Abstract
Quality of life (QOL) and life satisfaction are important research priorities for autistic adults. As such, we saw a need to evaluate individual items of commonly used subjective QOL scales to understand how they are interpreted and perceived by autistic adults. This study used cognitive interviews and repeated sampling to evaluate the accessibility, test-retest reliability and internal consistency of several common QOL measures in a sample of young autistic adults (n = 20; aged 19–32). Cognitive interviews suggested that the Satisfaction with Life Scale was well understood and demonstrated excellent internal consistency and test-retest reliability. While the WHOQoL-BREF and WHOQoL Disability Modules had adequate reliability, cognitive interviews suggested that additional instructions and examples would further enhance their accessibility for use with autistic adults.
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References
Beatty, P. C., & Willis, G. B. (2007). Research Synthesis: the practice of cognitive interviewing. Public Opinion Quarterly, 71(2), 287–311. https://doi.org/10.1093/poq/nfm006.
Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M. L., Caplan, R., Cook, B., Gassner, D., Hector, B. L., Morgan, L., Nebeker, L., Purkis, Y., Rankowski, B., Wittig, K., & Coughlin, S. S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822–833. https://doi.org/10.1177/1362361320908410.
Bujang, M. A., & Baharum, N. (2017). A simplified guide to determination of sample size requirements for estimating the value of intraclass correlation coefficient: A review. Archives of Orofacial Science, 12(1): 1–11.
Bukavina, L., Zaramo, C. E. B., Tarabonata, L., & Modlin, C. S. (2017). Perceptions of Health-Related Quality of Life: a minority men’s perspective. American Journal of Men’s Health, 11(4), 990–998. https://doi.org/10.1177/1557988315580131.
Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with Life Scale. Journal of Personality Assessment, 49(1), 71–75. https://doi.org/10.1207/s15327752jpa4901_13.
Diener (Ed.). (2022). (n.d.), Subjective well-being Retrieved June 3, from http://labs.psychology.illinois.edu/~ediener/Documents/Diener_1984.pdf
Fang, J., Fleck, M. P., Green, A., McVilly, K., Hao, Y., Tan, W., Fu, R., & Power, M. (2011). The response scale for the intellectual disability module of the WHOQOL: 5-point or 3-point? Journal of Intellectual Disability Research, 55(6), 537–549. https://doi.org/10.1111/j.1365-2788.2011.01401.x.
Gliner, J. A., Morgan, G. A., & Harmon, R. J. (2001). Measurement reliability. Journal of the American Academy of Child and Adolescent Psychiatry, 40(4), 486–488. https://doi.org/10.1097/00004583-200104000-00019.
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. https://doi.org/10.1007/s10803-015-2678-0.
Koo, T. K., & Li, M. Y. (2016). A Guideline of selecting and reporting Intraclass correlation coefficients for Reliability Research. Journal of Chiropractic Medicine, 15(2), 155–163. https://doi.org/10.1016/j.jcm.2016.02.012.
Lam, G. Y. H., Sabnis, S., Valcarlos, M. M., & Wolgemuth, J. R. (2021). A critical review of academic literature constructing well-being in autistic adults. Autism in Adulthood. https://doi.org/10.1089/aut.2020.0053.
McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, 48(5), 1596–1611. https://doi.org/10.1007/s10803-017-3402-z.
McConachie, H., Wilson, C., Mason, D., Garland, D., Parr, J. R., Rattazzi, A., Rodgers, J., Skevington, S., Uljarevic, M., & Magiati, I. (2020). What is important in measuring quality of life? Reflections by autistic adults in four countries. Autism in Adulthood, 2(1), 4–12. https://doi.org/10.1089/aut.2019.0008.
Ne’eman, A. (2010). The future (and the past) of Autism Advocacy, or why the ASA’s Magazine, the advocate, wouldn’t publish this piece. Disability Studies Quarterly, 30(1), https://doi.org/10.18061/dsq.v30i1.1059.
Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Lund, E. M., Leotti, S., Kapp, S. K., Katz, M., Beers, L. M., Kripke, C., Maslak, J., Hunter, M., & Zhen, K. Y. (2020). Creating Accessible Survey Instruments for Use with autistic adults and people with intellectual disability: Lessons learned and recommendations. Autism in Adulthood, 2(1), 61–76. https://doi.org/10.1089/aut.2019.0074.
Pellicano, E., & den Houting, J. (2022). Annual Research Review: shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, 63(4), 381–396. https://doi.org/10.1111/jcpp.13534.
Power, M. J., Green, A. M., & The WHOQOL-Dis Group. (2010). Development of the WHOQOL disabilities module. Quality of Life Research, 19(4), 571–584. https://doi.org/10.1007/s11136-010-9616-6.
PROMIS® Instrument Development and Validation Scientific Standards, Version 2.0, (revised May 2013). (n.d.). 72.
Robertson, S. M. (2010). Neurodiversity, Quality of Life, and autistic adults: shifting Research and Professional Focuses onto Real-Life Challenges. Disability Studies Quarterly, 30(1), https://doi.org/10.18061/dsq.v30i1.1069.
Shoukri, M. M., Asyali, M. H., & Donner, A. (2004). Sample size requirements for the design of reliability study: review and new results. Statistical Methods in Medical Research, 13(4), 251–271. https://doi.org/10.1191/0962280204sm365ra.
Skevington, S. M., Lotfy, M., & O’Connell, K. A. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL Group. Quality of Life Research, 13(2), 299–310. https://doi.org/10.1023/B:QURE.0000018486.91360.00.
van Heijst, B. F., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: a meta-analysis. Autism, 19(2), 158–167. https://doi.org/10.1177/1362361313517053.
World Health Organization. Division of Mental Health (1996). WHOQOL-BREF: Introduction, administration, scoring and generic version of the assessment: field trial version, December 1996 (WHOQOL-BREF). World Health Organization. https://apps.who.int/iris/handle/10665/63529
Acknowledgements
This research was funded, in part, by the University of Pittsburgh School of Health and Rehabilitation Sciences Research Development Fund. This work was also supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number KL2TR001856 (Author: KB). The content is solely the responsibility of the author and does not necessarily represent the official views of the National Institutes of Health. No competing financial interests exist.
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Beck, K.B., Terhorst, L.A., Greco, C.M. et al. Item Understanding of Common Quality of Life Measures for use with Autistic Adults. J Autism Dev Disord (2023). https://doi.org/10.1007/s10803-023-05945-4
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DOI: https://doi.org/10.1007/s10803-023-05945-4