The personal burden for caregivers of children with phenylketonuria: A cross-sectional study investigating time burden and costs in the UK

Management of phenylketonuria (PKU) is mainly achieved through strict dietary control that aims to limit the intake of phenylalanine (Phe). Adherence to this diet is burdensome due to the need for specially prepared low-Phe meals and regular monitoring of Phe concentrations. A UK cross-sectional stu...

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Bibliographic Details
Published in:Molecular genetics and metabolism reports 2016-12, Vol.9, p.1-5
Main Authors: MacDonald, Anita, Smith, T. Alexander, de Silva, Shamika, Alam, Veronica, van Loon, Jeanni M.T.
Format: Article
Language:English
Subjects:
Burden
Caregiver
Diet
Pediatric
Phenylalanine
Phenylketonuria
Research Paper
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Summary:Management of phenylketonuria (PKU) is mainly achieved through strict dietary control that aims to limit the intake of phenylalanine (Phe). Adherence to this diet is burdensome due to the need for specially prepared low-Phe meals and regular monitoring of Phe concentrations. A UK cross-sectional study was conducted to identify the personal time and monetary burden associated with aspects of the PKU lifestyle for caregivers of children (aged 19h per week. OOPCs were incurred via attendance at PKU events, PKU-related equipment, and extra holiday expenditure. 21% of caregivers reduced their working hours (median 18.5h/week) to care for their child, with a further 24% leaving their paid jobs completely. Dietary management of PKU is associated with a considerable time burden for caregivers of pediatric patients with PKU. A personal financial burden also arises from OOPCs and lost earnings.
ISSN:2214-4269
2214-4269
DOI:10.1016/j.ymgmr.2016.08.008