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Autism Research and Treatment
Volume 2014, Article ID 160783, 11 pages
http://dx.doi.org/10.1155/2014/160783
Research Article

Conceptualisation and Development of a Quality of Life Measure for Parents of Children with Autism Spectrum Disorder

1Academic 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
2University of New South Wales, Sydney, NSW 2052, Australia

Received 19 September 2013; Revised 30 January 2014; Accepted 7 February 2014; Published 20 March 2014

Academic Editor: Herbert Roeyers

Copyright © 2014 Valsamma Eapen et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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.