Investigation on the Survival Status and Economic Burden of Patients with Cryopyrin Associated Periodic Syndrome in China
Guo Lina
Li Kexin
Zheng Jiayin
Li Caifeng
Shen Min
Li Shipeng
Mao Ningying
Wang Xinling
Li Linkang
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.
Keywords：cryopyrin associated periodic syndromethe survival statusdisease economic burden
Publication Date：2025-01-04
Online Publishing Date：2025-08-15(First online date of this platform, not the publication date of the document)
Pages：7( 66-71,78 )