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

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

Abstract 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 outcom...

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Bibliographic Details
Main Authors: Carlota Pascoal, Sandra Brasil, Rita Francisco, Dorinda Marques-da-Silva, Agnes Rafalko, Jaak Jaeken, Paula A. Videira, Luísa Barros, Vanessa dos Reis Ferreira
Format: Article
Language:English
Published: BMC 2018-11-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Patient reported outcome measures (PROMs)
Observer reported outcome measures (ObsROMs)
Quality of life (QoL)
Health-related quality of life (HrQoL)
Inherited metabolic disease(s) (IMD(s))
Online Access:http://link.springer.com/article/10.1186/s13023-018-0953-9

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http://link.springer.com/article/10.1186/s13023-018-0953-9

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