Devilliers H, Vernier N, Muller G, Turcu A, Samson M, Bielefeld P, Besancenot J-F
Service de médecine interne et maladies systémiques (médecine interne 2), hôpital François-Mitterrand, 14, rue Paul-Gaffarel, BP 77908, 21079 Dijon cedex, France.
Service de médecine interne et maladies systémiques (médecine interne 2), hôpital François-Mitterrand, 14, rue Paul-Gaffarel, BP 77908, 21079 Dijon cedex, France.
Rev Med Interne. 2018 Feb;39(2):107-116. doi: 10.1016/j.revmed.2017.03.004. Epub 2017 Apr 28.
Systemic lupus erythematosus (SLE) is a chronic disease that considerably hampers patient's daily living. Qualitative studies with patients' interviews have been conducted to describe the experiences and perspectives of adults living with SLE. Among existing generic and disease-specific quality of life (QOL) questionnaires, none succeeded to exhaustively measure patient's preoccupations. However, these tools are useful to quantify the burden of the disease. Social precariousness, socioeconomic status and education level are intimately correlated to QOL measures, either generic or disease-specific. Musculoskeletal disease activity is also associated with a lower QOL. Using disease-specific tools may be useful because of a better aptitude to record an improvement in health status. Moreover, using generic and disease-specific questionnaires together may help to identify factors associated with a lower quality of life but not related to SLE from the patient's perspective (such as smoking or obesity). Developing new ways of recording QOL data in the future may help to evaluate the real benefit of using QOL scales in daily practice.
系统性红斑狼疮(SLE)是一种严重影响患者日常生活的慢性疾病。已开展了对患者进行访谈的定性研究,以描述成年SLE患者的经历和观点。在现有的通用和特定疾病生活质量(QOL)问卷中,没有一个能够全面衡量患者所关注的问题。然而,这些工具对于量化疾病负担是有用的。社会不稳定、社会经济地位和教育水平与通用或特定疾病的生活质量测量密切相关。肌肉骨骼疾病活动也与较低的生活质量相关。使用特定疾病工具可能会很有用,因为它更有能力记录健康状况的改善。此外,同时使用通用和特定疾病问卷可能有助于从患者角度识别与较低生活质量相关但与SLE无关的因素(如吸烟或肥胖)。未来开发记录生活质量数据的新方法可能有助于评估在日常实践中使用生活质量量表的实际益处。