In 2016, we partnered with European drug approval body, the European Medicines Agency (EMA) and the University Medical Centre Groningen, to undertake a survey with the aim of better understanding the perspectives of myeloma patients on the benefits and risks of treatment.
It was the first patient preference study in the UK to be undertaken on such a scale (over 500 patients took part) and provides us with insight into how patients rationalise treatments. Last weekend, results of the survey were published in the The Oncologist Journal.
Our aim is for these results to provide valuable feedback to drug regulators and approval bodies (e.g. the Scottish Medicines Consortium, National Institute for Health and Care Excellence or the All Wales Medicines Strategy Group) when it comes to decisions about new treatments. This new research will also play an important role in helping us to campaign for access to the sorts of new treatments that are valued by patients.
Dr Simon Ridley, Director of Research at Myeloma UK commented, “This report gives valuable insight into the types of factors that are important to myeloma patients when it comes to thinking about treatment for their condition. Along with other forms of evidence that we gather, it will help us to continue to provide a patient voice in decisions about new myeloma treatments. We are very grateful to all the patients who took part in this study.”
When the researchers looked at how participants responded, and the information they gave us about themselves, a number of patterns emerged. For example, we found that participants who were younger, currently working, looking after dependents and/or who had previously experienced severe side-effects were more likely to be concerned about the risk of experiencing severe side-effects than they were about long-lasting milder or moderate side-effects.
By contrast however, there were no patterns to be found among those who felt that achieving lasting remission was their highest priority. This suggests that the weight given to remission by patients in our study is not linked to age, family situation or past experience of treatments.
A majority of participants, and in particular those who were more recently diagnosed with myeloma, were most likely to say that achieving remission was more important than avoiding side-effects. However, one in every five participants felt that avoiding severe side-effects was the most important consideration. A very small minority, one in twenty participants, said that avoiding the risk of milder or moderate side-effects was the most important factor to them.
Myeloma UK does not receive any government funding, meaning we that we cannot undertake research like this without your support. Find out how you can get behind our work by visiting our Get Involved page, or following us on Twitter and Facebook.