Let's increase the number of myeloma patients in clinical trials to accelerate research!
Have you hesitated when being asked to join a clinical trial? If you answered yes, don't feel bad. Less than 3% of all myeloma patients in the United States enroll in a clinical trial. That means 97% of patients currently decide not to participate.
Unfortunately, the majority of clinical trials conducted in the United States have difficulty in achieving their target enrollment numbers, and several trials remain incomplete to the lack of adequate participation from myeloma patients. More myeloma patients in clinical trials will provide quicker and more accurate drug approval and answer pressing questions within today's myeloma.
So why are myeloma patients hesitant to enroll in these research opportunities? Our HealthTree team set out to discover what patients think of a clinical trial and explore their understanding through research. They worked in collaboration with academic partners from Mayo Clinic.
214 Myeloma friends from 17 countries between 41-84 years old completed a voluntary survey on our HealthTree Cure Hub platform. In the following charts, you can see the demographic data of these participants.
Of all the patients enrolled, 51% were female, and 49% were male. We also inquired about their ethnic background; 7% didn't provide this information, 17% were Hispanic, and 77% were Non-Hispanic. When asked about their educational experience, 94% had a college or higher degree, and 6% had a high school diploma or lesser.
Participants were asked 51 questions judging their understanding of clinical trials and attitudes toward them. When asked how likely it would be that said patient would join a clinical trial, 87% were somewhat or very likely to join, 8% were neutral, and 5% were somewhat or very unlikely to join.
But further investigation showed that those patients who were neutral or unlikely to join had significant misunderstandings about clinical trials.
Some strongly agreed with the statement, “I fear that if I take part in a clinical trial, I won’t have control over what will happen to me,” or “I don’t want to know about clinical trials because it is scary and cumbersome." Others resonated with statements like “Doctors often expose patients to unnecessary risks to make medical advances,” and “I feel uneasy with the possibility that a clinical trial treatment may not work.”
These misunderstandings demonstrate the importance of debunking clinical trial myths. A patient's lack of understanding of how clinical trials operate can affect their willingness to nominate themselves for a clinical trial, thus keeping many from participating in critical myeloma research.
With this in mind, the team concluded that a clinical trial awareness platform administered by the patient's physician could help change patient perspectives on clinical trials and increase enrollment numbers. This platform would address patient uncertainty about clinical trial benefits, debunk common trial myths, and along with the support of family and friends, encourage said patients to participate in clinical trials that were right for them.
What concerns about clinical trials do you have? And what questions can you bring to your doctor to find answers to these concerns?
HOW CAN WE HELP?
If you need assistance finding or joining clinical trials, don't hesitate to get in touch with our Patient Navigator support team at 1-800-709-1113 or at firstname.lastname@example.org
Did you know you can find clinical trials in HealthTree Curehub?
All you have to do is create your free account at healthtree.org, complete your profile and find treatment options (including clinical trials) that meet your specific needs.
about the author
Marilú Nájera Flores
Marilú is an International Medical Graduate who joined HealthTree as part of the Patient Experience team. She assists patients at different stages of the disease, MGUS and Smoldering myeloma, and those facing active myeloma, helping them comprehend and effectively track their test results and overall health history. She is a Disney fan, travel enthusiast, passionate novel reader, cheerful, friendly person, and a good listener who enjoys spending quality time with her family and friends.