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Abstract：
BACKGROUND: Almost all patients with Neurofibromatosis type 1 (NF1) develop cutaneous neurofibroma (cNF), benign dermal tumours that have a large impact on the patient\'s Quality of Life (QoL). The French cNF-Skindex is the first questionnaire to specifically assess cNF-related QoL in patients with NF1. We aimed to adapt and validate a Dutch version of the cNF-Skindex.
METHODS: The questionnaire was translated using forward and backwards translation, and subsequently administered to a sample of 59 patients on two separate occasions. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating internal consistency and test-retest reliability, by calculating Cronbach\'s alpha and Spearman\'s rank correlation coefficients. The EQ-5D-5L and SF-36 were used to evaluate convergent validity, using Spearman\'s rank correlation coefficients. An exploratory factor analysis was performed to study the data\'s internal structure. Multivariable linear regression was used to model the relationship between patient characteristics and the cNF-Skindex.
RESULTS: The Dutch cNF-Skindex demonstrated excellent feasibility and reliability (Cronbach\'s alpha 0.96, test-retest correlation coefficient 0.88). Convergent validity was confirmed for the EQ-5D-5L and relevant SF-36 scales. All items and subdomains from the original questionnaire were confirmed following exploratory factor analysis. The patient characteristics included in the multivariable linear regression were not significantly associated with the cNF-Skindex score.
CONCLUSIONS: The Dutch cNF-Skindex displayed excellent psychometric properties, enabling use in the Netherlands.
METHODS: The questionnaire was translated using forward and backwards translation, and subsequently administered to a sample of 59 patients on two separate occasions. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating internal consistency and test-retest reliability, by calculating Cronbach\'s alpha and Spearman\'s rank correlation coefficients. The EQ-5D-5L and SF-36 were used to evaluate convergent validity, using Spearman\'s rank correlation coefficients. An exploratory factor analysis was performed to study the data\'s internal structure. Multivariable linear regression was used to model the relationship between patient characteristics and the cNF-Skindex.
RESULTS: The Dutch cNF-Skindex demonstrated excellent feasibility and reliability (Cronbach\'s alpha 0.96, test-retest correlation coefficient 0.88). Convergent validity was confirmed for the EQ-5D-5L and relevant SF-36 scales. All items and subdomains from the original questionnaire were confirmed following exploratory factor analysis. The patient characteristics included in the multivariable linear regression were not significantly associated with the cNF-Skindex score.
CONCLUSIONS: The Dutch cNF-Skindex displayed excellent psychometric properties, enabling use in the Netherlands.
摘要：
背景：几乎所有1型神经纤维瘤病（NF1）患者都会发展为皮肤神经纤维瘤（cNF），对患者生活质量（QoL）有很大影响的良性皮肤肿瘤。法国cNF-Skindex是第一个专门评估NF1患者cNF相关QoL的问卷。我们的目标是修改和验证荷兰语版本的cNF-Skindex。
方法：问卷采用前后翻译，并随后两次分别对59名患者的样本进行了治疗。通过存在地板/天花板效应来评估可行性。通过评估内部一致性和重测可靠性来评估可靠性，通过计算克朗巴赫的α和斯皮尔曼的秩相关系数。EQ-5D-5L和SF-36用于评估收敛效度，使用斯皮尔曼的等级相关系数。进行探索性因素分析以研究数据的内部结构。使用多变量线性回归对患者特征与cNF-Skindex之间的关系进行建模。
结果：荷兰cNF-Skindex证明了出色的可行性和可靠性（Cronbach\sα0.96，测试重测相关系数0.88）。EQ-5D-5L和相关SF-36量表的收敛有效性得到证实。通过探索性因素分析，确认了原始问卷中的所有项目和子域。多变量线性回归中包括的患者特征与cNF-Skindex评分没有显着相关。
结论：荷兰cNF-Skindex表现出优异的心理测量特性，允许在荷兰使用。
方法：问卷采用前后翻译，并随后两次分别对59名患者的样本进行了治疗。通过存在地板/天花板效应来评估可行性。通过评估内部一致性和重测可靠性来评估可靠性，通过计算克朗巴赫的α和斯皮尔曼的秩相关系数。EQ-5D-5L和SF-36用于评估收敛效度，使用斯皮尔曼的等级相关系数。进行探索性因素分析以研究数据的内部结构。使用多变量线性回归对患者特征与cNF-Skindex之间的关系进行建模。
结果：荷兰cNF-Skindex证明了出色的可行性和可靠性（Cronbach\sα0.96，测试重测相关系数0.88）。EQ-5D-5L和相关SF-36量表的收敛有效性得到证实。通过探索性因素分析，确认了原始问卷中的所有项目和子域。多变量线性回归中包括的患者特征与cNF-Skindex评分没有显着相关。
结论：荷兰cNF-Skindex表现出优异的心理测量特性，允许在荷兰使用。
