This cross-country survey examined how patients with multiple myeloma (MM) and healthcare professionals (HCPs) involved in MM care perceive, understand, and enact shared decision-making (SDM). The authors sought to quantify: I) knowledge of the SDM concept among MM patients and HCPs, II) current and desired levels of patient involvement in treatment and care decisions, and III) whether participant characteristics (for example age, gender or health literacy) were associated with willingness to be involved.
The study is positioned against a clinical context in which MM is a chronic, currently incurable hematological cancer with many evolving treatment options. Given the preference-sensitive nature of MM care, characterized by multiple therapeutic choices with differing efficacy, toxicity and administration profiles, SDM is framed as particularly relevant. Guidelines such as ASCO and ESMO emphasize the role of patient participation where several viable options exist.
An English-language online survey was developed for two respondent groups: MM patients and HCPs involved in MM care. The patient and HCP questionnaires were largely similar, with adaptations for each audience. The survey was launched in October 2023 for patients and in December 2023 for HCPs; responses were subsequently analyzed using statistical methods reported by the authors.
A total of 558 patients and 89 HCPs completed the survey. Patient respondents were geographically concentrated with notable representation from the Netherlands (28.7%), Israel (23.5%) and Belgium (15.8%). HCP respondents were primarily from France (39.3%) and Israel (24.7%). Further methodological details and minimal datasets are reported in the paper and supporting information.
The survey identified notable gaps in familiarity with the SDM concept. Among patients, 56.6% reported they had not previously heard of SDM. Among HCPs, 28.1% reported not having heard of the term. These findings indicate that while the principles of patient involvement may be enacted in practice, the explicit framing and terminology of shared decision-making are not uniformly recognized across patients and clinicians in the sampled population.
Almost all respondents in the patient sample (96.1%) stated that they want to be involved in treatment decisions. Only 3.9% of patients indicated they did not want to be involved; the reasons given included uncertainty about whether they possessed sufficient knowledge to make decisions and an established pattern of deferring to the clinician to decide. This distribution underscores a strong overall preference among MM patients for participation in decision-making while also highlighting a small subgroup that prefers a clinician-led approach for specific reasons.
All HCP respondents reported that MM patients should be involved in decision-making if patients wish to participate. This unanimous clinician stance in the responding sample suggests professional support for patient involvement, even though a portion of HCPs reported limited familiarity with the SDM label itself.
Patients reported higher involvement scores for recent consultations, indicating they felt more engaged in ongoing treatment visits. However, patients expressed a desire to be more involved specifically in initial decisions made soon after diagnosis. This contrast suggests that while involvement may increase during routine or follow-up care, early decision points—when patients are first confronted with diagnosis and initial treatment choices—remain areas where greater efforts to elicit and support patient preferences are desired.
The authors analyzed whether participant characteristics (such as age, gender or health literacy) were associated with reported involvement or willingness to participate in decision-making. The survey revealed no statistically significant differences in involvement and willingness across the examined characteristics. Details of the statistical tests and covariates are provided in the study’s methods and results sections.
Despite the high patient desire for involvement and clinician willingness to involve patients, the study identifies practical challenges for implementing SDM in MM care. These include inconsistent understanding of the SDM concept, variability in practice across consultation types (particularly at initial diagnosis), and the need to assess individual patients’ preferences and needs rather than assuming a uniform approach. The authors recommend attention to education about SDM and tools or processes that operationalize involvement tailored to each patient’s preferences.
The minimal dataset supporting the analyses is reported in the paper and supporting files; additional data can be requested from Myeloma Patients Europe. Financial support came from Myeloma Patients Europe, which received project funding from Takeda; the funder did not participate in study design, data collection, analysis, interpretation, or manuscript writing. The authors disclose affiliations and contributions; standard open-access licensing applies.