Évaluation de la qualité de vie générale et pertinente pour l’autisme chez les adultes autistes : une étude psychométrique utilisant la théorie de réponse à l’item

Titre original en anglais : Assessing general and autism‐relevant quality of life in autistic adults: A psychometric investigation using item response theory

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Williams, Z. J. & Gotham, K. (2021). Assessing general and autism‐relevant quality of life in autistic adults: A psychometric investigation using item response theory. Autism Research, 14(8), 1633-1644. https://doi.org/10.1002/aur.2519

Date de publication: 19/04/2021 Ajout dans AutiHub: 07/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
2
Auteur·ices de la publication identifié·es comme autistes
1 / 2 (50,0 %)
  1. Zachary J. Williams *
  2. Katherine Gotham

Résumé

Bien que de nombreuses interventions et services destinés aux personnes autistes aient pour objectif ultime d’améliorer la qualité de vie (QoL), il existe relativement peu de recherches sur la meilleure façon d’évaluer ce construit dans la population autiste, et les échelles existantes conçues pour des personnes non autistes peuvent ne pas évaluer toutes les facettes significatives de la QoL dans la population autiste. Pour répondre à ce besoin, le formulaire de qualité de vie du spectre de l’autisme (ASQoL) a récemment été élaboré comme mesure de la qualité de vie pertinente pour l’autisme. Cependant, les propriétés psychométriques de l’ASQoL n’ont pas été examinées au-delà de l’étude de validation initiale des auteurs, et des propriétés importantes telles que l’invariance de mesure/le fonctionnement différentiel des items (DIF) n’ont pas encore été testées. À partir de données provenant de 700 adultes autistes recrutés dans la cohorte SPARK de la Simons Foundation, la présente étude visait à réaliser une évaluation psychométrique indépendante et complète de l’ASQoL à l’aide de la théorie de réponse à l’item, en comparant sa performance à une mesure brève nouvellement proposée de la QoL générale (le WHOQOL-4). Nos modèles ont révélé un DIF substantiel selon le sexe et le genre dans l’ASQoL, ce qui a conduit les scores de l’ASQoL à sous-estimer fortement la QoL autodéclarée des femmes autistes. Sur la base d’une comparaison des moyennes de variables latentes, nous avons démontré que les différences observées selon le sexe/le genre dans les scores manifestes de l’ASQoL résultaient d’artefacts statistiques, une affirmation qui a été davantage étayée par l’absence de différences significatives entre les groupes au WHOQOL-4 invariant selon le sexe/le genre. Nos résultats indiquent que le score composite de l’ASQoL est psychométriquement problématique dans sa forme actuelle, et que des révisions substantielles pourraient être nécessaires avant que des inférences valides et significatives puissent être faites concernant les aspects de la QoL pertinents pour l’autisme. RÉSUMÉ GRAND PUBLIC : La qualité de vie (QoL) est un résultat extrêmement important pour les personnes autistes, mais beaucoup des outils utilisés pour la mesurer ne tiennent pas compte de la manière dont la QoL peut être différente pour les personnes autistes. À partir de données provenant de 700 adultes autistes, nous avons examiné les propriétés de mesure du formulaire de qualité de vie du spectre de l’autisme (ASQoL), une nouvelle mesure de la QoL conçue spécifiquement pour les personnes autistes. Nos résultats indiquent que l’ASQoL présente un biais marqué selon le sexe/le genre, ce qui l’amène à sous-estimer la QoL chez les femmes autistes. Ce biais doit être éliminé avant que l’ASQoL puisse être utilisé avec succès pour mesurer la QoL dans la population autiste.

Although many interventions and services for autistic people have the ultimate goal of improving quality of life (QoL), there is relatively little research on how best to assess this construct in the autistic population, and existing scales designed for non-autistic individuals may not assess all meaningful facets of QoL in the autistic population. To address this need, the autism spectrum QoL form (ASQoL) was recently developed as a measure of the autism-relevant quality of life. However, the psychometrics of the ASQoL have not been examined beyond the authors' initial validation study, and important properties such as measurement invariance/differential item functioning (DIF) have not yet been tested. Using data from 700 autistic adults recruited from the Simons Foundation's SPARK cohort, the current study sought to perform a comprehensive independent psychometric evaluation of the ASQoL using item response theory, comparing its performance to a newly-proposed brief measure of general QoL (the WHOQOL-4). Our models revealed substantial DIF by sex and gender in the ASQoL, which caused ASQoL scores to grossly underestimate the self-reported QoL of autistic women. Based on a comparison of latent variable means, we demonstrated that observed sex/gender differences in manifest ASQoL scores were the result of statistical artifacts, a claim that was further supported by the lack of significant group differences on the sex/gender-invariant WHOQOL-4. Our findings indicate that the ASQoL composite score is psychometrically problematic in its current form, and substantial revisions may be necessary before valid and meaningful inferences can be made regarding autism-relevant aspects of QoL. LAY SUMMARY: Quality of life (QoL) is an extremely important outcome for autistic people, but many of the tools that are used to measure it does not take into account how QoL may be different for autistic people. Using data from 700 autistic adults, we examined the measurement properties of the autism spectrum quality of life form (ASQoL), a new measure of QoL designed specifically for autistic people. Our results indicate that the ASQoL shows a pronounced sex/gender bias, which causes it to underestimate QoL in autistic women. This bias needs to be eliminated before the ASQoL can be successfully used to measure QoL in the autistic population.

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Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:31.

Références citées
75
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 75 (10,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
8 / 425 (1,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 8 / 68 (11,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 3 / 401 (0,7 %).
Occurrences citées rattachées à la base AutiHub
68 / 425 (16,0 %)
Auteurices cité·es distinct·es rattaché·es : 48 / 401 (12,0 %)
Occurrences rattachées, non identifiées comme autistes
60 / 68 (88,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 60 / 425 (14,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 45 / 48 (93,8 %).
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