摘要
目的 对已发表的白化病患者报告结局(PROs)研究进行综述,为临床研究和实践提供参考。方法 检索PubMed、EMBASE、The Cochrane Library、Web of Science、Scopus、EBSCO、万方数据知识服务平台、中国生物医学文献数据库和中国期刊全文数据库9个中英文数据库,检索时间为2022年11月。结果 共检索到2 259篇文献,最终纳入11篇,主要涉及白化病患者的社会支持、视觉损伤、皮肤损伤、心理压力和生活经历5个方面,研究间使用的工具有较大差异。结论 白化病对患者生命质量造成严重损伤,我国应加大对白化病患者PROs的研究。
Objective To provide a review of published studies on reported outcomes in patients(PROs)with albinism as a reference for clinical research and clinical practice.Methods Nine Chinese and English databases,PubMed,EMBASE,The Cochrane Library,Web of Science,Scopus,EBSCO,WANFANG DATA,CBM,and CNKI,were searched with a final search date of November 2022.Results A total of 2259 papers were retrieved and 11 were finally included,mainly related to 5 aspects of social support,visual impairment,skin damage,psychological stress and life experience of albinos,with significant differences in the instruments used between studies.Conclusion Albinism causes serious damage to the quality of life of patients,and research on PROs inalbinos should beincreased in China.
作者
张坤婷
李小利
李顺平
ZHANG Kun-Ting;LI Xiao-Li;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 Preference Research,Shandong University,Jinan 250012,China)
出处
《中国药物经济学》
2023年第5期18-22,共5页
China Journal of Pharmaceutical Economics
关键词
白化病
罕见病
患者报告结局
文献综述
Albinism
Rare disease
Patient reported outcomes
Systematic review
