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评估基于游戏的远程医疗干预计划对 Prader-Willi 综合征患儿的可行性。

Evaluating the Feasibility of a Play-Based Telehealth Intervention Program for Children with Prader-Willi Syndrome.

机构信息

Department of Psychological Sciences, Case Western Reserve University, 11220 Bellflower Road, MTHM 109, Cleveland, OH, 44106-7123, USA.

出版信息

J Autism Dev Disord. 2017 Sep;47(9):2814-2825. doi: 10.1007/s10803-017-3196-z.

DOI:10.1007/s10803-017-3196-z
PMID:28612246
Abstract

Here we report the feasibility and acceptability of telehealth for direct intervention in children with Prader-Willi syndrome (PWS). Children with PWS have social-cognitive challenges that are similar to children with ASD. However, developing behavioral interventions for individuals with PWS is faced with the significant challenge of enrolling enough participants for local studies where multiple visits per week are indicated for effective intervention. This study delivered a 6-week play-based intervention via telehealth directly to eight children with PWS (6-12 years). Participants completed the program with minimal behavioral or technological difficulty (#sessions M = 11.875/12). Behavioral Intervention Rating Scale results indicate good acceptability (M = 5.54/6.00). These findings support using telehealth in rare disorders and delivering intervention directly to children with developmental delays through this modality.

摘要

我们在此报告了通过远程医疗直接干预普拉德-威利综合征(PWS)儿童的可行性和可接受性。患有 PWS 的儿童存在与自闭症谱系障碍(ASD)儿童相似的社会认知挑战。然而,为患有 PWS 的个体开发行为干预措施面临着一个重大挑战,即招募足够多的参与者参加当地研究,因为每周多次就诊对于有效的干预是必要的。本研究通过远程医疗直接向 8 名患有 PWS 的儿童(6-12 岁)提供了为期 6 周的基于游戏的干预。参与者在最小的行为或技术困难下完成了该项目(# sessions M=11.875/12)。行为干预评定量表的结果表明该项目具有很好的可接受性(M=5.54/6.00)。这些发现支持在罕见疾病中使用远程医疗,并通过这种方式直接向发育迟缓的儿童提供干预。

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