Development and content validation of a sunlight exposure diary in patients with erythropoietic protoporphyria

Development and content validation of a sunlight exposure diary in patients with erythropoietic protoporphyria

Abstract Background Erythropoietic protoporphyria is a rare, inherited disorder presenting in early childhood with severe, painful phototoxicity. EPP has significant impacts on health-related quality of life, though there is variable disease severity. Accurately capturing how much time individuals w...

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Bibliographic Details
Main Authors: Susan D. Mathias, Laurie Burke, Hilary H. Colwell, George Mensing, Will Savage, Hetanshi Naik
Format: Article
Language:English
Published: SpringerOpen 2023-11-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Erythropoietic protoporphyria
Patient reported outcomes
Quality of life
Sun exposure diary
Online Access:https://doi.org/10.1186/s41687-023-00655-y

Internet

https://doi.org/10.1186/s41687-023-00655-y

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