Abstract Topic: 35. Quality of life and palliative care
Background: Treatment decision-making for multiple myeloma (MM) is complex. Communication deficiencies among patients living with MM (PLMM), caregivers (CG), and physicians may lead to misunderstanding in preferences and treatment goals which ultimately affects the patient journey.
Aims: We aim to describe the MM treatment decision-making roles and preferences of PLMMs, CGs, and physicians.
Methods: An online survey was conducted with consenting adult PLMMs, CGs, and physicians who treat MM. Respondents were recruited from US panels between 9/2022 and 11/2022. Survey items were informed by a targeted literature review, interviews, and a panel of clinical experts, PLMMs, and CGs. Descriptive statistics were generated and reported in aggregate.
Results: Overall, 126 PLMMs, 30 CGs, and 137 physicians completed their respective surveys. 52% of PLMMs reported being referred to a MM specialist upon diagnosis; 4% of non-MM specialist physicians reported referring patients to a specialist upon diagnosis. 33% of PLMMs and 37% of CGs reported not receiving written materials about treatment options, while 82% of physicians said they routinely provide written materials. PLMMs, CGs, and physicians agreed that the MM specialist and oncologist were primary sources of treatment information; PLMMs also relied on oncology nurses, nurse practitioners and physician assistants, and online MM communities. The three respondent groups were aligned on the top three treatment attributes: duration of response, side effects, and patient quality of life. Variations in ranking were observed when patients were stratified by the number of prior relapses. Separately, PLMMs and CGs were likely or highly likely to tolerate some inconveniences (e.g., higher treatment or monitoring frequency, or more adjunctive medications) for a better treatment response. If more effective MM treatments were offered, CGs were more willing than PLMMs to assume greater family care burden and PLMMs were more accepting of potential serious side effects than were CGs. 46% of PLMMs and 33% of CGs preferred equal involvement with the physician in the decision-making process; only 37% of PLMMs and 23% of CGs reported that equal involvement actually occurred. Most physicians reported that patients often or almost always wanted them to make the final treatment decision, regardless of whether patients were newly diagnosed (73%) or relapsed/refractory (78%).
Summary/Conclusion: PLMMs, CGs, and physicians consider and value different factors when making treatment decisions. Negotiating these differences is important and warrants that parties align on which factors are most relevant and critical to satisfy patient preferences and needs, and to optimize patient outcomes. Various strategies and resources, such as in-office and virtual patient education materials, may inform and empower patients to communicate their treatment preferences, goals, and concerns as well as improve patient experiences.
Keywords: Patient, Real world data, Caregiver, Multiple myeloma