Myeloma UK publishes report and recommendations on patient-reported outcome measures in myeloma

A new research report published today recommends that researchers, the NHS and the healthcare professional community work together to improve how patient reported outcome measures (PROMs) are used in myeloma research.

Myeloma UK news, Research news // 3rd August 2018

A new research report published today recommends that researchers, the NHS and the healthcare professional community work together to improve how patient reported outcome measures (PROMs) are used in myeloma research.

PROMs are standard questionnaires that are completed by patients. They are often used in clinical trials to help measure the impact of a new treatment on a patient’s quality of life. They may also be used in clinical practice to provide healthcare professionals with information about which issues are affecting their patients.

Although PROMS have been used previously for patient research, there remain questions about how consistently such tools should be used for myeloma research. There is also still some academic debate regarding the method’s effectiveness for measuring what really matters to myeloma patients. However, Myeloma UK consider PROMS to be a highly effective method to help understand the impact that myeloma has on individuals, so that their needs can be addressed and that the data gathered can drive improvement in outcomes for patients.

Part-funded and supported by Janssen Pharmaceuticals, Myeloma UK conducted an in-depth research project to examine the published literature and explore the perspectives of patients, clinicians, researchers, and pharmaceutical industry representatives on how to improve the use of PROMs in myeloma.

The research found strong support for the principle of collecting and using patient reported outcome data through PROMs. However, we found that in practice using, scoring, interpreting, and recording such data is complex and inconsistent.

In our interviews we learnt that PROMs are still only infrequently used in myeloma clinical practice, partly due to a lack of training and support for PROM use. Furthermore, both patients and stakeholders considered that many of the most commonly-used PROMs may not capture all the important issues for myeloma patients.

In our report we set out a series of recommendations for addressing these and other key issues arising from the research.

Health Services Research Manager for Myeloma UK, Dr Jayne Galinsky said: “In publishing our research reports today we hope to provide all those working with myeloma patients – in research and in the clinic – with up to date insight on the current PROMs landscape. We encourage all stakeholders to work with Myeloma UK on delivering these recommendations which we believe are necessary to deliver on the potential of PROMs to benefit myeloma patients.”

The full report and executive summary can be downloaded from the below links:

 

 

 

Summary report and recommendations

Full research report