Research on Health Related Quality of Life and Disease Economic Burden of Chinese Phenylketonuria Patients
- VernacularTitle:我国苯丙酮尿症患者健康相关生命质量与疾病经济负担研究
- Author:
Hao DING
1
;
Jiayin ZHENG
;
Luning ZHANG
;
Minglin SUN
;
Tiemin ZHAI
;
Linkang LI
Author Information
1. 中国罕见病联盟 北京 100020
- Publication Type:Journal Article
- Keywords:
phenylketonuria;
quality of life;
disease burden
- From:
Chinese Health Economics
2025;44(11):86-90
- CountryChina
- Language:Chinese
-
Abstract:
Objective:To assess health-related quality of life and disease burden of Chinese Phenylketonuria(PKU)patients and inform optimized management and support strategies.Methods:A cross-sectional survey is conducted to explore questionnaires.The Delphi method was applied to form a standardized questionnaire.Results:A total of 263 valid questionnaires were collected.The average patient age was 7.6 years.Younger patients reported better quality of life.Mean total medical cost per patient was 238 461.9 yuan,exceeding the 2024 national per capita disposable income.Conclusion:PKU patients are facing significant challenges in both quality of life and economic burden.
