Lupus Europe, Brussels, Belgium.
Department of Oncology and Hemato-Oncology, University of Milan, Milano, Italy
Lupus Sci Med. 2022 May;9(1). doi: 10.1136/lupus-2022-000656.
Previous research on coping strategies of patients with SLE showed that there are no absolute adaptive or maladaptive strategies and that the range of potential coping strategies is large and heterogeneous. In this paper, we aimed to identify, in a large sample of patients with SLE (N=3222), the most frequent words used by patients to describe their coping strategies, to group them into significant themes and to test their possible association with specific patient characteristics.
Our analyses were based on the data set of the European survey 'Living with Lupus in 2020' (N=3222). Through the T-LAB software, we analysed the answers that adult participants gave to an open-ended question about how they cope with the disease. We identified the most frequent words, and with hierarchical cluster analysis we grouped them into semantic clusters (ie, themes) that were characterised by specific patterns of words. Finally, we tested the possible association between clusters and illustrative variables (sociodemographics, disease characteristics, quality of life).
Five coping strategies were identified, each of them constituting an important percentage of the total word occurrences: positive attitude (22.58%), social support (25.46%), medical treatments (10.77%), healthy habits (20.74%) and avoid stress (20.45%). Each strategy was statistically associated with specific patient characteristics, such as age and organ involvement.
Learning to adapt to a lifetime of having SLE may require replacing old coping strategies with more effective ones. Investigating patients' coping strategies in relation to different patient characteristics represents a useful starting point for developing more targeted and efficacious interventions.
先前关于系统性红斑狼疮（SLE）患者应对策略的研究表明，不存在绝对适应性或不适应性的应对策略，潜在应对策略的范围很大且具有异质性。本文旨在从大量 SLE 患者（N=3222）中确定患者用来描述其应对策略的最常见词汇，将其分为有意义的主题，并检验其与特定患者特征的可能关联。
我们的分析基于“2020 年狼疮患者的生活”欧洲调查的数据集（N=3222）。通过 T-LAB 软件，我们分析了成年参与者对如何应对疾病的开放性问题的回答。我们确定了最常见的词汇，并通过层次聚类分析将其分为语义聚类（即主题），这些主题具有特定的词汇模式。最后，我们检验了聚类与说明性变量（社会人口统计学、疾病特征、生活质量）之间的可能关联。
确定了五种应对策略，每种策略都占总词汇出现率的重要比例：积极态度（22.58%）、社会支持（25.46%）、医疗治疗（10.77%）、健康习惯（20.74%）和避免压力（20.45%）。每种策略都与特定的患者特征（如年龄和器官受累）有统计学关联。
学会适应终身患有 SLE 可能需要用更有效的应对策略来取代旧的应对策略。根据不同的患者特征研究患者的应对策略是开发更有针对性和更有效的干预措施的一个有用起点。
