Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

Abstract Background Rare diseases may be life-threatening or chronically debilitating conditions. Patient care needs are often complex and challenging to coordinate and deliver effectively. Rare diseases and their clinical management may therefore substantially impact on patients’ health-related qua...

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Bibliographic Details
Main Authors: Olalekan Lee Aiyegbusi, Fatima Isa, Derek Kyte, Tanya Pankhurst, Larissa Kerecuk, James Ferguson, Graham Lipkin, Melanie Calvert
Format: Article
Language:English
Published: BMC 2020-06-01
Series:Health and Quality of Life Outcomes
Subjects:
Rare diseases
Rare disorders
Patient involvement
Qualitative study
Health-related quality of life
HRQOL
Online Access:http://link.springer.com/article/10.1186/s12955-020-01438-5

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http://link.springer.com/article/10.1186/s12955-020-01438-5

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