PlexiQoL，一种用于神经纤维瘤病 1 型相关丛状神经纤维瘤患者生存质量的患者报告结局测量量表：荷兰语版的翻译、文化调适及验证。
The PlexiQoL, a patient-reported outcome measure on quality of life in neurofibromatosis type 1-associated plexiform neurofibroma: translation, cultural adaptation and validation into the Dutch language for the Netherlands.
机构信息
Department of General Paediatrics, Erasmus MC-Sophia Children's Hospital, Wytemaweg 80, Rotterdam, 3015 CN, the Netherlands.
The ENCORE Expertise Centre for Neurodevelopmental Disorders, Erasmus MC, Rotterdam, the Netherlands.
出版信息
J Patient Rep Outcomes. 2024 Mar 18;8(1):33. doi: 10.1186/s41687-024-00714-y.
BACKGROUND
Half of the patients with Neurofibromatosis type 1 (NF1) develop one or more tumours called plexiform neurofibromas, which can have a significant impact on Quality of Life (QoL). The PlexiQoL questionnaire is a disease-specific QoL measure for adults with NF1-associated plexiform neurofibromas. The aim of this study was to adapt and validate a Dutch version of the PlexiQoL for the Netherlands.
METHODS
The PlexiQoL was translated using the dual-panel methodology, followed by cognitive debriefing interviews to assess face and content validity. The psychometric properties were evaluated by administering the questionnaire on two separate occasions to a sample of adults with NF1 and plexiform neurofibromas. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating Cronbach's alpha coefficient and test-retest reliability, using Spearman's rank correlation coefficients. Mann-Whitney U tests were used to check for known group validity. The Nottingham Health Profile (NHP) questionnaire was used as comparator questionnaire to evaluate convergent validity.
RESULTS
The translation and cognitive debriefing interviews resulted in a Dutch version of the PlexiQoL that reflected the original concept and underlying semantic meanings of the UK English version. Forty participants completed the validation survey. The Dutch PlexiQoL demonstrated excellent internal consistency (Cronbach's α 0.825) and test-retest reliability (Spearman correlation coefficient 0.928). The questionnaire detected differences in PlexiQoL scores between participants based on self-reported general health and disease severity. Convergent validity was confirmed for relevant NHP subsections.
CONCLUSIONS
The Dutch PlexiQoL demonstrated excellent psychometric properties and can be reliably used to measure plexiform neurofibroma-related QoL in adults with NF1 in the Netherlands.
背景
一半的 1 型神经纤维瘤病（NF1）患者会出现一种或多种称为丛状神经纤维瘤的肿瘤，这会对生活质量（QoL）产生重大影响。PlexiQoL 问卷是一种针对 NF1 相关丛状神经纤维瘤患者的特定疾病的生活质量（QoL）测量工具。本研究旨在为荷兰开发和验证 PlexiQoL 的荷兰语版本。
方法
采用双面板方法对 PlexiQoL 进行翻译，然后进行认知性访谈，以评估其表面效度和内容效度。通过在两个不同时间点向 NF1 和丛状神经纤维瘤患者样本中使用问卷来评估心理测量特性。通过评估存在地板/天花板效应来评估可行性。通过评估 Cronbach's alpha 系数和使用 Spearman 等级相关系数进行测试-重测信度来评估可靠性。使用 Mann-Whitney U 检验来检查已知组有效性。使用诺丁汉健康状况问卷（NHP）作为比较问卷来评估收敛有效性。
结果
翻译和认知性访谈产生了 PlexiQoL 的荷兰语版本，反映了英国英语版本的原始概念和潜在语义含义。有 40 名参与者完成了验证调查。荷兰语 PlexiQoL 表现出极好的内部一致性（Cronbach's α 0.825）和测试-重测信度（Spearman 相关系数 0.928）。问卷根据自我报告的一般健康状况和疾病严重程度，检测到参与者在 PlexiQoL 评分上的差异。确认了与相关 NHP 部分的收敛有效性。
结论
荷兰语 PlexiQoL 表现出极好的心理测量特性，可在荷兰用于可靠地测量 NF1 患者丛状神经纤维瘤相关的生活质量。
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