Survey Finds 96% of Multiple Myeloma Patients Want a Role in Treatment Decisions, Yet Most Have Never Heard of Shared Decision-Making
核心洞察
A cross-country survey of 558 multiple myeloma (搜索) patients and 89 healthcare professionals found that 96.1% of patients want to be involved in treatment decisions.
More than half of patients (56.6%) and 28.1% of healthcare professionals had never previously heard of the shared decision-making concept.
Patients scored their involvement lower than clinicians did, with median SDM-Q scores of 58 versus 78, a statistically significant gap.
Nearly all patients with multiple myeloma (搜索) want a say in their treatment, but most have never encountered the formal concept meant to structure that involvement, according to a cross-country survey published in PLOS One.
The study, led by researchers working with the patient organization Myeloma Patients Europe (搜索), surveyed 558 patients with multiple myeloma (搜索) and 89 healthcare professionals involved in myeloma care between October 2023 and March 2024. It found that 96.1% of patients (n = 536) indicated they want to be involved in decision-making, while all 89 clinicians agreed that patients should be involved if they wish to be.
Yet awareness of shared decision-making (SDM) as a defined process was low. A total of 316 patients (56.6%) and 25 healthcare professionals (28.1%) had not previously heard of the concept. Among those who had, descriptions rarely captured core elements of the process, such as making clear that a decision needs to be made or assessing a patient's preferred role in decision-making.
A Persistent Perception Gap Between Patients and Clinicians
The survey used the validated SDM-Q-9 questionnaire for patients and the SDM-Q-Doc for clinicians, both scored on a 0–100 scale, to assess how far the steps of shared decision-making were applied in a recent consultation where a decision was required.
Clinicians rated the process significantly higher than patients. Patients reported a median score of 58 (IQR 42–71), compared with 78 (IQR 71–84) among healthcare professionals — a difference that was statistically significant (t-test, p < 0.001).
The divergence was most visible on specific steps. All participating clinicians agreed that the advantages and disadvantages of treatment options are explained and that they help patients understand all the information. Around 30% of patients disagreed that these steps were applied during their consultation. On the step covering whether the clinician wanted to know how the patient wished to be involved, 40% of patients rated toward disagreement, while 80% of clinicians believed they had sought that information.
Trust and Relationship Quality Track With Involvement
The survey identified a consistent association between the patient–clinician relationship and the experience of involvement. Most patients described their relationship with their treating physician as "very good" (56.8%) or "good" (31.0%).
Patients who perceived greater involvement also tended to report a better relationship with their physician (Spearman correlation +0.36, p < 0.001), and a one-way ANOVA showed significant differences in SDM-Q-9 scores across categories of the patient–physician relationship (p < 0.001), with better relationships associated with higher scores. A significant association was also found between relationship quality and whether the clinician asked patients about their preferred way of receiving information (Fisher's exact test, p < 0.001).
Involvement Grows Over the Treatment Journey, but Diagnosis Lags
Most patients reported feeling "somewhat" to "extremely" involved both at initial consultations following diagnosis (65.9%) and at recent consultations (74.0%), with more patients reporting higher involvement later in their disease course.
Desire for involvement was higher still: 77.1% of patients wanted to be "quite a bit" or "extremely" involved in initial consultations, rising to 80.1% for recent consultations. Current and desired involvement correlated positively at both diagnosis (r = 0.44, p < 0.001) and recent consultations (r = 0.51, p < 0.001).
When asked how decisions are actually made, 28.0% of patients (n = 156) said decisions are currently made together with the treating physician. Asked about their ideal arrangement, 30.8% preferred deciding together with the treating physician and 24.9% preferred deciding together with the treating physician and the multidisciplinary team. Overall, 48% of patients said the current way decisions are made already matches their ideal.
Clinicians leaned toward a different model: 46.1% (n = 41) said they want decisions made together with the multidisciplinary team while considering the patient's opinion. Most clinicians reported assessing their patients' preferred level of involvement "very often" (38.2%) or "sometimes" (39.3%).
Knowledge Gaps Are the Leading Barrier
The most frequently cited barrier to involvement among patients was a lack of knowledge to participate (69.4%), followed by not understanding everything the clinician says (61.8%) and reluctance to discuss their disease, treatment, complaints and concerns (43.7%). Clinicians most often cited patients not wanting the responsibility of involvement (79.8%), lack of understanding (75.3%) and lack of knowledge (66.3%).
A small minority of patients (3.9%, n = 22) said they did not want to be involved, chiefly because they did not know whether they would have enough knowledge to decide (77.3%) or because they were used to the clinician deciding (36.4%).
Among patients who wanted involvement, the leading motivations were concern for their own body and health (78.9%), being the ones to experience the benefits, side effects and uncertainties of treatment (65.5%), and the belief that involvement leads to a better decision for them (59.5%). Clinicians cited improved compliance (79.8%), patients experiencing the treatment consequences (71.9%) and better decisions (68.5%).
Characteristics Show Little Effect on Willingness
The study tested whether patient characteristics influenced willingness to be involved. Only country of residence showed a statistically significant association (p = 0.026), and the authors cautioned that this result should be interpreted carefully given the over- and under-representation of countries in the sample. No significant differences in involvement were found for age, gender, health literacy or other characteristics.
Awareness of the SDM concept, by contrast, was strongly associated with gender (p = 0.007, with more women having heard of it), country (p < 0.001), level of education (p = 0.009), health status (p = 0.004) and medical background (p = 0.001). Among clinicians, no strong association was found between SDM knowledge and characteristics such as age, gender, specialty, workplace, years of experience or consultation length.
Context and Caveats
Multiple myeloma (搜索) is a rare hematological cancer currently considered incurable, with an evolving treatment landscape that includes CAR-T cell therapy (搜索) and bispecific antibodies (搜索), each carrying distinct effects on survival, efficacy and toxicity. Guidelines from ASCO and ESMO list treatment options for clinicians and patients to discuss, and the ASCO guideline highlights the necessity of shared decision-making given the many effective options available for both newly diagnosed and relapsed or refractory disease.
The authors note several limitations. Recruitment through the patient organization and voluntary participation may have introduced selection bias toward patients with better health and greater knowledge of shared decision-making, and the online format may have favored participants comfortable with technology. The lengthy survey risked dropout and fatigue, and predefined answer options may have shaped responses. Distribution across countries was unequal, limiting country-level conclusions, and because patient and clinician data came from different groups, the exploratory comparison between them is not fully comparable.
The authors conclude that awareness of how to implement the individual steps of shared decision-making should be improved among both patients and clinicians, and that involvement should be adapted so that each patient feels comfortable. They describe shared decision-making not as a checklist but as a flexible and adaptable guideline toward patient involvement, and call for a trusting relationship in which patients feel safe sharing needs, preferences, uncertainties and fears. The next step, they write, is to create a framework of practical, stakeholder-informed recommendations to support implementation in myeloma care.