Summary
You may be eligible for this study if you are aged 18 years or older, have a diagnosis of relapsed multiple myeloma, and have started or will be starting a lenalidomide, carfilzomib, or daratumumab based treatment regimen.
Eligible participants will be randomly allocated to one of two groups: to either receive standard of care treatment plus real-time feedback of PROMS, or to receive stndard of care treatment alone.
Participants in the intervention group will be asked to complete a multiple myeloma-specific quality of life questionnaire (myPOS) within the week before each clinical visit using an online PROM collection system. Participants receiving daratumumab or carfilzomib based regimens will also complete additional questions regarding treatment-specific side effects at this time. The questionnaires will take approximately 10 minutes to complete, and will be completed prior to a total of 13 visits over a period of 12 months. A summary of the completed questionnaires with results of concern will be provided to your treating clinician before clinical visits, so that the results may be considered in your care.
Participants in the standard of care alone group will not complete the MyPOS questionnaire prior to clinic visits. Participants in the standard of care alone group, receiving daratumumab or carfilzomib based regimens will also be asked to complete the additional questions regarding treatment-specific sde effects every 3 months.
All participants will be asked to complete a quality of life questionnaire and a treatment satisfaction questionnaire every three months.
After a period of 12 months, all participants will have data collected from their medical records on time to discontinuation of treatment, disease progression, and survival, and will complete questionnaires regarding quality of life, side effects, and treatment satisfaction.
It is hoped that this study may show that real-time feedback of patient-reported outcome measures (PROMs) to treating clinicians at clinic visits improves duration on treatment and survival when compared to patients on standard of care alone.