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天疱疮患者静止期的疾病负担。

Burden of disease during quiescent periods in patients with pemphigus.

机构信息

Health Services Research Unit, IDI IRCCS, Rome, Italy.

出版信息

Br J Dermatol. 2014 May;170(5):1087-91. doi: 10.1111/bjd.12836.

Abstract

BACKGROUND

Studies conducted using different tools have invariably observed that physical and mental components of health status are seriously compromised in patients with pemphigus. An improvement in quality of life (QoL) has been commonly observed over the treatment period.

OBJECTIVES

The aim of the study is to verify whether the patients' wellbeing is affected by pemphigus also in absence of cutaneous and mucosal lesions.

MATERIALS AND METHODS

The clinical records of 203 patients were analysed. A total of 47 patients were without bullae/erosions and reported a score = 0 for both the Patient Global Assessment and the Ikeda index. In order to assess the QoL we used the Skindex-17 and the 12-item General Health Questionnaire (GHQ-12).

RESULTS

Patients without bullae/erosions had a better QoL when compared with patients with active lesions. This difference, with a reduction of approximately 30% of the Skindex-17 scores in the patients without lesions, was statistically significant, for both the symptoms and the psychosocial scales. The proportion of patients at risk of anxiety/depression (GHQ-positive cases) was 44% lower in patients without lesions compared with patients with lesions. In a multiple linear regression model the presence of bullae/erosions negatively influences QoL with an average increase of Skindex-17 symptoms and psychosocial scale scores of 11·7 and 10·6 points, respectively. Female patients had a statistically significantly worse QoL than males on the symptoms but not on the psychosocial Skindex-17 scales.

CONCLUSIONS

While patients without lesions reported a better QoL than patients with bullae/erosions, their Skindex-17 scores remained elevated. Dermatologists should be aware that a clearing of the skin manifestations does not mean 'perfect health' for the patient.

摘要

背景

使用不同工具进行的研究都观察到,天疱疮患者的身心健康严重受损。在治疗期间,生活质量(QoL)普遍得到改善。

目的

本研究旨在验证即使没有皮肤和黏膜损伤,天疱疮是否也会影响患者的健康状况。

材料和方法

分析了 203 例患者的临床记录。共有 47 例患者没有水疱/糜烂,并且患者整体评估和池田指数的评分均为 0。为了评估 QoL,我们使用了 Skindex-17 和 12 项一般健康问卷(GHQ-12)。

结果

与有活动性皮损的患者相比,无水疱/糜烂的患者具有更好的 QoL。这种差异在无皮损患者中 Skindex-17 评分降低了约 30%,在症状和心理社会量表方面均具有统计学意义。无皮损患者中处于焦虑/抑郁风险(GHQ 阳性病例)的比例比有皮损患者低 44%。在多元线性回归模型中,水疱/糜烂的存在对 QoL 有负面影响,Skindex-17 症状和心理社会量表的平均评分分别增加了 11.7 分和 10.6 分。女性患者在症状方面的 QoL 明显比男性差,但在心理社会 Skindex-17 量表方面则没有差异。

结论

尽管无皮损的患者报告的 QoL 比有皮损的患者好,但他们的 Skindex-17 评分仍然较高。皮肤科医生应该意识到,皮肤症状的清除并不意味着患者的“完全健康”。

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