Measuring quality of life in autistic adults: the reliability and validity of the Brief Version of the World Health Organization Quality of Life scale

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Mason, D., Rodgers, J., Garland, D., Wilson, C., Parr, J. R., & McConachie, H. (2022). Measuring quality of life in autistic adults: the reliability and validity of the Brief Version of the World Health Organization Quality of Life scale. Health Open Research, 4, 3. https://doi.org/10.12688/amrcopenres.13030.1

Publication date: 7 Feb 2022 Added to AutiHub: 18 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. David Mason *
  2. Jacqui Rodgers
  3. Deborah Garland
  1. Colin Wilson
  2. Jeremy R. Parr
  3. Helen McConachie

Abstract

Background: Measurement of the Quality of Life (QoL) of autistic adults is receiving increasing empirical attention. The World Health Organisation (WHO) QoL measure (WHOQoL-BREF) has been utilised in several studies. Autistic adults report significantly lower QoL compared to neurotypical adults across several domains. However, no studies have investigated the suitability of WHOQoL-BREF as a tool to measure the QoL of autistic adults. Methods: This study explored the validity and reliability of WHOQoL-BREF with a mixed methods approach. Quantitatively, structural validity was explored by an exploratory factor analysis of WHOQoL-BREF data from 352 autistic adults aged 18-80 years. Qualitatively, four discussion groups (n=20 autistic people) were conducted to explore the face validity of the items of WHOQoL-BREF. Results: The five factor structure was conceptually similar to the WHO formulation of QoL, with adequate to good internal consistency of domains; however, some items loaded in an unexpected way. The reasons for these unexpected loadings were explored in the transcripts from the discussion groups. Conclusions: The findings suggest that the WHOQoL-BREF has acceptable validity and reliability for use with autistic adults; however caution is needed when interpreting data from the social domain and some other items

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 01:35.

Cited references
53
With a DOI
49
Without a DOI, from raw bibliography text
4
7 / 53 (13.2%) cited references include at least one author identified as autistic.
References with data to complete
0 / 53 (0.0%)
References with detected author names
53 / 53 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
2
References with raw author names still to review
0
References with external metadata lookup issues
2
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
191
From DOI or external metadata
191
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
83 / 191 (43.5%) names are linked to an author already present in AutiHub. 108 / 191 (56.5%) names are not yet linked.
Names linked to a person identified as autistic
7 / 191 (3.7%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 7 / 83 (8.4%). Distinct people identified as autistic: 2 / 151 (1.3%).
  1. van de Mortel , F Thea (2008). Faking it: social desirability response bias in self-report research. Aust J Adv Nurs., 25(4), 40-48.
    Type: Article OpenAlex: https://openalex.org/W1480451672
    Crossref OpenAlex
  3. Theo Lorenc , Mark Rodgers , David Marshall , Hollie Melton , Rebecca Rees , Kath Wright et al. (2018). Support for adults with autism spectrum disorder without intellectual impairment: Systematic review . Autism, 22(6), 654-668. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317698939 OpenAlex: https://openalex.org/W2735375997
    Crossref OpenAlex OpenCitations
  4. Inge Kamp-Becker , Johanna Schröder , Helmut Remschmidt , Christian J. Bachmann (2010). Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder . Psychological Medicine, 31(7), 1. German Medical Science GMS Publishing House.
    Type: Article DOI: 10.3205/psm000065 OpenAlex: https://openalex.org/W1517975489
    Crossref OpenAlex OpenCitations
  5. James Baglin (2014). Improving Your Exploratory Factor Analysis for Ordinal Data: A Demonstration Using FACTOR . Practical Assessment, Research and Evaluation, 19(5), 5. University of Massachusetts Amherst.
    Type: Article DOI: 10.7275/dsep-4220 OpenAlex: https://openalex.org/W2991755606
    Crossref OpenAlex OpenCitations
  6. Anil K. Seth (2013). Interoceptive inference, emotion, and the embodied self . Trends in Cognitive Sciences, 17(11), 565-573. Elsevier BV.
    Type: Article DOI: 10.1016/j.tics.2013.09.007 OpenAlex: https://openalex.org/W2052685640
    Crossref OpenAlex OpenCitations
  7. Mohammad Ghaziuddin , Neera Ghaziuddin , John Greden (2002). Depression in Persons with Autism: Implications for Research and Clinical Care . Journal of Autism and Developmental Disorders, 32(4), 299-306. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1023/a:1016330802348 OpenAlex: https://openalex.org/W1546207985
    Crossref OpenAlex OpenCitations
  8. Traolach Brugha , Lucy Doos , Althea Tempier , Stewart Einfeld , Patricia Howlin (2015). Outcome measures in intervention trials for adults with autism spectrum disorders; a systematic review of assessments of core autism features and associated emotional and behavioural problems . International Journal of Methods in Psychiatric Research, 24(2), 99-115. Wiley.
    Type: Article DOI: 10.1002/mpr.1466 OpenAlex: https://openalex.org/W2157188736
    Crossref OpenAlex OpenCitations
  9. Patricia J. M. Van Wijngaarden-Cremers , Evelien van Eeten , Wouter B. Groen , Patricia A. Van Deurzen , Iris J. Oosterling , Rutger Jan Van der Gaag (2014). Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis . Journal of Autism and Developmental Disorders, 44(3), 627-635. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-013-1913-9 OpenAlex: https://openalex.org/W2070034706
    Crossref OpenAlex OpenCitations
  10. Jason W. Osborne , Anna B. Costello (2009). Best practices in exploratory factor analysis: Four recommendations for getting the most from your analysis. Pan-Pacific Management Review., 12(7), 131-146.
    Type: Article OpenAlex: https://openalex.org/W1855539512
    Crossref OpenAlex
  11. Audrey F. Burgess , Steven E. Gutstein (2007). Quality of Life for People with Autism: Raising the Standard for Evaluating Successful Outcomes . Child and Adolescent Mental Health, 12(2), 80-86. Wiley.
    Type: Article DOI: 10.1111/j.1475-3588.2006.00432.x OpenAlex: https://openalex.org/W2172253007
    Crossref OpenAlex OpenCitations
  12. Gael I. Orsmond , Marty Wyngaarden Krauss , Marsha Mailick Seltzer (2004). Peer Relationships and Social and Recreational Activities Among Adolescents and Adults with Autism . Journal of Autism and Developmental Disorders, 34(3), 245-256. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1023/b:jadd.0000029547.96610.df OpenAlex: https://openalex.org/W2115711376
    Crossref OpenAlex OpenCitations
  14. J Constantino (2012). Social responsiveness scale (2nd ed.) (SRS-2).
    Type: Other
    Crossref
  15. Micah Mazurek (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders . Autism, 18(3), 223-232. SAGE Publications.
    Type: Article DOI: 10.1177/1362361312474121 OpenAlex: https://openalex.org/W2161515436
    Crossref OpenAlex OpenCitations
  16. Gale Whiteneck , Marcel P. Dijkers (2009). Difficult to Measure Constructs: Conceptual and Methodological Issues Concerning Participation and Environmental Factors . Archives of Physical Medicine and Rehabilitation, 90(11), S22-S35. Elsevier BV.
    Type: Article DOI: 10.1016/j.apmr.2009.06.009 OpenAlex: https://openalex.org/W1973722897
    Crossref OpenAlex OpenCitations
  17. Marie K Deserno , Denny Borsboom , Sander Begeer , Hilde M. Geurts (2017). Multicausal systems ask for multicausal approaches: A network perspective on subjective well-being in individuals with autism spectrum disorder . Autism, 21(8), 960-971. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316660309 OpenAlex: https://openalex.org/W2518496052
    Crossref OpenAlex OpenCitations
  18. Adam Helles , I Carina Gillberg , Christopher Gillberg , Eva Billstedt (2017). Asperger syndrome in males over two decades: Quality of life in relation to diagnostic stability and psychiatric comorbidity . Autism, 21(4), 458-469. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316650090 OpenAlex: https://openalex.org/W2407840290
    Crossref OpenAlex OpenCitations
  19. Elisabeth L. Hill , Sylvie Berthoz , Uta Frith (2004). Brief Report: Cognitive Processing of Own Emotions in Individuals with Autistic Spectrum Disorder and in Their Relatives . Journal of Autism and Developmental Disorders, 34(2), 229-235. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1023/b:jadd.0000022613.41399.14 OpenAlex: https://openalex.org/W2008070136
    Crossref OpenAlex OpenCitations
  20. Marie K. Deserno , Denny Borsboom , Sander Begeer , Joost A. Agelink van Rentergem , Kawita Mataw , Hilde M. Geurts (2019). Sleep determines quality of life in autistic adults: A longitudinal study . Autism Research, 12(5), 794-801. Wiley.
    Type: Article DOI: 10.1002/aur.2103 OpenAlex: https://openalex.org/W2938277715
    Crossref OpenAlex OpenCitations
  21. Yiran Dong , Chao-Ying Joanne Peng (2013). Principled missing data methods for researchers . SpringerPlus, 2(1), 222. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/2193-1801-2-222 OpenAlex: https://openalex.org/W2139075905
    Crossref OpenAlex OpenCitations
  22. Urbano Lorenzo-Seva , Pere J. Ferrando (2006). FACTOR: A computer program to fit the exploratory factor analysis model . Behavior Research Methods, 38(1), 88-91. Springer Science and Business Media LLC.
    Type: Article DOI: 10.3758/bf03192753 OpenAlex: https://openalex.org/W2035128319
    Crossref OpenAlex OpenCitations
  23. Marieke Jennes-Coussens , Joyce Magill-Evans , Cyndie Koning (2006). The quality of life of young men with Asperger syndrome . Autism, 10(4), 403-414. SAGE Publications.
    Type: Article DOI: 10.1177/1362361306064432 OpenAlex: https://openalex.org/W2130880819
    Crossref OpenAlex OpenCitations
  24. John Ruscio , Brendan Roche (2012). Determining the number of factors to retain in an exploratory factor analysis using comparison data of known factorial structure. Psychological Assessment, 24(2), 282-292. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0025697 OpenAlex: https://openalex.org/W2061540482
    Crossref OpenAlex OpenCitations
  25. Magdalena Glod , Deborah M. Riby , Emma Honey , Jacqui Rodgers (2015). Psychological Correlates of Sensory Processing Patterns in Individuals with Autism Spectrum Disorder: A Systematic Review . Review Journal of Autism and Developmental Disorders, 2(2), 199-221. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-015-0047-8 OpenAlex: https://openalex.org/W2076793654
    Crossref OpenAlex OpenCitations
  26. Gael I. Orsmond , Paul Shattuck , Benjamin P. Cooper , Paul R. Sterzing , Kristy A. Anderson (2013). Social Participation Among Young Adults with an Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 43(11), 2710-2719. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-013-1833-8 OpenAlex: https://openalex.org/W2064000989
    Crossref OpenAlex OpenCitations
  27. The WHOQOL-Dis Group , M. J. Power , A. M. Green (2010). Development of the WHOQOL disabilities module . Quality of Life Research, 19(4), 571-584. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11136-010-9616-6 OpenAlex: https://openalex.org/W2064643935
    Crossref OpenAlex OpenCitations
  28. Jinkuk Hong , Lauren Bishop-Fitzpatrick , Leann E. Smith , Jan S. Greenberg , Marsha R. Mailick (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. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2678-0 OpenAlex: https://openalex.org/W2203061867
    Crossref OpenAlex OpenCitations
  29. THE WHOQOL GROUP (1998). Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment . Psychological Medicine, 28(3), 551-558. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291798006667 OpenAlex: https://openalex.org/W2429180991
    Crossref OpenAlex OpenCitations
  30. Yoko Kamio , Naoko Inada , Tomonori Koyama (2013). A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders . Autism, 17(1), 15-26. SAGE Publications.
    Type: Article DOI: 10.1177/1362361312436848 OpenAlex: https://openalex.org/W2095938341
    Crossref OpenAlex OpenCitations
  31. Jacqui Rodgers , Sarah Wigham , Helen McConachie , Mark Freeston , Emma Honey , Jeremy R. Parr (2016). Development of the anxiety scale for children with autism spectrum disorder (ASC‐ASD) . Autism Research, 9(11), 1205-1215. Wiley.
    Type: Article DOI: 10.1002/aur.1603 OpenAlex: https://openalex.org/W2279437985
    Crossref OpenAlex OpenCitations
  32. Suzanne Skevington , M. Lotfy , K.A. O'Connell (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. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1023/b:qure.0000018486.91360.00 OpenAlex: https://openalex.org/W2109935313
    Crossref OpenAlex OpenCitations
  34. Sophie E. Lind (2010). Memory and the self in autism . Autism, 14(5), 430-456. SAGE Publications.
    Type: Article DOI: 10.1177/1362361309358700 OpenAlex: https://openalex.org/W2111291642
    Crossref OpenAlex OpenCitations
  35. Lauren P Lawson , Amanda Richdale , Alexandra Haschek , Rebecca L. Flower , Josh Vartuli , Samuel R. C. Arnold et al. (2020). Cross-sectional and longitudinal predictors of quality of life in autistic individuals from adolescence to adulthood: The role of mental health and sleep quality . Autism, 24(4), 954-967. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320908107 OpenAlex: https://openalex.org/W3011778920
    Crossref OpenAlex OpenCitations
  36. Eeske van Roekel , Ron H. J. Scholte , Robert Didden (2010). Bullying Among Adolescents With Autism Spectrum Disorders: Prevalence and Perception . Journal of Autism and Developmental Disorders, 40(1), 63-73. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-009-0832-2 OpenAlex: https://openalex.org/W2114851164
    Crossref OpenAlex OpenCitations
  37. Susan Leekam , Carmen Nieto , Sarah J. Libby , Lorna Wing , Judith Gould (2007). Describing the Sensory Abnormalities of Children and Adults with Autism . Journal of Autism and Developmental Disorders, 37(5), 894-910. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-006-0218-7 OpenAlex: https://openalex.org/W2138201707
    Crossref OpenAlex OpenCitations
  38. Paul Shattuck , Sarah Carter Narendorf , Benjamin Cooper , Paul R. Sterzing , Mary Wagner , Julie Lounds Taylor (2012). Postsecondary education and employment among youth with an autism spectrum disorder . Pediatrics, 129(6), 1042. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2011-2864 OpenAlex: https://openalex.org/W2128138260
    Crossref OpenAlex OpenCitations
  39. Ling-Yi Lin (2014). Quality of Life of Taiwanese Adults with Autism Spectrum Disorder . PLoS ONE, 9(10), e109567. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0109567 OpenAlex: https://openalex.org/W2164709098
    Crossref OpenAlex OpenCitations
  40. L. Tavernor , E. Barron , Jacqui Rodgers , Helen McConachie (2013). Finding out what matters: validity of quality of life measurement in young people with ASD . Child: Care, Health and Development, 39(4), 592-601. Wiley.
    Type: Article DOI: 10.1111/j.1365-2214.2012.01377.x OpenAlex: https://openalex.org/W2119468181
    Crossref OpenAlex OpenCitations
  41. Ling-Yi Lin , Pai-Chuan Huang (2019). Quality of life and its related factors for adults with autism spectrum disorder . Disability and Rehabilitation, 41(8), 896-903. Informa UK Limited.
    Type: Article DOI: 10.1080/09638288.2017.1414887 OpenAlex: https://openalex.org/W2772050964
    Crossref OpenAlex OpenCitations
  42. J O Renty , Herbert Roeyers (2006). Quality of life in high-functioning adults with autism spectrum disorder . Autism, 10(5), 511-524. SAGE Publications.
    Type: Article DOI: 10.1177/1362361306066604 OpenAlex: https://openalex.org/W2126485481
    Crossref OpenAlex OpenCitations
  43. Helen McConachie , David Mason * , Jeremy R. Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the validity of a quality of life measure for Autistic people . Journal of Autism and Developmental Disorders, 48(5), 1596. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3402-z OpenAlex: https://openalex.org/W2768942203
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  44. U Lorenzo-Seva (n.d.). FACTOR.
    Type: Other
    Crossref
  46. Janice Rattray , Martyn C Jones (2007). Essential elements of questionnaire design and development . Journal of Clinical Nursing, 16(2), 234-243. Wiley.
    Type: Article DOI: 10.1111/j.1365-2702.2006.01573.x OpenAlex: https://openalex.org/W2139106273
    Crossref OpenAlex OpenCitations
  48. Barbara FC van Heijst , Hilde M. Geurts (2015). Quality of life in autism across the lifespan: A meta-analysis . Autism, 19(2), 158-167. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313517053 OpenAlex: https://openalex.org/W2150681219
    Crossref OpenAlex OpenCitations
  50. Teresa A. Myers (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. Informa UK Limited.
    Type: Article DOI: 10.1080/19312458.2011.624490 OpenAlex: https://openalex.org/W2165859062
    Crossref OpenAlex OpenCitations
  51. Philippa Moss , Will Mandy , Patricia Howlin (2017). Child and Adult Factors Related to Quality of Life in Adults with Autism . Journal of Autism and Developmental Disorders, 47(6), 1830-1837. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3105-5 OpenAlex: https://openalex.org/W2598640917
    Crossref OpenAlex OpenCitations
  52. An Gie Yong , Sean Pearce (2013). A Beginner’s Guide to Factor Analysis: Focusing on Exploratory Factor Analysis . Tutorials in Quantitative Methods for Psychology, 9(2), 79-94. The Quantitative Methods for Psychology.
    Type: Article DOI: 10.20982/tqmp.09.2.p079 OpenAlex: https://openalex.org/W2183877827
    Crossref OpenAlex OpenCitations
  53. Bethany Oakley , Julian Tillmann , Jumana Ahmad , Daisy Crawley , Antonia San José Cáceres , R. J. Holt et al. (2021). How do core autism traits and associated symptoms relate to quality of life? Findings from the Longitudinal European Autism Project . Autism, 25(2), 389-404. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320959959 OpenAlex: https://openalex.org/W3092212229
    Crossref OpenAlex OpenCitations