中国冷吡啉相关周期性综合征患者生存现状及疾病经济负担研究  

Investigation on the Survival Status and Economic Burden of Patients with Cryopyrin Associated Periodic Syndrome in China

作　　者：郭丽娜 李柯欣 郑佳音 李彩凤[4] 沈敏 李士朋[4] 茅宁莹[1] 王新玲 李林康 Guo Lina;Li Kexin;Zheng Jiayin(School of International Pharmaceutical Business,China Pharmacentical University,Nanjing.Jiangsu,211198,China;不详)

机构地区：[1]中国药科大学国际医药商学院,江苏南京211198 [2]中国罕见病联盟,北京100020 [3]清华大学万科公共卫生与健康学院,北京100080 [4]首都医科大学附属北京儿童医院风湿科,北京100045 [5]中国医学科学院北京协和医院罕见病医学科,北京100730

出　　处：《中国卫生经济》2025年第1期66-71,78,共7页Chinese Health Economics

基　　金：江苏高校哲学社会科学研究重大项目(2024SJZD128);江苏省社科基金一般项目(22JZB002);江苏省高校哲学社会科学研究项目(2021SJA0075)。

摘　　要：目的:研究中国冷吡啉相关周期性综合征患者生存现状与疾病经济负担。方法:2023年8月—2024年2月,对自愿参加的患者进行问卷调查,调查内容包括患者的社会人口学特征、诊疗现状、疾病经济负担及生命质量。结果:共收集有效问卷35份,患者平均起病年龄为5.67岁,平均确诊时长为7.63年,过去12个月人均总医疗成本为82 532.79元,远高于2023年全国居民人均可支配收入。结论:冷吡啉相关周期性综合征发病早、确诊时间长且多为对症治疗,患者及其家庭疾病经济负担沉重。Objective:To explore the survival status and economic burden of disease for patients with Cryopyrin Associated Periodic Syndrome(CAPS) in China.Methods:From August 2023 to February 2024,a questionnaire survey was conducted on patients who volunteered to participate. The survey included patients' sociodemographic characteristics, current medical treatment status,disease economic burden and life quality.Results:A total of 35 valid questionnaires were collected. The average age of onset for the patients was 5.67 years,and the average duration from onset to confirmed diagnosis was 7.63 years. The average total medical cost per person in the past 12 months was 82 532.79 yuan, which is significantly higher than the national per capita disposable income of China in 2023.Conclusion:CAPS has an early onset and a long duration until diagnosis, with treatment primarily symptomatic,resulting in a heavy disease burden for patients and their families.

关 键 词：冷吡啉相关周期性综合征 生存现状 疾病经济负担 

分 类 号：R1-9[医药卫生—公共卫生与预防医学] F195.4[经济管理—世界经济]