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寻常型天疱疮患者的家庭皮肤科生活质量指数:一项横断面研究。

Family dermatology life quality index in patients with pemphigus vulgaris: A cross-sectional study.

机构信息

Student Research Committee, School of Medicine, Shiraz University of Medical Sciences, Shiraz, Iran.

Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.

出版信息

Indian J Dermatol Venereol Leprol. 2021 May-Jun;87(3):375-378. doi: 10.4103/ijdvl.IJDVL_276_18.

Abstract

BACKGROUND AND AIMS

Pemphigus vulgaris is a rare autoimmune intraepidermal vesiculobullous disease involving the skin and mucosa. It impacts the quality of life of both patients and their families.

METHODS

A total of 70 patients with pemphigus vulgaris (either outpatient or hospitalized) were enrolled using the simple sampling method between 2016 and 2017 from the dermatology clinic at Faghihi Hospital, Shiraz, Iran. A validated Persian version of the Family Dermatology Life Quality Index (FLDQI) questionnaire was filled by a family caregiver. The questionnaire contained 10 items assessing the quality of life of the family. Demographic variables were recorded in a separate form.

RESULTS

The mean age of the patients was 51 ± 11.3 years and that of the family caregivers was 32 ± 8.8 years. The FLDQI score was higher (poorer quality of life) if the patient was male, older, had shorter disease duration or had fewer disease recurrences (P = 0.046, 0.01, 0.001 and >0.001, respectively). Higher scores were also obtained in the less-educated caregivers (P = 0.026) but there was no association with either gender or age (P = 0.399, 0.1).

CONCLUSION

Pemphigus vulgaris significantly affects the Family Dermatology Life Quality Index. Education and counseling of family caregivers by various support groups such as Pemphigus Family Associations could be effective in improving the quality of life of the caregivers.

LIMITATIONS

This study did not assess the effect of comprising domain analysis, severity of disease, patients' Dermatology Life Quality Index (DLQI), mucosal involvement, response to treatment, outpatient or admitted status, socioeconomic status, or the quality of life among the various family members.

摘要

背景和目的

寻常型天疱疮是一种罕见的自身免疫性表皮内水疱性疾病,涉及皮肤和黏膜。它会影响患者及其家属的生活质量。

方法

本研究采用简单抽样法,于 2016 年至 2017 年期间,从伊朗设拉子法希希医院的皮肤科诊所招募了 70 名寻常型天疱疮患者(门诊或住院)。由一名家属照顾者填写经过验证的波斯语版家庭皮肤病生活质量指数(FLDQI)问卷。该问卷包含 10 个项目,用于评估家庭的生活质量。在另一份表格中记录了人口统计学变量。

结果

患者的平均年龄为 51 ± 11.3 岁,家属照顾者的平均年龄为 32 ± 8.8 岁。如果患者为男性、年龄较大、疾病持续时间较短或疾病复发次数较少,则 FLDQI 评分较高(生活质量较差)(P = 0.046、0.01、0.001 和 >0.001)。教育程度较低的照顾者的评分也较高(P = 0.026),但与性别或年龄无关(P = 0.399、0.1)。

结论

寻常型天疱疮显著影响家庭皮肤病生活质量指数。各种支持团体(如天疱疮家庭协会)对家属照顾者进行教育和咨询,可能有助于提高照顾者的生活质量。

局限性

本研究未评估包含域分析、疾病严重程度、患者皮肤病生活质量指数(DLQI)、黏膜受累、治疗反应、门诊或住院状态、社会经济状况或不同家庭成员生活质量等因素的影响。

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