Validation of a novel patient reported tool to assess the impact of treatment in erythropoietic protoporphyria: the EPP-QoL

Validation of a novel patient reported tool to assess the impact of treatment in erythropoietic protoporphyria: the EPP-QoL

Abstract Background A novel treatment has been developed for erythropoietic protoporphyria (EPP) (a rare condition that leaves patients highly sensitive to light). To fully understand the burden of EPP and the benefit of treatment, a novel patient reported outcome (PRO) measure was developed called...

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Bibliographic Details
Main Authors: G. Biolcatti, S. Hanneken, E. I. Minder, N. J. Neumann, J. H. P. Wilson, P. J. Wolgen, D. J. Wright, A. J. Lloyd
Format: Article
Language:English
Published: SpringerOpen 2021-08-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Erythropoietic protoporphyria
EPP-QoL
Patient reported outcomes
Psychometric validation
Online Access:https://doi.org/10.1186/s41687-021-00345-7

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