Household financial burden of phenylketonuria and its impact on treatment in China: a cross-sectional study.

ABSTRACT:

Background

Phenylketonuria (PKU) is a rare inborn disease, which, untreated, leading to severe neurobehavioral dysfunction. Considering its complexity, the management of PKU may bring a formidable economic burden to parents and caregivers. It is still unknown what the out-of-pocket expenses are for a patient with PKU in China. This paper explores the household financial burden of classical PKU and its impact on Chinese families in a quantitative manner for the first time.

Methods

A non-interventional and observational study was conducted at the China-Japan Friendship Hospital, one of the national centers for inherited metabolic disorders in China. The medical and non-medical household financial burdens were consolidated into a questionnaire to evaluate the out-of-pocket cost

SUBMITTER: Wang L 

PROVIDER: S-EPMC5393103 | biostudies-literature | 2017 May

REPOSITORIES: biostudies-literature