Department of Nursing, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
Department of Rheumatology and Immunology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
Psychol Health Med. 2024 Jun;29(5):1035-1043. doi: 10.1080/13548506.2023.2270511. Epub 2023 Oct 15.
Systemic lupus erythematosus (SLE) might affect all aspects of life including perceived stigma, but research on perceived stigma is still in its infancy among SLE patients. The objective of this study was to assess the relationships among socioeconomic status, clinical parameters, disease activity, quality of life, depression, and the perceived stigma in Chinese patients with SLE. A total of 133 SLE patients (mean age: 39.36 ± 12.91 years) were included in this cross-sectional study. All data were collected consecutively by face-to-face questionnaires from January 2021 to January 2022. SLE patients completed questionnaires for demographic or clinical variables, the 10-cm Visual Analog Scale for pain, the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) for disease activity, the patient health questionnaire-9 (PHQ-9) for depression, the Perceived Devaluation Discrimination (PDD) Scale for the perceived stigma, and the Short Form 12 health survey (SF-12) for quality of life. Independent sample t-test, Spearman or Pearson correlations analysis, and the multivariable linear regression model were used to analyze these data. The mean PDD scale score in the SLE patients was 2.79 ± 0.33, which were statistically significant compared with the midpoint (2.50 ± 0.38) of the scale ( < 0.05). The perceived stigma was significantly correlated with income, pain, disease activity, depression, and quality of life. The SF-12 mental composite summaries (MCS) score and depression were the important predictors of the perceived stigma by the multivariable linear regression. This study demonstrates that psychological status is significantly associated with the perceived illness stigma in Chinese SLE patients; dealing with this stigma may be important in promoting optimal coping for these patients.
系统性红斑狼疮（SLE）可能会影响生活的各个方面，包括感知到的耻辱感，但在 SLE 患者中，对感知耻辱感的研究仍处于起步阶段。本研究的目的是评估中国 SLE 患者的社会经济地位、临床参数、疾病活动、生活质量、抑郁与感知耻辱感之间的关系。本横断面研究共纳入 133 例 SLE 患者（平均年龄：39.36±12.91 岁）。所有数据均于 2021 年 1 月至 2022 年 1 月通过面对面问卷连续收集。SLE 患者完成了人口统计学或临床变量、10cm 视觉模拟量表疼痛、疾病活动的系统性红斑狼疮疾病活动指数（SLEDAI）、抑郁的患者健康问卷-9（PHQ-9）、感知贬值歧视（PDD）量表感知耻辱感和健康调查简表 12 项（SF-12）生活质量的问卷。采用独立样本 t 检验、Spearman 或 Pearson 相关分析和多变量线性回归模型对这些数据进行分析。SLE 患者的平均 PDD 量表评分为 2.79±0.33，与量表的中点（2.50±0.38）相比具有统计学意义（ < 0.05）。感知耻辱感与收入、疼痛、疾病活动、抑郁和生活质量显著相关。SF-12 心理综合摘要（MCS）评分和抑郁是多变量线性回归中感知耻辱感的重要预测因素。本研究表明，心理状态与中国 SLE 患者感知疾病耻辱感显著相关；应对这种耻辱感可能对促进这些患者的最佳应对很重要。
