Understanding Shared Decision-Making in Relapsed/Refractory Myeloma

Are decisions about the next myeloma treatment typically chosen solely by the doctor, or decided collaboratively through a discussion between the patient and physician? 

The majority of people with myeloma will experience relapse over time and require additional or new therapies to keep their myeloma in check. 

A study conducted through the HealthTree Cure Hub Registry wanted to better understand how people with relapsed and refractory myeloma make these life-saving decisions. 

A total of 294 people with relapsed/refractory multiple myeloma were included in the study, with a mean age of 66 years. Among respondents, 53% were female, and 49% had graduate-level education. Individuals were asked about their first therapy change decision and then their most recent therapy change decision. 

Who Influences Treatment Decisions?

Study participants reported consulting a variety of individuals when making treatment decisions. The most influential figures ranked as somewhat to extremely influential were:

• Myeloma specialist: 84%
• Community hematologist/oncologist: 69%
• Spouse, partner, or significant other: 56%
• Nurses, physician assistants (PAs), and registered nurse assistants (RNAs): 67% consulted, with 49% finding them somewhat to extremely influential
• Other people with myeloma: 50% 
• Second opinions from a myeloma specialist: 34% 

How Are Decisions Made?

Study participants described a collaborative approach in decision-making where the doctor makes recommendations, the person with myeloma asked questions and preferences were discussed. Following this collaborative approach: 

• The patient and doctor make the decision together (37%)
• The patient makes the final decision (21%)
• The patient follows the doctor’s suggestion (14%)

Importantly, there was a weak but positive correlation between patient involvement in decision-making and satisfaction with their treatment choice (r = 0.251, p < 0.001).

Treatment Choices

Among the surveyed participants:

• 51% followed their care team’s recommendations without changes
• 31% made significant alterations to the proposed treatment plan
• 19% selected a modified version of the recommendation
• 59% reported making the final decision themselves, while 40% indicated their doctor made the final decision, and 1% noted a caregiver or partner made the decision

Increased Involvement, Increased Satisfaction

The study showed that about half of participants actively engage in the treatment decision-making process. This involvement led to higher satisfaction with their treatment choices. Individuals relied heavily on the expertise of their myeloma specialists and care providers and their closest personal relationships when making decisions, but also discussed options with their myeloma peers. 

With many available treatment options and drug combination therapies, people with relapsed/refractory myeloma must navigate a complex set of options when choosing their next line of therapy. HealthTree Cure Hub Registry members may be more proactive participants in their care compared to the average myeloma patient, but the study highlights the importance of being an educated patient in making shared decisions for care. 

Empowering Decision-Making With Data

Because each myeloma treatment decision is so critical to a person’s ultimate outcome, HealthTree Foundation is committed to providing both patients and providers with the tools and data they need to make these essential decisions. 

Because each myeloma treatment decision is so critical to a person’s ultimate outcome, HealthTree Foundation is committed to providing both patients and providers with the tools and data they need to make these essential decisions. You can help improve outcomes by joining Cure Hub and completing simple surveys about your treatments and experiences.

Join HealthTree Cure Hub