The financial and time burden associated with phenylketonuria treatment in the United States.

ABSTRACT:

Background

Phenylketonuria (PKU) imposes a substantial burden on people living with the condition and their families. However, little is known about the time cost and financial burden of having PKU or caring for a child with the condition.

Methods and findings

Primary data were collected with a detailed cost and utilization survey. Primary outcomes included utilization and out-of-pocket costs of medical services, medical formula, and prescribed low-protein food consumption, as well as the time and perceived effort involved in following the PKU diet. Respondents were people living with PKU or parents of children with PKU identified through a state newborn screening program database. Secondary administrative claims data were also used to calculate mean total, insurer, and out-

SUBMITTER: Rose AM 

PROVIDER: S-EPMC6807265 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature