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白癜风患者的心理健康和心理社会生活质量负担:来自全球 VALIANT 研究的结果。

Mental Health and Psychosocial Quality-of-Life Burden Among Patients With Vitiligo: Findings From the Global VALIANT Study.

机构信息

Incyte Corporation, Wilmington, Delaware.

Henri Mondor University Hospital, Paris, France.

出版信息

JAMA Dermatol. 2023 Oct 1;159(10):1124-1128. doi: 10.1001/jamadermatol.2023.2787.

Abstract

IMPORTANCE

Patients with vitiligo often have impaired quality of life (QOL) and experience substantial psychosocial burden.

OBJECTIVE

To explore the global association of vitiligo with QOL and mental health from the patient perspective.

DESIGN, SETTING, AND PARTICIPANTS: This qualitative study of the cross-sectional population-based Vitiligo and Life Impact Among International Communities (VALIANT) study was conducted from May 6, 2021, to June 21, 2021. Potential participants for this qualitative study were recruited from an online panel in 17 countries. Of 5859 surveyed adults (aged ≥18 years) who reported a vitiligo diagnosis, 3919 (66.9%) completed the survey, and 3541 (60.4%) were included in the analysis.

EXPOSURES

Patients were asked questions regarding their emotional well-being, including QOL and mental health.

MAIN OUTCOMES AND MEASURES

Reported analyses are descriptive and hypothesis generating. Vitiligo Impact Patient scale (VIPs) scores ranged from 0 to 60, with higher scores indicating more psychosocial burden.

RESULTS

The median age of the 3541 patients was 38 years (range, 18-95 years), and 1933 (54.6%) were male; 1602 patients (45.2%) had more than 5% affected body surface area (BSA; Self-Assessment Vitiligo Extent Score assessed), and 1445 patients (40.8%) had Fitzpatrick skin types IV to VI (ie, darker skin). The mean (SD) global short-form VIPs score was 27.3 (15.6) overall; patients from India (mean [SD], 40.2 [14.1]) reported the highest scores (ie, most burden). The QOL burden according to the scale was profound for patients with more than 5% affected BSA (mean [SD] score, 32.6 [14.2]), darker skin (mean [SD] score, 31.2 [15.6]), and lesions on the face (mean [SD] score, 30.0 [14.9]) or hands (mean [SD], 29.2 [15.2]). At least 40% of patients globally reported that vitiligo frequently affected aspects of their daily lives, including choosing clothes to wear (1956 of 3541 [55.2%]). Most patients (2103 of 3541 [59.4%]) reported concealing their vitiligo frequently. More than half of patients (2078 of 3541 [58.7%]) reported diagnosed mental health conditions, including anxiety (1019 of 3541 [28.8%]) and depression (866 of 3541 [24.5%]). The Patient Health Questionnaire-9 depression screener showed that 55.0% of patients (1948 of 3541) had moderate to severe depressive symptoms; the highest rates were in India (271 of 303 [89.4%]) and among patients with more than 5% affected BSA (1154 of 1602 [72.0%]) and darker skin (987 of 1445 [68.3%]).

CONCLUSIONS AND RELEVANCE

This qualitative study found that, globally, patients with vitiligo reported being substantially affected in their emotional well-being, daily lives, and psychosocial health; the burden was typically greatest among patients with more than 5% affected BSA, darker skin types, and lesions on the face or hands. Survey findings suggest that patients reported having altered their behavior, expressed clear discontent, and have symptoms consistent with depression, which may be underdiagnosed.

摘要

重要性:患有白癜风的患者通常生活质量(QOL)受损,并经历大量的心理社会负担。

目的:从患者的角度探讨白癜风与生活质量和心理健康的全球关联。

设计、地点和参与者:这项基于横断面人群的白癜风与国际社区生活影响研究(VALIANT)的定性研究于 2021 年 5 月 6 日至 6 月 21 日进行。从一个在线小组中招募了这项定性研究的潜在参与者,该小组位于 17 个国家。在报告白癜风诊断的 5859 名接受调查的成年人(年龄≥18 岁)中,有 3919 人(66.9%)完成了调查,其中 3541 人(60.4%)纳入了分析。

暴露情况:患者被问及有关其情绪健康的问题,包括生活质量和心理健康。

主要结果和措施:报告的分析是描述性的和假设生成性的。白癜风影响患者量表(VIPs)的得分范围从 0 到 60,得分越高表示心理社会负担越重。

结果:3541 名患者的中位年龄为 38 岁(范围为 18-95 岁),其中 1933 人(54.6%)为男性;1602 名患者(45.2%)有超过 5%的受累体表面积(自我评估白癜风范围得分评估),1445 名患者(40.8%)为 Fitzpatrick 皮肤类型 IV 至 VI(即,皮肤较黑)。总体全球短式 VIPs 平均(标准差)得分为 27.3(15.6);来自印度的患者(平均[标准差],40.2[14.1])报告的分数最高(即负担最重)。根据该量表,受累体表面积超过 5%的患者(平均[标准差]得分,32.6[14.2])、皮肤较黑的患者(平均[标准差]得分,31.2[15.6])和面部(平均[标准差]得分,30.0[14.9])或手部(平均[标准差],29.2[15.2])有病变的患者的 QOL 负担严重。全球至少有 40%的患者报告说白癜风经常影响他们的日常生活,包括选择穿什么衣服(3541 名患者中有 1956 名[55.2%])。大多数患者(3541 名患者中有 2103 名[59.4%])经常隐瞒自己的白癜风。超过一半的患者(3541 名患者中有 2078 名[58.7%])报告有确诊的心理健康状况,包括焦虑(3541 名患者中有 1019 名[28.8%])和抑郁(3541 名患者中有 866 名[24.5%])。患者健康问卷-9 抑郁筛查器显示,55.0%的患者(3541 名患者中有 1948 名)有中度至重度抑郁症状;发病率最高的是印度(303 名患者中有 271 名[89.4%])和受累体表面积超过 5%的患者(1602 名患者中有 1154 名[72.0%])和皮肤较黑的患者(1445 名患者中有 987 名[68.3%])。

结论和相关性:这项定性研究发现,全球范围内,白癜风患者报告在情绪健康、日常生活和心理社会健康方面受到严重影响;在受累体表面积超过 5%、皮肤类型较深和面部或手部有病变的患者中,负担通常最大。调查结果表明,患者报告改变了他们的行为,明确表示不满,并出现了与抑郁一致的症状,这些症状可能被漏诊。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0469/10469285/dbcee48336fe/jamadermatol-e232787-g001.jpg

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