Burden of disease management among patients with multiple myeloma and their care partners

Recent advances in the treatment of multiple myeloma have substantially improved outcomes, alongside a rapid expansion in the number and type of therapeutic options available.^1,2 As patients live longer with multiple myeloma and may receive multiple sequential lines of therapy, managing the disease can extend over many years. There is an increasing need to understand patients’ priorities and experiences alongside clinical outcomes.³ 

Treatment burden encompasses all aspects of care required by the individual patient, including visits to healthcare providers, laboratory and diagnostic testing, prescription management, and lifestyle changes.⁴ A greater treatment burden has been associated with poorer treatment adherence and lower patient satisfaction, potentially affecting both the intended treatment plan and individual patient wellbeing.^4,5 Importantly, the burden of managing multiple myeloma extends beyond treatment-related demands, affecting patients’ everyday lives and placing additional demands on care partners, who may provide practical and emotional support with limited preparation or consistent support themselves.^6,7 Care partners may experience profound effects on their quality of life (QoL) and psychological wellbeing, alongside significant time commitments and financial costs.^6,7 

The multidimensional burden of disease management in multiple myeloma 

The burden of disease management in multiple myeloma is multidimensional, encompassing physical, psychological, social, and financial factors that may interact throughout the disease course, affecting patients’ wellbeing and daily lives.^6,8 Evidence from qualitative, patient-reported, and longitudinal studies highlights diverse ways in which multiple myeloma and its management can impact patients and their care partners. 

Physical burden  

Adverse events (AEs) are an important component of the physical burden of disease management. In a survey of 1,301 patients with relapsed/refractory multiple myeloma (RRMM) and 983 oncologists across seven countries, 46% of patients experienced “worse” or “slightly worse” than expected outcomes when managing treatment side effects.⁹ Perceptions of which AEs were most challenging also differed between healthcare providers (HCPs) and patients who had experienced them (Figure 1), highlighting the importance of considering the patient perspective. Limiting treatment-related side effects was a priority for patients, particularly those aged ≥65 years (53% vs 33% for <65 years; p < 0.01) and those with comorbidities (52% vs 32%; p = 0.055).⁹ 

The physical burden of multiple myeloma can also affect functional independence. A prospective survey-based study of patients with newly diagnosed multiple myeloma (NDMM) and their care partners across France, Germany, Italy, and Spain assessed disease burden during the first year after diagnosis. Mean self-reported pain intensity (Numeric Pain Rating Scale) was moderate at Month 0 (5.2), with improvement at Month 3 (4.7), followed by a decline at Month 12 (5.4).⁶ Over the 12 months, physical function and independence declined. The proportion of patients managing without assistance fell from 17% at Month 0 to 9% at Month 12, while the proportion of patients able to work and do light housework but not strenuous activity decreased from 57% to 43%. The proportion of patients who remained active but were unable to work or do light activities increased from 34% to 45%.⁶    

Psychological burden 

The psychological burden of multiple myeloma affects both patients and their care partners. In an online interview-based study, patients with multiple myeloma who had received ≥3 lines of therapy reported psychological strain, including anxiety and fear, while care partners reported anxiety about the patient’s future, loss of personal identity, and feelings of guilt.⁸ 

Quantitative evidence similarly suggests that care partners may experience substantial psychological distress. In a prospective study examining patient-care partner dyads (patients, n = 124; care partners, n = 124) within the Dana-Farber/Harvard Cancer Center network, care partners reported higher rates of clinically significant anxiety symptoms than patients with multiple myeloma (44.4% vs 22.6%), although they reported fewer clinically significant depression symptoms (15.3% vs 24.2%) and similar rates of post-traumatic stress disorder (PTSD) symptoms (24.2% vs 25.0%).⁷ These findings highlight the importance of considering the psychological wellbeing of care partners alongside that of patients. 

Social and lifestyle burden 

Multiple myeloma can have a significant impact on patients’ social and leisure activities. In the study by Gatopoulou et al.⁶, patients with NDMM reported changes in their leisure and social activities following diagnosis. By Month 12, the majority of patients had stopped taking part in social, cultural, and physical activities (Figure 2). However, given the timing of the study, some activities may have been independently restricted by the COVID-19 pandemic.⁶ While care partners felt that their role was impacting their ability to do regular activities, family life, and social activities, the effect remained consistent over the three timepoints.⁶ 

The demands of interacting with the healthcare system represent another important component of disease-management burden. In an analysis by Mian et al.⁴ of 3,065 patients aged >65 years with NDMM identified in the Surveillance, Epidemiology, and End Results (SEER)-Medicare database, patients spent a median of 77 days interacting with the healthcare system during the first year after diagnosis. Treatment burden was greatest during the first 3 months, with a peak of approximately 5 total healthcare encounters per month. Medication management also contributed substantially, with patients receiving a median of 18 unique medications, more than half of which were prescribed during the first 3 months.⁴ 

Similarly, patients and care partners interviewed by Jiao et al.⁸ described treatment for multiple myeloma as highly time-intensive. Patients reported difficulties maintaining their pre-diagnosis lifestyles due to the physical or financial demands of treatment. Care partners reported giving up hobbies and interests, and having less time to socialize with family and friends.⁸  

Financial burden 

The financial burden of multiple myeloma can arise from both direct costs and impacts on employment and productivity, affecting patients and their care partners. In the study by Gatopoulou et al.⁶, patient-reported direct costs varied over the first year after diagnosis, with home adaptations representing a major component of expenditure, particularly among transplant-ineligible patients. Employment and work productivity were also impacted following diagnosis, with the proportion of patients who were employed decreasing from 21% at Month 0 to 13% at Month 12.⁶ The proportion of patients who stopped working or reduced their hours due to their condition increased from 5% at Month 0 to 20% at Month 12.⁶ The overall cost of absenteeism of patients with NDMM and their care partners to employers for each patient for the previous 3 months was €10,474.80 (patients, €8,769.60; care partners, €1,705.20) at Month 0, €10,219.22 (patients, €8,640.60; care partners, €1,578.62) at Month 3, and €7,979.13 (patients, €7,101.68; care partners, €877.45) at Month 12.⁶ 

Additionally, a study by Fiala¹⁰ assessed financial toxicity in 130 patients with multiple myeloma who were treated at the Siteman Cancer Centre, Missouri, US, in 2022, using the Comprehensive Score for Financial Toxicity (COST), and found that 46% of patients were considered to have financial toxicity.¹⁰  

Treatment preferences in an evolving therapeutic landscape 

As treatment options for multiple myeloma continue to expand, patients and their care partners may weigh efficacy alongside treatment burden and its impact on everyday life. In the study by Jiao et al.⁸, patients identified efficacy, tolerability, and convenience as important considerations when evaluating treatment options. Online information and patient groups also influenced perceptions of novel therapies.⁸ Care partners similarly valued efficacy and minimal side effects, while emphasizing the importance of greater transparency regarding the potential impact of side effects on everyday life.⁸ 

Ailawadhi et al.⁹ assessed patients’ priorities in their choice to initiate a new treatment by geographic region, lines of therapy, and age (Table 1). Older patients prioritized slowing down multiple myeloma progression and limiting side effects, while younger patients were more concerned with convenience of treatment.⁹ 

Table 1. Top three priorities ranked by patients with RRMM for their most recent treatment decision* 

In the study by O’Donnell et al.⁷, care partners most frequently reported that their primary goal of the patient’s treatment was to extend their life as long as possible (43.7%), to cure their cancer (27.8%), to make sure they have done everything (10.3%), and for them and/or their family to be able to continue hope (10.3%). 

Conclusion 

The burden of multiple myeloma extends beyond disease control and treatment efficacy, encompassing physical, psychological, social, and financial aspects of patients’ and their care partners' lives. As treatment options continue to expand and patients may receive multiple lines of therapy over an increasingly prolonged disease course, the demands of disease management can accumulate and evolve over time. Understanding these multidimensional burdens, together with the treatment priorities of patients and their care partners, is important for suppoerting patient-centered care. Recognizing and addressing disease-management burden alongside clinical outcomes may help HCPs to support treatment choices that better align with the priorities and needs of patients and their care partners.   

This educational resource is independently supported by AbbVie. All content is developed by SES in collaboration with an expert steering committee. Funders are allowed no influence.