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白癜风患者的生活质量:一项基于白癜风生活质量指数(VitiQoL)的横断面研究。

Quality of life in patients with vitiligo: a cross-sectional study based on Vitiligo Quality of Life index (VitiQoL).

作者信息

Hedayat Kosar, Karbakhsh Mojgan, Ghiasi Maryam, Goodarzi Azadeh, Fakour Yousef, Akbari Zahra, Ghayoumi Afsaneh, Ghandi Narges

机构信息

Autoimmune Bullous Diseases Research Center, Tehran University of Medical Sciences, Tehran, Iran.

Department of Community and Preventive Medicine, Tehran University of Medical Sciences, Tehran, Iran.

出版信息

Health Qual Life Outcomes. 2016 Jun 7;14:86. doi: 10.1186/s12955-016-0490-y.

Abstract

BACKGROUND

Vitiligo is a multi-factorial pigmentary skin disorder. Recently, the importance of emotional and psychological issues is proposed in incidence, progression, relapse and remission of vitiligo. There are limited studies conducted in developing countries, which assess life quality of patients with vitiligo. The aim of this study was the application and evaluation of a disease-specific quality of life index in Iranian patients, for the first time.

METHODS

This cross-sectional biphasic study was conducted on 25 patients as a pilot and another 173 patients as the main study group, in Razi Hospital, Tehran, Iran, 2013-2014. Persian version of Vitiligo Quality of Life index (VitiQoL) was developed with backward-forward method. Based on the pilot study, the validity and reliability were assessed. The Vitiligo Area and Score Index (VASI), VitiQoL, and their relationship, demographic and clinical characteristic of patients were measured.

RESULTS

The Mean and standard deviation of the VitiQoL score was 30.5 ± 14.5 (range 0-60 in Persian version). There was a significant relationship between VASI score and VitiQoL (p = 0.015, r = 0.187). Confirmatory factor analysis revealed three important factors within VitiQoL: participation limitation, stigma, and behavior. In subscale analysis based on behavior factor, female patients had poorer quality of life (p = 0.02). Concomitant psychiatric problems, e.g. anxiety and depression, were not associated with QOL; however, they were near to being meaningful (p = 0.06, r = 0.14).

CONCLUSION

VitiQoL is a valid index in estimating life quality of vitiligo patients and has proper relation to disease severity. Focusing on patient's life quality is an important entity in the management of vitiligo patients; relevant supportive group-based consultations and therapies are also important arms when approaching vitiligo.

摘要

背景

白癜风是一种多因素导致的色素性皮肤病。近来,情绪和心理问题在白癜风的发病、进展、复发及缓解过程中的重要性被提了出来。在发展中国家,针对评估白癜风患者生活质量的研究有限。本研究的目的是首次在伊朗患者中应用并评估一种针对该疾病的生活质量指数。

方法

这项横断面双阶段研究于2013 - 2014年在伊朗德黑兰的拉齐医院进行,25名患者作为试点,另外173名患者作为主要研究组。采用前后向法编制了白癜风生活质量指数(VitiQoL)的波斯语版本。基于试点研究,评估了其有效性和可靠性。测量了白癜风面积和严重程度指数(VASI)、VitiQoL及其关系、患者的人口统计学和临床特征。

结果

VitiQoL评分的均值和标准差为30.5 ± 14.5(波斯语版本范围为0 - 60)。VASI评分与VitiQoL之间存在显著关系(p = 0.015,r = 0.187)。验证性因素分析揭示了VitiQoL中的三个重要因素:参与受限、耻辱感和行为。在基于行为因素的子量表分析中,女性患者的生活质量较差(p = 0.02)。伴随的精神问题,如焦虑和抑郁,与生活质量无关;然而,它们接近具有意义(p = 0.06,r = 0.14)。

结论

VitiQoL是评估白癜风患者生活质量的有效指数,并且与疾病严重程度有适当的关系。关注患者的生活质量是白癜风患者管理中的一个重要方面;相关的基于群体的支持性咨询和治疗也是应对白癜风时的重要手段。

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