Survivorship Burden and Patient Preferences Affecting Treatment Choices Among Multiple Myeloma (MM) Patients: Real-World Learnings from a Large, Prospective Study
Authors: Mondy Jayla , Das Saurav , Ailawadhi Dhaani , Adu Yaw , Ailawadhi Sikander 
Published: December 2024

Introduction: Therapeutic advancements for MM have led to improved patient survival, but notable differences in management exist. Novel treatment options are resource-intensive and require adequate patient awareness as well as consideration of patient preferences such that informed decision making is practiced. Despite this, detailed understanding of factors that impact patient decisions regarding healthcare choices, and potentially contribute to variability in healthcare utilization, are under-studied. Additionally, with improved survivorship, the medical, psychosocial, and financial burden of MM management needs to be better understood.
Methods: An anonymous, online, 45-question English survey exploring demographics, social determinants of health, selected clinical characteristics, treatment preferences, and survivorship burden was distributed to MM patients within Mayo Clinic and to all International Myeloma Foundation (IMF) support groups. Descriptive statistics were utilized to document participant socio-demographic characteristics, selected treatment history, factors affecting their preferences, and MM survivorship burden.
Results: A total of 2239 participants responded to the survey with 54% males, median age 68 years (range 21-95) and median age at MM diagnosis of 67 years. Non-Hispanic Whites (NHW) were the largest (89%) racial-ethnic group. Most participants (71%) had a college degree and 67% had Medicare or Medicaid as primary insurance. MM was diagnosed within 5 years in 58% and 73% were currently on MM treatment at the time of responding to the survey. Majority (76%) had never been on a clinical trial, 59% had received stem cell transplant, 8% had undergone CAR-T therapy and 8% had received Bispecific antibodies as part of their MM management. Majority (64%) preferred oral drugs while 19% preferred injections and 14% infusion therapy.17% had ≥4 healthcare visits per month for MM treatment, 91% used their personal vehicle as the mode of transport for these appointments and the median time to travel to the treatment facility was 30-minutes.Survey participants reported that &gt;10 days of work were missed per year due to MM management among 15% of the patients and 9% of the caregivers, while 15% reported suffering job loss related to MM management. Top factors for treatment decisions were physician recommendations (92%), effectiveness of treatment option (88%), understanding of the treatment(74%), side effects (57%), and family/caregiver input (38%). Psychological challenges and financial strain were reported by 38% and 18% of the respondents, respectively. Increase in healthcare needs since MM diagnosis were reported by 48% and majority reported ongoing symptom burden including fatigue (78%), pain (53%) and neuropathy (60%). Furthermore, of the participants with these symptoms, 67% reported that their fatigue was not relieved by rest, 73% reported their pain to be moderate to severe, and 29% reported their neuropathy to be moderate to severe. Only 42% reported being fully active with the rest reporting varying degrees of functional inabilities. Nearly half (47%) of the participants reported lack of interest or enjoyment in activities they used to like prior to MM diagnosis, however majority (74%) still reported “good” or “excellent” quality of life. A small number of participants reported lack of support from family and friends (4%), lack of support from their healthcare team (3%), difficulty accessing healthcare due to financial hardship (7%) or difficulty accessing healthcare due to job commitments (3%).
Conclusions: Decision-making for MM treatment is complex and there are several factors that affect patients behavior. Improved survival in MM is associated with significant survivorship and caregiver burden which can also affect the patient's treatment choices for subsequent therapy. These factors must be addressed systematically to achieve equitable healthcare utilization, shared decision making, and optimal clinical, psychosocial and financial wellbeing of patients with MM.