MM patients want to be involved in treatment decisions and HCPs are willing to involve them, but challenges remain concerning the practical implementation of involvement and SDM, with over half of patients and HCPs never having heard of the concept.
The majority of multiple myeloma patients and healthcare professionals had never previously heard of shared decision-making.
Nearly all multiple myeloma patients expressed a desire to be involved in treatment decisions.
Patients reported higher involvement scores at recent consultations compared to initial decisions following diagnosis, and desired greater involvement in initial post-diagnosis decisions.
No significant differences were found between participants' characteristics and their level of involvement or willingness to be involved.
The study sample was geographically diverse, with patients and HCPs drawn from multiple countries across Europe and the Middle East.
Despite mutual willingness for patient involvement, practical implementation of shared decision-making in multiple myeloma care remains challenging.
This research surveyed 558 multiple myeloma (MM) patients and 89 healthcare professionals (HCPs) across several countries to understand how much patients are currently involved in their treatment decisions, how much they want to be involved, and whether factors like age, gender, or health literacy affect this. The study found that while the vast majority of patients (96.1%) want to have a say in their care, more than half of patients (56.6%) and over a quarter of HCPs (28.1%) had never even heard of 'shared decision-making' — the formal concept of patients and clinicians making healthcare decisions together. Importantly, all HCPs surveyed believed patients should be involved if they wish to be, suggesting agreement in principle between patients and providers. The research also found that patients felt more involved in decisions during recent appointments than they did at the time of their initial diagnosis, and that they wished they had been more involved from the very beginning. Despite examining factors like age, gender, and health literacy, the study found no significant differences in how involved patients were or wanted to be based on these characteristics, suggesting the desire for involvement is broadly consistent across different types of patients. This research suggests that while both MM patients and their healthcare teams are open to sharing decision-making, there is a significant gap in awareness of what SDM actually means, and real-world barriers exist to putting it into practice — particularly at the critical moment of initial diagnosis. These findings point to a need for better education about SDM for both patients and clinicians, as well as tools and processes to help assess and respond to individual patients' preferences for involvement in their own care.
Verbeke C, Broekmans J, Schoefs E, Ten Seldam S, Morgan K, Joyner K, et al.. (2026). Enhancing patient involvement through shared decision-making: Are we there yet in multiple myeloma? Findings from a cross-country survey.. PloS one. https://doi.org/10.1371/journal.pone.0356989