Swipe om te navigeren naar een ander artikel
The online version of this article (https://doi.org/10.1007/s10803-017-3402-z) contains supplementary material, which is available to authorized users.
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.
Supplementary material 1 (DOCX 167 KB)10803_2017_3402_MOESM1_ESM.docx
American Psychiatric Association (2013). Autism Spectrum Disorder (5th edn., Diagnostic and Statistical Manual of Mental Disorders). Washington, DC: American Psychiatric Association.
Baglin, J. (2014). Improving your exploratory factor analysis for ordinal data: A demonstration using FACTOR. Practical Assessment, Research & Evaluation, 19(5), 1–15.
Barneveld, P. S., Swaab, H., Fagel, S., van Engeland, H., & de Sonneville, L. M. J. (2014). Quality of life: A case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Comprehensive Psychiatry, 55(2), 302–310. CrossRefPubMed
Bishop-Fitzpatrick, L., Minshew, N. J., & Eack, S. M. (2014). A systematic review of psychosocial interventions for adults with autism spectrum disorders. In Adolescents and adults with autism spectrum disorders (pp. 315–327). New York: Springer. CrossRef
Boeije, H., & Willis, G. (2013). The cognitive interviewing reporting framework (CIRF). Methodology, 9(3), 87–95. CrossRef
Burgess, A. F., & Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12(2), 80–86. CrossRef
Chiang, H.-M., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Research in Autism Spectrum Disorders, 8(8), 974–986. CrossRef
Constantino, J. N., & Gruber, C. P. (2012). Social responsiveness scale (2nd ed.) (SRS-2) [Manual] (Vol. Pearson). Torrance, CA: Western Psychological Services.
Cottenceau, H., Roux, S., Blanc, R., Lenoir, P., Bonnet-Brilhault, F., & Barthélémy, C. (2012). Quality of life of adolescents with autism spectrum disorders: Comparison to adolescents with diabetes. European Child & Adolescent Psychiatry, 21(5), 289–296. CrossRef
Cummins, R. A. (1997). ‘Comprehensive quality of life scale’, adult manual (5th ed.). Melbourne: School of Psychology, Deakin University.
De Jaegher, H. (2013). Embodiment and sense-making in autism. Frontiers in Integrative Neuroscience, 7(15), 1–19.
Elichaoff, F. (2015). What’s it like being you? Growing old (er) with autism spectrum conditions—A scoping study. The European Journal of Social and Behavioural Sciences, 13(2), 1851–1864. CrossRef
Feldhaus, C. (2015). Quality of life—Development of an assessment for people with autism. Psychology Research, 5(5), 327–337.
Harper, A. (1998). Development of the World Health Organisation WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558. CrossRef
Hasson, F., Keeney, S., & McKenna, H. (2000). Research guidelines for the Delphi survey technique. Journal of Advanced Nursing, 32(4), 1008–1015. PubMed
Hickey, E. J., Dubois, L., & Hartley, S. L. (2017). Positive and negative social exchanges experienced by fathers and mothers of children with autism. Autism. https://doi.org/10.1177/1362361316687117
Hong, J., Bishop-Fitzpatrick, L., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Factors associated with subjective quality of life of adults with autism spectrum disorder: Self-report versus maternal reports. Journal of Autism and Developmental Disorders, 46(4), 1368–1378. CrossRefPubMedPubMedCentral
Kamp-Becker, I., Schröder, J., Remschmidt, H., & Bachmann, C. J. (2010). Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. Psychological Medicine, 31(7), 1–10.
Lee, I. A., & Preacher, K. J. (2013). Calculation for the test of the difference between two dependent correlations with one variable in common [Computer software]. Accessed 31 May 2017.
Liao, L.-R., Lau, R. W. K., & Pang, M. Y. C. (2012). Measuring environmental barriers faced by individuals living with stroke: Development and validation of the Chinese version of the Craig Hospital inventory of environmental factors. Journal of Rehabilitation Medicine, 44(9), 740–746. CrossRefPubMed
Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466–474. CrossRef
Mason, D., Parr, J. R., Garland, D., Petrou, A., Rodgers, J., & McConachie, H. (submitted-a). Predictors of quality of life for adults on the autism spectrum.
Mason, D., Rodgers, J., Garland, D., Wilson, C., Parr, J. R., & McConachie, H. (submitted-b). Measuring quality of life in autistic adults: The reliability and validity of the brief version of the World Health Organization quality of life scale for autistic adults.
Merz, E. L., Roesch, S. C., Malcarne, V. L., Penedo, F. J., Llabre, M. M., Weitzman, O. B., et al. (2014). Validation of interpersonal support evaluation list-12 (ISEL-12) scores among English-and Spanish-speaking Hispanics/Latinos from the HCHS/SOL Sociocultural Ancillary Study. Psychological Assessment, 26(2), 384. CrossRefPubMed
Myers, T. A. (2011). Goodbye, listwise deletion: Presenting hot deck imputation as an easy and effective tool for handling missing data. Communication Methods and Measures, 5(4), 297–310. CrossRef
Stephenson, W. (1953). The study of behavior: Q technique and its methodology. Chicago: University of Chicago Press.
Uljarevic, M., Richdale, A. L., McConachie, H., Hedley, D., Cai, R. Y., Merrick, H., et al. (2017). The hospital anxiety and depression scale: Factor structure and psychometric properties in older adolescents and young adults with autism spectrum disorder. Autism Research. https://doi.org/10.1002/aur.1872.
- Enhancing the Validity of a Quality of Life Measure for Autistic People
Jeremy R. Parr
- Springer US