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拉丁裔患者对银屑病的信念、态度及经历。

Latine Patients' Beliefs, Attitudes, and Experience With Psoriasis.

作者信息

Gonzalez Nathaly, Wilkerson Kamina, Castillo Valladares Herbert, Sanchez-Anguiano Maria Elena, Chang Aileen Y, Amerson Erin H

机构信息

Medical College of Wisconsin, School of Medicine, Milwaukee.

University of California San Francisco School of Medicine, San Francisco.

出版信息

JAMA Dermatol. 2025 Mar 1;161(3):291-298. doi: 10.1001/jamadermatol.2024.5391.

Abstract

IMPORTANCE

In the US, Latine patients disproportionately experience severe psoriasis, limited access to care, and poor disease-related quality of life. However, little is known about psoriasis in this growing US population.

OBJECTIVES

To explore Latine patients' perception of their illness and their attitudes toward and experiences with the health care system, treatment, and research.

DESIGN, SETTING, AND PARTICIPANTS: In this qualitative study, a thematic analysis was performed of in-depth, semistructured interviews of 30 Latine adults with moderate to severe psoriasis at an outpatient dermatology clinic in an urban safety-net hospital. All patients included had psoriasis diagnosed by a dermatologist and were defined as having moderate to severe psoriasis if systemic treatment was offered at any time during their disease course. Interviews were held between July 7 and August 3, 2022. Data saturation was used to determine sample size.

MAIN OUTCOMES AND MEASURES

Interviews were conducted in English or Spanish, audio recorded, transcribed verbatim, and translated. Transcripts were then coded through an iterative process, and themes were identified through thematic analysis.

RESULTS

Among 30 participants included, the mean (SD) age was 50 (11) years, 20 (67%) were male, and 22 (73%) preferred Spanish. Among 15 participants who disclosed their country of origin or ancestry, 7 (23%) were from Mexico; 4 (13%), Guatemala; 2 (7%), El Salvador; 1 (3%), Honduras; 1 (3%), Nicaragua; and 1 (3%), Peru. Six interrelated themes describing participant experiences were identified: (1) illness perception of psoriasis, (2) reliance on sociofamilial connections for medical decision-making, (3) impact of psoriasis on work life, (4) barriers to accessing quality dermatologic care, (5) receptiveness to prescription and nonprescription treatments, and (6) positive perception and interest toward research.

CONCLUSIONS AND RELEVANCE

The findings of this study highlight the impact of psoriasis on Latine individuals, the efforts made by this population to overcome health disparities, their positive perception toward biologic medications, and their interest in participating in biomedical research. Future investigations should assess educational interventions and further explore the preferences of Latine patients toward biologic medications and biomedical research.

摘要

重要性

在美国,拉丁裔患者患重度银屑病的比例过高,获得医疗服务的机会有限,且与疾病相关的生活质量较差。然而,对于美国这一不断增长的人群中的银屑病情况,我们了解甚少。

目的

探讨拉丁裔患者对自身疾病的认知,以及他们对医疗保健系统、治疗和研究的态度与经历。

设计、背景和参与者:在这项定性研究中,对一家城市安全网医院门诊皮肤科诊所的30名患有中度至重度银屑病的拉丁裔成年人进行了深入的半结构化访谈,并进行了主题分析。所有纳入的患者均由皮肤科医生诊断为患有银屑病,若在其病程中的任何时候接受过全身治疗,则被定义为患有中度至重度银屑病。访谈于2022年7月7日至8月3日进行。采用数据饱和法确定样本量。

主要结局和测量指标

访谈以英语或西班牙语进行,进行录音、逐字转录并翻译。然后通过迭代过程对转录本进行编码,并通过主题分析确定主题。

结果

在纳入的30名参与者中,平均(标准差)年龄为50(11)岁,20名(67%)为男性,22名(73%)更喜欢西班牙语。在15名披露其原籍国或祖籍的参与者中,7名(23%)来自墨西哥;4名(13%)来自危地马拉;2名(7%)来自萨尔瓦多;1名(3%)来自洪都拉斯;1名(3%)来自尼加拉瓜;1名(3%)来自秘鲁。确定了描述参与者经历的六个相互关联的主题:(1)对银屑病的疾病认知,(2)在医疗决策中对社会家庭关系的依赖,(3)银屑病对工作生活的影响,(4)获得优质皮肤科护理的障碍,(5)对处方药和非处方药治疗的接受程度,以及(6)对研究的积极认知和兴趣。

结论和相关性

本研究结果突出了银屑病对拉丁裔个体的影响、该人群为克服健康差距所做的努力、他们对生物药物的积极认知以及他们参与生物医学研究的兴趣。未来的调查应评估教育干预措施,并进一步探索拉丁裔患者对生物药物和生物医学研究的偏好。

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