Common Resources Used in Decision-Making for Relapsed/Refractory Multiple Myeloma Patients

Making treatment decisions as a relapsed or refractory patient can be a significant challenge. Given the number of available therapies and the use of myeloma drugs in combination, it can be a confusing exercise. What are the most common sources of information patients use to simplify their decision-making? 

HealthTree Foundation conducted a study in Cure Hub® that included 294 relapsed or refractory multiple myeloma patients who were undergoing treatment changes. Patients were asked the same questions for their first relapse and their most recent relapse. 

The study evaluated: 

• Frequency of educational resource utilization (1-never to 5-all the time)
• Quality of healthcare team explanations (1-very poor to 5-very good)
• Comfort level with final treatment decision (1-very uncomfortable to 5-very comfortable)
• Satisfaction with treatment education (1-very dissatisfied to 5-very satisfied)
• Time allocated and utilized for making a treatment decision

Top Educational Resources at First Relapse

Top patient resources at first relapse included: 

• Doctor/medical team recommendations (91%)
• Patient advocacy myeloma websites or resources (58%)
• Google searches (40%)
• Webinars (38%)
• Online videos featuring experts (37%)

Changes in Resource Use After First Relapse

After the first relapse, patients increased their reliance on medical journal articles, had a growing use of blood cancer society treatment guidelines (ASCO, mSMART), and engaged more with social media posts from myeloma experts. 

Healthcare Team Communication

Patients appreciated how their care team communicated with them about treatment options, which improved for each relapse. 

• Patients rated their care team's explanation of treatment options as good (4.0±1.1) at the first therapy change, with 95% considering these explanations acceptable or better.
• This rating improved at subsequent therapy changes (>3 changes: 4.4±0.7, p<0.05), with 100% rating them as acceptable or better.

Patient Confidence in the Treatment Decision

Patients' comfort level with their final treatment decision correlated with the quality of their care team’s explanations and their overall satisfaction with treatment education. However, comfort level did not correlate with the time given (4.7±9.3 weeks) or used (2.2±5.4 weeks) to make the decision.

Expanded Patient Support

The responses stress that while their medical team remains their most reliable resource, relapsed and refractory myeloma patients have high use of patient advocacy websites and services, which can break topics down into patient-friendly content that may be more easily digestible. Patients may also want to spend more time researching a topic from a patient advocacy organization when clinic visits are short and healthcare teams are busy. 

As patients become more savvy and educated over time, they also increase their use of medical journals and industry-standard guidelines, which means they are searching for more technical and evidence-based information. 

Many myeloma experts can be found on social media. The rise in engagement with expert-driven social media content highlights this trend. 

While traditional medical guidance is essential, the use of patient advocacy sites like HealthTree, medical journals, guidelines, and expert-driven social media points to a patient-driven approach to myeloma education.

Resources for You

HealthTree Foundation provides deep educational content and community support to help you better understand your multiple myeloma or precursor condition. We invite you to visit our news page, live roundtable meetings and webinars, watch our HealthTree University video curriculum, review our multimedia guides, and join our HealthTree Connect social media platform. These free resources are provided to educate you on the very latest treatment options and help you obtain your best possible myeloma outcomes.

Source:

• The role of patient-driven education in decision-making for relapsed/refractory multiple myeloma.