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银屑病患者的健康状况:运用最佳-最差尺度法对其组成部分进行加权分析

Well-Being in Psoriasis: Weighting its Components Using Best-worst Scaling Methodology.

作者信息

Daudén Esteban, Belinchón Isabel, Colominas-González Elena, Coto Pablo, de la Cueva Pablo, Gallardo Fernando, Poveda Jose Luis, Ramírez Esther, Ros Sandra, Ruíz-Villaverde Ricardo, Cabezas Isabel, Lizán Luis

机构信息

Department of Dermatology, Hospital Universitario de La Princesa, Instituto de Investigación Sanitaria de La Princesa (IIS-IP), Diego de León, 62, 28006, Madrid, Spain.

Department of Dermatology, Hospital General Universitario Dr Balmis-ISABIAL-UMH, Alicante, Spain.

出版信息

Dermatol Ther (Heidelb). 2025 Jul 18. doi: 10.1007/s13555-025-01499-8.

DOI:10.1007/s13555-025-01499-8
PMID:40679753
Abstract

INTRODUCTION

The Inpsight Project, established in 2021, aimed to define the concept of well-being in patients with psoriasis from a holistic perspective. Well-being was defined as a multi-dimensional concept that includes achieving emotional balance, having adequate overall health and control of the disease, enjoying positive social relationships, and being satisfied with disease care. However, while these components are recognized as integral to the concept, their relative contribution to achieving optimal well-being remains unclear. To address this gap, the present study aimed to determine the relative weight of each component in contributing to optimal well-being, focusing on a Spanish population.

METHODS

An observational, descriptive, cross-sectional study was conducted in Spain using best-worst scaling (BWS). Two questionnaires were developed: one addressed to patients (33 item) and the other to healthcare professionals (HCPs) (18 item). The questionnaires collected sociodemographic and clinical (patients)/occupational (HCP) characteristics of the participants and the BWS scenarios. The 20 components of well-being were randomly distributed across 76 scenarios, with each component paired with others four times to ensure a comprehensive evaluation of all possible combinations. Participants assessed 9-10 randomly selected scenarios and identified the components they considered most (best) and least (worst) important for achieving optimal well-being.

RESULTS

A total of 87 HCPs and 152 patients with psoriasis participated in the study. The five key components for patients were pain (P: 100.00), stress (P: 98.74), treatment satisfaction (92.21), itching (72.05), and lesions in functional locations (P: 69.09). From a HCP perspective, the most important components were mood disorders (100.00), pain (69.39), lesions in functional locations (49.34), self-esteem (49.24), and stigmatization/shame (45.22).

CONCLUSIONS

This study highlights the differences between patients and HCPs in their perception of the relative importance and relevance of the components contributing to the well-being of patients with psoriasis. Future research should focus on understanding the cumulative impact of psoriasis on patient well-being.

摘要

引言

2021年设立的洞察项目旨在从整体角度界定银屑病患者的健康概念。健康被定义为一个多维概念,包括实现情绪平衡、拥有足够的整体健康状况和对疾病的控制、享受积极的社会关系以及对疾病护理感到满意。然而,虽然这些组成部分被认为是该概念不可或缺的,但它们对实现最佳健康的相对贡献仍不明确。为了填补这一空白,本研究旨在确定各组成部分对实现最佳健康的相对权重,重点关注西班牙人群。

方法

在西班牙采用最佳-最差尺度法(BWS)进行了一项观察性、描述性横断面研究。编制了两份问卷:一份发给患者(33项),另一份发给医疗保健专业人员(HCPs)(18项)。问卷收集了参与者的社会人口统计学和临床(患者)/职业(HCP)特征以及BWS情景。将20个健康组成部分随机分布在76个情景中,每个组成部分与其他组成部分配对四次,以确保对所有可能的组合进行全面评估。参与者评估9至10个随机选择的情景,并确定他们认为对实现最佳健康最重要(最佳)和最不重要(最差)的组成部分。

结果

共有87名HCPs和152名银屑病患者参与了该研究。对患者来说,五个关键组成部分是疼痛(P:100.00)、压力(P:98.74)、治疗满意度(92.21)、瘙痒(72.05)以及功能部位的皮损(P:69.09)。从HCPs的角度来看,最重要的组成部分是情绪障碍(100.00)、疼痛(69.39)、功能部位的皮损(49.34)、自尊(49.24)以及污名化/羞耻感(45.22)。

结论

本研究突出了患者与HCPs在对银屑病患者健康组成部分的相对重要性和相关性认知上的差异。未来的研究应侧重于了解银屑病对患者健康的累积影响。

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本文引用的文献

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Defining well-being in psoriasis: A Delphi consensus among healthcare professionals and patients.定义银屑病患者的幸福感:医疗保健专业人员和患者的德尔菲共识。
Sci Rep. 2024 Jun 24;14(1):14519. doi: 10.1038/s41598-024-64738-6.
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银屑病和银屑病关节炎对生活质量及抑郁症状有重大影响:一项对300例患者的横断面研究
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Quality of life and stigmatization in people with skin diseases in Europe: A large survey from the 'burden of skin diseases' EADV project.欧洲皮肤病患者的生活质量与污名化:来自“皮肤病负担”欧洲皮肤病与性病学会项目的一项大型调查
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