Comparaison des expériences de soins de santé chez des adultes autistes et non autistes : une enquête transversale en ligne facilitée par un partenariat entre le milieu universitaire et la communauté

Titre original en anglais : Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

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Nicolaidis, C., Raymaker, D. M., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2012). Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership. Journal of General Internal Medicine, 28(6), 761-769. https://doi.org/10.1007/s11606-012-2262-7

Date de publication: 20/11/2012 Ajout dans AutiHub: 04/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
3 / 7 (42,9 %)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Katherine McDonald
  4. Sebastian Dern
  1. W. Cody Boisclair *
  2. Elesia Ashkenazy *
  3. Amanda Baggs

Résumé

CONTEXTE : On sait peu de choses sur les expériences de soins de santé des adultes autistes. De plus, les adultes autistes ont rarement été inclus en tant que partenaires dans la recherche sur l'autisme. OBJECTIF : Comparer les expériences de soins de santé d'adultes autistes et non autistes au moyen d'une enquête en ligne. MÉTHODES : Nous avons utilisé une approche de recherche participative communautaire (CBPR) pour adapter les instruments d'enquête afin qu'ils soient accessibles aux adultes autistes et pour mener une enquête transversale en ligne. Nous avons évalué des données psychométriques préliminaires sur les échelles adaptées. Nous avons utilisé des analyses multivariées pour comparer les expériences de soins de santé des participants autistes et non autistes. RÉSULTATS : Quatre cent trente-sept participants ont rempli l'enquête (209 autistes, 228 non autistes). Toutes les échelles adaptées présentaient une fiabilité de cohérence interne bonne à excellente (alpha 0.82-0.92) et une forte validité de construit. Dans les analyses multivariées, après ajustement en fonction des caractéristiques démographiques, de l'assurance maladie et de l'état de santé général, les adultes autistes ont rapporté une satisfaction moindre à l'égard de la communication entre patient et prestataire de soins (coefficient beta -1.9, IC -2.9 à -0.9), de l'auto-efficacité générale en matière de soins de santé (coefficient beta -11.9, IC -14.0 à -8.6) et de l'auto-efficacité face aux affections chroniques (coefficient beta -4.5, IC -7.5 à -1.6) ; des probabilités plus élevées de besoins de soins de santé non satisfaits liés à la santé physique (OR 1.9, IC 1.1-3.4), à la santé mentale (OR 2.2, IC 1.3-3.7) et aux médicaments sur ordonnance (OR 2.8, IC 2.2-7.5) ; des taux autodéclarés plus faibles de vaccination antitétanique (OR 0.5, IC 0.3-0.9) et de frottis de Papanicolaou (OR 0.5, IC 0.2-0.9) ; et des probabilités plus élevées de recourir au service des urgences (OR 2.1, IC 1.8-3.8). CONCLUSION : Une approche CBPR peut faciliter l'inclusion des personnes handicapées dans la recherche en accroissant la capacité des chercheurs à créer des instruments de collecte de données accessibles. Les adultes autistes qui utilisent Internet rapportent connaître des disparités importantes en matière de soins de santé. Des efforts sont nécessaires pour améliorer les soins de santé des personnes autistes, y compris des personnes qui peuvent potentiellement être perçues comme ayant moins de besoins liés au handicap.

BACKGROUND: Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research. OBJECTIVE: To compare the healthcare experiences of autistic and non-autistic adults via an online survey. METHODS: We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants. RESULTS: Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82-0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient -1.9, CI -2.9 to -0.9), general healthcare self-efficacy (beta coefficient -11.9, CI -14.0 to -8.6), and chronic condition self-efficacy (beta coefficient -4.5, CI -7.5 to -1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1-3.4), mental health (OR 2.2, CI 1.3-3.7), and prescription medications (OR 2.8, CI 2.2-7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3-0.9) and Papanicolaou smears (OR 0.5, CI 0.2-0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8-3.8). CONCLUSION: A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers' ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.

Bibliographie citée par cette référence

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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
86
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
4 / 86 (4,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
10 / 246 (4,1 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 10 / 36 (27,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 223 (2,7 %).
Occurrences citées rattachées à la base AutiHub
36 / 246 (14,6 %)
Auteurices cité·es distinct·es rattaché·es : 26 / 223 (11,7 %)
Occurrences rattachées, non identifiées comme autistes
26 / 36 (72,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 26 / 246 (10,6 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 20 / 26 (76,9 %).
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