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本文引用的文献

1
Development of HiSQOL: A Hidradenitis Suppurativa-Specific Quality of Life Instrument.HiSQOL的开发:一种化脓性汗腺炎特异性生活质量量表。
Skin Appendage Disord. 2019 Jun;5(4):221-229. doi: 10.1159/000496234. Epub 2019 Feb 14.
2
Hidradenitis suppurativa has an enormous impact on patients' lives.化脓性汗腺炎对患者的生活有着巨大的影响。
J Am Acad Dermatol. 2020 Jan;82(1):236-238. doi: 10.1016/j.jaad.2019.07.009. Epub 2019 Jul 12.
3
Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient-Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa.化脓性汗腺炎生活质量的测量:欧洲皮肤病学会和性病学会生活质量和以患者为中心的结局以及痤疮、酒渣鼻和化脓性汗腺炎工作组的立场声明。
J Eur Acad Dermatol Venereol. 2019 Sep;33(9):1633-1643. doi: 10.1111/jdv.15519. Epub 2019 Apr 29.
4
Substantially reduced life expectancy in patients with hidradenitis suppurativa: a Finnish nationwide registry study.化脓性汗腺炎患者的预期寿命大幅缩短:一项芬兰全国性登记研究
Br J Dermatol. 2019 Jun;180(6):1543-1544. doi: 10.1111/bjd.17578. Epub 2019 Feb 4.
5
Health-Related Quality of Life of Patients with Hidradenitis Suppurativa Measured with the 15D Instrument and Comparison with the General Population and Patients with Psoriasis.用15D工具测量化脓性汗腺炎患者的健康相关生活质量并与普通人群和银屑病患者进行比较。
Skin Appendage Disord. 2018 Aug;4(3):131-135. doi: 10.1159/000481117. Epub 2017 Oct 4.
6
Profound consequences of hidradenitis suppurativa: a review.化脓性汗腺炎的深远后果:综述
Br J Dermatol. 2020 Dec;183(6):e171-e177. doi: 10.1111/bjd.16603. Epub 2018 May 9.
7
Health-related quality of life in different states of breast cancer - comparing different instruments.乳腺癌不同阶段的健康相关生活质量 - 比较不同的工具。
Acta Oncol. 2018 May;57(5):622-628. doi: 10.1080/0284186X.2017.1400683. Epub 2017 Nov 15.
8
The relationship between demographic- and disease-related variables and health-related quality of life in patients with axial spondyloarthritis.中轴型脊柱关节炎患者的人口统计学和疾病相关变量与健康相关生活质量之间的关系。
BMC Musculoskelet Disord. 2017 Aug 1;18(1):328. doi: 10.1186/s12891-017-1693-z.
9
Patients with Hidradenitis Suppurativa Have a High Psychiatric Disease Burden: A Finnish Nationwide Registry Study.患有化脓性汗腺炎的患者有较高的精神疾病负担:一项芬兰全国性登记研究。
J Invest Dermatol. 2018 Jan;138(1):46-51. doi: 10.1016/j.jid.2017.06.020. Epub 2017 Jul 21.
10
Development and validation of the International Hidradenitis Suppurativa Severity Score System (IHS4), a novel dynamic scoring system to assess HS severity.国际化脓性汗腺炎严重程度评分系统(IHS4)的制定与验证,一种新型动态评分系统,用于评估 HS 严重程度。
Br J Dermatol. 2017 Nov;177(5):1401-1409. doi: 10.1111/bjd.15748. Epub 2017 Oct 30.

根据通用15D量表测量,化脓性汗腺炎患者的健康相关生活质量较低。

Patients with Hidradenitis Suppurativa Suffer from Low Health-Related Quality of Life as Measured by the Generic 15D Instrument.

作者信息

Hirvonen Mirkka J, Pasternack Rafael, Lipitsä Tiina, Vihervaara Armi, Harvima Rauno, Ranta Martta, Sintonen Harri, Huilaja Laura

机构信息

AbbVie Oy, Espoo, Finland.

Department of Dermatology, Tampere University Hospital and Tampere University, Tampere, Finland.

出版信息

Skin Appendage Disord. 2022 May;8(3):221-227. doi: 10.1159/000520839. Epub 2021 Dec 27.

DOI:10.1159/000520839
PMID:35702276
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9149471/
Abstract

INTRODUCTION

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease associated with various comorbidities and diminished quality of life (QoL). Among dermatological conditions, HS is reported to most severely diminish QoL. This study aimed to analyse the health-related QoL (HRQoL) of patients with HS in more detail by using generic to disease-specific HRQoL questionnaires. Correlations between the HRQoL measures and HS disease severity measures were assessed.

METHODS

We analysed the HRQoL and clinical severity of patients with HS ( = 92) treated in 5 Finnish hospitals using HRQoL measurement tools most often used in dermatological clinics, as well as the generic 15D instrument (standardized and self-administered 15-dimensional measure of HRQoL). The disease severity was assessed using the Hurley stage, International Hidradenitis Suppurativa Severity Score System, and disease severity evaluation by the investigator.

RESULTS

The mean 15D score of HS patients was low and comparable with that of patients with cancers. No correlation was found between HS severity measures and 15D score, indicating that even mild HS has a high impact on HRQoL.

CONCLUSIONS

Our findings strengthen the understanding about HS as a debilitating disease and even compared with non-dermatological conditions and highlight the need of comprehensive care of patients with HS.

摘要

引言

化脓性汗腺炎(HS)是一种慢性炎症性皮肤病,伴有多种合并症且生活质量(QoL)下降。在皮肤病中,据报道HS对生活质量的影响最为严重。本研究旨在通过使用从通用到疾病特异性的生活质量问卷,更详细地分析HS患者的健康相关生活质量(HRQoL)。评估了HRQoL测量指标与HS疾病严重程度测量指标之间的相关性。

方法

我们使用皮肤科诊所最常用的HRQoL测量工具以及通用的15D工具(标准化的、可自行填写的15维度HRQoL测量方法),分析了芬兰5家医院治疗的92例HS患者的HRQoL和临床严重程度。使用Hurley分期、国际化脓性汗腺炎严重程度评分系统以及研究者进行的疾病严重程度评估来评估疾病严重程度。

结果

HS患者的平均15D评分较低,与癌症患者相当。未发现HS严重程度测量指标与15D评分之间存在相关性,这表明即使是轻度HS对HRQoL也有很大影响。

结论

我们的研究结果加深了对HS作为一种使人衰弱疾病的理解,甚至与非皮肤病状况相比,并强调了对HS患者进行全面护理的必要性。