The survival for myeloma patients has improved substantially over the last two decades. Still, patients face a range of treatment and disease-related events and symptoms, which can negatively influence their quality of life (QoL). To measure QoL and the impact different treatments can have on patients’ lives, clinical trials increasingly incorporate data reported by patients. Patient-reported QoL and HRQoL data generated during a clinical trial or treatment are known as patient reported outcomes (PRO). A PRO is a report that comes directly from the patient about the status of their health condition without any interpretation by clinicians or anyone else.
Enhanced QoL has been shown to promote prognosis, making QoL measurement a meaningful factor of myeloma patient treatment. Despite the need for QoL data collection, a Myeloma Patients Europe (MPE) research established that data collection on QoL and HRQoL is lacking in myeloma clinical trials. To understand this issue further, MPE and Concilium Scientific have developed the report “Assessment of quality of life data in myeloma clinical trials between 2011 and 2021“. This research analyse and present the findings on QoL and PRO measures (PROMs) used and reported in clinical trials and published literature in myeloma between 2011 and 2021. This report provides recommendations for the myeloma patient community and other stakeholders (clinicians, pharmaceutical firms, research institutions, charities and reimbursement bodies) to enhance the collection, reporting, justification and utility of QoL data in myeloma research and clinical practice.