Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries.

ABSTRACT:

Background

The strict and demanding dietary treatment and mild cognitive abnormalities seen in PKU treated from a young age can be expected to affect the health-related quality of life (HRQoL) of patients and their families. Our aim was to describe the HRQoL of patients with PKU from a large international study, using generic HRQoL measures and an innovative PKU-specific HRQoL questionnaire (PKU-QOL). Analyses were exploratory, performed post-hoc on data collected primarily to validate the PKU-QOL.

Methods

A multicentre, prospective, non-interventional, observational study conducted in France, Germany, Italy, The Netherlands, Spain, Turkey and the UK. Patients diagnosed with PKU aged ≥9 years old and treated with a Phe-restricted diet and/or Phe-free amino acid protein suppl

SUBMITTER: Bosch AM 

PROVIDER: S-EPMC4542123 | biostudies-literature | 2015 Jun

REPOSITORIES: biostudies-literature