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化脓性汗腺炎患者伴侣的心理社会负担。

Psychosocial burden of Hidradenitis Suppurativa patients' partners.

作者信息

Włodarek K, Głowaczewska A, Matusiak Ł, Szepietowski J C

机构信息

Department of Dermatology, Venereology and Allergology, Wroclaw Medical University, Wroclaw, Poland.

出版信息

J Eur Acad Dermatol Venereol. 2020 Aug;34(8):1822-1827. doi: 10.1111/jdv.16255. Epub 2020 Mar 10.

Abstract

BACKGROUND

Hidradenitis suppurativa is a debilitating disease related to a great psychosocial burden in affected patients and subsequently also people around them. Patients' partners as caregivers may indirectly experience wide range of devastating effects of the disease on their emotional and social life.

OBJECTIVE

The purpose of this study was to determine the QoL impairment in HS patients' partners and to identify its aspects that are affected the most. Correlation between QoL burden and disease severity, duration, sex, age and smoking was also assessed.

METHODS

A total of 50 HS sufferers were assessed according to disease severity and their partners' QoL was determined using the Family Dermatology Life Quality Index questionnaire.

RESULTS

The mean FDLQI for patients' partners was 8.7 ± 6.8 points, indicating generally a moderate effect of HS on their life. Quality of partners' life correlated significantly with disease severity but no correlation was found according to other factors.

CONCLUSION

Hidradenitis suppurativa is a highly psychologically devastating disease not only for patients but also for their partners. It occurred to diminish partners' QoL mostly by increasing daily expenditure but also other problems were often reported. Clinicians should be aware of these psychosocial implications, in order to provide optimal therapy of HS affected families by a multidisciplinary specialized management addressing both, patients and their cohabitants simultaneously.

摘要

背景

化脓性汗腺炎是一种使人衰弱的疾病,给患者及其周围的人带来巨大的心理社会负担。作为照顾者的患者伴侣可能会间接感受到该疾病对他们情感和社会生活的广泛破坏性影响。

目的

本研究旨在确定化脓性汗腺炎患者伴侣的生活质量受损情况,并确定受影响最大的方面。还评估了生活质量负担与疾病严重程度、病程、性别、年龄和吸烟之间的相关性。

方法

根据疾病严重程度对50名化脓性汗腺炎患者进行评估,并使用家庭皮肤病生活质量指数问卷确定其伴侣的生活质量。

结果

患者伴侣的家庭皮肤病生活质量指数平均为8.7±6.8分,表明化脓性汗腺炎对他们生活的总体影响中等。伴侣的生活质量与疾病严重程度显著相关,但未发现与其他因素相关。

结论

化脓性汗腺炎不仅对患者,而且对其伴侣来说都是一种极具心理破坏性的疾病。它主要通过增加日常开支来降低伴侣的生活质量,但也经常报告其他问题。临床医生应意识到这些心理社会影响,以便通过多学科专业管理同时为化脓性汗腺炎患者及其同居者提供最佳治疗,从而为受影响的家庭提供最佳治疗。

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