Patient-Centered Care in Hematology: How Side Effect Severity Influences Decision-Making Autonomy in Relapsed Refractory Multiple Myeloma

Introduction: Understanding patient preferences and decision-making processes is crucial in managing relapsed multiple myeloma (RRMM). Shared decision-making has become a key element of patient-centered care, allowing patients to collaborate with healthcare providers in choosing treatments that align with their health and quality of life goals. This study examines how the perceived severity of treatment side effects influences patient decision-making autonomy and communication patterns, providing insights into decision-making practices in hematology.

Methods: A survey was conducted with 784 RRMM patients as of January 1, 2024, using HealthTree Cure Hub (PMID: 35271305). Among the participants, 333 experienced a relapse and responded to the question about how side effect severity affected their treatment choices. Of these, 54% (n=181) considered side effects to be very or extremely influential (VE), whereas 46% (n=152) regarded them as somewhat, slightly, or not influential at all (SSN). Participants evaluated these factors on 5-point Likert scales: 1 (very poor) to 5 (very good); 0 (not at all influential) to 4 (extremely influential). The survey assessed patient involvement in final treatment decisions, discussions with fellow patients, family or caregivers, and the time allocated and used for decision-making.

Results: Patients in the VE group reported a better understanding of the likely side effects of treatment options compared to the SSN group (VE: 3.9±1.0; SSN: 3.6±1.0, p<0.05), with a higher proportion reporting a very good understanding (VE: 31%, n=45; SSN: 18%, n=29, p=0.036). A weak relationship confirmed VE patients engaged in additional side effect education before making a change in treatment decisions (r=0.164, p=0.004).

VE patients also reported a better understanding of the balance between effectiveness and potential side effects of treatments than SSN patients (VE: 3.8±1.0; SSN: 3.5±1.1, p<0.05), with more VE patients reporting a very good understanding (29%, n=41 vs. 15%, n=24, p=0.006). A weak relationship confirmed that VE patients more closely evaluated the trade-offs of treatment options when choosing a new treatment regimen (r=0.197, p<0.001).

Likely to achieve a better understanding, more VE patients talked with fellow patients (VE: 19%, n=24; SSN: 7%, n=11, p = 0.003) and rated these conversations as more influential than SSN (VE: 1.5±1.5; SSN: 1.1±1.4, p<0.05).

Additionally, VE patients were more likely to discuss treatment options with family or caregivers before making a final decision (VE: 49%, n=61; SSN: 29%, n=43, p<0.05). Moreover, VE patients reported greater involvement in their doctor-patient communication approach (VE: 3.2±0.8; SSN: 2.8±0.8, p<0.05), with scores ranging from 1 ("...follow the doctor’s suggestions") to 4 ("...we discuss my preferences... and I make the final decision").

Furthermore, VE patients reported more self-determination in the treatment decision-making process than SSN patients, with more VE patients making the final treatment decision themselves rather than having their doctor decide (“I made the final decision” - VE: 66%, n=93; SSN: 52%, n=81; “My doctor made the final decision” - VE: 34%, n=47; SSN: 46%, n=72, p=0.013).

VE patients reported being provided 1.5 more weeks of time to make a treatment decision than the SSN (4.8±8.9 v. 3.3±6.0 wks, p<0.05). Subsequently, VE patients reported using 79% more time than SSN patients to arrive at a final decision (VE: 2.5±6.0; SSN: 1.4±1.9 wks, p<0.05), likely attributed to time spent gaining a better understanding, having more conversations with patients and family, more shared decision making and self-determination in their treatment decision.

Conclusion: The study highlights that RRMM patients who consider side effects to be very or extremely influential in their treatment decisions report being more proactive in understanding and discussing their treatment options. These patients engage more with healthcare providers, peers, and family members and are granted more time to make informed decisions. This emphasis on understanding and communication underscores the importance of personalized patient education and shared decision-making in the treatment of RRMM, especially for patients who are highly influenced by potential side effects. Together, these findings underscore the ongoing need for patient-centered care and education to optimize treatment choices.