Élaboration d’une mesure de résultats par échelle d’atteinte des objectifs (GAS) pour les études interventionnelles cliniques dans l’autisme pédiatrique

Titre original en anglais : Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism

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Staunton, H., McIver, T., Tillmann, J., Clinch, S., Hanrahan, V., Ewens, B., Averius, C., Barsdorf, A. I., Baranger, A., Berry‐Kravis, E., Charman, T., Neerland, H., Singer, A., Ventola, P., Williams, Z. J., & Barrett, L. (2025). Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism. Autism, 29(12), 2975-2990. https://doi.org/10.1177/13623613251349904

Date de publication: 25/06/2025 Ajout dans AutiHub: 07/07/2026 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. Hannah Staunton
  2. Tammy McIver
  3. Julian Tillmann
  4. Susanne Clinch
  5. Vivienne Hanrahan
  6. Bethany Ewens
  1. Caroline Averius
  2. Alexandra I. Barsdorf
  3. Aurélie Baranger
  4. Elizabeth Berry‐Kravis
  5. Tony Charman
  6. Haraldt Neerland
  1. Alison Singer
  2. Pamela Ventola
  3. Zachary J. Williams *
  4. Louise Barrett

Résumé

Les évaluations existantes des résultats cliniques (COA) présentent des limites pour saisir les effets des traitements dans l’autisme chez les personnes qui choisissent de participer à la recherche clinique. Certaines COA comprennent des items qui ne sont pas pertinents ou tout aussi importants pour toutes les personnes autistes ; d’autres ne sont pas suffisamment exhaustives. L’échelle d’atteinte des objectifs (GAS), qui mesure les expériences individuelles par rapport à des objectifs personnalisés, a été proposée comme une approche plus individualisée et plus sensible au changement pour évaluer les résultats dans les études cliniques. Nous avons élaboré une nouvelle mesure GAS destinée à être utilisée dans les études sur l’autisme pédiatrique, sur la base d’entretiens qualitatifs avec des adolescents autistes, des parents et des cliniciens. En appliquant une approche méthodologiquement rigoureuse, des entretiens d’élicitation de concepts (N = 40) ont d’abord été menés afin de comprendre et de générer une banque d’objectifs personnalisés, suivis d’entretiens de débriefing cognitif (N = 39) visant à recueillir des retours sur une version préliminaire d’un manuel GAS. Vingt-cinq objectifs personnalisés ont été générés pour les caractéristiques autistiques fondamentales (communication, socialisation, comportements restreints et répétitifs), ainsi que pour les caractéristiques et les impacts associés. Lors des entretiens de débriefing, les adolescents et les parents ont soutenu l’utilisation d’objectifs personnalisés, et les cliniciens ont recommandé l’utilisation de tels objectifs dans les études cliniques et la pratique. En conclusion, les mesures GAS peuvent surmonter certaines des difficultés liées aux mesures de résultats existantes et compléter les futures stratégies de mesure des résultats pour les études cliniques sur l’autisme pédiatrique. Résumé grand public Les enfants et adolescents autistes ainsi que leurs parents soutiennent l’utilisation d’objectifs personnalisés comme moyen de mesurer les effets de nouveaux traitements chez les personnes qui choisissent de participer à la recherche clinique. Les professionnels de santé recommandent également l’utilisation d’objectifs personnalisés à la fois dans leurs recherches et dans les plans de traitement. L’établissement d’objectifs personnalisés, un processus appelé échelle d’atteinte des objectifs (GAS), consiste à identifier des objectifs selon les besoins de l’individu, plutôt que d’utiliser des résultats standardisés pour tous les participants. L’autisme est une condition présentant de nombreuses caractéristiques et degrés d’impact différents, et les outils couramment utilisés pour mesurer les effets des traitements, appelés évaluations des résultats cliniques (COA), présentent des limites. Certaines COA, par exemple, comprennent des résultats qui ne sont pas pertinents pour toutes les personnes autistes ; d’autres ne comprennent pas suffisamment de résultats pour représenter l’expérience de toutes les personnes autistes. La GAS, qui mesure les expériences individuelles par rapport à des objectifs personnalisés, peut compléter les COA existantes en fournissant un outil individualisé ou sur mesure pour évaluer les résultats d’une intervention. Nous avons élaboré une mesure GAS destinée aux chercheurs et aux professionnels de santé pour une utilisation dans des études auprès d’enfants et d’adolescents autistes. Notre recherche reposait sur un total de 40 entretiens avec des adolescents, des parents et des cliniciens, comportant des questions ouvertes sur la manière dont les enfants et les adolescents vivent l’autisme, afin de comprendre et de créer une banque d’objectifs personnalisés potentiels. Nous avons ensuite mené 39 entretiens supplémentaires afin de leur demander leurs retours sur la première version préliminaire de la mesure. Au final, nous avons compilé une liste de 25 objectifs personnalisés liés aux caractéristiques fondamentales et associées des enfants et adolescents autistes, y compris des objectifs relatifs à la communication, à la socialisation et aux comportements restreints et répétitifs. Nous espérons que ces résultats contribueront à améliorer la mesure des résultats significatifs pour les enfants et adolescents autistes dans les études futures.

Existing clinical outcome assessments (COAs) have limitations in capturing treatment effects in autism for those who choose to enrol in clinical research. Some COAs include items that are not relevant or equally important to all autistic people; others are not sufficiently comprehensive. Goal Attainment Scaling (GAS), which measures individual experiences against personalised goals, has been proposed as a more individualised and change-sensitive approach to assess outcomes in clinical studies. We developed a novel GAS measure for use in paediatric autism studies based on qualitative interviews with autistic adolescents, parents and clinicians. Applying a methodologically robust approach, concept elicitation interviews ( N = 40) were first conducted to understand and generate a bank of personalised goals, followed by cognitive debriefing interviews (N = 39) to provide feedback on a draft GAS manual. Twenty-five personalised goals were generated for core autistic characteristics (communication, socialisation, restrictive and repetitive behaviours), as well as associated characteristics and impacts. In debriefing interviews, adolescents and parents supported the use of personalised goals and clinicians recommended using such goals in clinical studies and practice. In conclusion, GAS measures may overcome some of the challenges with existing outcome measures and complement future outcome measurement strategies for clinical studies in paediatric autism. Lay Abstract Autistic children and adolescents and their parents support the use of personalised goals as a way of measuring the effects of new treatments for those who choose to enrol in clinical research. Health professionals also recommend using personalised goals in both their research and in treatment plans. Establishing personalised goals, a process known as Goal Attainment Scaling (GAS), means identifying goals according to the needs of the individual, as opposed to using standardised outcomes for all participants. Autism is a condition with many different characteristics and degrees of impact, and the tools commonly used to measure treatment effects, known as clinical outcome assessments (COAs), have limitations. Some COAs, for example, include outcomes that are not relevant to all autistic people; others do not include enough outcomes to represent the experience of all autistic people. GAS, which measures individual experiences against personalised goals, may be complementary to existing COAs to provide an individualised or tailor-made tool to evaluate outcomes as a result of an intervention. We developed a GAS measure for researchers/health professionals to use in studies with autistic children and adolescents. Our research was based on a total of 40 interviews with adolescents, parents and clinicians, asking open-ended questions about how children and adolescents experience autism in order to understand and create a bank of potential personalised goals. We then conducted 39 further interviews to ask them for their feedback on the first draft of the measure. In the end, we compiled a list of 25 personalised goals related to core and associated characteristics of autistic children and adolescents, including goals related to communication, socialisation, and restricted and repetitive behaviours. We hope that these findings will help to improve the measurement of meaningful outcomes for autistic children and adolescents in future studies.

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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 11:31.

Références citées
49
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
3 / 49 (6,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
6 / 295 (2,0 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 6 / 67 (9,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 273 (2,2 %).
Occurrences citées rattachées à la base AutiHub
67 / 295 (22,7 %)
Auteurices cité·es distinct·es rattaché·es : 56 / 273 (20,5 %)
Occurrences rattachées, non identifiées comme autistes
61 / 67 (91,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 61 / 295 (20,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 50 / 56 (89,3 %).
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