PB1955: THE AGENDA FOR FUTURE MULTIPLE MYELOMA RESEARCH ACCORDING TO PATIENTS, CAREGIVERS, AND CLINICIANS

Abstract

Background: Multiple myeloma, a hematological malignancy characterized by the abnormal accumulation of plasma cells in the bone marrow, is increasing in incidence worldwide. Yet despite its status as the second most common hematological malignancy, much remains unknown about this incurable disease. The insufficiency of scientific knowledge related to the diagnosis, treatment, and management of multiple myeloma has real-world implications for patients and those who care for them. These individuals often have unanswered questions about living with or treating multiple myeloma. By addressing stakeholder questions, researchers can simultaneously advance the uptake of their research into practice and improve the quality of life of those with the disease. Aims: The purpose of this study was to empower patients, caregivers, and clinicians to set the agenda for the future of multiple myeloma research, thereby leading to research that is meaningful to those impacted by the disease and the improved translation of evidence into practice. Methods: We followed the rigorous and transparent methodology of the James Lind Alliance (JLA) to set the priorities for future research. The iterative priority-setting process began with a national survey to elicit questions from the multiple myeloma community (N = 594). The resulting questions were formed into summary questions and subsequently compared to systematic reviews and clinical practice guidelines to ensure that they were unanswered by prior research. The remaining unanswered questions were included in an interim prioritization survey, wherein participants (N = 651) selected and ranked their top questions. We used the results of this survey to inform the selection of a shortlist of questions for inclusion at the final consensus-building workshop. At the event, JLA facilitators used nominal group techniques to help the participants (N = 23) rank the questions and produce a Top 10 list of priorities. Results: Through this process, we distilled 3,042 questions from the myeloma community into 66 summary questions. We compared these questions to 608 systematic reviews and 321 clinical practice guidelines and determined that seven questions were answered. After consultation with our steering group of patients, caregivers, and clinicians, we included 45 questions in the interim prioritization survey. Quantitative analysis of survey responses identified 18 questions for ranking at the final workshop. The Top 10 list is predominantly about improving pharmacological treatments for multiple myeloma. Beyond this threshold, there were also important questions about wide-ranging topics, including physical activity, genetic testing, cognitive and immune functioning, minimal residual disease, and familial screening (see Table). Image:Summary/Conclusion: By moving beyond the Top 10 research priorities, we can appreciate the breadth of questions posed by the multiple myeloma community. These questions demonstrate that research is needed in diverse areas related to multiple myeloma to inform a holistic care approach and contribute to improved quality of life for patients. Therefore, we call upon research funders, researchers, and service providers across disciplines to recognize the perspectives and experiences of multiple myeloma patients and caregivers and invest in answering these questions.