Quality of life in children with erythropoietic protoporphyria: a case–control study

Erythropoietic protoporphyria (EPP) is an inherited metabolic disease that causes painful phototoxic reactions, starting in childhood. Studies have shown a reduced quality of life (QoL) in adults with EPP, however, data on children with the disease are lacking. Since treatment for EPP is currently n...

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Bibliographic Details
Published in:Journal of dermatology 2024-08, Vol.51 (8), p.1068-1078
Main Authors: Kluijver, Louisa G., Wensink, Debby, Wagenmakers, Margreet A. E. M., Huidekoper, Hidde H., Witters, Peter, Rymen, Daisy, Langendonk, Janneke G.
Format: Article
Language:English
Subjects:
Adolescent
Adult
Belgium
Case-Control Studies
Child
Child, Preschool
Children
Erythropoietic protoporphyria
Female
Humans
Male
Metabolic disorders
Netherlands
Original
Pediatrics
photosensitivity disorder
Prospective Studies
Protoporphyria, Erythropoietic - diagnosis
Protoporphyria, Erythropoietic - psychology
Protoporphyria, Erythropoietic - therapy
Quality of Life
social participation
Statistical analysis
Surveys and Questionnaires
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