Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review

BACKGROUND: Health-related Quality of Life (HrQoL) is a multidimensional measure, which has gained clinical and social relevance. Implementation of a patient-centred approach to both clinical research and care settings, has increased the recognition of patient and/or observer reported outcome measur...

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Veröffentlicht in:	ORPHANET JOURNAL OF RARE DISEASES 2018-11, Vol.13 (1)
Hauptverfasser:	Pascoal, Carlota, Brasil, Sandra, Francisco, Rita, Marques-da-Silva, Dorinda, Rafalko, Agnes, Jaeken, Jaak, Videira, Paula A, Barros, Luisa, Ferreira, Vanessa dos Reis
Format:	Artikel
Sprache:	eng
Online-Zugang:	Volltext
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