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系统性红斑狼疮的人文和经济负担:系统评价。

The humanistic and economic burden of systemic lupus erythematosus : a systematic review.

机构信息

Centre for Health Economics, Institute of Population Health, The University of Manchester, Manchester Academic Health Sciences Centre, 1.320 Jean McFarlane Building, Oxford Road, Manchester, M13 9PL, UK.

出版信息

Pharmacoeconomics. 2013 Jan;31(1):49-61. doi: 10.1007/s40273-012-0007-4.

Abstract

BACKGROUND

Increased survival in patients with systemic lupus erythematosus (SLE) has shifted attention towards the burden that SLE imposes upon patients, healthcare systems and society. New interventions aimed at alleviating this burden will require economic evaluation. A summary of the current evidence of the humanistic and economic burden provides a platform for such subsequent studies.

OBJECTIVE

The objective of this study was to systematically review the current evidence on the humanistic and economic burden of SLE in terms of health-related quality of life (HR-QOL) and costs, and summarize the evidence on the factors found to be associated with this burden.

METHODS

Relevant literature for the years 1990 to February 2011 were obtained from systematic searches of MEDLINE, EMBASE and Web of Science. Articles reporting the humanistic (preference-based outcome measures or an SLE disease-specific HR-QOL measure) or economic burden (costs) of SLE in adult populations published in English were identified. The following exclusion criteria were applied: studies specifically examining lupus nephritis, SLE not being the main condition of focus (e.g. SLE is a co-existing condition), studies focusing on diagnostics or tests (including genetics and antibodies), mixed patient groups from which SLE could not be separated, paediatric populations, case studies, abstract unavailable, and non-English language studies. Estimates of the burden in terms of either HR-QOL or costs were extracted, tabulated and reported narratively. Annual cost figures were also converted into year 2010 US dollars using the consumer price index (CPI) and the purchasing power parity (PPP) conversion factor to allow for greater comparability across studies. Evidence on the factors found to be independently associated with either HR-QOL or costs was also examined.

RESULTS

Of the 1969 studies initially identified as being potentially relevant, 32 papers were retained for the final review. Eighteen of these presented estimates of the burden in terms of HR-QOL, and 14 in terms of the economic cost. Mean utility scores reported on preference-based measures of HR-QOL ranged from 0.6 to 0.75. Mean annual direct costs per patient ranged from US$2,214 to US$16,875, and mean annual indirect cost estimates from US$2,239 to US$35,540 (year 2010 values). Disease activity and damage, along with poor mental and physical health, were repeatedly reported to predict both reduced HR-QOL and increased costs.

CONCLUSIONS

The burden of SLE was found to be substantial, not only for patients but also for the health services that provide care for them. Treatments that are able to alleviate this burden are therefore likely to be highly valued by sufferers. After an extended period in which few therapeutic advances were made or treatments licensed, fundamental developments are finally being made. These new treatments will need to be evaluated for both clinical and cost effectiveness if their use is to be widely implemented.

摘要

背景

红斑狼疮患者的存活率提高,使得红斑狼疮给患者、医疗体系和社会带来的负担成为了关注的焦点。为了缓解这种负担,需要引入新的干预措施,而这些措施都需要进行经济评估。对红斑狼疮患者的人文和经济负担进行总结,可以为后续的研究提供一个平台。

目的

本研究旨在系统性地回顾红斑狼疮患者的人文和经济负担(基于健康相关生活质量和成本)的现有证据,并总结与这些负担相关的因素。

方法

1990 年至 2011 年 2 月间的相关文献,通过对 MEDLINE、EMBASE 和 Web of Science 的系统性检索获得。我们检索了在成年人群中评估红斑狼疮的人文(偏好量表或红斑狼疮特异性健康相关生活质量量表)或经济负担(成本)的英文文献。排除标准为:专门研究狼疮性肾炎的文献;未将红斑狼疮作为主要研究对象(例如红斑狼疮是共存疾病)的文献;重点关注诊断或检测的文献(包括遗传学和抗体);无法将红斑狼疮患者从混合患者组中分离出来的文献;儿科人群的文献;病例研究;摘要不可用;非英文文献。我们提取并以文字形式报告了关于生活质量或成本负担的估计值,并进行了列表和叙述。还将每年的成本数据转换为 2010 年的美元,使用消费者价格指数(CPI)和购买力平价(PPP)转换因子,以便在研究之间进行更好的比较。还研究了与生活质量或成本负担相关的独立因素。

结果

最初确定的 1969 项潜在相关研究中,有 32 篇论文最终被纳入综述。其中 18 篇报告了基于偏好量表的健康相关生活质量负担的估计值,14 篇报告了经济成本负担的估计值。偏好量表报告的平均效用评分范围为 0.6 至 0.75。每位患者的平均直接医疗成本从 2214 美元到 16875 美元不等,平均间接成本从 2239 美元到 35540 美元不等(2010 年的价值)。疾病活动和损伤以及心理健康和身体健康不佳,被反复报道与降低生活质量和增加成本有关。

结论

红斑狼疮的负担不仅对患者,而且对提供医疗服务的医疗体系来说都很沉重。因此,能够缓解这种负担的治疗方法可能会受到患者的高度重视。在经历了很长一段时间没有取得重大治疗进展或获得治疗许可之后,目前终于取得了根本性的发展。如果要广泛实施这些新的治疗方法,就需要对其临床和成本效益进行评估。

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