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采用修订版 Wilson 和 Cleary 模型评估红斑狼疮患者生活质量的相关因素。

Factors associated with quality of life in cutaneous lupus erythematosus using the Revised Wilson and Cleary Model.

机构信息

College of Pharmacy, University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA.

Department of Dermatology, University of Texas Southwestern Medical Center, Dallas, TX, USA.

出版信息

Lupus. 2020 Nov;29(13):1691-1703. doi: 10.1177/0961203320951842. Epub 2020 Sep 3.

Abstract

OBJECTIVES

The purpose of this study was to characterize the impact of cutaneous lupus erythematosus (CLE) in adults and identify the clinical and non-clinical factors associated with quality of life (QoL), using the Revised Wilson and Cleary Model.

METHODS

101 patients diagnosed with CLE were included in this cross-sectional study. QoL was measured with the Cutaneous Lupus Erythematosus Quality of Life (CLEQoL) scale and disease activity and damage with the Cutaneous Lupus Activity and Severity Index (CLASI). Patient demographics, clinical, and disease characteristics were also collected. Descriptive statistics were calculated, and multiple regression was employed to determine significant (p < 0.05) predictors of overall QoL. Data were analyzed using SPSS v24.

RESULTS

The overall regression QoL model was significantly different from zero, (F = 24.96; df = 14, 76; p = <0.001). Disease activity (β = 0.13), pain (β = 0.13), fatigue (β = 0.24), body image (β = 0.62), and side effects (β = -0.13) were significant predictors of overall QoL while controlling for other predictor variables. Patients who experienced higher levels of disease activity, fatigue severity, pain levels, and greater degree of body dissatisfaction had significantly poorer QoL. Fewer side effects experienced from CLE medications were significantly associated with higher QoL.

CONCLUSIONS

Study findings support the considerable burden associated with CLE. Several modifiable variables such as pain, fatigue, body image, and disease activity were associated with QoL. Therefore, interventions that incorporate these variables may reduce negative impacts on QoL life and improve health outcomes in CLE patients. Furthermore, given the chronic and recurring nature of the condition, strategies focused on improving QoL are needed for this vulnerable population.

摘要

目的

本研究旨在描述成人皮肤红斑狼疮(CLE)的影响,并使用修订后的 Wilson 和 Cleary 模型确定与生活质量(QoL)相关的临床和非临床因素。

方法

本横断面研究纳入了 101 例确诊为 CLE 的患者。使用皮肤狼疮红斑生活质量量表(CLEQoL)和皮肤狼疮活动和严重程度指数(CLASI)评估 QoL,同时收集患者的人口统计学、临床和疾病特征。计算描述性统计数据,并采用多元回归分析确定整体 QoL 的显著(p<0.05)预测因子。使用 SPSS v24 进行数据分析。

结果

整体回归 QoL 模型与零显著不同(F=24.96;df=14,76;p<0.001)。疾病活动度(β=0.13)、疼痛(β=0.13)、疲劳(β=0.24)、身体形象(β=0.62)和副作用(β=-0.13)是整体 QoL 的显著预测因子,同时控制了其他预测变量。疾病活动度、疲劳严重程度、疼痛水平和身体不满程度较高的患者 QoL 显著较差。经历较少 CLE 药物副作用的患者 QoL 显著较高。

结论

研究结果支持 CLE 相关的巨大负担。一些可改变的变量,如疼痛、疲劳、身体形象和疾病活动度,与 QoL 相关。因此,纳入这些变量的干预措施可能会减轻对 QoL 的负面影响,并改善 CLE 患者的健康结局。此外,鉴于该疾病的慢性和复发性性质,需要针对这一脆弱人群制定改善 QoL 的策略。

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