Résumés
Résumé
Les enfants présentant le syndrome de Gilles de la Tourette (SGT) ont besoin de traitements efficaces et adaptés à leur réalité clinique complexe. L’évaluation de l’effet des traitements ciblant la gestion des tics est principalement déterminée par des mesures objectives. Or, ces mesures ne considèrent pas la perception de l’enfant, contrairement à des instruments de mesure évaluant la qualité de vie qui permettent d’avoir un regard global sur la vie de l’enfant, en allant au-delà des symptômes qu’il présente. L’objectif de cette étude est d’identifier et d’analyser les instruments de mesure utilisés dans la littérature scientifique pour évaluer la qualité de vie des enfants ayant le SGT. Des caractéristiques spécifiques ont été ciblées pour faire cette analyse, dont les propriétés psychométriques, le répondant, l’administration, l’adaptation sur le plan développemental et la présence d’un modèle conceptuel. Un total de huit instruments évaluant la qualité de vie ont été ciblés dans la présente revue de littérature, parmi ceux-ci, deux instruments de mesure font l’objet de recommandations. Cette étude facilitera le choix d’un clinicien ou d’un chercheur francophone qui désire employer un tel instrument, en lui permettant de tenir compte du point de vue de l’enfant ayant le SGT lors de l’évaluation de l’effet d’un traitement.
Mots-clés :
- Syndrome de Gilles de la Tourette,
- tics,
- qualité de vie,
- enfant,
- instruments de mesure
Abstract
Children with Tourette’s Disorder (TD) need effective treatments adapted to their complex clinical portrait. The evaluation of the effectiveness of treatments for managing these children’s tics is mainly determined by objective measures. However, these measures do not consider the perception of the child, contrary to measures assessing the quality of life, which allow a more global view on the life of the child, going beyond the symptoms that he presents. The objective of this study is to identify and analyze the measuring instruments used in the scientific literature to assess the quality of life of children with TD. Specific characteristics have been targeted to analyze these measures: psychometric properties, respondents, administration, developmental adaptations and conceptual model. A total of eight measures have been identified; two of these were recommended. These recommendations aim to facilitate the choice of a French-speaking decision-maker, clinician or researcher, who wishes to use such an instrument with a child with TD to obtain the unique point of view of the child while evaluating the effects of a treatment.
Keywords:
- Tourette’s Disorder,
- tics,
- quality of life,
- children,
- measures
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