Patient perspectives on considerations, tradeoffs, and experiences with multiple myeloma treatment selection: a qualitative descriptive study

Abstract

Background Advances in multiple myeloma treatment and a proliferation of treatment options have resulted in improved survival rates and periods of symptom-free remission for many multiple myeloma patients. As a result, health-related quality of life (HRQoL) concerns related to myeloma treatments have become increasingly salient for this patient population and represent an important consideration guiding patients’ treatment choices. To gain an understanding of patients’ experiences with choosing myeloma therapies and explore the HRQoL concerns that are most important to them, we interviewed a diverse sample of US-based multiple myeloma patients about their treatment considerations. Methods We conducted a qualitative descriptive study using in-depth interviews. Participants reflected on (1) the factors that were most important to them when thinking about multiple myeloma treatment and how these have changed over time, (2) how they might weigh the importance of treatment efficacy vs. side effects, (3) trade-offs they would be willing to make regarding efficacy vs. HRQoL, and (4) treatment changes they had experienced. Interviews were audio-recorded and transcribed, and narratives were analyzed using applied thematic analysis. Results We interviewed 21 patients, heterogeneous in their disease trajectory and treatment experience. Participants were 36 to 78 years, 52% female, and 38% Black. Efficacy was named as the most important treatment consideration by almost two-thirds of participants, and over half also valued HRQoL aspects such as the ability to maintain daily functioning and enjoyment of life. Participants expressed concern about potential treatment side effects and preferred more convenient treatment options. Although participants stated largely trusting their clinicians’ treatment recommendations, many said they would stop a clinician-recommended treatment if it negatively impacted their HRQoL. Participants also said that while they prioritized treatment efficacy, they would be willing to change to a less efficacious treatment if side effects became intolerable. Conclusions Our findings link to other reports reflecting considerations that are important to multiple myeloma patients, including the importance placed on increasing life expectancy and progression-free survival, but also the tension between treatment efficacy and quality of life. Our results extend these findings to a racially diverse US-based patient population at different stages in the disease trajectory.

Patient perspectives on BCMA-targeted therapies for multiple myeloma: a survey conducted in a patient advocacy group

“…Many patients reported that they would consider changing current treatment for a new therapy if the new therapy has a potential to double the remission time, is fully covered by their insurance, or markedly reduce SE burden, indicating patients' desire to improve quality of life and reduce cost and disease burden while living longer. This finding is consistent with other studies on patient perspectives conducted in the US ( 19 ) and other countries ( 4 , 20 – 22 ). While efficacy has been consistently identified as the most important factor when choosing MM treatment options, a variety of other factors influence patients' decision-making, including quality of life and tolerability of SEs ( 19 , 21 – 23 ).…”

“…This finding is consistent with other studies on patient perspectives conducted in the US ( 19 ) and other countries ( 4 , 20 – 22 ). While efficacy has been consistently identified as the most important factor when choosing MM treatment options, a variety of other factors influence patients' decision-making, including quality of life and tolerability of SEs ( 19 , 21 – 23 ).…”

“…While efficacy, safety, and quality of life were the most important deciding factors, the trade-offs that patients were willing to take differed depending on patient populations. For example, in 2 qualitative descriptive studies by Dombeck et al and He et al, respectively ( 19 , 20 ), patients expressed preference for more convenient treatment options; whereas in our survey more than half of the respondents were willing to accept certain inconvenience (e.g., regular AE monitoring, initiating a therapy in a hospital setting) for a treatment that could be clinically beneficial. Additionally, in the study by He et al, the patients with newly diagnosed MM and RRMM from the United Kingdom, France, and Germany did not identify financial impact as a burden whereas patients in our survey (US patients with RRMM) and patients in Parsons' study (Canadian patients with RRMM) identified costs of treatment and insurance coverage as a major consideration, which likely reflects the differences in healthcare systems and cost coverage between European countries, Canada, and the US.…”

Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome

“…Qualitative studies in chronic haematological malignancies such as MM and MDS have examined treatment decision‐making, 7,8 prognosis, 9 and distress 10 . Qualitative studies in MM spanned a range of areas including younger patients, longer‐term survivors, and cognitive impairment 11 .…”

Attitudes, expectations, and lived experiences of cancer patients receiving dendritic cell vaccine therapy in Japan

“…For example, the immune checkpoint inhibitor therapy patients interviewed by Cappelli et al 32 expressed fear and uncertainty about the treatment and the impact of side effects on their quality of life. Dombeck et al 33 found that, when making treatment decisions, patients with multiple myeloma tried to balance treatment efficacy with quality of life. Ihrig et al 34 pointed out that German patients’ expectations of immunotherapy may sometimes be unrealistic.…”