OBJECTIVES: As the indirect humanistic and economic burden of relapsed/refractory multiple myeloma (RRMM) is poorly described, this investigation sought to assess indirect burden and improve the understanding of patient and caregiver demographics and their MM-related experience.

METHODS: This cross-sectional, non-interventional, non-randomised, web-based survey was conducted across France, Germany, Italy, Spain, UK, USA and Canada from 2019–2021, in patients with RRMM who had ≥2 prior lines of treatment (and their caregivers).

RESULTS: This study included 157 patients (median 65.0 y; 53% male) and 148 caregivers (median 61.0 y; 74% female; 63.5% spousal relationship); 93.9% of caregivers provided support for >1 year; ≥77.7% provided companionship/transportation/homemaking, with 51.3% dedicating 21+ hours/week. Outpatient care was received by 94.9% of patients, as outpatient hospital visits (51.6%), office visits (26.8%), and infusion centre visits (16.6%); 77% of caregivers accompanied patients to their most recent treatment. Patients reported some difficulty scheduling appointments (24.8%) and travelling to MM treatment (50.3%). Mean time spent travelling one-way to and at the hospital/clinic by patients was 35.3 minutes (range: 5.0–150.0) and 86.2 minutes (range: 0.0–615.0), respectively. A moderate or greater impact on lifestyle and usual activity was reported by 62.4% of patients and 38.5% of caregivers. Moderate or greater impact on work-life/career opportunities was reported in 50.9% of patients and 25.0% of caregivers. Sixty-one caregivers were currently employed. A change in employment status in the past year was reported by 19 caregivers (12.8%), MM-related in 12 (63.2%). Employed patients (n=21) reported decreased hours (39.5%), change in duties (33.1%), and physical limitations (55.4%).

CONCLUSIONS: These findings begin to describe the humanistic and economic burden affecting patients with RRMM and illustrate that these burdens extend beyond patients to their caregivers. These results help to understand the magnitude of caregiver support and highlight the existing unmet need in the overall population.