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蕈样肉芽肿和塞扎里综合征患者与其他皮肤病患者相比的心理社会负担。初步研究。

Psychosocial burden of patients with mycosis fungoides and Sézary syndrome compared to other dermatological patients. Pilot study.

作者信息

Cisoñ Hanna, Jankowska-Konsur Alina, Białynicki-Birula Rafał

机构信息

University Centre of General Dermatology and Oncodermatology, Faculty of Medicine, Wroclaw Medical University, Wroclaw, Poland.

Faculty of Medicine, Wroclaw University of Science and Technology, Wroclaw, Poland.

出版信息

Postepy Dermatol Alergol. 2024 Dec 31;42(3):291-297. doi: 10.5114/ada.2024.146864. eCollection 2025 Jun.

Abstract

INTRODUCTION

Cutaneous T-cell lymphoma (CTCL), including mycosis fungoides (MF) and Sézary syndrome (SS), significantly affects patients' quality of life (QoL) due to its chronic and progressive nature. Both conditions often lead to diagnostic delays and have a profound impact on daily activities and emotional well-being.

AIM

This study aimed to evaluate the QoL impairment in patients with MF and SS compared to individuals with psoriasis vulgaris and other dermatological diseases. Additionally, the study explored the potential role of high-frequency ultrasound (HFUS) in monitoring CTCL.

MATERIAL AND METHODS

A total of 104 patients, including 16 with MF, 1 with SS, 34 with psoriasis, and 53 with other dermatological diseases, were recruited from the University Centre of General Dermatology and Oncodermatology of the Wroclaw Medical University. QoL was assessed using the Polish version of the Dermatology Life Quality Index (DLQI) questionnaire. Statistical analyses included descriptive statistics, the Shapiro-Wilk test, and the Kruskal-Wallis H test.

RESULTS

Patients with CTCL had reduced QoL, with DLQI scores ranging from 2 to 22 (median: 10). However, intergroup comparisons showed no statistically significant differences between CTCL, psoriasis, and other dermatological disorders. HFUS emerged as a promising tool for assessing disease progression by measuring epidermal thickness, subepidermal low-echogenic band (SLEB) changes.

CONCLUSIONS

CTCL significantly impairs QoL, necessitating individualized management strategies. While treatments like low-dose total skin electron beam therapy (TSEBT) and extracorporeal photopheresis (ECP) offer QoL improvements, disease progression remains a concern. HFUS shows potential as a non-invasive diagnostic and monitoring tool, but further research is needed to validate its routine clinical application.

摘要

引言

皮肤T细胞淋巴瘤(CTCL),包括蕈样肉芽肿(MF)和 Sézary 综合征(SS),因其慢性和进行性的特点,严重影响患者的生活质量(QoL)。这两种病症常常导致诊断延误,并对日常活动和情绪健康产生深远影响。

目的

本研究旨在评估 MF 和 SS 患者与寻常型银屑病及其他皮肤病患者相比的生活质量损害情况。此外,该研究还探讨了高频超声(HFUS)在监测 CTCL 中的潜在作用。

材料与方法

从弗罗茨瓦夫医科大学普通皮肤科和肿瘤皮肤科大学中心招募了总共 104 名患者,其中包括 16 名 MF 患者、1 名 SS 患者、34 名银屑病患者和 53 名其他皮肤病患者。使用波兰语版的皮肤病生活质量指数(DLQI)问卷评估生活质量。统计分析包括描述性统计、Shapiro-Wilk 检验和 Kruskal-Wallis H 检验。

结果

CTCL 患者的生活质量下降,DLQI 评分范围为 2 至 22(中位数:10)。然而,组间比较显示 CTCL、银屑病和其他皮肤病之间在统计学上没有显著差异。HFUS 通过测量表皮厚度、表皮下低回声带(SLEB)变化,成为评估疾病进展的一种有前景的工具。

结论

CTCL 显著损害生活质量,需要个性化的管理策略。虽然低剂量全身电子束治疗(TSEBT)和体外光化学疗法(ECP)等治疗方法可改善生活质量,但疾病进展仍然是一个问题。HFUS 显示出作为一种非侵入性诊断和监测工具的潜力,但需要进一步研究以验证其在常规临床应用中的价值。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/31b3/12262030/311988df741d/PDIA-42-3-55501-g001.jpg

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