Un contexte hostile, une theorie d'intervention tres limitee et presque aucun changement des resultats : conclusions d'une revue realiste systematique des passeports de sante pour adultes autistes

Titre original en anglais : A hostile context, very limited intervention theory and almost no change in outcomes: findings from a systematic realist review of health passports for Autistic adults

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Ellis, R., Williams, K., Brown, A., Healer, E., & Grant, A. (2022). A hostile context, very limited intervention theory and almost no change in outcomes: findings from a systematic realist review of health passports for Autistic adults [Preprint]. openRxiv. https://doi.org/10.1101/2022.12.04.22283076

Date de publication: 05/12/2022 Ajout dans AutiHub: 05/07/2026 Type: Prépublication Langue de l’article: Anglais
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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

Resume Contexte L'autisme est une partie normale de la diversite cognitive, entrainant des differences dans la communication et le traitement sensoriel, qui peuvent devenir handicapantes dans un monde neurotypique. Les personnes autistes ont une probabilite accrue de presenter des affections physiques et mentales concomitantes et decedent plus tot que leurs pairs neurotypiques. Des soins de sante inaccessibles peuvent y contribuer. Les passeports de sante pour l'autisme (AHP) sont des outils sur papier ou numeriques qui peuvent etre utilises pour decrire les besoins en matiere d'accessibilite des soins de sante ; ils sont recommandes dans les recommandations cliniques du Royaume-Uni. Cependant, des questions subsistaient quant aux fondements theoriques et a l'efficacite des AHP. Methodes Nous avons entrepris une recherche systematique de la litterature, identifiant dans cinq bases de donnees des etudes centrees sur les AHP destines aux adultes (ages de plus de 16 ans). La litterature incluse a fait l'objet d'une evaluation realiste. Les donnees ont ete extraites a l'aide d'un formulaire standardise, elabore par l'equipe de recherche, qui prenait en compte le plan de recherche, la qualite de l'etude pour une revue realiste et les Contextes, Mecanismes et Resultats (CMO) associes a chaque outil AHP. Resultats 162 dossiers uniques ont ete identifies et 13 elements ont ete inclus dans la revue. Un seul element a ete considere comme etant de haute qualite. Les facteurs contextuels portaient sur l'inaccessibilite des soins de sante aux patients autistes ainsi que sur le manque de confiance et de formation du personnel pour repondre aux besoins des personnes autistes. Les interventions etaient heterogenes, la plupart des sources rapportant peu de details sur la maniere dont elles avaient ete elaborees. Les contenus les plus frequemment inclus concernaient les preferences de communication. Les mecanismes n'etaient souvent pas indiques ou etaient deduits par les evaluateurs et manquaient de specificite. Les resultats etaient inclus dans quatre etudes et portaient principalement sur l'adoption des AHP, plutot que sur des resultats mesurant l'impact. Conclusion Les preuves sont insuffisantes pour conclure que les AHP reduisent les inegalites de sante vecues par les personnes autistes. L'utilisation d'un outil AHP seul, sans l'inclusion de la communaute autiste locale dans l'elaboration de l'outil, et sans une intervention plus large, telle que la formation du personnel ou le recours a des champions locaux, peut signifier que les AHP ne declenchent aucun mecanisme et ne peuvent donc pas affecter les resultats.

Abstract 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 C ontext, M echanisms and O utcomes ( 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. I nterventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. M echanisms were often not stated or were inferred by the reviewers and lacked specificity. O utcomes were included in four studies and were primarily focused on AHP uptake, rather than O utcomes 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, without the inclusion of the local Autistic community developing the tool, and a wider intervention, such as training for staff or the use of local champions, may mean that AHPs do not trigger any M echanisms, and thus cannot affect O utcomes.

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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
67
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
3 / 67 (4,5 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
9 / 256 (3,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 9 / 57 (15,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 236 (2,5 %).
Occurrences citées rattachées à la base AutiHub
57 / 256 (22,3 %)
Auteurices cité·es distinct·es rattaché·es : 41 / 236 (17,4 %)
Occurrences rattachées, non identifiées comme autistes
48 / 57 (84,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 48 / 256 (18,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 35 / 41 (85,4 %).
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