Enhancing the Validity of a Quality of Life Measure for Autistic People

McConachie, Helen; Mason, David; Parr, Jeremy; Garland, Deborah; Wilson, Colin; Rodgers, Jacqui

doi:10.1007/s10803-017-3402-z

Cited by 183 publications

(180 citation statements)

References 55 publications

(65 reference statements)

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“…The large sample gave power to undertake analyses by age and gender. A robust measure of QoL is a strength, increasing the validity of the analysis; furthermore, the WHOQoL‐BREF has been further validated as a QoL measure for the autism population [McConachie et al, ] which strengthens the present findings.…”

Section: Discussionsupporting

confidence: 72%

Predictors of quality of life for autistic adults

et al. 2018

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Research with adults on the autism spectrum is as yet limited in scope and quality. The present study describes quality of life (QoL) of a large sample of autistic adults in the UK and investigates characteristics that may be predictive of QoL. A total of 370 autistic adults from the Adult Autism Spectrum Cohort‐UK (ASC‐UK) completed the WHOQoL‐BREF, and the Social Responsiveness Scale (SRS, autism symptom severity), along with the ASC‐UK registration questionnaire giving information on mental health and their life situation. QoL for autistic adults was lower than for the general population for each WHOQoL domain. Younger participants reported higher QoL than older participants in psychological and environment domains. Males reported higher physical QoL than females, and females reported higher social QoL than males. Significant positive predictors of QoL were: being employed (physical QoL), receiving support (social and environment QoL), and being in a relationship (social QoL). Having a mental health condition and higher SRS total score were negative predictors of QoL across all four domains. Autistic adults require access to effective mental health interventions, and informal and formal support for their social difficulties, to improve their quality of life. Autism Res 2018, 11: 1138–1147. © 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc.Lay summaryThere has been limited research into the lived experience of autistic adults. Using the World Health Organization quality of life measure, we found that autistic people (370) in the UK reported their quality of life to be lower than that of the general population. Better quality of life was associated with being in a relationship; those with a mental health condition had poorer quality of life. This research suggests some ways in which autistic people can be helped to improve their quality of life.

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Section: Discussionsupporting

confidence: 72%

Predictors of quality of life for autistic adults

et al. 2018

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“…For example, McConachie et al examined the construct validity of the World Health Organization Quality of Life Measure (the WHOQoL-BREF) and developed nine additional autism-specific items based on consultations with groups of autistic adults in four countries. 36,37 While their methods may differ from ours, like us, they found that the existing measure did not fully capture the intended construct, so they worked with autistic adults to create additional items. Similarly, Rodgers et al 65 consulted with autistic adults to adapt an anxiety scale to be more accessible to this population.…”

Section: Discussionmentioning

confidence: 77%

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Nicolaidis

Raymaker

McDonald

et al. 2020

Autism in Adulthood

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Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants.

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“…For example, the wide range of scores regarding QoL in some subgroups suggest that there might be other predictors, which could result in another informative subgroup split. Moreover, recent studies have highlighted the importance of validating existing measures for outcome in the autism population [McConachie et al, ; Ayres et al, ; Cottenceau et al, ] so that we can make sure study results inform us on appropriate targets. Future research should replicate these findings in an independent sample, expanding the sample size and input features to establish a valid and clinically viable taxonomy for QoL in ASD.…”

Section: Discussionmentioning

confidence: 99%

Sleep determines quality of life in autistic adults: A longitudinal study

et al. 2019

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Many individuals with autism report generally low quality of life (QoL). Identifying predictors for pathways underlying this outcome is an urgent priority. We aim to examine multivariate patterns that predict later subjective and objective QoL in autistic individuals. Autistic characteristics, comorbid complaints, aspects of daily functioning, and demographics were assessed online in a 2‐year longitudinal study with 598 autistic adults. Regression trees were fitted to baseline data to identify factors that could predict QoL at follow‐up. We found that sleep problems are an important predictor of later subjective QoL, while the subjective experience of a person's societal contribution is important when it comes to predicting the level of daily activities. Sleep problems are the most important predictor of QoL in autistic adults and may offer an important treatment target for improving QoL. Our results additionally suggest that social satisfaction can buffer this association. Autism Research 2019, 12: 794–801. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary Many individuals with autism report generally low quality of life (QoL). In this study, we looked at factors that predict long‐term QoL and found that sleep problems are highly influential. Our results additionally suggest that social satisfaction can buffer this influence. These findings suggest that sleep and social satisfaction could be monitored to increase QoL in autistic adults.

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Enhancing the Validity of a Quality of Life Measure for Autistic People

Cited by 183 publications

References 55 publications

Predictors of quality of life for autistic adults

Predictors of quality of life for autistic adults

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Sleep determines quality of life in autistic adults: A longitudinal study

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