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寻常型天疱疮患者的疾病认知、感知到的社会支持与生活质量:皮肤科医生应了解什么?

Illness Perception, Perceived Social Support and Quality of Life in Patients with Pemphigus Vulgaris: What Should Dermatologists Know?

作者信息

Segal Oz, Goldzweig Gil, Tako Einat, Barzilai Aviv, Lyakhovitsky Anna, Baum Sharon

机构信息

Department of Dermatology, Chaim Sheba Medical Center, 5266202 Ramat Gan, Israel. E-mail:

出版信息

Acta Derm Venereol. 2021 Apr 27;101(4):adv00441. doi: 10.2340/00015555-3785.

DOI:10.2340/00015555-3785
PMID:33723618
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9364258/
Abstract

Data regarding the impact of psychological factors in patients with pemphigus is sparse. This study evaluated the correlation of demographic, clinical, and psychological parameters with quality of life in 58 patients with pemphigus. Illness perception showed a realistic view, with the highest scores for cyclical course (3.35 ± 0.09) and treatment control (3.08 ± 0.06). Mean scores for perceived social support were relatively high from family and significant others (5.89 ± 0.18 and 5.66 ± 0.23, accordingly), and relatively low from friends (4.55 ± 0.24). There were no correlations be-tween demographic, clinical parameters, perceived social support, and Dermatology Life Quality Index. Beliefs in cyclical course, emotional influence, psychological cause, and treatment control correlated significantly with quality of life. Stronger beliefs in self-control, chronicity, and accidental cause predicted higher quality of life, while stronger beliefs in cyclical course, psychological cause, and risk factors predicted lower quality of life. In order to enhance QoL, dermatologists should deliver the message to the patients that pemphigus is a chronic disease rather than cyclical and unexpected, and stress the patients' role in controlling it.

摘要

关于心理因素对天疱疮患者影响的数据很少。本研究评估了58例天疱疮患者的人口统计学、临床和心理参数与生活质量的相关性。疾病认知呈现出现实的观点,其中周期性病程(3.35±0.09)和治疗控制(3.08±0.06)得分最高。感知到的来自家人和重要他人的社会支持平均得分相对较高(分别为5.89±0.18和5.66±0.23),而来自朋友的得分相对较低(4.55±0.24)。人口统计学、临床参数、感知到的社会支持与皮肤病生活质量指数之间没有相关性。对周期性病程、情绪影响、心理原因和治疗控制的信念与生活质量显著相关。对自我控制、慢性病和偶然原因的信念越强,预测生活质量越高,而对周期性病程、心理原因和危险因素的信念越强,预测生活质量越低。为了提高生活质量,皮肤科医生应向患者传达天疱疮是一种慢性疾病而非周期性和不可预测疾病的信息,并强调患者在控制疾病中的作用。

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本文引用的文献

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Quality of life remains poor for patients with pemphigus vulgaris despite targeted therapies.尽管有靶向治疗,但寻常型天疱疮患者的生活质量仍然很差。
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