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      Enhancing the Validity of a Quality of Life Measure for Autistic People

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          Abstract

          Accurate measurement of quality of life (QoL) is important for evaluation of autism services and trials of interventions. We undertook psychometric validation of the World Health Organisation measure—WHOQoL-BREF, examined construct validity of the WHO Disabilities module and developed nine additional autism-specific items (ASQoL) from extensive consultation with the autism community. The sample of 309 autistic people was recruited from the Adult Autism Spectrum Cohort-UK. The WHOQoL-BREF had good psychometric properties, including criterion, convergent, divergent and discriminant validity. The WHO Disabilities module showed adequate construct validity and reliability. The ASQoL items form a unitary factor of QoL, with one global item. Future studies can use the WHO measures alongside the ASQoL items to measure QoL of autistic people.

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          The online version of this article (10.1007/s10803-017-3402-z) contains supplementary material, which is available to authorized users.

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          Most cited references 25

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          Quality of life: Its definition and measurement

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            Goodbye, Listwise Deletion: Presenting Hot Deck Imputation as an Easy and Effective Tool for Handling Missing Data

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              Examination of the equivalence of self-report survey-based paper-and-pencil and internet data collection methods.

              Self-report survey-based data collection is increasingly carried out using the Internet, as opposed to the traditional paper-and-pencil method. However, previous research on the equivalence of these methods has yielded inconsistent findings. This may be due to methodological and statistical issues present in much of the literature, such as nonequivalent samples in different conditions due to recruitment, participant self-selection to conditions, and data collection procedures, as well as incomplete or inappropriate statistical procedures for examining equivalence. We conducted 2 studies examining the equivalence of paper-and-pencil and Internet data collection that accounted for these issues. In both studies, we used measures of personality, social desirability, and computer self-efficacy, and, in Study 2, we used personal growth initiative to assess quantitative equivalence (i.e., mean equivalence), qualitative equivalence (i.e., internal consistency and intercorrelations), and auxiliary equivalence (i.e., response rates, missing data, completion time, and comfort completing questionnaires using paper-and-pencil and the Internet). Study 1 investigated the effects of completing surveys via paper-and-pencil or the Internet in both traditional (i.e., lab) and natural (i.e., take-home) settings. Results indicated equivalence across conditions, except for auxiliary equivalence aspects of missing data and completion time. Study 2 examined mailed paper-and-pencil and Internet surveys without contact between experimenter and participants. Results indicated equivalence between conditions, except for auxiliary equivalence aspects of response rate for providing an address and completion time. Overall, the findings show that paper-and-pencil and Internet data collection methods are generally equivalent, particularly for quantitative and qualitative equivalence, with nonequivalence only for some aspects of auxiliary equivalence.
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                Author and article information

                Contributors
                +44 191 282 1396 , helen.mcconachie@ncl.ac.uk
                Journal
                J Autism Dev Disord
                J Autism Dev Disord
                Journal of Autism and Developmental Disorders
                Springer US (New York )
                0162-3257
                1573-3432
                29 November 2017
                29 November 2017
                2018
                : 48
                : 5
                : 1596-1611
                Affiliations
                [1 ]ISNI 0000 0001 0462 7212, GRID grid.1006.7, Institute of Health and Society, , Newcastle University, ; Newcastle upon Tyne, UK
                [2 ]ISNI 0000 0001 0462 7212, GRID grid.1006.7, Institute of Neuroscience, , Newcastle University, ; Newcastle upon Tyne, UK
                [3 ]National Autistic Society Resource Centre, Newcastle upon Tyne, UK
                [4 ]Autism Advocate, Sunderland, UK
                [5 ]Institute of Health and Society, Newcastle University, Sir James Spence Institute level 3, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP UK
                Article
                3402
                10.1007/s10803-017-3402-z
                5889785
                29188584
                © The Author(s) 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                Funding
                Funded by: Research Autism
                Funded by: FundRef http://dx.doi.org/10.13039/100011706, Autistica;
                Funded by: The Shirley Foundation
                Categories
                Original Paper
                Custom metadata
                © Springer Science+Business Media, LLC, part of Springer Nature 2018

                Neurology

                autism, quality of life, public mental health, measurement properties

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