What do Multiple Myeloma patients prefer?

2021-01-27

Right now, the PREFER project is recruiting patients with Multiple Myeloma to participate in an online survey. The survey will help us understand patient preferences in relation to the risks and benefits of myeloma treatments. The results may inform stakeholders on treatment outcomes, side-effects and symptoms that most significantly impact MM patients’ treatment attitudes and choices. It will also contribute to answering some of the PREFER project’s more methodological questions. In doing so, this study supports our goal of finding out when and how patient preferences should give input to decision making for the companies that develop medicines, and the authorities that approve them, and decide what becomes available to patients.

Multiple myeloma, also known as myeloma, is a type of bone marrow cancer. Myeloma damages the bones and affects the production of healthy blood cells. There are several treatments, with different effects, and the balance between the benefits and risks of these treatments for patients is not always straight-forward. Right now, a team of researchers at KU Leuven in Belgium are recruiting Myeloma patients in Belgium, Romania, Finland and Spain, to find out how they balance the benefits against the risks of different (hypothethical) Myeloma treatments. 

Myeloma patients are contributing to this research. The PREFER project is committed to communicating with patients in plain language. The research team is working closely with patients through Myeloma patients’ organizations (Myeloma Patients Europe, CMP Vlaanderen and Mymu), and have worked hard to ensure the survey is understandable and accessible to patients, regardless of their educational background.

The survey is available in Dutch, English, Finnish, French, German, Romanian and Spanish.

Rosanne Janssens is a PhD student at KU Leuven in Belgium and member of the PREFER project. She will write a thesis on the results of this survey and believes that working with patients in this kind of research is essential and rewarding. The team is very happy to see that the survey has received a lot of positive feedback from patients already, including patients who responded saying that it is the clearest survey they have completed, and that the questions provoked them to think about what is important.

Are you a Myeloma patient? You can find links to all versions of the survey here.

Interested in what this patient preference case study contributes to the PREFER project? You can find more information here.

By Josepine Fernow

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