This month Myeloma UK published a new research report recommending that researchers, the NHS and healthcare professionals work together to improve the way that patient reported outcome measures (PROMs) are utilised in myeloma research.
PROMs are questionnaires that are completed by patients and are often used either in a clinical trial setting to measure the impact of a new treatment on a patient’s quality of life or by healthcare professionals to provide information about issues affecting their patients.
Myeloma UK considers PROMs to be a highly effective method to understand the impact that myeloma has on a patient and can be used as a tool to collect important data that can improve outcomes for patients.
The study, part funded and supported by Janssen-Cilag UK, found strong support for collecting and using patient reported outcome data using PROMs, but that in practice using, analysing and recording such data is complex and inconsistent.
It highlights the infrequent use of PROMs in myeloma clinical practice and that the most commonly-used PROMs may not be able to capture the important issues for myeloma patients. To address these the report outlines a list of recommendations to provide all those working with myeloma patients with an insight into the current PROMs landscape. It encourages all stakeholders to work with Myeloma UK on successful delivery of these recommendations, which will enable PROMs to deliver to their potential and benefit myeloma patients.
The full report can be downloaded here.