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Cited by 85Autism Spectrum Disorder ResearchPsychometric Methodologies and TestingDown syndrome and intellectual disability research

What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries

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McConachie, Helen, Wilson, Colin, Mason, David, Garland, Deborah, Parr, Jeremy R., Rattazzi, Alexia, Rodgers, Jacqui, Skevington, Suzanne +2 more·2020·Autism in Adulthood
DOI 10.1089/aut.2019.0008PMC PMC8992842
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Abstract

Relevant and valid measurement is crucial in determining whether interventions and supports have improved the quality of life (QoL) of autistic people. However, it is possible that researchers' and services' use of general population QoL tools may overlook issues of specific importance. To advance methodology, we conducted a preliminary exploration of the need and basis for cross-cultural development of additional autism-specific QoL questions. Nine consultation groups with autistic adults ( n = 38) were held in Argentina, Australia, Singapore, and the United Kingdom to examine the items of the World Health Organization QoL questionnaire (WHOQOL-BREF) and the WHOQOL Disabilities add-on module. Each group discussion was transcribed and analyzed thematically to identify missing issues and nuances of particular significance to autistic people. Themes seen as important and particularly relevant to QoL of autistic people included a positive autistic identity, other people's lack of understanding of autism, sensory issues, and autistic people's contributions to society. There were notable similarities across sites indicating that creation of cross-cultural autism-specific items is likely to be possible; the themes identified could inform the focus of items for measurement of QoL. This project represents an initial step toward fuller international consultation, and subsequent development of an autism-specific module for addition to the core WHOQOL model. Lay summary: Why was this project done?: Quality of life (QoL) refers to how satisfied a person is with their life now, taking into account their experiences and the conditions in which they live. There are questionnaires for the general public to rate their QoL, but these may ask questions in ways that are not important or relevant for autistic people; for example, some autistic people have few or no friends, but are fine with this. Also questionnaires miss out topics such as sensory overload that impact on QoL for autistic people. What was the purpose?: We wanted to try to understand whether the questions in the World Health Organization Questionnaire (WHOQOL-BREF for short), and in the optional add-on Disabilities questionnaire, were important and relevant to autistic people from different countries and cultures. We also wanted to find out whether autistic people thought there were other important topics missing from these questionnaires. What did the researchers do?: We held 9 consultation groups about the WHO questionnaire items, with 38 autistic people in 4 countries: the United Kingdom, Singapore, Australia, and Argentina. Researchers, including members of the autism community, read the typed out discussions a number of times to find common themes, especially what was particularly relevant, or topics and experiences that were missing. First we analyzed the four United Kingdom groups, and then the other five groups. What did the researchers find?: Autistic people we consulted thought that most of the existing items of the WHOQOL questionnaires were important. From the discussions, we found 13 themes that were identified as particularly relevant to QoL, including being positive about one's autistic identity, other people's (lack of) knowledge of autism, sensory issues, mental health difficulties, the nature of friendships, and supporting other people as carers or volunteers. What do these findings add to what was already known?: The discussions from the four countries were quite similar. The items from the WHO QoL questionnaires were mostly viewed as important and relevant by autistic people, but a number of issues are missing, which seem different in autism and should be included in any improved measurement of QoL. What are potential weaknesses?: The project was a first step in consultation about measuring autistic adults' QoL, involving only four countries, and all except one group conducted in English. Only one group included people with intellectual disability. How will these findings help autistic adults now or in the future?: Having good QoL is central for everyone. Our consultation found that some topics highly relevant for autistic people are not included in QoL questionnaires developed for the general population. Our findings suggest that it will be both important and possible to develop a set of internationally appropriate items for autistic people to add to the existing WHO QoL questionnaires. This would allow researchers and health workers to measure accurately the QoL of autistic adults and to be able to judge how helpful supports and services are in improving QoL.

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  • When autistic people have been involved in determining outcomes relevant to their quality of life, they have identified unique factors including other people's knowledge and acceptance of autism, sensory processing differences, supporting other people, and positive autistic identity.

    “when autistic people have been involved in determining outcomes that are relevant to their quality of life, they have identified unique factors including other people’s knowledge and acceptance of autism; sensory processing differences; supporting other people and positive autistic identity (McConachie et al., 2020).”

    From Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (2022) · cites this paper as McConachie et al., 2020

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  1. [1]1. The World Health Organisation Quality of Life Assessment Group. The development of the WHO Quality of Life Assessment Instrument (The WHOQOL). In: Orley J, Kuyken W, eds. Quality of Life Assessment: International Perspectives. Berlin, Heidelberg, and New York: Springer-Verlag; 1994;41–60. [Google Scholar]
  2. [12]12. Kerns CM, Kendall PC. The presentation and classification of anxiety in autism spectrum disorder. Clin Psychol. 2012;19(4):323–347. [Google Scholar]

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Authors
McConachie, H., Wilson, C., Mason, D., Garland, D., Parr, J. R., Rattazzi, A., Rodgers, J., Skevington, S., Uljarevic, M., & Magiati, I.
Affiliations
  • Newcastle University (GB)
  • Autism Advocate, Sunderland, United Kingdom.
  • The National Autistic Society (GB)
  • Cumbria Northumberland Tyne and Wear NHS Foundation Trust (GB)
  • Programa Argentino para Niños, Adolescentes y Adultos con Condiciones del Espectro Autista (PANAACEA), Buenos Aires, Argentina.
  • University of Manchester (GB)
  • Division of Child and Adolescent Psychiatry, Department of Psychiatry and Behavioral Sciences, Stanford Autism Center, School of Medicine, Stanford University, Stanford, California, USA.
  • National University of Singapore (SG)
Corresponding author
McConachie, Helen
ORCID
Venue
Autism in Adulthood
Publisher
SAGE Publications
Published
2020-03-01
Volume
2
Issue
1
Pages
4-12
ISSN
  • 2573-9581 (ISSN-L)
  • 2573-959X
DOI
10.1089/aut.2019.0008
PMC
PMC8992842
OpenAlex
W2974102439
Cited by
85
References
33
Citations by year
2026: 11 · 2025: 11 · 2024: 20 · 2023: 11 · 2022: 13 · 2021: 13 · 2020: 6
FWCI
4.65
Type
journal article
Language
en
Open access
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • Autism in Adulthood (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
  • Newcastle University ePrints (Newcastle Univesity)
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
Keywords
quality of life, autism spectrum disorder, autistic adults, WHOQOL-BREF, cross-cultural adaptation, sensory disturbances, autistic identity, cross-cultural comparison, Australia, Singapore, United Kingdom, Argentina

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