Department of Neurology, University Medicine of Greifswald, Greifswald, Germany.
Department of Psychiatry, University of Leipzig, Leipzig, Germany.
Int J Behav Med. 2022 Aug;29(4):517-523. doi: 10.1007/s12529-021-10030-0. Epub 2021 Oct 12.
Anticipated and experienced stigma constitute important issues for patients with multiple sclerosis receiving adequate healthcare. Stigma is likely to be associated with lower quality of life in patients with multiple sclerosis, but the underlying mechanisms and contributing factors are unclear.
We conducted a cross-sectional survey among N = 101 patients with a diagnosis of multiple sclerosis in a German outpatient department. Patients completed questionnaires on enacted and self-stigma (SSCI-8), sense of coherence (SOC-L9) and quality of life (MusiQol). Age, sex, disease duration, disability or extent of limitations (EDSS), cognition (SDMT), depression (BDI-II) and fatigue (FSMC) were used as covariates in linear regression and mediation models.
57.3% of patients with MS reported having experienced stigmatization due to MS at least once. Fatigue (b = -0.199, p < 0.001), enacted stigmatization experience (b = -0.627, p = 0.010) and sense of coherence (b = 0.654, p < 0.001) were significant predictors for quality of life. The mediation analysis showed a partial mediation of the association between enacted stigma and quality of life by patients' sense of coherence (direct effect: b = -1.042, t = -4.021, p < 0.001; indirect effect: b = -0.773, CI = -1.351--0.339. The association of self-stigma with quality of life was fully mediated by sense of coherence (b = -1.579, CI = -2.954--0.669).
Patients with multiple sclerosis are affected by stigma, which is associated with lower quality of life. Sense of coherence is a potentially important mediator of stigma and represents a promising target to refine existing stigma interventions and improve the quality of life in these patients.
预期和经历的污名化是接受充分医疗保健的多发性硬化症患者的重要问题。污名化可能与多发性硬化症患者的生活质量较低有关，但潜在机制和促成因素尚不清楚。
我们在德国门诊部门对 101 名多发性硬化症患者进行了横断面调查。患者完成了关于实施和自我污名化（SSCI-8）、心理社会弹性（SOC-L9）和生活质量（MusiQol）的问卷。年龄、性别、疾病持续时间、残疾或受限程度（EDSS）、认知（SDMT）、抑郁（BDI-II）和疲劳（FSMC）在线性回归和中介模型中用作协变量。
57.3%的多发性硬化症患者报告至少经历过一次因多发性硬化症而受到污名化。疲劳（b=-0.199，p<0.001）、实施污名化经历（b=-0.627，p=0.010）和心理社会弹性（b=0.654，p<0.001）是生活质量的显著预测因素。中介分析表明，患者的心理社会弹性部分中介了实施污名化与生活质量之间的关联（直接效应：b=-1.042，t=-4.021，p<0.001；间接效应：b=-0.773，CI=-1.351--0.339）。自我污名化与生活质量的关系完全由心理社会弹性介导（b=-1.579，CI=-2.954--0.669）。
多发性硬化症患者受到污名化的影响，这与生活质量较低有关。心理社会弹性是污名化的一个潜在重要中介因素，代表了一个有前途的目标，可以完善现有的污名化干预措施，提高这些患者的生活质量。
