Today, Myeloma Patients Europe (MPE) and KU Leuven present findings from a study at the European Haematology Association 2021 congress (EHA 2021), which aimed to understand which characteristics of treatment myeloma patients find most important. This study illustrates that patients focus not only on treatment efficacy, but also value a reduction of myeloma-related symptoms and side effects. The study is part of a wider project, called PREFER, examining how to represent patients in drug development. PREFER is a public-private collaborative research project under the Innovative Medicines Initiative (IMI).
Patient preferences have become an important focus for inclusion in the drug development process in myeloma. Preference studies tell us not just what is important to patients, but what aspects of their treatment and care, as well as what benefits, are most important to them; and what trade-offs patients are prepared to make when thinking about the advantages and disadvantages of treatment. Over the last decade, there has been a rapid development of new medicines for myeloma, all with varying safety and efficacy profiles. Therefore, the need for a clear and standardised methodology of collection of patient preference data is important.
Patient preference studies use qualitative methods to find out more about the questions that could be included in wider preference surveys. Conducting this qualitative phase means that questions put to patients in the preference survey are sensitive and relevant. Findings presented at EHA represent the qualitative phase of the myeloma PREFER study, a research co-authorised by MPE.
Twenty four patients took part in the qualitative study from across Europe. Findings suggested that some of the most important treatment characteristics to patients are, life expectancy, life-threatening side-effects, treatment response (i.e., a reduction of cancer signs), nerve or bone problems, thinking problems, and reduced energy.