Development and psychometric validation of measures to assess the impact of phenylketonuria and its dietary treatment on patients’ and parents’ quality of life: the phenylketonuria – quality of life (PKU-QOL) questionnaires

BACKGROUND: The aim of our study was to develop and validate the first set of PKU-specific Health-related Quality of Life (HRQoL) questionnaires that: 1) were developed for patients with PKU and their parents, 2) cover the physical, emotional, and social impacts of PKU and its treatment on patients’...

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Détails bibliographiques
Publié dans:Orphanet J Rare Dis
Auteurs principaux: Regnault, Antoine, Burlina, Alberto, Cunningham, Amy, Bettiol, Esther, Moreau-Stucker, Flavie, Benmedjahed, Khadra, Bosch, Annet M
Format: Artigo
Langue:Inglês
Publié: BioMed Central 2015
Sujets:
Research
Accès en ligne:https://ncbi.nlm.nih.gov/pmc/articles/PMC4449597/
https://ncbi.nlm.nih.gov/pubmed/25958326
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-015-0261-6
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