P-104: Empowering Multiple Myeloma Patients: Impact of MMRF Education Programs and Results Of Patient Outcomes

Introduction: Multiple myeloma is a rare, complex blood cancer. Advances in research over the last 20 years have created numerous treatment options. However, this abundance can make it difficult for patients to stay updated with the latest therapies, especially in community settings. It is essential for patients to be aware of these developments and actively participate in their care to optimize outcomes.

Methods:
The Multiple Myeloma Research Foundation (MMRF) focuses on accelerating novel therapies, driving personalized treatments, and empowering patients. To empower patients, the MMRF developed educational objectives within its programs. A longitudinal survey was created to measure positive behavioral changes based on the following objectives:

• Increasing understanding of standard treatments appropriate to disease stage.


• Enhancing understanding of and inquiry about research and clinical trials.


• Providing tools for self-advocacy and improved communication with care teams.

In 2022 and 2023, 8,053 patients and caregivers participated in MMRF’s educational programs, featuring myeloma specialists and covering topics from diagnosis to remission, presented in patient-friendly formats

Results: In 2022 and 2023, the MMRF distributed quarterly surveys to 7,232 patients and caregivers, yielding a response rate of 16.5% (n=1,200). 84% (n=1,005) reported taking actions towards their care including:

• Active Communication: 75% (n=753) pursued active communication with their healthcare team about treatment options and side effects.


• Confidence & Empowerment: 36% (n=361) felt more confident discussing treatment options with their doctor.


• Informed Decision-Making: 28% (n=289) accessed resources for informed decision-making.


• Engagement in Clinical Trials: 13% (n=129) communicated about, enrolled in, or participated in clinical trials.

A survey limitation was multiple responses from the same individual. 166 respondents completed the survey in 2022 and 2023.

Conclusions: Longitudinal and quarterly assessments are crucial for understanding multiple myeloma patients' needs. The MMRF’s educational programs demonstrate impact, but research is needed to address gaps, including those hindered by barriers. Up to 15% (n=179) of respondents did not take further action due to distance to academic centers, access to a myeloma specialist, or support. Next steps for the MMRF include analyzing patient data to identify patterns across disease stages, attendance, and geography. A gap analysis will compare respondents who did not make positive changes. We also plan to expand support services for patients facing geographic barriers by leveraging our Patient Navigation Center, staffed by three oncology professionals. This center can provide support and knowledge sharing to assist patients in accessing services such as support groups, medical centers, and clinical trials. By conducting a comprehensive data analysis and enhancing services, we aim to empower more patients to take positive actions and ultimately improve their outcomes.