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泰国面部葡萄酒色斑患者的皮肤病生活质量指数

Dermatology Life Quality Index in Thai Patients with Facial Port-Wine Stains.

作者信息

Jantarakolica Tatre, Wanitphakdeedecha Rungsima, Yan Chadakan, Yogya Yuri, Manuskiatti Woraphong, Sudhipongpracha Tatchalerm

机构信息

Faculty of Economics, Thammasat University, Bangkok, Thailand.

Department of Dermatology, Faculty of Medicine Siriraj Hospital, Mahidol University, 2 Pran-Nok Road, Bangkok, 10700, Thailand.

出版信息

Dermatol Ther (Heidelb). 2023 Oct;13(10):2375-2386. doi: 10.1007/s13555-023-01011-0. Epub 2023 Sep 14.

Abstract

INTRODUCTION

Port-wine stains (PWS) are congenital capillary abnormalities caused by immature, venule-like vasculature that progressively dilates due to poor endothelial cell differentiation. PWS affects between 0.3% and 0.9% of newborns, with 90% of cases occurring on the face. Individuals with facial PWS and their parents had a significant negative impairment on their quality of life (QoL) and also suffered from psychological disabilities.

METHODS

This was a cross-sectional questionnaire-based survey study in Thailand from July 2021 to April 2022. The questionnaires included demographic data, subjective evaluation (SE), and the Dermatology Life Quality Index (DLQI). The questionnaire was performed with a full scale and adjusted scale of validity and reliability test of DLQI using factor analysis and Cronbach's alpha. The study outcome was a subjective evaluation and DLQI in patients who received pulsed dye laser (PDL) treatment.

RESULTS

Of the 54 patients, 35.2% (19) are male, and 64.8% (35) are female. Regarding age groups, 64.8% (35) are below 5 years old, and 35.2% (19) are older than 5 years. SE results showed that males evaluated an improvement of the facial PWS lesion significantly better than females (P < 0.05). The older age group graded the percentage of improvement better than the younger age group (P < 0.01). The result of the DLQI showed no difference in DLQI between gender. Older age result resulted in a significantly different DLQI compared with younger age (P < 0.01). Parent-reported DLQI improvement was less than self-reported DLQI improvement in patients with PWS treated with PDL (P < 0.05). Concerning the instrument of the study, the validity and reliability analysis of the DLQI questionnaire using factor analysis and Cronbach's alpha have been performed. The adjusted scale with the 5-item DLQI questionnaire is more appropriate in terms validity and reliability.

CONCLUSION

This study demonstrates that facial PWS reduces the QoL as measured by DLQI. We discovered that the QoL of patients and parents with PWS was significantly impaired. The main influencing factors were older age, the improved perception between gender, and PDL treatments. In addition, we found only five questions that are reliable for PWS. The adjusted five-item DLQI questionnaires are more appropriate regarding validity and reliability.

TRIAL REGISTRATION NUMBER

TCTR20230210001, COA no. si 1059/2020.

摘要

引言

葡萄酒色斑(PWS)是一种先天性毛细血管异常,由不成熟的、类似小静脉的脉管系统引起,由于内皮细胞分化不良,这种脉管系统会逐渐扩张。PWS影响0.3%至0.9%的新生儿,其中90%的病例发生在面部。患有面部PWS的个体及其父母的生活质量(QoL)受到显著负面影响,并且还患有心理障碍。

方法

这是一项于2021年7月至2022年4月在泰国进行的基于问卷调查的横断面研究。问卷包括人口统计学数据、主观评估(SE)和皮肤病生活质量指数(DLQI)。使用因子分析和克朗巴哈系数对问卷进行了全面及调整后的DLQI有效性和可靠性测试。研究结果是接受脉冲染料激光(PDL)治疗患者的主观评估和DLQI。

结果

54例患者中,35.2%(19例)为男性,64.8%(35例)为女性。在年龄组方面,64.8%(35例)年龄在5岁以下,35.2%(19例)年龄在5岁以上。SE结果显示,男性对面部PWS病变改善的评估明显优于女性(P < 0.05)。年龄较大的组对改善百分比的评分优于年龄较小的组(P < 0.01)。DLQI结果显示性别之间的DLQI没有差异。与年轻年龄组相比,年龄较大组的DLQI结果有显著差异(P < 0.01)。在接受PDL治疗的PWS患者中,家长报告的DLQI改善低于自我报告的DLQI改善(P < 0.05)。关于研究工具,使用因子分析和克朗巴哈系数对DLQI问卷进行了有效性和可靠性分析。采用5项DLQI问卷的调整后量表在有效性和可靠性方面更合适。

结论

本研究表明,面部PWS会降低DLQI所衡量的生活质量。我们发现PWS患者及其家长的生活质量受到显著损害。主要影响因素是年龄较大、性别之间改善认知的差异以及PDL治疗。此外,我们发现只有五个问题对PWS可靠。调整后的五项DLQI问卷在有效性和可靠性方面更合适。

试验注册号

TCTR20230210001,COA编号si 1059/2020。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b00f/10539252/24e693e1a226/13555_2023_1011_Fig1_HTML.jpg

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