Améliorer les résultats pour les personnes atteintes de troubles du spectre de l’autisme en réduisant les problèmes de santé mentale : le programme de recherche IAMHealth comprenant un essai contrôlé randomisé

Titre original en anglais : Improving outcomes for people with autism spectrum disorders by reducing mental health problems: the IAMHealth research programme including one RCT

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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Simonoff, E., Baird, G., Beresford, B., Charman, T., Knapp, M., Pickles, A., Povey, C., Purser, T., Santosh, P., Slonims, V., & Scott, S. (2025). Improving outcomes for people with autism spectrum disorders by reducing mental health problems: the IAMHealth research programme including one RCT. Programme Grants for Applied Research, 1-58. https://doi.org/10.3310/yrkp9867

Publication date: 01/05/2025 Ajout dans AutiHub: 09/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
11
Auteur·ices de la publication identifié·es comme autistes
1 / 11 (9,1 %)
  1. Emily Simonoff
  2. Gillian Baird
  3. Bryony Beresford
  4. Tony Charman
  1. Martin Knapp
  2. Andrew Pickles
  3. Carol Povey
  4. Tom Purser *
  1. Paramala Santosh
  2. Vicky Slonims
  3. Stephen Scott

Résumé

Contexte L’autisme est une condition neurodéveloppementale dont les symptômes principaux comprennent des altérations de la communication sociale, des comportements restreints et répétitifs et des atypies sensorielles, dont la sévérité peut varier. La plupart des personnes autistes présentent des problèmes supplémentaires et invalidants de santé mentale et de comportement, mais ceux-ci sont souvent insuffisamment reconnus par les professionnels de santé, les personnes autistes et leurs aidants. Objectif(s) Nous visons à améliorer l’identification des problèmes de santé mentale en développant un outil destiné à un usage clinique, qui peut également être utilisé pour suivre la réponse au traitement. Conception Lot de travaux 1 : nous avons développé et validé un nouvel instrument permettant une meilleure détection des problèmes de santé mentale et de comportement chez les personnes autistes, de l’enfance à l’âge adulte. Lot de travaux 2 : nous avons examiné comment de jeunes adultes autistes comprennent et gèrent leur santé mentale. Lot de travaux 3 : nous avons mené une étude de cohorte afin d’identifier les facteurs de risque et de protection des problèmes de santé mentale et de comportement chez des adolescents autistes. Lot de travaux 4 : nous avons mené un essai contrôlé randomisé pilote de faisabilité de Predictive Parenting comparé à une psychoéducation en groupe et à une intervention témoin active. L’objectif de l’essai contrôlé randomisé pilote de faisabilité n’était pas de tester des hypothèses. Cadre Les participants au lot de travaux 1 ont été recrutés par l’intermédiaire de sites cliniques à Londres et Liverpool et d’écoles spécialisées dans l’autisme à Londres. Dans le lot de travaux 2, les participants ont été sélectionnés à partir d’une cohorte initialement recrutée dans 11 régions du sud-est de l’Angleterre. Les participants provenaient des arrondissements londoniens de Bromley et Lewisham (lots de travaux 3 et 4) et de l’arrondissement londonien de Lambeth (lot de travaux 4). Participants Lot de travaux 1 : 255 parents d’enfants/adolescents autistes ; lot de travaux 2 : 19 jeunes adultes autistes ; lot de travaux 3 : cohorte QUEST de 277 enfants ; lot de travaux : 62 enfants. Intervention Predictive Parenting – une nouvelle intervention médiée par les parents. Principale mesure de résultat Lot de travaux 4 : une mesure observationnelle en aveugle des comportements difficiles de l’enfant. Résultats Nous avons développé l’Assessment of Concerning Behaviour, à remplir par les parents/aidants, les enfants/jeunes adultes/adultes autistes et les enseignants, et avons montré qu’il comporte deux sous-échelles fiables et valides reflétant les problèmes émotionnels et comportementaux. Nous avons identifié qu’une compréhension insuffisante ou incomplète de l’autisme influençait la compréhension, le discernement et la gestion des difficultés de santé mentale par les jeunes adultes et les parents. Nous avons montré une forte continuité des problèmes émotionnels et comportementaux ainsi que du trouble du déficit de l’attention avec hyperactivité entre la petite enfance et la fin de l’adolescence, la prédiction se situant largement au sein du même domaine (émotionnel, comportemental ou trouble du déficit de l’attention avec hyperactivité). Les symptômes du trouble du déficit de l’attention avec hyperactivité durant la petite enfance ont eu un impact négatif significatif sur le fonctionnement quotidien à l’adolescence. Au niveau individuel, les récits des parents suggéraient que de multiples facteurs peuvent affecter les trajectoires et les résultats en matière de santé mentale à la fin de l’adolescence. Notre essai pilote de faisabilité de notre nouvelle intervention, Predictive Parenting, destinée aux parents de jeunes enfants autistes, a été très acceptable et réalisable à mettre en œuvre. Limites À ce jour, seules les propriétés psychométriques de la version parentale de l’Assessment of Concerning Behaviour ont été déterminées. Nous avons combiné des échantillons cliniques et non cliniques, et l’échelle pourrait avoir des propriétés psychométriques différentes pour ces deux groupes. Le travail qualitatif du lot de travaux 2 était limité aux jeunes adultes sans déficience intellectuelle, et les femmes et les personnes d’origine ethnique non blanche, ainsi que les personnes présentant de graves problèmes de santé mentale, étaient sous-représentées. La cohorte QUEST du lot de travaux 3 était constituée de personnes ayant reçu un diagnostic précoce d’autisme, qui sont plus susceptibles de présenter des manifestations autistiques sévères et une déficience intellectuelle ; les résultats pourraient donc ne pas être généralisables à l’ensemble de la population autiste. L’étude pilote de faisabilité comportait une petite taille d’échantillon et, par conséquent, une puissance limitée pour détecter des différences entre les groupes ; l’absence d’évaluation objective de la fidélité de l’intervention ; l’absence d’un groupe de traitement habituel permettant de suivre la trajectoire naturelle des comportements de l’enfant et des parents au fil du temps ; et le fait que, bien que les chercheurs qui codaient la mesure observationnelle ne connaissaient pas l’attribution de l’intervention, ils n’étaient pas en aveugle quant au moment de l’évaluation. Conclusions Les recherches menées dans le cadre du présent programme montrent que les problèmes de santé mentale et de comportement sont plus fréquents chez les personnes autistes et persistent fortement au fil du temps, même lorsqu’ils débutent durant la petite enfance. Les interventions concernant les problèmes de santé mentale et de comportement constituent une priorité pour les personnes autistes et leurs familles. Cependant, nous avons montré que les personnes autistes et leurs familles ont souvent du mal à distinguer les caractéristiques autistiques des problèmes de santé mentale et de comportement. Travaux futurs Un essai contrôlé randomisé définitif incluant une évaluation économique est nécessaire pour déterminer l’efficacité et le rapport coût-efficacité de Predictive Parenting. Les futures recherches longitudinales pourraient porter sur les facteurs modifiables de risque et de résilience liés aux problèmes de santé mentale chez les personnes autistes et pourraient déterminer si l’utilisation systématique de questionnaires de dépistage de la santé mentale accroît l’identification et le traitement des problèmes de santé mentale chez les enfants et les jeunes autistes. Enregistrement de l’essai Cet essai est enregistré sous Current Controlled Trials ISRCTN91411078. Financement Cette subvention a été financée par le programme Programme Grants for Applied Research du National Institute for Health and Care Research (NIHR) (référence de la subvention NIHR : RP-PG-1211-20016) et est publiée intégralement dans Programme Grants for Applied Research ; vol. 13, no 5. Voir le site web NIHR Funding and Awards pour de plus amples informations sur la subvention.

Background Autism is a neurodevelopmental condition whose core symptoms include impairments in social communication, restricted and repetitive behaviours and sensory atypicalities, which can have varying severity. Most autistic people experience additional, impairing mental health and behavioural problems, but these are often under-recognised by healthcare professionals, autistic people and their caretakers. Objective(s) We aim to improve identification of mental health problems by developing a tool for clinical use, which can also be used to monitor treatment response. Design Work package 1: we developed and validated a new instrument to provide improved detection of mental health and behavioural problems in autistic people from childhood through to adult life. Work package 2: we explored how autistic young adults understand and manage their mental health. Work package 3: we undertook a cohort study to identify risk and protective factors for mental health and behavioural problems in autistic adolescents. Work package 4: we undertook a pilot feasibility randomised controlled trial of Predictive Parenting compared to group-based psychoeducation and active control intervention. It was not the aim of the pilot feasibility randomised controlled trial to undertake hypothesis testing. Setting Participants in work package 1 were ascertained through clinical sites within London and Liverpool and through specialist autism schools in London. In work package 2, participants were selected from a cohort originally ascertained from 11 regions across south-east England. Participants were drawn from London Boroughs of Bromley and Lewisham (work packages 3 and 4) and London Borough of Lambeth (work package 4). Participants Work package 1: 255 parents of autistic children/adolescent; work package 2: 19 autistic young adults; work package 3: QUEST cohort of 277 children; work package: 62 children. Intervention Predictive Parenting – a novel parent-mediated intervention. Main outcome measure Work package 4: a blinded observational measure of child behaviours that challenge. Results We developed the Assessment of Concerning Behaviour to be completed by parents/caretakers, autistic children/young people/adults and teachers, and showed it has two reliable and valid subscales reflecting emotional and behavioural problems. We identified that poor or incomplete understanding of autism affected young adults’ and parents’ understanding, discernment and management of mental health difficulties. We showed strong continuity of emotional and behavioural problems as well as attention deficit hyperactivity disorder from early childhood to late adolescence, with prediction being largely within domain (emotional, behavioural or attention deficit hyperactivity disorder). Early childhood attention deficit hyperactivity disorder symptoms had a significant negative impact on adolescent everyday functioning. At an individual level, parents’ accounts suggested multiple factors may affect mental health trajectories and outcomes in the late teenage years. Our pilot feasibility trial of our new intervention, Predictive Parenting, directed at parents of young autistic children was highly acceptable and feasible to deliver. Limitations To date, only the parent version of the Assessment of Concerning Behaviour has had its psychometric properties ascertained. We combined clinical and non-clinical samples and the scale could have different psychometric properties for these two groups. The qualitative work in work package 2 was limited to young adults without an intellectual disability and there was under-representation of females and non-white ethnicity, as well as those with severe mental health problems. The QUEST cohort in work package 3 was derived from those receiving an early autism diagnosis, who are more likely to have severe autistic presentations and intellectual disability, so the results may not generalise to the full autistic population. The pilot feasibility study had a small sample size and hence modest power to detect group differences; the lack of an objective rating of intervention fidelity; the lack of a treatment as usual group to track the natural trajectory of child and parent behaviours over time; and the fact that although the researchers who coded the observational measure were blinded to intervention allocation, they were not blinded to time point. Conclusions The research undertaken in the current programme shows that mental health and behavioural problems are more common in autistic people and are strongly persistent over time, even when they commence in the early childhood period. Interventions for mental health and behavioural problems are a priority for autistic people and their families. However, we showed that autistic people and their families often find it difficult to discern the difference between autistic features and mental health and behavioural problems. Future work A definitive randomised controlled trial including an economic evaluation is needed to determine the effectiveness and cost-effectiveness of Predictive Parenting. Future longitudinal research could focus on modifiable risk and resilience factors related to mental health problems in autistic people and could determine whether routine use of mental health screening questionnaires increases the identification and treatment of mental health problems in autistic children and young people. Trial registration This trial is registered as Current Controlled Trials ISRCTN91411078. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: RP-PG-1211-20016) and is published in full in Programme Grants for Applied Research; Vol. 13, No. 5. See the NIHR Funding and Awards website for further award information.

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Références citées
127
Avec un DOI
110
Sans DOI, à partir du texte brut de la bibliographie
16
0 / 127 (0,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
1 / 127 (0,8 %)
Références avec noms d’auteurices détectés
126 / 127 (99,2 %)
Sans nom d’auteurice détecté
1
Sans titre structuré
0
Sans identifiant stable
15
Références avec noms bruts d’auteurices restant à vérifier
0
Références avec problème de récupération des métadonnées externes
0
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Noms d’auteurices détectés dans la bibliographie citée
773
À partir du DOI ou de métadonnées externes
773
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
0
261 / 773 (33,8 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 512 / 773 (66,2 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
0 / 773 (0,0 %)
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 : 0 / 261 (0,0 %). Personnes distinctes identifiées comme autistes : 0 / 495 (0,0 %).
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