面肩肱型肌营养不良患者报告结局的系统评价  

Patient-reported Outcome in Facioscapulohumeral Muscular Dystrophy:A Systematic Review

作　　者：刘路路 王江淋 李顺平 LIU Lu-Lu;WANG Jiang-Lin;LI Shun-Ping(Centre for Health Management and Policy Research,School of Public Health,Cheeloo College of Medicine,Shandong University,Key Laboratory of health economics and Policy Research of National Health Commission(Shandong University),Center for Health PreferenceResearch,ShandongUniversity,Jinan250012,China)

机构地区：[1]山东大学公共卫生学院卫生管理与政策研究中心/国家卫生健康委员会卫生经济与政策研究重点实验室(山东大学)/山东大学健康偏好研究中心,济南250012

出　　处：《中国药物经济学》2022年第9期5-12,共8页China Journal of Pharmaceutical Economics

摘　　要：目的 系统评价面肩肱型肌营养不良(FSHD)患者报告自身健康状态的文献。方法 计算机检索PubMed、Web of Science、EMBASE、The Cochrane Library、EBSCO、Scopus和中国期刊全文数据库、万方数据知识服务平台中发表的有关FSHD患者报告结局(PRO)的研究。结果 共检索到2883篇相关文献,最终纳入38篇。共有51种PRO评估工具,其中评估疾病症状的量表46种,以患者报告功能障碍、疼痛、疲劳、焦虑抑郁较多;评估健康相关生命质量的量表5种,以SF-36量表为主。结论 目前缺乏测量FSHD人群的疾病特异性量表,建议推进基于中国FSHD患者人群特异性PRO量表的开发、验证及推广工作。Objective To systematically evaluate studies published patient-reported outcome(PRO)of facioscapulohumeral muscular dystrophy(FSHD). Methods A systematic search of PubMed, Web of Science, EMBASE, The Cochrane Library,EBSCO, Scopus and CNKI, Wanfang Data were conducted for studies published PRO of FSHD. Results 2 883 related literatures were retrieved and a total of 51 PRO assessment tools were included in 38 articles. There were 46 scales for assessing symptoms of disease. Functional disorder, pain, fatigue, anxiety and depression were more reported. There were 5 scales for assessing health-related quality of life and SF-36 questionnaire was frequently used. Conclusion There are still lack of disease-specific PRO instruments for measuring FSHD. It is suggested to promote the development, validation and promotion of diseases-specific PRO scales based on the Chinese FSHD patients.

关 键 词：面肩肱型肌营养不良症 患者报告结局 系统评价 

分 类 号：R283.1[医药卫生—中药学] R285.6[医药卫生—中医学]