for People with Autism: Raising the Standard for Evaluating Successful Outcomes.

Child Adolesc Ment Health. 2007-5

[2]
Exploring Links between Genotypes, Phenotypes, and Clinical Predictors of Response to Early Intensive Behavioral Intervention in Autism Spectrum Disorder.

Front Hum Neurosci. 2013-9-11

[3]
Psychometric properties of the EuroQol Five Dimensional Questionnaire (EQ-5D-3L) in caregivers of autistic children.

Qual Life Res. 2013-4-25

[4]
Clinical outcomes of an early intervention program for preschool children with Autism Spectrum Disorder in a community group setting.

BMC Pediatr. 2013-1-7

[5]
The association between child autism symptomatology, maternal quality of life, and risk for depression.

J Autism Dev Disord. 2013-8

[6]
The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders.

J Autism Dev Disord. 2013-6

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Expert Rev Pharmacoecon Outcomes Res. 2012-8

[8]
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Child Care Health Dev. 2013-7

[9]
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Autism Res. 2012-4-11

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MMWR Surveill Summ. 2012-3-30

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