Gepubliceerd in:

01-02-2013

Cost and time burden of living with phenylketonuria in the Netherlands

Auteurs: Serwet Demirdas, T. Alexander Smith, Indra Eijgelshoven, Annet M. Bosch

Gepubliceerd in: Tijdschrift voor Kindergeneeskunde | bijlage 1/2013

Extract

Phenylketonuria (PKU) is a rare inborn error of metabolism caused by phenylalanine hydroxylase enzyme deficiency. Treatment constitutes a protein restricted diet with aminoacid supplementation and use of low protein food. Management of PKU is timeconsuming and presents an economic burden. This cross-sectional study aims to evaluate out-of-pocket-costs (OOPC) and time burden of living with PKU in the Netherlands. …

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