Estival Séverine, Krasny-Pacini Agata, Laurier Virginie, Maugard Céline, Thuilleaux Denise, Postal Virginie
Université de Bordeaux , Bordeaux , France.
Institut Universitaire de Réadaptation Clemenceau , Strasbourg , France.
Dev Neurorehabil. 2019 Nov;22(8):569-575. doi: 10.1080/17518423.2019.1642414. Epub 2019 Jul 29.
: Prader-Willi syndrome (PWS) is a neurodevelopmental genetic disorder involving executive deficits notably with planning. The main objective of the study is to assess the effectiveness of cognitive training on daily life planning difficulties in PWS patients. : The study is a double-blind randomized controlled trial which will compare the effectiveness of a metacognitive strategy intervention designed to improve planning difficulties for PWS patients to usual occupational therapy. Sixty adults will be included over 20 months. The main outcome measure will be the performance on the Modified Six Elements Test from the BADS; secondary outcome measures will be computerized executive tasks and questionnaires. Daily life planning difficulties will be identified and transformed into measurable goals using Goal Attainment Scaling. : The project will provide knowledge on the difficulties experienced by PWS patients, in relation to their executive functioning in order to implement effective intervention for planning in daily life.
普拉德-威利综合征(PWS)是一种神经发育性遗传疾病,存在执行功能缺陷,尤其是在计划方面。本研究的主要目的是评估认知训练对PWS患者日常生活计划困难的有效性。:本研究是一项双盲随机对照试验,将比较旨在改善PWS患者计划困难的元认知策略干预与常规职业治疗的有效性。20个月内将纳入60名成年人。主要结局指标将是BADS中改良六元素测试的表现;次要结局指标将是计算机化执行任务和问卷。将使用目标达成量表识别日常生活计划困难并将其转化为可衡量的目标。:该项目将提供有关PWS患者在执行功能方面所经历困难的知识,以便实施有效的日常生活计划干预措施。