GlaxoSmithKline GmbH & Co. KG, Prinzregentenplatz 9, 81675 Munich, Germany.
Best Pract Res Clin Rheumatol. 2013 Jun;27(3):363-75. doi: 10.1016/j.berh.2013.07.009.
This chapter aims to evaluate current knowledge of the burden of systemic lupus erythematosus (SLE) on individual patients, with a particular focus on health-related quality of life (HRQoL), activities of daily living (ADLs), individual symptoms, such as fatigue and pain, work disability and employment.
A literature search was performed in Medline (PubMed) and a qualitative analysis was done of all publications relating to the burden of SLE (January 2000 to May 2010, updated in June 2013) matching the following inclusion criteria: prospective studies involving ≥100 patients with SLE; studies focussing on QoL, ADL, function/disability, patient perceptions/experience of their illness, physical/psychological/social impact, unmet needs, work disability/employment status or specific signs/symptoms expected to impact on HRQoL/ADL; studies predominantly involving patients of Caucasian ethnicity; and studies based in Europe, North America or Australia. Studies in juvenile patients; studies of the impact of obesity; studies of non-pharmacological interventions, dietary supplements or alternative medicines; and health-economic analyses were excluded.
RESULTS/CONCLUSIONS: The present literature analysis showed that SLE has a considerable impact on the HRQoL of patients and their ability to carry out normal daily activities, resulting in a high prevalence of disability. The HRQoL of patients with SLE is consistently lower than that of matched healthy control subjects or patients with other chronic diseases. Predictors of poor HRQoL in patients with SLE include older age, fatigue and the presence of co-morbid neurological or psychiatric disorders, particularly depression or anxiety. Conversely, clinical measures of disease activity and organ damage are poor indicators of patients' HRQoL. Even though current evidence gives an insight into the HRQoL in patients with SLE, there are still many areas where results need to be confirmed or clarified and therefore there is the need to conduct further studies including trials with HRQoL as a primary objective.
本章旨在评估系统性红斑狼疮（SLE）对个体患者的负担，重点关注健康相关生活质量（HRQoL）、日常生活活动（ADL）、个体症状（如疲劳和疼痛）、工作能力丧失和就业情况。
在 Medline（PubMed）上进行文献检索，并对所有与 SLE 负担相关的出版物进行定性分析（2000 年 1 月至 2010 年 5 月，2013 年 6 月更新），符合以下纳入标准：纳入≥100 例 SLE 患者的前瞻性研究；关注生活质量、ADL、功能/残疾、患者对疾病的认知/体验、身体/心理/社会影响、未满足的需求、工作能力丧失/就业状况或预计影响 HRQoL/ADL 的特定体征/症状的研究；主要纳入白种人患者的研究；基于欧洲、北美或澳大利亚的研究。排除青少年患者研究、肥胖影响研究、非药物干预、膳食补充剂或替代药物研究以及健康经济学分析研究。
结果/结论：目前的文献分析表明，SLE 对患者的 HRQoL 和进行日常活动的能力有很大影响，导致残疾的高发生率。SLE 患者的 HRQoL 始终低于匹配的健康对照组或其他慢性疾病患者。SLE 患者 HRQoL 差的预测因素包括年龄较大、疲劳和存在合并的神经或精神疾病，特别是抑郁或焦虑。相反，疾病活动和器官损伤的临床指标并不能很好地反映患者的 HRQoL。尽管目前的证据为 SLE 患者的 HRQoL 提供了一些见解，但仍有许多领域需要进一步确认或澄清，因此需要开展进一步的研究，包括将 HRQoL 作为主要目标的试验。
