Mesure de la qualite de vie dans les essais controles randomises d'interventions en sante mentale destinees aux adultes autistes : une revue systematique

Titre original en anglais : Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review

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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Timmerman, A., Totsika, V., Lye, V., Crane, L., Linden, A., & Pellicano, E. (2024). Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review. Autism, 29(3), 579-595. https://doi.org/10.1177/13623613241287586

Date de publication: 22/10/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
1 / 6 (16,7 %)
  1. Amanda Timmerman *
  2. Vasiliki Totsika
  3. Valerie Lye
  1. Laura Crane
  2. Audrey Linden
  3. Elizabeth Pellicano

Résumé

Les personnes autistes sont plus susceptibles de presenter des troubles de sante mentale concomitants que la population generale, et les interventions en sante mentale ont ete identifiees comme une priorite majeure de recherche par les personnes autistes et l'ensemble de la communaute de l'autisme. Les adultes autistes ont egalement indique que la qualite de vie est le resultat qui compte le plus pour eux dans le cadre de la recherche en sante mentale et qu'ils souhaitent etre impliques plus activement dans le processus de recherche. Notre revue systematique visait a determiner l'etendue et la nature de (1) la mesure de la qualite de vie dans les essais controles randomises d'interventions en sante mentale destinees aux adultes autistes et (2) l'implication de la communaute au sein des essais controles randomises identifies. Nous avons effectue des recherches dans Medline, Embase, APA PsycInfo, Web of Science et des sources de litterature grise. Apres avoir examine plus de 10 000 references, 19 etudes etaient admissibles et cinq de ces etudes ont mesure la qualite de vie comme resultat. Parmi ces cinq etudes, trois comprenaient une implication de la communaute et deux ne rendaient pas compte de l'implication de la communaute. Nous concluons qu'il est necessaire d'accroitre l'utilisation de la mesure de la qualite de vie lors de l'evaluation d'interventions en sante mentale, y compris par l'utilisation de mesures validees pour les adultes autistes, ce qui serait facilite par une plus grande implication des personnes autistes dans le processus de recherche. Resume destine au grand public Les personnes autistes sont plus susceptibles d'avoir des problemes de sante que la population generale. Elles, ainsi que les personnes qui se soucient d'elles, ont indique que la recherche en sante mentale est tres importante, et certains adultes autistes ont declare que la qualite de vie est le domaine le plus utile a etudier lorsque l'on se concentre sur la sante mentale. Les personnes autistes devraient egalement etre plus profondement impliquees dans la prise de decisions en recherche. Notre revue visait a determiner si et comment la qualite de vie est mesuree lorsque des traitements en sante mentale sont testes, et comment les personnes autistes et l'ensemble de la communaute de l'autisme sont impliques dans ces etudes. Nous avons recherche dans quatre bases de donnees et d'autres sources et avons trouve plus de 10 000 references. Mais seulement 19 etudes de recherche testaient des traitements en sante mentale pour des adultes autistes, et seulement cinq d'entre elles mesuraient la qualite de vie. Lorsqu'elles mesuraient la qualite de vie, celle-ci etait mesuree de differentes manieres et peu d'informations etaient fournies sur la facon dont les communautes etaient impliquees. Nous suggerons que la recherche en sante mentale devrait mesurer plus souvent la qualite de vie et de manieres plus utiles pour les personnes autistes. Notre analyse a montre que la recherche en sante mentale doit inclure une plus grande diversite de personnes autistes, et que les personnes autistes devraient etre davantage impliquees dans les diverses etapes de la recherche.

Autistic people are more likely to have co-occurring mental health conditions compared to the general population, and mental health interventions have been identified as a top research priority by autistic people and the wider autism community. Autistic adults have also communicated that quality of life is the outcome that matters most to them in relation to mental health research and that they want to be involved more actively in the research process. Our systematic review aimed to determine the extent and nature of (1) quality of life measurement in randomised controlled trials of mental health interventions for autistic adults and (2) community involvement taking place within identified randomised controlled trials. We searched Medline, Embase, APA PsycInfo, Web of Science and grey literature sources. After screening over 10,000 records, 19 studies were eligible and five of those studies measured quality of life as an outcome. Of those five, three included community involvement and two did not report on community involvement. We conclude there is a need for increased use of quality of life measurement when trialling mental health interventions, including the use of measures validated for autistic adults - which would be facilitated by greater autistic involvement in the research process.Lay AbstractAutistic people are more likely to have health problems than the general population. They, and people who care about them, have said mental health research is very important, and some autistic adults have said quality of life is the most helpful area to research when focusing on mental health. Autistic people should also be more deeply involved in making decisions in research. Our review aimed to find out if and how quality of life is being measured when mental health treatments are being tested, and how autistic people and the wider autism community are involved in these studies. We searched four databases and other sources and found over 10,000 records. But just 19 research studies were testing mental health treatments for autistic adults, and only five of those measured quality of life. When they did measure quality of life, it was measured in different ways and there was not much information given on how communities were involved. We suggest mental health research should measure quality of life more often and in ways that are more helpful for autistic people. Our analysis found that mental health research needs to include a wider variety of autistic people, and autistic people should be more involved in the various parts of research.

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 : 02/10/2026 16:12.

Références citées
106
Avec un DOI
96
Sans DOI, à partir du texte brut de la bibliographie
10
28 / 106 (26,4 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
8 / 106 (7,5 %)
Références avec noms d’auteurices détectés
98 / 106 (92,5 %)
Sans nom d’auteurice détecté
8
Sans titre structuré
8
Sans identifiant stable
9
Références avec noms bruts d’auteurices restant à vérifier
8
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
630
À partir du DOI ou de métadonnées externes
630
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
17
311 / 630 (49,4 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 319 / 630 (50,6 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
69 / 630 (11,0 %)
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 : 69 / 311 (22,2 %). Personnes distinctes identifiées comme autistes : 47 / 521 (9,0 %).
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