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Caregiver burden, and parents' perception of disease severity determine health-related quality of life in paediatric patients with intoxication-type inborn errors of metabolism

BACKGROUND: Living with a non-acute (phenylketonuria) or acute (e.g. urea cycle disorders, organic acidurias) intoxication-type inborn error of metabolism (IT-IEM) can have a substantial impact on health-related quality of life (HrQoL) of paediatric patients and their families. Parents take primary...

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Detalles Bibliográficos
Autores principales:	Bösch, Florin, Landolt, Markus A., Baumgartner, Matthias R., Fernandez, Susana, Forny, Patrick, Gautschi, Matthias, Grünert, Sarah C., Häberle, Johannes, Horvath, Carolina, Karall, Daniela, Lampis, Danila, Rohrbach, Marianne, Scholl-Bürgi, Sabine, Szinnai, Gabor, Huemer, Martina
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	Elsevier 2022
Materias:	Research Paper
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9233158/ https://www.ncbi.nlm.nih.gov/pubmed/35762020 http://dx.doi.org/10.1016/j.ymgmr.2022.100876

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