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Measuring Burden of Illness in Phenylketonuria (PKU): Development of the PKU Symptom Severity and Impacts Scale as a Robust Patient-Reported Outcome

INTRODUCTION: Phenylketonuria (PKU) is a rare, metabolic genetic disorder that can cause various neuropsychological symptoms that often affect patients’ health-related quality of life, even for patients with good metabolic control. To date, no patient-reported outcomes (PRO) instrument combines the...

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Detalles Bibliográficos
Autores principales: Quinn, Jennifer, Georgiadis, Alexandros, Lewis, Hannah B., Jurecki, Elaina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8684342/
https://www.ncbi.nlm.nih.gov/pubmed/34921666
http://dx.doi.org/10.1007/s12325-021-01986-2