Research on Health Related Quality of Life and Disease Economic Burden of Chinese Phenylketonuria Patients
Ding Hao
Zheng Jiayin
Zhang Luning
Sun Minglin
Zhai Tiemin
Li Linkang
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.
Keywords：phenylketonuriaquality of lifedisease burden
Publication Date：2025-11-05
Online Publishing Date：2025-12-09(First online date of this platform, not the publication date of the document)
Pages：5( 86-90 )