1st September 2020 // Daniel Cairns
Back in February, we conducted the Myeloma UK Patient Treatment Survey on lenalidomide maintenance for the treatment of newly diagnosed myeloma patients following high-dose therapy and stem cell transplantation (HDT-SCT). This survey was used to gather insight and experience from patients to help inform our evidence submissions to the drug approval bodies as part of their assessment for use of the treatment on the NHS.
Over 460 of you shared your insight and experience. You told us that 98% of patients felt that lenalidomide maintenance treatment should be approved for use on the NHS.
All respondents to the survey were asked to rank what is most important to them when being treated for myeloma. The data showed that improved overall survival (living for longer) was the most important factor for patients when being treated. This was closely followed by increased remission and improved quality of life. These findings are in line with similar research we have conducted.
Analysis of published clinical trial data and our survey results enables us to examine the extent to which lenalidomide maintenance delivers these key benefits.
Results from Myeloma XI showed that lenalidomide could deliver these benefits. The treatment improved the overall survival (length of time patients live for following diagnosis) and progression-free survival (the length of time following treatment before the myeloma starts to come back), compared to observation (no treatment).
The survey also told us that 90% of patients who received lenalidomide maintenance had a very positive or positive experience on the treatment. Further to this, 88% of those patients felt that it was effective in controlling their myeloma. Finally, most patients said that they were unaffected or only experienced mild side effects when receiving lenalidomide maintenance.
This shows us that myeloma patients overwhelmingly have a good experience when on this treatment. This suggests lenalidomide maintenance is a well-tolerated, effective treatment for patients who can have HDT-SCT.
Much of the data, experience, and insight provided by patients has informed our evidence submissions to the SMC and NICE. Many of the questions in the survey asked for free text answers allowing patients to provide responses in their own words. Some of those insights were directly quoted by us in our evidence ensuring that the patient voice was at the heart of our submissions.
If you would like to see a full analysis of the survey data or any more information regarding the appraisal process or lenalidomide maintenance then please do get in touch via email@example.com.