Rheumatology Department, Hospital Universitario 12 de Octubre, Madrid, Spain.
Hospital Pharmacy, Hospital de Sagunto, Sagunto, Spain.
Lupus. 2024 Jun;33(7):663-674. doi: 10.1177/09612033241242886. Epub 2024 Apr 5.
Systemic lupus erythematosus (SLE) is an autoimmune condition that can highly impact patients' quality of life (QoL). However, there is a lack of knowledge about SLE, affecting the general population and health care professionals (HCPs) alike. This lack of knowledge has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. The aim of this paper is to draw attention, according to the perspective of the participants of this study, to the lack of awareness of SLE and its consequences in Spain, and to suggest improvements.
This qualitative, descriptive, observational, multicenter, and cross-sectional study included 40 patients with moderate or severe SLE, recruited during their routine visits in six university hospitals in Spain. The study also included 11 caregivers and 9 HCPs. All participants were individually interviewed. Data from the interviews were coded and analyzed thematically by two anthropologists following a phenomenological perspective.
Our study identified a lack of disease awareness among primary care physicians, emergency medicine doctors, and other specialists treating SLE symptomatology. This led to diagnostic delays, which had a clinical and emotional impact on patients. Furthermore, symptom awareness was found to be context dependent. Differences in symptom awareness between HCPs and patients led to a mismatch between the severity evaluation made by doctors and patients. Some HCPs did not consider the limitations of the current severity evaluation of SLE, and therefore attributed symptoms potentially caused by SLE to the unfavorable socioeconomic conditions patients lived in. Finally, a lack of social awareness among friends, family members, and romantic partners led to lower social support, increased isolation, and negative physical and emotional impact for patients. Gender differences in the provision of support were identified.
This study highlights the need to increase SLE awareness among patients, HCPs, and the broader public in order to improve patient QoL. Being aware of the clinical and emotional impact of such lack of awareness, as well as the role played by context on the patient experience of SLE, is a crucial step towards achieving this goal.
系统性红斑狼疮（SLE）是一种自身免疫性疾病，会对患者的生活质量（QoL）产生重大影响。然而，人们对 SLE 的认识不足，这不仅影响了普通人群，也影响了医疗保健专业人员（HCPs）。这种缺乏知识会对患者和医疗保健系统产生负面影响，导致预后恶化、生活质量下降以及医疗保健利用增加。本文旨在根据研究参与者的观点，引起人们对西班牙 SLE 认知不足及其后果的关注，并提出改进建议。
本研究为定性、描述性、观察性、多中心和横断面研究，纳入了 40 名中度或重度 SLE 患者，这些患者是在西班牙六所大学医院就诊时招募的。研究还纳入了 11 名护理人员和 9 名 HCPs。所有参与者均接受了单独访谈。访谈数据采用两位人类学家遵循现象学观点进行编码和主题分析。
我们的研究发现，初级保健医生、急诊医生和其他治疗 SLE 症状的专科医生对该病的认识不足。这导致了诊断延迟，对患者的临床和情绪产生了影响。此外，症状意识还取决于背景。HCPs 和患者之间的症状意识差异导致医生和患者对疾病严重程度的评估不匹配。一些 HCPs 没有考虑 SLE 当前严重程度评估的局限性，因此将可能由 SLE 引起的症状归因于患者所处的不利社会经济状况。最后，朋友、家人和恋人对 SLE 的认识不足导致患者获得的社会支持减少、孤立感增加以及身体和情绪受到负面影响。我们还发现了在提供支持方面存在的性别差异。
本研究强调了需要提高患者、HCPs 和更广泛公众对 SLE 的认识，以改善患者的生活质量。意识到这种认识不足的临床和情绪影响，以及背景对 SLE 患者体验的作用，是实现这一目标的关键步骤。
