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790例光皮肤病患者的生活质量。

The quality of life of 790 patients with photodermatoses.

作者信息

Jong C T, Finlay A Y, Pearse A D, Kerr A C, Ferguson J, Benton E C, Hawk J L M, Sarkany R P, McMullen E, Rhodes L E, Farr P M, Anstey A V

机构信息

Department of Dermatology, Cardiff University School of Medicine, Cardiff CF14 4XN, UK.

出版信息

Br J Dermatol. 2008 Jul;159(1):192-7. doi: 10.1111/j.1365-2133.2008.08581.x. Epub 2008 Jul 1.

Abstract

BACKGROUND

Polymorphic light eruption and erythropoietic protoporphyria (EPP) have been demonstrated to have a moderate and large impact on the quality of life (QoL) of patients, respectively. However, there is little information available about the impact of other photodermatoses on QoL.

OBJECTIVES

To assess and compare the impact of all forms of photodermatoses on patients' QoL using the standard 1-week Dermatology Life Quality Index (DLQI) questionnaire and a modified questionnaire to assess the impact over the previous year.

METHODS

All patients with photodermatoses seen between 2001 and 2005 at five U.K. photobiology centres were contacted by post on the same day during a forecasted sunny week across the U.K. and asked to complete DLQI questionnaires.

RESULTS

A total of 1877 patients were contacted. Seven hundred and ninety-seven (42%) patients replied, with a range from 30% to 48% for the five individual centres. Nearly two-thirds of patients with actinic prurigo (AP) and more than one-third of patients with photoaggravated dermatoses (PAD), chronic actinic dermatitis, EPP and solar urticaria had a DLQI of > 10, confirming a very large effect of the disorders on QoL. Of the cutaneous porphyrias, both variegate porphyria (median DLQI 3) and porphyria cutanea tarda (median DLQI 1.5) had a much lower impact on QoL than EPP.

CONCLUSION

This is the first large-scale study to attempt to measure the impact of a range of photodermatoses on QoL. Photodermatoses have a major impact on QoL. This impact is highest in AP and PAD.

摘要

背景

多形性日光疹和红细胞生成性原卟啉症(EPP)已被证明分别对患者的生活质量(QoL)有中度和较大影响。然而,关于其他光皮肤病对生活质量的影响,现有信息很少。

目的

使用标准的1周皮肤病生活质量指数(DLQI)问卷和一份修改后的问卷来评估和比较所有形式的光皮肤病对患者生活质量的影响,该修改后的问卷用于评估前一年的影响。

方法

在英国五个光生物学中心于2001年至2005年期间诊治的所有光皮肤病患者,在英国预计阳光充足的一周内的同一天通过邮寄方式联系,并要求他们完成DLQI问卷。

结果

共联系了1877名患者。797名(42%)患者回复,五个独立中心的回复率在30%至48%之间。近三分之二的光化性痒疹(AP)患者以及超过三分之一的光加重性皮肤病(PAD)、慢性光化性皮炎、EPP和日光性荨麻疹患者的DLQI>10,证实这些疾病对生活质量有非常大的影响。在皮肤卟啉症中,杂合性卟啉症(中位DLQI 3)和迟发性皮肤卟啉症(中位DLQI 1.5)对生活质量的影响远低于EPP。

结论

这是首次尝试测量一系列光皮肤病对生活质量影响的大规模研究。光皮肤病对生活质量有重大影响。这种影响在AP和PAD中最为显著。

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