Treatment Burden, End-of-Life Symptom Gaps in Multiple Myeloma

Treatment advances in multiple myeloma (MM) have extended survival for hundreds of thousands of patients, but 2 posters presented at the European Hematology Association 2026 Congress reveal the gaps those advances have left behind: a mounting, multifaceted burden on patients and care partners during active treatment and undertreated physical suffering in the final week of life.^1,2

Together, the studies make a clear case that MM’s complexity demands a more patient-centered, whole-person approach to care.

What Does Living With MM Cost Patients and Caregivers?

The first poster examined the holistic treatment burden among 12 patients with MM and 9 care partners through 1:1 semistructured online qualitative interviews conducted between July and October 2025.¹ Trained moderators used open-ended discussion guides to explore physical, psychosocial, and financial dimensions of treatment.

The physical burden was pervasive: all patients experienced adverse effects (AEs) ranging from general pain and flu-like symptoms to episodes severe enough to require urgent medical attention. Psychological strain was also nearly universal, with anxiety and fear reported broadly; pharmacological support was needed in 2 of the 12 patients. Care partners described their own psychological toll, including an eroded sense of identity, feelings of guilt, and the emotional weight of watching a loved one suffer.

Financial toxicity ran through multiple themes. Patients described navigating complex insurance structures and relying on manufacturer grants and support programs, often without adequate guidance. Care partners reported employment disruptions, including time away from work and, in some cases, job loss, driven by travel demands and caregiving responsibilities.

Previous research shows caregiver demand has intensified as MM treatment has grown more sophisticated, with cellular therapies like chimeric antigen receptor T-cell therapy and bispecific antibodies requiring sustained caregiver engagement across weeks of active monitoring.³

Lifestyle disruption was another prominent theme: patients and care partners alike described giving up hobbies, curtailing social activity, and restructuring daily routines.¹ Perceptions of novel therapies reflected a mix of hope and wariness, with patients and care partners seeking greater transparency from clinicians and manufacturers about AE profiles and how new treatments might affect daily life. The authors concluded that simplified, patient-centered treatment options and reduced logistical burden remain key unmet needs.

How Does MM’s End-of-Life Pain Compare With Other Blood Cancers?

The second poster drew on a large population-based registry to compare symptom burden in the final week of life among 3 groups: 4310 patients with MM, 8974 with aggressive hematological malignancies (HMs), and 6085 with indolent HMs.² Data came from the Swedish Register of Palliative Care and covered deaths between 2011 and 2023. The mean (SD) patient age was 62 (7.6) years and 53 (12.1) years among caregivers.

The central finding was stark: patients with MM experienced significantly higher rates of pain during their last week of life compared with the aggressive and indolent HM patient groups: 77% vs 73% and 71%, respectively (P < .001 for both). Pain for MM also was less likely to be fully relieved than in either comparator group (P < .001 for both). Rates of breathlessness, anxiety, confusion/delirium, nausea, and death rattle were also measurably elevated in MM relative to indolent HM.

Researchers also found that patients with aggressive HM were more likely to die in specialized palliative care (24.6%) and more likely to have had end-of-life discussions documented (69.4%) compared with patients with MM (20.6% and 65.3%, respectively). Palliative care often remains underutilized in MM, and hospitalization and aggressive treatment rates at the end of life (EOL) are disproportionately high in this population.⁴

The clinical implication drawn by the authors was direct: patients living with MM have more complex pain needs at EOL than patients with other blood cancers, and current care systems are not consistently meeting those needs.² Future work, they suggested, should examine what structural and clinical factors drive the gap in pain relief and how earlier palliative integration might close it.

What Is the Shared Imperative Across the Disease Continuum?

This research traces MM’s burden across its full arc. The qualitative data show how those pressures ripple outward to care partners and reshape the lives of entire households, and the Swedish data make the case that the same population faces a higher probability of undertreated pain when curative options are exhausted.^1,2

Together, the posters point toward the same intervention target: earlier, more systematic integration of supportive and palliative care throughout the MM disease course, paired with logistical supports that reduce the cost—in time, money, and quality of life—that treatment currently imposes on patients and families.

References

1. Jiao S, Tugwete C, Wilson H, et al. Burden of disease management among patients with multiple myeloma and their care partners. Presented at: EHA 2026 Congress; June 11-14, 2026; Stockholm, Sweden. Poster PS2499.
2. Freij E, Hedman C, Stokman E, et al. Symptom burden of patients with multiple myeloma during the last week of life compared to other haematological malignancies — a population-based registry study. Presented at: EHA 2026 Congress; June 11-14, 2026; Stockholm, Sweden. Poster PF1406.
3. Shaw ML. Redefining fitness, frailty, and survivorship in multiple myeloma. AJMC^®. March 17, 2026. Accessed June 26, 2026. https://www.ajmc.com/view/redefining-fitness-frailty-and-survivorship-in-multiple-myeloma
4. McNulty R. End-of-life care in multiple myeloma still requires fine-tuning, despite improvements. AJMC. December 1, 2022. Accessed June 26, 2026. https://www.ajmc.com/view/end-of-life-care-in-multiple-myeloma-still-requires-fine-tuning-despite-improvements