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

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

doi:10.1155/2014/160783

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.

Highlights

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder characterised by impairments in social interaction, verbal and nonverbal communication, and a restricted repertoire of activities and interests [1]
The present study aimed to develop an autism-specific measure of QoL, the Quality of Life in Autism Questionnaire (QoLA) for parents of children with ASD that is suitable to clinical and research settings
There was some evidence of positive skew in QoLA Part B responses, with parents in the ASD group endorsing the highest response category 31% of the time on average

Summary

Introduction

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder characterised by impairments in social interaction, verbal and nonverbal communication, and a restricted repertoire of activities and interests [1]. Building on genetic vulnerability [4], it has been hypothesised that ASD emerges from a developmental cascade in which a deficit in attention to social stimuli leads to impaired interactions with primary caregivers. This results in abnormal development of the neurocircuitry responsible for social cognition, which in turn adversely affects later behavioural and functional domains dependent on these early processes [5, 6]. Families of children with ASD are reported to experience higher levels of family stress and more family problems than families of children with Down syndrome [11, 12], attention deficit hyperactivity disorder [13], and medical conditions such as cystic fibrosis [14]

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