银屑病患者对伴侣的负担：国际银屑病家庭研究结果
Burden to Partners of People with Psoriasis: Results from the FamilyPso International Study.
作者信息
Mrowietz Ulrich, Meyer Crispin, Großschädl Katja, Weger Wolfgang, Wolf Peter, Gooderham Melinda, O'Toole Ashley, Vender Ron, Gerdes Sascha, Körber Andreas, Bellinato Francesco, Gisondi Paolo, Bardazzi Federico, Sacchelli Lidia, Zengarini Corrado, Dauden Esteban, Llamas-Velasco Mar, Santamaría Cristina, Abalde Teresa, Flórez Ángeles, Salgado-Boquete Laura, Baskan Emel Bulbul, Solak Sezgi Sarikaya, Hartmann Armin
机构信息
Department of Dermatology, Psoriasis-Center, University Medical Center Schleswig-Holstein, Campus Kiel, Arnold-Heller-Str. 3, Bldg. U27, 24105, Kiel, Germany.
Department of Dermatology, Medical University of Graz, Graz, Austria.
出版信息
Am J Clin Dermatol. 2025 Apr 15. doi: 10.1007/s40257-025-00944-w.
BACKGROUND
Psoriatic disease is a lifelong chronic illness for which there is no cure. It is well established that psoriasis leads to a major impairment of health-related quality-of-life and wellbeing. Most people with psoriasis live together with partners, bringing along a major burden for them. The FamilyPso was created to measure this burden in psoriasis.
OBJECTIVE
The aim of the FamilyPso international study was to validate this tool and to show feasibility for the use of the FamilyPso across multiple countries.
METHODS
A prospective cohort study was conducted in 11 centers in Austria, Canada, Germany, Italy, Spain, and Turkey. The factor structure of the FamiliyPso was examined by confirmatory factor analysis (CFA) including tests of measurement invariance for gender and language. Subgroups (e.g., countries and gender) were tested for significant differences, and the relationship between the severity of illness and FamilyPso scores was tested for differences between countries using a mixed regression model. Descriptive statistics for items and scores are presented herein.
RESULTS
The cohort consisted of 556 people with psoriasis and their partners. Patients agreed that their partners would answer the questionnaire in their absence and return the forms to the centers. The mean age of patients and partners was 51 years. Psoriasis severity was mild in 57.6%, moderate in 31.5%, and severe in 10.9% of cases, and 91.3% received treatment. The results of the CFA confirmed the original factor structure with minor modifications. Self-assessed high severity of psoriasis was a predictor for a higher burden in 4/5 FamilyPso domains. There was an increased burden to partners related to the severity of psoriasis particularly in the domain "general emotional strain," including items such as a "feeling of helplessness." The results of the study showed that the FamilyPso could assess the burden of partners of people with psoriasis and can be used across different countries.
CONCLUSIONS
The data can improve management of psoriatic disease and should be considered in shared decision-making.
背景
银屑病是一种无法治愈的终身慢性疾病。众所周知，银屑病会严重损害健康相关生活质量和幸福感。大多数银屑病患者与伴侣共同生活，给伴侣带来了沉重负担。FamilyPso旨在衡量银屑病带来的这种负担。
目的
FamilyPso国际研究的目的是验证该工具，并展示其在多个国家使用的可行性。
方法
在奥地利、加拿大、德国、意大利、西班牙和土耳其的11个中心进行了一项前瞻性队列研究。通过验证性因子分析（CFA）检查FamilyPso的因子结构，包括性别和语言的测量不变性测试。对亚组（如国家和性别）进行显著差异测试，并使用混合回归模型测试疾病严重程度与FamilyPso评分之间的关系在不同国家之间的差异。本文给出了项目和评分的描述性统计数据。
结果
该队列由556名银屑病患者及其伴侣组成。患者同意其伴侣在他们不在场时回答问卷并将表格返回中心。患者和伴侣的平均年龄为51岁。57.6%的病例银屑病严重程度为轻度，31.5%为中度，10.9%为重度，91.3%接受了治疗。CFA结果证实了原始因子结构，并进行了微小修改。自我评估的银屑病高严重程度是4/5个FamilyPso领域负担加重的预测因素。与银屑病严重程度相关的伴侣负担增加，特别是在“一般情绪紧张”领域，包括“无助感”等项目。研究结果表明，FamilyPso可以评估银屑病患者伴侣的负担，并且可以在不同国家使用。
结论
这些数据可以改善银屑病的管理，在共同决策时应予以考虑。
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