Mesure des résultats hautement prioritaires chez les adultes autistes : évaluation psychométrique initiale des instruments de la boîte à outils de mesure AASPIRE

Titre original en anglais : Measuring High-Priority Outcomes in Autistic Adults: Initial psychometric assessment of the instruments in the AASPIRE Measurement Toolkit

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Nicolaidis, C., Raymaker, D. M., Baker-Ericzén, M., Rosa, S. D. R., Edwards, T., Frowner, E., Horner-Johnson, W., Joyce, A., Kapp, S. K., Kripke, C., Taylor, J. L., Love, J., Kripke-Ludwig, R., Maslak, J., McDonald, K., Moura, I., Scharer, M., Siddeek, Z., Smith, Y.,..., & Chaiyachakorn, N. (2026). Measuring High-Priority Outcomes in Autistic Adults: Initial psychometric assessment of the instruments in the AASPIRE Measurement Toolkit [Preprint]. openRxiv. https://doi.org/10.64898/2026.03.23.26349108

Date de publication: 25/03/2026 Ajout dans AutiHub: 06/07/2026 Type: Prépublication Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
24
Auteur·ices de la publication identifié·es comme autistes
3 / 24 (12,5 %)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Mary Baker-Ericzén
  4. Shannon Des Roches Rosa
  5. Todd Edwards
  6. Emanuel Frowner
  7. Willi Horner-Johnson
  8. Andrea Joyce
  1. Steven K. Kapp *
  2. Clarissa Kripke
  3. Julie Lounds Taylor
  4. Julia Love
  5. Rachel Kripke-Ludwig
  6. Joelle Maslak *
  7. Katherine McDonald
  8. Ian Moura
  1. Mirah Scharer
  2. Zack Siddeek
  3. Yvanova Smith
  4. Joseph Vera
  5. Anna Wallington
  6. Liu-Qin Yang
  7. KJ Flores
  8. N Chaiyachakorn

Résumé

Contexte : La recherche sur les services destinés aux adultes autistes est entravée par un manque de mesures de résultats accessibles et auto-rapportées. Le projet AASPIRE Outcomes a utilisé une approche de recherche participative fondée sur la communauté (CBPR) afin de créer et de tester l’AASPIRE Measurement Toolkit, un ensemble d’instruments d’enquête accessibles destinés à être utilisés dans des contextes réels. La boîte à outils principale contient 12 modules portant sur les caractéristiques et 19 mesures de résultats, chacune comprenant une version auto-rapportée et une version rapportée par un aidant. Méthodes : Nous avons utilisé notre processus Delphi intégré à la CBPR, notre processus collaboratif d’adaptation/de création d’instruments et des entretiens cognitifs afin de garantir l’accessibilité et la validité de contenu. Nous avons ensuite mené une enquête longitudinale afin de valider les mesures de résultats auprès d’un échantillon pragmatique de 870 adultes autistes issus de deux systèmes de soins de santé, de deux systèmes de services aux personnes handicapées et de la communauté autiste au sens large aux États-Unis. Les participants ont rempli les enquêtes à trois moments sur une période de 12 à 18 mois. Un sous-échantillon aléatoire de 15 % a rempli une enquête supplémentaire de retest deux semaines après le deuxième temps de mesure. Nous avons évalué : 1) l’accessibilité à l’aide des taux de complétion et de la facilité d’utilisation perçue ; 2) la cohérence interne à l’aide des alphas et des omégas de Cronbach ; 3) la validité convergente à l’aide des corrélations de Pearson ; 4) la fidélité test-retest à deux semaines à l’aide des coefficients de corrélation intraclasse ; et 5) la sensibilité au changement à six mois en comparant le changement auto-perçu avec le changement des scores. Résultats : Plus de 90 % des participants ont indiqué que les items de l’enquête étaient faciles à comprendre. Tous les instruments présentaient d’excellents taux de complétion (moins de 5 % des participants avaient plus de 10 % d’items manquants). Les mesures de résultats et leurs sous-échelles prédéterminées ont démontré une forte validité de contenu, une forte fidélité de cohérence interne, une forte fidélité test-retest, une forte validité convergente et discriminante, ainsi qu’une forte sensibilité au changement. Conclusion : Les 19 mesures de résultats de l’AASPIRE Measurement Toolkit sont accessibles et présentent de solides propriétés psychométriques initiales. Nous rendrons compte séparément d’évaluations approfondies supplémentaires pour chaque mesure. Tous les instruments sont disponibles gratuitement et peuvent aider les cliniciens, les prestataires de services, les organisations de défense des droits et les chercheurs à évaluer l’efficacité des interventions et à suivre l’évolution des résultats au fil du temps.

Background: Adult autism services research is hampered by a lack of accessible self-reported outcome measures. The AASPIRE Outcomes Project used a community-based participatory research (CBPR) approach to create and test the AASPIRE Measurement Toolkit, a set of accessible survey instruments for use in real-world settings. The core toolkit contains 12 characteristics modules and 19 outcome measures, each with self-reported and caregiver-reported versions. Methods: We used our CBPR-nested Delphi process, our collaborative instrument adaptation/creation process, and cognitive interviews to ensure accessibility and content validity. We then conducted a longitudinal survey to validate the outcome measures in a pragmatic sample of 870 autistic adults from two healthcare systems, two disability service systems, and the larger autistic community in the United States. Participants completed surveys at 3 time points over 12-18 months. A 15% random subset completed an additional retest survey 2 weeks after the second time point. We assessed 1) accessibility using completion rates and perceived ease of use; 2) internal consistency using Cronbach’s alphas and omegas; 3) convergent validity using Pearson’s correlations; 4) two-week test-retest reliability using interclass correlation coefficients; and 5) six-month responsiveness to change by comparing self-perceived change with change in scores. Results: Over 90% of participants reported the survey items were easy to understand. All instruments had excellent completion rates (<5% of participants were missing >10% of items). The outcome measures and their pre-determined subscales demonstrated strong content validity, internal consistency reliability, test-retest reliability, convergent and discriminant validity, and responsiveness to change. Conclusion: The 19 outcome measures in the AASPIRE Measurement Toolkit are accessible and have strong initial psychometric properties. We will report additional in-depth assessments separately for each measure. All instruments are available for free and can help clinicians, service providers, advocacy organizations, and researchers assess the effectiveness of interventions and follow changes in outcomes over time.

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Vue d’ensemble de l’inclusion dans la bibliographie

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 11:30.

Références citées
76
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
18 / 76 (23,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
50 / 465 (10,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 50 / 255 (19,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 22 / 363 (6,1 %).
Occurrences citées rattachées à la base AutiHub
255 / 465 (54,8 %)
Auteurices cité·es distinct·es rattaché·es : 159 / 363 (43,8 %)
Occurrences rattachées, non identifiées comme autistes
205 / 255 (80,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 205 / 465 (44,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 137 / 159 (86,2 %).
2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
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