404 Background: Multiple myeloma (MM) is an uncommon and complex blood cancer. While treatment advances are promising, drug development is outpacing patients and community providers to stay updated on evolving treatments. Staying informed is critical: when patients understand their disease, they are better equipped to self-advocate and pursue optimal outcomes. Methods: A longitudinal survey was developed to measure behavioral changes after attending a patient education program (online or hybrid). It focused on improving understanding of treatment options, awareness of symptoms and side effects, and consideration of clinical trials. Results: In 2024, 5,500 patients and caregivers participated in MMRF’s educational programs, featuring myeloma specialists and covering topics from diagnosis to relapse. The survey was sent to participants every 3 months post-program. Of 4,581 surveys delivered, the response rate was 14% (n=647) including 576 patients, 52 caregivers, and 19 identifying as “other”. Among patients, 87% (n=506) reported at least one positive behavioral change related to their myeloma care. The following reflects the percentage of all patients reporting changes, some may include overlap: Active Communication, 63% (n=365) reported being better able to discuss current and emerging treatment options with their doctor, leading to informed conversations about therapies for their disease stage. Lab Diagnosis and Interpretation, 50% (n=288) were better equipped to interpret test results and communicate with their doctor. MMRF Resources, 39% (n=223) accessed MMRF tools to make informed decisions about treatment. Treatment Goals & Needs, 26% (n=153) proactively communicated with their care team regarding individual treatment goals. 12% of patients (n=70) reported barriers to change, most commonly citing limited access to a myeloma specialist or academic medical center, and lack of knowledge about disease/treatment options. Conclusions: To address these barriers, the MMRF will implement two analyses. A geospatial analysis will uncover regional patterns among patients with limited access to myeloma specialists or academic centers. By leveraging our CRM, which tracks patient registration, we can identify trends and explore how to expand services – such as utilizing our Patient Navigation Center (PNC) or education to bridge geographic gaps in access. Second, to understand knowledge barriers, we will segment respondents who reported low knowledge or awareness about treatment options and analyze their engagement. This Includes program attendance, interactions with the PNC, and email communications. Insights from both efforts will inform tailored programming for under-engaged audiences. Ultimately, this work strengthens education efforts that meet patients where they are – equipping them with the knowledge and confidence to advocate for themselves throughout their myeloma journey.
Bohórquez et al. (Wed,) studied this question.