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扁平苔藓性脱发患者的疾病认知、知识水平及生活质量

Illness Perceptions, Knowledge, and Quality of Life in Lichen Planopilaris Patients.

作者信息

Tahvildari Azin, Borran Sarina, Razzaghi Zahra, Dadkhahfar Sahar

机构信息

Skin Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Laser Application in Medical Sciences Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

出版信息

Skin Appendage Disord. 2025 Jun;11(3):221-226. doi: 10.1159/000543451. Epub 2025 Jan 13.

DOI:10.1159/000543451
PMID:40475097
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12136571/
Abstract

INTRODUCTION

Lichen planopilaris (LPP) is an inflammatory disease, leading to permanent hair loss, which significantly affects the psychosocial and self-image of patients with this condition; however, the impact of this condition on patients' quality of life (QoL), their perception of disease, and their knowledge about it have rarely been studied. This study aimed to investigate patients' knowledge and perspective on their disease and its association with their QoL and the extent of skin involvement.

METHODS

Patients diagnosed with LPP and confirmed through a biopsy from 2022 to 2023 completed a questionnaire covering demographic characteristics, the Illness Perception Questionnaire, disease and therapy knowledge, and the Dermatology Life Quality Index. Additionally, a dermatologist (S.D.) examined the Lichen Planopilaris Activity Index (LPPAI).

RESULTS

This study enrolled 42 LPP patients, with 81% being female and 73.8% under 60 years old. The LPPAI did not correlate with knowledge ( = 0.04, = 0.783), illness perception ( = 0.097, = 0.543), or QoL scores ( = 0.119, = 0.452). However, QoL was positively linked to knowledge ( = 0.382, = 0.013) and illness perception scores ( = 0.398, = 0.009). Patients with a longer disease duration had higher knowledge scores ( = 0.400, = 0.009).

CONCLUSION

Dermatologists should note that enhancing patients' knowledge of their disease and assessing their illness perceptions can help identify and correct misconceptions, improving treatment outcomes and their QoL.

摘要

引言

扁平苔藓性毛发角化病(LPP)是一种炎症性疾病,会导致永久性脱发,严重影响患有这种疾病的患者的心理社会状况和自我形象;然而,这种疾病对患者生活质量(QoL)的影响、他们对疾病的认知以及对疾病的了解情况很少被研究。本研究旨在调查患者对其疾病的了解和看法,以及其与生活质量和皮肤受累程度的关联。

方法

2022年至2023年被诊断为LPP并经活检确诊的患者完成了一份问卷,内容涵盖人口统计学特征、疾病认知问卷、疾病及治疗知识以及皮肤病生活质量指数。此外,一名皮肤科医生(S.D.)对扁平苔藓性毛发角化病活动指数(LPPAI)进行了评估。

结果

本研究纳入了42例LPP患者,其中81%为女性,73.8%年龄在60岁以下。LPPAI与知识水平(r = 0.04,p = 0.783)、疾病认知(r = 0.097,p = 0.543)或生活质量评分(r = 0.119,p = 0.452)均无相关性。然而,生活质量与知识水平(r = 0.382,p = 0.013)和疾病认知评分(r = 0.398,p = 0.009)呈正相关。病程较长的患者知识得分较高(r = 0.400,p = 0.009)。

结论

皮肤科医生应注意,增强患者对疾病的了解并评估他们的疾病认知有助于识别和纠正误解,改善治疗效果和他们的生活质量。

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