Domains of importance for parents, medical professionals and youth with cerebral palsy considering treatment outcomes.
Domains of importance for parents, medical professionals and youth with cerebral palsy considering treatment outcomes.
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DOI：
10.1111/j.1365-2214.2010.01121.x
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发表时间：
2011-03
期刊：
影响因子：
--
通讯作者：
Martin LK
中科院分区：
文献类型：
--
作者：
Vargus-Adams JN;Martin LK
本研究的目的是使用国际功能、残疾和健康分类-儿童和青年版（ICF-CY）的类别评估脑瘫（CP）治疗干预的重要领域。17名青少年、19名家长和39名医疗专业人员回答了开放式问题：“当你评估干预对你自己/你的孩子/你的脑瘫患者的影响时，你认为最重要的考虑是什么？”调查通过邮寄或在线方式进行。由两名评审员使用ICF-CY对答复进行编码，并解决了差异。回答分布在ICF-CY领域的身体功能和结构，活动和参与，环境因素，以及非ICF-CY概念，包括生活质量。总体而言，最常见的反应是疼痛，运动功能，流动性，社区生活和公共服务。青年确定的力量，步态模式，手/手臂的使用，并使用辅助技术作为优先事项，而父母关心的是运动功能，沟通，流动性和提供公共服务。医疗专业人员列出的疼痛，功能，流动性，社区生活和参与最常见。所有调查组均表示希望看到CP治疗干预后身体功能和结构（疼痛、心理功能、力量、运动）、活动和参与（沟通、手/手臂使用、步行、学校、娱乐/社区生活）以及生活质量的变化。这些结果表明，在整个功能和健康范围内，对CP的关注是多种多样的。
The aim of this study was to assess the domains of importance in therapeutic intervention for cerebral palsy (CP) using categories of the International Classification of Functioning, Disability, and Health - Version for Children & Youth (ICF-CY). 17 youth, 19 parents and 39 medical professionals responded to the open-ended query: “What are the things you find most important to consider when you evaluate the effects of an intervention for yourself/your child/your patient with cerebral palsy?” Surveys were either mailed or conducted on-line. Responses were coded by two reviewers using the ICF-CY and discrepancies were resolved. Responses were distributed across the ICF-CY domains of Body Functions and Structures, Activities and Participation, and Environmental Factors, as well as non-ICF-CY concepts including quality of life. The most common responses overall were pain, motor function, mobility, community life, and public services. Youth identified strength, gait pattern, hand/arm use, and use of assistive technologies as priorities whereas parents were concerned with motor function, communication, mobility, and provision of public services. Medical professionals listed pain, function, mobility, community life, and participation most often. All surveyed groups indicate a desire to see changes in body functions and structures (pain, mental function, strength, movement), activities and participation (communication, hand/arm use, walking, school, recreation/community life), and quality of life following therapeutic interventions for CP. These results demonstrate the multiple, varied concerns regarding CP across the spectrum of functioning and health.
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