Experience of a stem cell transplant in multiple myeloma: The patient and care partner perspective

e18790 Background: Understanding patient experiences of their multiple myeloma (MM) disease journey, particularly related to the burden of autologous stem cell transplant (ASCT) and treatment recovery process, helps characterize unmet needs and quality of life of patients and their caregivers. A qualitative study of the experience of patients with MM who received ASCT and perspectives of caregivers was conducted. Methods: Recruited participants with MM were ≥18 years of age and received ASCT within the past 5 years or caregivers of patients who met these criteria. Two virtual focus group interviews were conducted, in which patients and caregivers were asked separately to narrate their disease journey starting with first symptoms and diagnosis, then focusing on the ASCT and recovery period. Results: A total of 16 participants, including 12 MM patients and 4 caregivers, were included. Nine participants (56.25%) were less than 60 years old, and eleven (68.75%) participants were female. Study participants were diverse in race/ethnicity; one-third of participants were Black and one-third comprised other minorities (Hispanic, Native Hawaiian, Asian, and Multiracial). Pain, weakness, and fractured bones (femur, hip, or spinal fractures) were common first symptoms. Other common patient-reported symptoms included high blood pressure, blurred vision, more frequent illnesses, unsteady gait, and anemia. The patients in the study were first diagnosed with MM in a variety of ways, mostly by a primary care physician and some in urgent care settings. The diagnosis process could take up to six months for some patients and commonly a community oncologist referred patients to a bone marrow transplant specialist, who was the primary driver in making ASCT decisions. Eight patients received their ASCT in an inpatient setting and four patients in an outpatient setting, with three eventually being hospitalized due to complications. Only one patient stayed in an outpatient setting the entire time. Initial recovery time after ASCT ranged from 2 weeks to 4 months; complete recovery took from 30 days to “never.” The most patient-reported difficulties during recovery time included nausea, loss of appetite, weakness, fatigue, and pain. Caregivers played an important role in the recovery process and often with negative financial impact related to missing work and travel expenses. Conclusions: Patients with MM who received ASCT and their caregivers perceived various unmet needs throughout their transplant journey. Post–stem cell transplant symptoms had a substantial impact on patients’ quality of life, especially with lengthy and challenging recovery. Innovative therapies are needed for newly diagnosed MM to reduce the burden of disease and enhance the quality of life for both patients and their caregivers.