Center for Rheumatology, Academic Specialist Center, Stockholm, Sweden.
School of Health Sciences, Örebro University, Örebro, Sweden.
Lupus. 2024 Nov;33(13):1435-1445. doi: 10.1177/09612033241284093. Epub 2024 Sep 17.
Pain is one of the most frequently reported symptoms and often one of the first subjective symptoms in patients with systemic lupus erythematosus (SLE). A previous study indicated that most patients with SLE reported low levels of SLE-related pain. However, a subgroup of patients reported high levels of pain ≥40 mm (0-100 mm) and had a substantial symptom burden in terms of fatigue, anxiety, depression, and reduced health-related quality of life. Thus, there is a need to elucidate the implications of high levels of pain in everyday life.
This study explored the patient's experiences and implications of SLE-related pain in daily life and the support requested from healthcare providers.
A total of 20 patients, previously reported high levels of SLE-related pain intensity measuring ≥40 mm (0-100 mm) in a research context at one or two occasions participated in individual semi-structured interviews, which were transcribed and analysed with content analysis.
The interviews revealed four main categories and 13 generic categories. SLE-associated pain was described by its , exhibiting longstanding, unpredictable, migrating, and various physical sensations. The pain entailed , restricting everyday life by interfering with roles and relationships and causing various emotions, including existential thoughts. The informants used , including their inner resources, support from family and significant others, and pharmaceuticals and relieving treatments. They expressed the need for , which involved individualized support and accessibility of healthcare.
This study provides comprehensive insights into the nature and multifaceted impact of SLE-related pain in different dimensions of the informants' daily lives. Except for medications the informants used several strategies, including their inner resources and support from family and others, to manage the pain. Support requested from healthcare providers by the informants included understanding, compassion, individualized care and accessibility.
疼痛是系统性红斑狼疮（SLE）患者最常报告的症状之一，通常也是最早出现的主观症状之一。先前的研究表明，大多数 SLE 患者报告的 SLE 相关疼痛程度较低。然而，有一小部分患者报告疼痛程度较高（≥40 毫米（0-100 毫米）），并且在疲劳、焦虑、抑郁和降低健康相关生活质量方面存在较大的症状负担。因此，需要阐明日常生活中高水平疼痛的意义。
本研究探讨了患者在日常生活中对 SLE 相关疼痛的体验和影响，以及他们对医疗保健提供者的需求。
共有 20 名患者，先前在研究环境中报告过两次或两次以上的 SLE 相关疼痛强度测量值≥40 毫米（0-100 毫米），他们参加了个人半结构化访谈，访谈内容被转录并使用内容分析进行分析。
访谈揭示了四个主要类别和 13 个通用类别。SLE 相关疼痛的特点是其，表现为长期、不可预测、迁移和各种身体感觉。疼痛会导致，通过干扰角色和关系来限制日常生活，并引起各种情绪，包括存在主义的想法。受访者使用了，包括他们的内在资源、家人和重要他人的支持以及药物和缓解治疗。他们表达了对的需求，这涉及到个性化的支持和医疗保健的可及性。
本研究提供了对 SLE 相关疼痛在受访者日常生活不同维度的性质和多方面影响的全面了解。除了药物治疗外，受访者还使用了几种策略，包括他们的内在资源和家人及他人的支持，来管理疼痛。受访者向医疗保健提供者提出的支持包括理解、同情、个性化护理和可及性。
