During semi-structured interviews, patients with multiple myeloma indicated they had concerns with financial pressure, social and relationship impacts, and fear of treatment without end. These findings were published in Oncology Nursing Forum.
Although some patients with multiple myeloma may experience long and deep remissions, relapse is common. Many patients receive subsequent lines of therapy, experiencing cumulative toxicities. Much of what is known about symptom burden and quality of life for patients with multiple myeloma comes from clinical trial data from a highly select group of patients and may not reflect the experiences of the general patient population.
Fifteen patients and 10 clinicians at Duke Cancer Institute in the United States participated in this cross-sectional, qualitative study, which explored the effects of a multiple myeloma diagnosis during a 1-hour interview conducted between 2017 and 2018.
Patients were mean age 63.67±11.5 years, 8 were men, 9 were Black, and they had received their diagnosis 71.9 months (range, 8 to 144) previously.
Patients indicated they felt that their treatment was relentless, even during times of remission, and that their treatment plan did not allowed for a period of recuperation.
Their treatments caused symptoms of fatigue or neuropathy which often barred them from participating in activities they enjoyed or socializing. Patients reported staying in bed for long periods or missing activities due to fear of diarrhea. These symptoms altered the patient’s relationships both in and out of their homes.
The necessity for ongoing treatment was causing a significant financial burden. One 58-year-old patient reported that he had no finances, anymore. Despite the ongoing healthcare costs, their negative symptoms prohibited them from continuing or seeking employment to help with the financial liability of their treatment.
A limitation of this study was that it was based on a few patients treated at a single center and may not be generalizable in other settings.
Clinicians who treat patients with multiple myeloma should be aware of common concerns and difficulties for their patients and be familiar with potential emotional and financial interventions that are available.
LeBlanc MR, LeBlanc TW, Bryant AL, Pollak KI, Baily Jr DE, Smith SK. A qualitative study of the experiences of living with multiple myeloma. Oncol Nurs Forum. 2021;48(2):151-160. doi:10.1188/21.ONF.151-160