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额部纤维性秃发生活质量指数:一份经过验证的针对女性的疾病特异性问卷。

Frontal Fibrosing Alopecia Quality of Life Index: A Validated Disease-Specific Questionnaire Involving Women.

作者信息

Porriño-Bustamante María Librada, Montero-Vílchez Trinidad, Fernández-Pugnaire María Antonia, Arias-Santiago Salvador

机构信息

Dermatology Department, University Hospital La Zarzuela, 28023 Madrid, Spain.

Dermatology Department, University of Granada, 18016 Granada, Spain.

出版信息

J Clin Med. 2023 Jan 20;12(3):824. doi: 10.3390/jcm12030824.

DOI:10.3390/jcm12030824
PMID:36769473
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9917648/
Abstract

Quality of life (QoL) can be affected in patients with alopecia. The few studies that evaluate QoL in FFA use unspecific questionnaires. The aim of this report was to design and validate a specific questionnaire to assess the impairment of QoL in FFA patients. A specific questionnaire, called the Frontal Fibrosing Alopecia Quality of Life Index (FFA-QLI), was designed and validated using the Dermatology Life Quality Index (DLQI). One-hundred and one women with FFA were included. Cronbach's alpha value was 0.865, and the intraclass correlation coefficient between all the items in the questionnaire was 0.870. The FFA-QLI correlated positively with the DLQI (r = 0.729, < 0.001). Patients with severe FFA showed a higher FFA-QLI (19.72) score compared to those with a mild disease (14.11) ( = 0.002), and the area under the curve for identifying severe disease was greater in the FFA-QLI than in the DLQI. The cut-off points were used to select patients with mild, moderate, and severe impairment in QoL. A score < 21 in the FFA-QLI corresponded to a low impact on QoL; values > 35 matched with greater QoL impairment; and values ranging from 21 to 35 corresponded to moderate QoL alteration. To conclude, a validated disease-specific questionnaire to assess QoL in FFA patients is here presented, with a greater power to discriminate severe cases of FFA than the DLQI.

摘要

脱发患者的生活质量(QoL)可能会受到影响。少数评估瘢痕性前额纤维性脱发(FFA)患者生活质量的研究使用的是非特异性问卷。本报告的目的是设计并验证一份特定问卷,以评估FFA患者生活质量的受损情况。我们设计了一份名为前额纤维性脱发生活质量指数(FFA-QLI)的特定问卷,并使用皮肤病生活质量指数(DLQI)进行了验证。纳入了101名患有FFA的女性。克朗巴哈系数值为0.865,问卷中所有项目之间的组内相关系数为0.870。FFA-QLI与DLQI呈正相关(r = 0.729,<0.001)。与轻度疾病患者(14.11)相比,重度FFA患者的FFA-QLI得分更高(19.72)(= 0.002),并且FFA-QLI在识别严重疾病方面的曲线下面积大于DLQI。使用这些分界点来选择生活质量有轻度、中度和重度受损的患者。FFA-QLI得分<21对应于对生活质量的低影响;值>35与更大的生活质量受损相匹配;值在21至35之间对应于中度生活质量改变。总之,本文提出了一份经过验证的针对疾病的问卷,用于评估FFA患者的生活质量,与DLQI相比,它在区分重度FFA病例方面具有更强的能力。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3956/9917648/4ca8fd18df9c/jcm-12-00824-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3956/9917648/03be377aac5c/jcm-12-00824-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3956/9917648/f314792e6c95/jcm-12-00824-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3956/9917648/4ca8fd18df9c/jcm-12-00824-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3956/9917648/03be377aac5c/jcm-12-00824-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3956/9917648/f314792e6c95/jcm-12-00824-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3956/9917648/4ca8fd18df9c/jcm-12-00824-g003.jpg

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2
Frequency of the Types of Alopecia at Twenty-Two Specialist Hair Clinics: A Multicenter Study.22家专业毛发诊所脱发类型的发生率:一项多中心研究
Skin Appendage Disord. 2019 Aug;5(5):309-315. doi: 10.1159/000496708. Epub 2019 Apr 2.
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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.
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Single-center analysis of patients with frontal fibrosing alopecia: evidence for hypothyroidism and a good quality of life.额部纤维性秃发患者的单中心分析:甲状腺功能减退及生活质量良好的证据
J Int Med Res. 2019 Feb;47(2):653-661. doi: 10.1177/0300060518807335. Epub 2018 Oct 31.
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Health-Related Quality of Life in Patients With Frontal Fibrosing Alopecia.患有额部纤维性脱发的患者的健康相关生活质量。
JAMA Dermatol. 2018 Apr 1;154(4):479-480. doi: 10.1001/jamadermatol.2017.6330.
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The role of beliefs: lessons from a pilot study on illness perception, psychological distress and quality of life in patients with primary cicatricial alopecia.信念的作用:原发性瘢痕性脱发患者疾病感知、心理困扰和生活质量的初步研究中的经验教训。
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