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Insights Into the Burden of MM on Caregivers

August 30, 2022

September 2022

A significant proportion of caregivers of patients with multiple myeloma (MM) experience substantial psychological distress and believe that their loved one’s disease is curable, according to study findings published in Blood Advances.1

Caregivers of patients with MM support them through the course of disease, but the burden on caregivers has rarely been examined. This cross-sectional, multisite study of patients undergoing treatment for MM and their caregivers describes the lived experiences of caregivers of patients with MM. Investigators identified 156 potential caregivers to achieve a sample size of 127 caregivers (71.7% female). They examined quality of life (QoL), psychological distress, and prognostic perceptions by line of therapy (newly diagnosed, two to three lines of therapy, and four or more lines of therapy).

Caregiver QoL was measured using the CareGiver Oncology QoL questionnaire, with higher total scores (range = 0-100) indicating better QoL. The investigators reported that caregiver QoL did not differ by line of therapy: QoL score was 74.5 (standard deviation [SD] = 12.7) for newly diagnosed, 73.2 (SD=13.3) for two to three lines of therapy, and 71.7 (SD=14.7) for four or more lines of therapy. When the researchers performed unadjusted analyses, they found that caregiver sex, employment, education level, or patient’s receipt of transplantation were also not associated with caregiver QoL or psychological distress.

Overall, caregivers of patients with MM experienced substantial psychological distress, with 44.1% suffering from clinically significant anxiety and 24.4% suffering from symptoms of post-​traumatic stress disorder (PTSD). The authors explained that the level of anxiety was striking and distinctive because it was sustained across a long disease continuum.

The researchers found that 89.6% of caregivers reported it was “extremely” or “very” important to know about the patient’s prognosis, and most caregivers (84.2%) reported that the oncologist had told them the patient’s cancer was incurable. Still, many caregivers (46.4%) believed the patient’s disease was curable.

While it was unclear to what extent caregivers’ lack of prognostic awareness affected medical decision making, 27.8% of all caregivers reported that their primary goal of therapy was cure, and 11.9% reported that their oncologist’s primary goal was cure.

“There has been little written about caregivers and myeloma, and it is such an important part of myeloma,” said corresponding author Elizabeth O’Donnell, MD, of Massachusetts General Hospital in Boston. Her research has indicated the anxiety of caregivers was higher than that of patients.

The companion to this paper, “Quality of life, psychological distress, and prognostic perceptions in patients with multiple myeloma,” was published earlier this year in Cancer.2

“Our work shows that [anxiety levels] do not dissipate,” she said. “They remain high.”

Dr. O’Donnell explained that when she started her training, the median survival time of patients with MM was 18 months, and now the median survival time is 7.5 years.

“It’s a very medically dense cancer compared to some others,” Dr. O’Donnell said. “Patients endure a lot over the disease course, and it remains an incurable cancer.”

Limitations included that the study was conducted at an academic center with a relatively homogeneous, primarily white population. The study also enrolled caregivers to one of three cohorts based on line of therapy rather than following individual caregivers over the entirety of their loved one’s MM course.

Any conflicts of interest declared by the authors can be found in the original article.


  1. O’Donnell EK, Shapiro YN, Yee AJ, et al. Quality of life, psychological distress, and prognostic perceptions of caregivers of patients with multiple myeloma [published online 2022 July 18]. Blood Adv. doi: 1182/bloodadvances.2022007127.
  2. O’Donnell EK, Shapiro YN, Yee AJ, et al. Quality of life, psychological distress, and prognostic perceptions in patients with multiple myeloma. Cancer. 2022;128(10):1996-2004.


Clinical paradigms for the management of MM continue to evolve rapidly. Epidemiologic data from the past 10 years reflect broadly improving progression-free and overall survival as compared to earlier treatment eras.1 This welcome trend has heralded a shift in the approach toward myeloma to that of a chronic disease for which patients can expect to spend years receiving treatment. Among the many implications of this change in perspective is confusion over the definition of “curability” for this malignancy among specialists.

An examination of the literature reveals efforts to delineate terms such as “functional cure” or “operational cure” as they apply to a growing segment of the myeloma population with very long survival times despite persistence of their underlying disease.2 The emergence of measurable residual disease as a surrogate endpoint for survival and ongoing debate about its application in clinical practice can further confound prognostication for patients with MM.3

This investigation evaluates QoL, psychological distress, and prognostic awareness among caregivers of patients with MM at multiple points in the treatment process, including at diagnosis and various stages of relapse. The study demonstrated significant rates of anxiety (44.1%), depression (15.8%), and PTSD symptoms (24.4%) without significant variation at distinct disease stages. Although the preponderance of caregivers acknowledged that the oncologist informed them the disease was incurable (84.2%), only about half (53.6%) perceived the patient’s disease as incurable and more than a quarter (27.8%) related cure as a primary treatment goal. Receiving information from the oncologist that the disease was incurable did not adversely affect caregiver QoL.

There are limitations to the analysis, many of which relate to the clinical heterogeneity of MM and the difficulty in ascertaining caregiver perception of prognosis. Using line of therapy to differentiate patients may not capture the diversity in disease burden at relapse in this population. It is also challenging to quantify external factors that may contribute to caregiver anxiety, including the financial burden of care or the ongoing COVID-19 pandemic, which was at its peak during the time of data collection. Additionally, perception of incurability as communicated by the oncologist was captured as a binary response, whereas the caregiver perception was captured on a likelihood scale and subsequently dichotomized.

Systematic attempts to understand the psychological burden of caregiving for patients with MM and the effect of perception of prognosis on caregiver well-being are essential as caregivers, patients, and clinicians navigate an evolving treatment landscape. Carefully conceived investigations along the lines of this study can guide clinicians in communicating with caregivers in an era where the definition of “cure” in MM remains fluid.

Louis S. Williams, MD
Taussig Cancer Center, Cleveland Clinic Foundation
Cleveland, Ohio


  1. Thorsteinsdottir S, Dickman PW, Landgren O, et al. Dramatically improved survival in multiple myeloma patients in the recent decade: results from a Swedish population-based study. Haematologica. 2018;103(9):e412-e415.
  2. Mohty M, Avet-Loiseau H, Harousseau J-L. Requirements for operational cure in multiple myeloma. Blood. 2021;138(16):1406-1411.
  3. Cavo M, San-Miguel J, Usmani SZ, et al. Prognostic value of minimal residual disease negativity in myeloma: combined analysis of POLLUX, CASTOR, ALCYONE, and MAIA. Blood. 2022;139(6):835-844.


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