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适应版儿童姑息治疗结局量表的表面效度、内容效度、可接受性和可行性:一项定性预试验研究。

Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study.

机构信息

Institute of Health and Society, Université catholique de Louvain, Brussels, Belgium.

Haute Ecole Léonard de Vinci, Brussels, Belgium.

出版信息

J Palliat Med. 2021 Feb;24(2):181-188. doi: 10.1089/jpm.2019.0646. Epub 2020 Jul 15.

Abstract

To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Instruments in French used to measure outcomes in pediatric palliative care are lacking. After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.

摘要

为了评估儿童姑息治疗结局量表(CPOS)法语版的表面效度、内容效度、可接受性和可行性,我们对其进行了正向-反向翻译。目前,在儿科姑息治疗中用于测量结局的法语工具还比较缺乏。在将包含 12 个项目的英文版 CPOS 翻译成法语后,我们开展了一项定性预试验研究。在对 14 名患有危及生命疾病的儿童和青少年(8-18 岁)进行半结构化访谈时,我们使用了 CPOS、个体生活质量评价访谈指南(SEIQoL)和危及生命疾病家庭照护者生活质量问卷(QOLLTI-F),此外,还邀请了 4 个儿科联络小组(PLT)的 3 位专家参加了 3 次会议。该研究纳入了 4 个在比利时法语区提供姑息治疗的儿科联络小组,包括在家、住院或在临时照护服务中接受姑息治疗的 14 名患有生命受限或危及生命疾病的儿童和青少年、19 名父母和 9 名 PLT 成员。没有家庭拒绝参与。所有有语言能力的儿童选择在父母和一名 PLT 成员在场的情况下接受访谈。儿童们非常重视有机会分享自己的经历。原始的 12 项 CPOS 版本增加了与社会、情感和医疗保健相关的新 QOL 维度,形成了 22 项 CPOS-2。主要利益相关者认为 CPOS-2 具有相关性且易于使用。我们的研究为评估其心理测量学特征及其在常规临床护理中的应用的大规模现场研究铺平了道路。

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