Department of Rehabilitation Medicine, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
Rijndam Rehabilitation, Rotterdam, the Netherlands.
Dev Med Child Neurol. 2021 Jul;63(7):846-852. doi: 10.1111/dmcn.14841. Epub 2021 Feb 26.
To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP.
We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers.
In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I-IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III-V) participated. We identified 132 unique second-level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services.
Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper adds Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems.
从成年人自身的角度出发，研究其最相关的身体功能和活动方面，以制定《国际功能、残疾和健康分类》（ICF）脑瘫成年人核心组合。
我们对 31 名无智力障碍的脑瘫成年人（平均[标准差]年龄 46 岁 1 个月[14 岁 1 个月]；20 名女性，11 名男性；粗大运动功能分级系统[GMFCS]水平 I-IV）和 7 名伴有智力障碍的脑瘫成年人（平均[标准差]年龄 25 岁 8 个月[6 岁 8 个月]；4 名女性，3 名男性；GMFCS 水平 III-V）进行了 6 次焦点小组讨论和 7 次访谈，涵盖了 ICF 的所有组成部分。两位独立的研究者从逐字记录中识别出有意义的概念，并将其与 ICF 类别联系起来。
共纳入 31 名无智力障碍的脑瘫成年人（平均[标准差]年龄 46 岁 1 个月[14 岁 1 个月]；20 名女性，11 名男性；粗大运动功能分级系统[GMFCS]水平 I-IV）和 7 名伴有智力障碍的脑瘫成年人（平均[标准差]年龄 25 岁 8 个月[6 岁 8 个月]；4 名女性，3 名男性；GMFCS 水平 III-V）。我们共确定了 132 个独特的二级类别：47 个身体功能、7 个身体结构、43 个活动和参与以及 35 个环境因素。被提及最多的类别包括情绪功能、疼痛、肌肉张力功能、家庭支持、产品和技术以及卫生服务。
脑瘫成年人在广泛的身体功能和活动中都存在问题，并指出环境因素对功能的重要性。所确定的类别将被添加到候选项目列表中，以就脑瘫成年人的 ICF 核心组合达成共识。本文的意义：纳入生活体验对于全面了解脑瘫成年人的功能至关重要。脑瘫成年人将环境因素视为日常功能的重要组成部分。智力障碍的成年人应被视为一个具有特定问题的群体。
