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. 2024 Jul;54(7):2625-2635.
doi: 10.1007/s10803-023-05945-4. Epub 2023 May 4.

Item Understanding of Common Quality of Life Measures for use with Autistic Adults

Kelly B Beck  1 , Lauren A Terhorst  2 , Carol M Greco  3 , Jamie L Kulzer  4 , Elizabeth R Skidmore  2 , Michael P McCue  4
Affiliations

Item Understanding of Common Quality of Life Measures for use with Autistic Adults

Kelly B Beck et al. J Autism Dev Disord. 2024 Jul.

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.

Keywords: Accessibility; Adults; Autism spectrum disorder; Cognitive interviews; Patient-reported outcome measures; Quality of life.

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Figures

Fig. 1
Fig. 1
Cohort prospective study design including reliability assessments and cognitive interviews per scale
See this image and copyright information in PMC

References

    1. Beatty PC, & Willis GB (2007). Research Synthesis: the practice of cognitive interviewing. Public Opinion Quarterly, 71(2), 287–311. 10.1093/poq/nfm006. - DOI
    1. Benevides TW, Shore SM, Palmer K, Duncan P, Plank A, Andresen ML, Caplan R, Cook B, Gassner D, Hector BL, Morgan L, Nebeker L, Purkis Y, Rankowski B, Wittig K, & Coughlin SS (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. 10.1177/1362361320908410. - DOI - PMC - PubMed
    1. Bujang MA, & 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.
    1. Bukavina L, Zaramo CEB, Tarabonata L, & Modlin CS (2017). Perceptions of Health-Related Quality of Life: a minority men’s perspective. American Journal of Men’s Health, 11(4), 990–998. 10.1177/1557988315580131. - DOI - PMC - PubMed
    1. Diener E, Emmons RA, Larsen RJ, & Griffin S (1985). The satisfaction with Life Scale. Journal of Personality Assessment, 49(1), 71–75. 10.1207/s15327752jpa4901_13. - DOI - PubMed

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