La mesure est importante : commentaire sur l'état de la science des mesures des résultats rapportés par les patients (PROMs) dans la recherche sur l'autisme

Titre original en anglais : Measurement matters: A commentary on the state of the science on patient reported outcome measures ( PROMs ) in autism research

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Schiltz, H. K., Williams, Z. J., Zheng, S., Kaplan‐Kahn, E. A., Morton, H. E., Rosenau, K. A., Nicolaidis, C., Sturm, A., Lord, C., & PROMnet, A. (2024). Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs ) in autism research. Autism Research, 17(4), 690-701. https://doi.org/10.1002/aur.3114

Date de publication: 01/03/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
10
Auteur·ices de la publication identifié·es comme autistes
2 / 10 (20,0 %)
  1. Hillary K. Schiltz
  2. Zachary J. Williams *
  3. Shuting Zheng
  4. Elizabeth A. Kaplan‐Kahn
  5. Hannah E. Morton *
  1. Kashia A Rosenau
  2. Christina Nicolaidis
  3. Alexandra Sturm
  4. Catherine Lord
  5. Autism PROMnet

Résumé

Une science de haute qualité repose sur des mesures psychométriquement valides et fiables, mais très peu de mesures des résultats rapportés par les patients (PROMs) ont été développées ou rigoureusement validées pour une utilisation auprès de personnes autistes. Le présent commentaire résume l'état actuel de la science des PROMs dans l'autisme, sur la base des discussions du groupe d'intérêt spécial (SIG) lors de la réunion annuelle 2022 de l'International Society for Autism Research (INSAR) et de l'expertise collective des auteurs. Premièrement, nous identifions les problèmes actuels de la recherche sur les PROMs dans l'autisme, notamment l'opérationnalisation du contenu et des construits, la structure des informateurs, l'accessibilité des mesures, ainsi que la validation et la généralisation des mesures. Nous énumérons ensuite les obstacles à la réalisation et à la diffusion de cette recherche, tels que le manque d'orientations, les préoccupations concernant le financement et le temps, le manque de formations accessibles et de professionnels possédant des compétences en psychométrie, les difficultés à recueillir de grands échantillons représentatifs et les difficultés liées à la diffusion. Enfin, nous proposons des priorités et des ressources futures pour améliorer les PROMs dans la recherche sur l'autisme, notamment la nécessité de poursuivre l'évaluation et le développement de PROMs pour les personnes autistes à l'aide de méthodes robustes, de donner la priorité à des échantillons diversifiés et représentatifs, d'élargir l'éventail des propriétés et techniques psychométriques, et d'envisager l'élaboration de lignes directrices propres au domaine. Nous restons extrêmement optimistes quant aux orientations futures de ce domaine de recherche sur l'autisme. Ce travail est bien placé pour avoir un impact positif immense sur notre compréhension scientifique de l'autisme et sur la vie quotidienne des personnes autistes et de leurs familles.

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.

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Références citées
98
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
10 / 98 (10,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
30 / 718 (4,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 30 / 199 (15,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 19 / 627 (3,0 %).
Occurrences citées rattachées à la base AutiHub
199 / 718 (27,7 %)
Auteurices cité·es distinct·es rattaché·es : 143 / 627 (22,8 %)
Occurrences rattachées, non identifiées comme autistes
169 / 199 (84,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 169 / 718 (23,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 124 / 143 (86,7 %).
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