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在华语人群中,类风湿关节炎患者报告结局的生活质量是如何被研究的。

How Quality of Life as Patient-Reported Outcome Has Been Studied for Rheumatoid Arthritis in Chinese-Speaking Population.

作者信息

Hu Hao, Luan Luan, Li Shu-Chuen

机构信息

School of Biomedical Sciences and Pharmacy, University of Newcastle, Callaghan, NSW, Australia.

School of Biomedical Sciences and Pharmacy, University of Newcastle, Callaghan, NSW, Australia.

出版信息

Value Health Reg Issues. 2015 May;6:98-102. doi: 10.1016/j.vhri.2015.03.001. Epub 2015 May 16.

Abstract

OBJECTIVE

To review the use of health-related quality-of-life (HRQOL) instruments as patient-reported outcome in patients with rheumatoid arthritis (RA) in studies that have been published in Chinese-speaking populations.

METHODS

Overlapping searching strategy was used using four publication databases: PubMed and EMBASE for English publications and Wanfang and CNKI for Chinese publications. Entries published between January 1, 1990, and July 31, 2014, were retrieved and then reviewed independently by two researchers. The identified studies were summarized according to information source, publishing year, study location, and study type. The validation studies were examined closely in terms of their sample sizes and psychometric properties.

RESULTS

There were 99 studies from the databases selected for review. Among the studies reviewed, most studies were conducted in Mainland China. There was a clear overall increasing trend in the number of studies in recent years. Generic instruments were more frequently used by researchers outside China. Another observation was that most instruments were used without previous validation either in any Chinese-speaking population with RA or in the specific country that it was used.

CONCLUSIONS

The importance of patient-reported quality of life as an outcome indicator in patients with RA is more and more realized in Chinese-speaking regions during the past two decades. To facilitate the use of HRQOL for better management of patients, and improve the quality of research, there is a strong need of validating the HRQOL instruments in more locations with a larger population, more comprehensive validity, and potential cross-cultural validation in future.

摘要

目的

回顾在发表于华语人群的研究中,健康相关生活质量(HRQOL)工具作为类风湿关节炎(RA)患者自我报告结局的应用情况。

方法

采用重叠检索策略,使用四个出版物数据库:用于英文出版物的PubMed和EMBASE,以及用于中文出版物的万方和知网。检索1990年1月1日至2014年7月31日期间发表的文献,然后由两名研究人员独立进行评审。根据信息来源、发表年份、研究地点和研究类型对纳入的研究进行总结。对验证研究的样本量和心理测量学特性进行仔细审查。

结果

从数据库中筛选出99项研究进行综述。在所审查的研究中,大多数研究在中国内地进行。近年来研究数量总体呈明显上升趋势。国外研究人员更频繁地使用通用工具。另一个观察结果是,大多数工具在任何华语RA人群或其使用的特定国家中都未经过先前的验证。

结论

在过去二十年中,华语地区越来越意识到患者报告的生活质量作为RA患者结局指标的重要性。为便于使用HRQOL更好地管理患者并提高研究质量,未来迫切需要在更多地区、更大人群中对HRQOL工具进行验证,使其具有更全面的有效性和潜在的跨文化验证。

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