evidence and practice
How people with myeloma perceive patient-reported outcome measures
Jayne Galinsky Health services research manager, Myeloma UK, Edinburgh, Scotland
Sarah Richard Researcher, Myeloma UK, Edinburgh, Scotland
Aim There is a lack of literature on what patients with myeloma think about patient-reported outcome measures (PROMs). The aim of this study was to examine the views of patients and their family members about commonly used PROMs in myeloma to help guide future development and use.
Method Two groups of patients were asked to review a selection of validated PROMs used in care of people with myeloma according to their perceived relevance to their lives, ease of completion, language and comprehensiveness. The PROMs selected for review were the EQ5D-5L, HADS, FACT-G and the MyPOS.
Findings Participants believed that PROMs had a validating effect on their concerns. They preferred the language and content of the MyPOS and FACT-G to the EQ5D-5L and HADS, and considered that the former two had greater relevance to their illness experience.
Conclusion Patients with myeloma believe PROMs are important but underused in clinical practice.
Cancer Nursing Practice. doi: 10.7748/cnp.2019.e1574Peer review
This article has been subject to external double-blind peer review and has been checked for plagiarism using automated softwareCorrespondence
Galinsky J, Richard S (2019) How people with myeloma perceive patient reported outcome measures. Cancer Nursing Practice. doi: 10.7748/cnp.2019.e1574
Published online: 25 March 2019