Bruneel Laura, Van Lierde Kristiane, Bettens Kim, Corthals Paul, Van Poel Esther, De Groote Evelien, Keppler Hannah
Department of Speech, Language and Hearing Sciences, Ghent University, Ghent, Belgium.
Department of Speech, Language and Hearing Sciences, Ghent University, Ghent, Belgium; Department of Speech-Language Pathology and Audiology, University of Pretoria, Pretoria, South Africa.
Int J Pediatr Otorhinolaryngol. 2017 Jul;98:91-96. doi: 10.1016/j.ijporl.2017.04.049. Epub 2017 May 2.
Disease-specific health-related quality of life (HRQOL) questionnaires provide the clinician with important information regarding the impact of the disease on functioning and well-being. For patients with velopharyngeal insufficiency (VPI), the VPI Effects on Life Outcomes (VELO) questionnaire was developed and validated in English by Skirko et al. (2012). However, a valid and reliable Dutch translation of this questionnaire is not available yet.
The English questionnaire was translated to Dutch following a forward-backward translation procedure. A linguistic validation and the evaluation of the internal consistency (Cronbach's α) of this Dutch version were performed based on the responses of 39 parents of patients with cleft (lip and) palate (mean age: 6.8 years) (parent report) and the responses of 14 patients older than 8 years (mean age: 9.5 years) (child report). Additionally, the concurrent validity was assessed by comparing the scores on the parent report to those on the pediatric voice handicap index. Furthermore, the validity of the parent proxy assessment and the relationship between age and responses on the VELO questionnaire were investigated. Based on the responses of an age and gender matched control group without cleft palate, the discriminant validity was evaluated.
The parent report was easy to complete for all parents. Nine of the fourteen (64%) patients were able to complete the child report independently. The median scores on the parent report and the child report were 82.7 and 95.1 respectively. The patient group had a significantly worse perception of HRQOL compared to the control group (p < 0.001; p = 0.029). There were no significant differences between the responses of the parent and their child's (p = 0.345). A significant positive correlation was found between the score on the parent report and the age of the patients (p = 0.001). Furthermore, a significant negative correlation was found between the parent report and the P-VHI (p < 0.001). Cronbach's α was 0.955 and 0.817 for the parent report and the child report respectively.
The Dutch VELO questionnaire is a valid, reliable and user-friendly tool that provides important information about HRQOL in patients with cleft (lip and) palate.
特定疾病的健康相关生活质量（HRQOL）问卷为临床医生提供了有关疾病对功能和幸福感影响的重要信息。对于患有腭咽功能不全（VPI）的患者，Skirko等人（2012年）开发了VPI对生活结果的影响（VELO）问卷并进行了英文验证。然而，该问卷尚无有效的荷兰语翻译版本。
按照前后翻译程序将英文问卷翻译成荷兰语。基于39名唇腭裂患者的父母（平均年龄：6.8岁）（父母报告）和14名8岁以上患者（平均年龄：9.5岁）（儿童报告）的回答，对该荷兰语版本进行了语言验证和内部一致性（Cronbach's α）评估。此外，通过比较父母报告得分与儿童嗓音障碍指数得分来评估同时效度。此外，还研究了父母代理评估的效度以及年龄与VELO问卷回答之间的关系。基于无腭裂的年龄和性别匹配对照组的回答，评估了区分效度。
所有父母都认为父母报告易于填写。14名患者中有9名（64%）能够独立完成儿童报告。父母报告和儿童报告的中位数得分分别为82.7和95.1。与对照组相比，患者组对HRQOL的感知明显更差（p < 0.001；p = 0.029）。父母及其孩子的回答之间没有显著差异（p = 0.345）。父母报告得分与患者年龄之间存在显著正相关（p = 0.001）。此外，父母报告与P-VHI之间存在显著负相关（p < 0.001）。父母报告和儿童报告的Cronbach's α分别为0.955和0.817。
荷兰语VELO问卷是一种有效、可靠且用户友好的工具，可为唇腭裂患者的HRQOL提供重要信息。
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