Patient reported outcome measures in rare diseases: a narrative review

Patient reported outcome measures in rare diseases: a narrative review

Abstract Background Rare diseases can lead to a significant reduction in quality of life for patients and their families. Ensuring the patients voice is central to clinical decision making is key to delivering, evaluating and understanding the efficacy of therapeutic interventions. Patient reported...

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Bibliographic Details
Main Authors: Anita Slade, Fatima Isa, Derek Kyte, Tanya Pankhurst, Larissa Kerecuk, James Ferguson, Graham Lipkin, Melanie Calvert
Format: Article
Language:English
Published: BMC 2018-04-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare diseases
Rare disorders
Patient reported outcome measures
Outcome assessments
Quality of life
Online Access:http://link.springer.com/article/10.1186/s13023-018-0810-x

Internet

http://link.springer.com/article/10.1186/s13023-018-0810-x

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