Une revue réaliste des passeports de santé pour les adultes autistes

Titre original en anglais : A realist review of health passports for Autistic adults

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». trois auteur·ices de cette publication sont identifié·es comme autistes dans le projet.

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Ellis, R., Williams, K., Brown, A., Healer, E., & Grant, A. (2023). A realist review of health passports for Autistic adults. PLOS ONE, 18(9), e0279214. https://doi.org/10.1371/journal.pone.0279214

Titre de la revue ou du livre
PLoS ONE
Éditeur
Public Library of Science (PLoS)
Volume
18
Problème
9
Pages
e0279214
Responsables éditoriaux de l’ouvrage
Ali B. Mahmoud
Date de publication: 08/09/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
3 / 5 (60,0 %)
  1. Rebecca Ellis *
  2. Kathryn Williams *
  3. Amy Brown
  4. Eleanor Healer
  5. Aimee Grant *

Résumé

CONTEXTE : L’autisme est une composante normale de la diversité cognitive, entraînant des différences de communication et de traitement sensoriel, qui peuvent devenir invalidantes dans un monde neurotypique. Les personnes autistes présentent une probabilité accrue d’affections physiques et mentales concomitantes et meurent plus tôt que leurs pairs neurotypiques. Des soins de santé inaccessibles peuvent y contribuer. Les passeports de santé pour l’autisme (AHPs) sont des outils sur papier ou numériques qui peuvent être utilisés pour décrire les besoins en matière d’accessibilité des soins de santé ; ils sont recommandés dans les recommandations cliniques britanniques. Cependant, des questions subsistaient quant aux fondements théoriques et à l’efficacité des AHPs. MÉTHODES : Nous avons entrepris une recherche systématique de la littérature afin d’identifier des études portant sur les AHPs destinés aux adultes (âgés de plus de 16 ans) dans cinq bases de données. La littérature incluse a fait l’objet d’une évaluation réaliste. Les données ont été extraites à l’aide d’un formulaire standardisé, élaboré par l’équipe de recherche, qui prenait en compte le plan de recherche, la qualité des études pour la revue réaliste et les Contextes, Mécanismes et Résultats (CMOs) associés à chaque outil AHP. RÉSULTATS : 162 documents uniques ont été identifiés, et 13 éléments ont été inclus dans la revue. Un seul élément a été considéré comme étant de haute qualité. Les facteurs contextuels portaient sur l’inaccessibilité des soins de santé pour les patients autistes ainsi que sur le manque de confiance et de formation du personnel pour répondre aux besoins des personnes autistes. Les interventions étaient hétérogènes, la plupart des sources rapportant peu de détails quant à la manière dont elles avaient été élaborées. Les contenus le plus fréquemment inclus concernaient les préférences de communication. Les mécanismes n’étaient souvent pas énoncés ou étaient déduits par les examinateurs et manquaient de spécificité. Les résultats étaient inclus dans quatre études et portaient principalement sur l’adoption des AHPs, plutôt que sur des Résultats mesurant l’impact. CONCLUSION : Les données probantes sont insuffisantes pour conclure que les AHPs réduisent les inégalités de santé vécues par les personnes autistes. L’utilisation d’un outil AHP seul dans un Contexte de soins de santé qui ne répond pas aux besoins des personnes autistes, sans l’inclusion de la communauté autiste locale dans l’élaboration de l’outil, et sans une intervention plus large visant à réduire les obstacles connus aux inégalités de santé, peut signifier que les AHPs ne déclenchent aucun Mécanisme et ne peuvent donc pas affecter les Résultats.

BACKGROUND: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. METHODS: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. FINDINGS: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. CONCLUSION: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 02/10/2026 17:07.

Références citées
80
Avec un DOI
56
Sans DOI, à partir du texte brut de la bibliographie
23
11 / 80 (13,8 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
20 / 80 (25,0 %)
Références avec noms d’auteurices détectés
60 / 80 (75,0 %)
Sans nom d’auteurice détecté
20
Sans titre structuré
20
Sans identifiant stable
22
Références avec noms bruts d’auteurices restant à vérifier
20
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
316
À partir du DOI ou de métadonnées externes
316
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
26
80 / 316 (25,3 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 236 / 316 (74,7 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
24 / 316 (7,6 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 24 / 80 (30,0 %). Personnes distinctes identifiées comme autistes : 19 / 283 (6,7 %).
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