Stichting Omega, Amsterdam, The Netherlands.
Department of Inclusive and Special Needs Education, University of Groningen, Groningen, The Netherlands.
J Appl Res Intellect Disabil. 2021 Jul;34(4):1127-1135. doi: 10.1111/jar.12873. Epub 2021 Mar 5.
Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group.
The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities who are non-ambulatory and the assessment of the sensibility of the developed instrument. A three-step process was used: focus groups, e-survey and interviews.
In total, 72% of the items remained unchanged. Three new items and one element to an existing item were added. In ten items, the formulation of the items was adapted to the target group. Concerning the sensibility, respondents suggested minor changes to the instruction and the output scales.
This study has yielded a proxy HRQoL measure for adults with severe disabilities who are non-ambulatory, the CPADULT, with good sensibility.
了解非运动性严重残疾成年人的健康相关生活质量（HRQoL）很重要，但目前缺乏相关衡量工具。本研究旨在为此类人群开发一种 HRQoL 衡量工具。
该开发过程包括对非运动性严重残疾儿童的代理 HRQoL 衡量工具进行适应性调整，以及对开发工具的敏感性进行评估。该过程共分为三个步骤：焦点小组讨论、电子调查和访谈。
共有 72%的项目保持不变。增加了三个新项目和一个现有项目的元素。在十个项目中，对项目的表述进行了调整，以适应目标人群。关于敏感性，受访者建议对说明和输出量表进行微小修改。
本研究开发了一种针对非运动性严重残疾成年人的代理 HRQoL 衡量工具，即 CPADULT，其具有良好的敏感性。
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