Vers une imagerie par resonance magnetique adaptee a l autisme : exploration des experiences des personnes autistes lors d examens d imagerie par resonance magnetique au Royaume Uni, une enquete transversale

Titre original en anglais : Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Stogiannos, N., Harvey-Lloyd, J. M., Brammer, A., Cleaver, K., McNulty, J. P., dos Reis, C. S., Nugent, B., Simcock, C., O'Regan, T., Bowler, D., Parveen, S., Marais, K., Pavlopoulou, G., Papadopoulos, C., Gaigg, S. B., & Malamateniou, C. (2023). Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey. Autism in Adulthood, 5(3), 248-262. https://doi.org/10.1089/aut.2022.0051

Publication date: 05/01/2023 Ajout dans AutiHub: 18/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
16
Auteur·ices de la publication identifié·es comme autistes
1 / 16 (6,2 %)
  1. Nikolaos Stogiannos
  2. Jane M. Harvey-Lloyd
  3. Andrea Brammer
  4. Karen Cleaver
  5. Jonathan P. McNulty
  6. Cláudia Sá dos Reis
  1. Barbara Nugent
  2. Clare Simcock
  3. Tracy O'Regan
  4. Dermot Bowler
  5. Sophia Parveen
  6. Keith Marais *
  1. Georgia Pavlopoulou
  2. Chris Papadopoulos
  3. Sebastian B. Gaigg
  4. Christina Malamateniou

Résumé

Contexte : Les personnes autistes peuvent subir un examen d imagerie par resonance magnetique (IRM) pour des preoccupations cliniques ou dans le cadre de la recherche. Une stimulation sensorielle accrue, l absence d amenagements environnementaux appropries ou l absence d une communication fluide dans la salle d IRM peuvent poser des difficultes aux patients autistes et rendre les examens d IRM inaccessibles. Cette etude visait a : (i) explorer les experiences d examens d IRM d adultes autistes au Royaume Uni ; (ii) identifier les obstacles et les facilitateurs d examens d IRM reussis et surs ; (iii) evaluer la satisfaction des personnes autistes a l egard du service d IRM ; et (iv) eclairer de futures recommandations visant a ameliorer les pratiques. Methodes : Nous avons diffuse une enquete en ligne aupres de la communaute autiste sur les reseaux sociaux, en utilisant un echantillonnage en boule de neige. Les criteres d inclusion etaient les suivants : etre age de plus de 16 ans, avoir un diagnostic d autisme ou un autodiagnostic, declarer soi meme avoir la capacite de consentir et avoir subi un examen d IRM au Royaume Uni. Nous avons utilise des statistiques descriptives pour les donnees demographiques, des statistiques inferentielles pour les comparaisons et correlations entre groupes, et une analyse de contenu pour les donnees qualitatives. Resultats : Nous avons recu 112 reponses. Au total, 29,6 % des repondants ont declare ne pas avoir recu d informations avant l examen. La plupart des participants (68 %) ont confirme que les radiographes avaient fourni des informations detaillees le jour de l examen, mais seuls 17,1 % ont indique que les radiographes avaient propose des amenagements environnementaux raisonnables. Seuls 23,2 % d entre eux ont confirme avoir revele leur identite autiste lors de la prise de rendez vous pour l examen d IRM. Nous avons constate que la qualite de la communication, l environnement physique, les emotions des patients, la formation du personnel et des facteurs societaux confondants avaient une incidence sur leurs experiences d IRM. Les personnes autistes ont evalue leur experience globale de l IRM comme neutre et ont signale des niveaux eleves de claustrophobie (44,8 %). Conclusion : Cette etude a mis en evidence un manque de communication efficace et de coordination des soins, soit entre les services de sante, soit entre les patients et les radiographes, ainsi qu un manque d amenagements raisonnables, elements essentiels pour rendre les examens d IRM plus accessibles et centres sur la personne pour les personnes autistes. Les facilitateurs d examens reussis comprenaient une communication efficace, un environnement d IRM adapte, des examens adaptes aux besoins et preferences des personnes, et un personnel bien forme.

Background: Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments, or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed at (i) exploring the MRI scan experiences of autistic adults in the United Kingdom; (ii) identifying barriers and enablers toward successful and safe MRI examinations; (iii) assessing autistic individuals' satisfaction with MRI service; and (iv) informing future recommendations for practice improvement. Methods: We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent, and having had an MRI scan in the United Kingdom. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data. Results: We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination, but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training, and confounding societal factors impacted their MRI experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%). Conclusion: This study highlighted a lack of effective communication and coordination of care, either between health care services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centered MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals' needs/preferences, and well-trained staff.

Bibliographie citée par cette référence

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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 : 20/09/2026 01:01.

Références citées
87
Avec un DOI
82
Sans DOI, à partir du texte brut de la bibliographie
5
10 / 87 (11,5 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
2 / 87 (2,3 %)
Références avec noms d’auteurices détectés
85 / 87 (97,7 %)
Sans nom d’auteurice détecté
2
Sans titre structuré
2
Sans identifiant stable
4
Références avec noms bruts d’auteurices restant à vérifier
2
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
386
À partir du DOI ou de métadonnées externes
386
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
4
108 / 386 (28,0 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 278 / 386 (72,0 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
31 / 386 (8,0 %)
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 : 31 / 108 (28,7 %). Personnes distinctes identifiées comme autistes : 16 / 336 (4,8 %).
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