Investigation on the Survival Status and Economic Burden of Patients with Cryopyrin Associated Periodic Syndrome in China
- VernacularTitle: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
- Author:
Lina GUO
1
;
Kexin LI
;
Jiayin ZHENG
;
Caifeng LI
;
Min SHEN
;
Shipeng LI
;
Ningying MAO
;
Xinling WANG
;
Linkang LI
Author Information
1. 中国药科大学国际医药商学院 江苏 南京 211198
- Publication Type:Journal Article
- Keywords:
cryopyrin associated periodic syndrome;
the survival status;
disease economic burden
- From:
Chinese Health Economics
2025;44(1):66-71,78
- CountryChina
- Language:Chinese
-
Abstract:
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.
