Díez-Juan María, Schneider Andrea, Phillips Tiffany, Lozano Reymundo, Tassone Flora, Solomon Marjorie, Hagerman Randi J
University of California Davis MIND Institute, Sacramento, USA; ; UETD Department, Sant Joan Déu Hospital, Barcelona, Spain;
University of California Davis MIND Institute, Sacramento, USA; ; University of California Davis, Davis, USA;
Intractable Rare Dis Res. 2014 Nov;3(4):166-77. doi: 10.5582/irdr.2014.01026.
The use of touchscreen applications for the iPad(®) allows children with disabilities to improve their personal autonomy and quality of life. In light of this emerging literature and our clinical experience with toddlers and children with Fragile X syndrome (FXS), a randomized clinical trial pilot study was conducted of whether an interactive iPad(®)-based parent training program was efficacious for both individuals with FXS and autism spectrum disorder aged 2-to-12 compared to wait-listed controls. As a second goal, we assessed the difference between direct person-to-person therapy vs. online therapy sessions through telehealth. In this case series report it is presented preliminary results of four individuals with FXS enrolled in the study and described the innovative experience including qualitative and quantitative data analysis. Furthermore, we provide professionals with specific guidelines about the use of touchscreen devices as in-home learning tools and parent training strategies to actively involve families in educational treatments in conjunction with clinical guidance.
在iPad（®）上使用触摸屏应用程序可以让残疾儿童提高个人自主性和生活质量。鉴于这一新兴文献以及我们对患有脆性X综合征（FXS）的幼儿和儿童的临床经验，我们开展了一项随机临床试验试点研究，以探讨与等待名单对照组相比，基于iPad（®）的交互式家长培训计划对年龄在2至12岁的FXS患者和自闭症谱系障碍患者是否有效。作为第二个目标，我们评估了面对面直接治疗与通过远程医疗进行的在线治疗之间的差异。在本病例系列报告中，呈现了该研究中4名FXS患者的初步结果，并描述了包括定性和定量数据分析在内的创新经验。此外，我们为专业人员提供了关于将触摸屏设备用作家庭学习工具的具体指导方针，以及家长培训策略，以便在临床指导下积极让家庭参与教育治疗。
