Understanding Myeloma-Related Information Needs and Communication Preferences Within Black American Communities: An...

Area of Science:

• Hematology
• Oncology
• Public Health

Background:

• Multiple myeloma is a significant blood cancer with complex treatment challenges.
• Black Americans face notable health disparities in myeloma incidence, diagnosis, treatment access, and mortality.
• The Leukemia & Lymphoma Society's Myeloma Link initiative aims to reduce these disparities through targeted education and outreach.

Purpose of the Study:

• To conduct a formative evaluation of the Myeloma Link initiative.
• To understand the information and communication needs of patients, community members, and primary care providers (PCPs) impacted by myeloma.
• To identify preferences for educational materials and support services to reduce health disparities.

Main Methods:

• A qualitative evaluation was performed in 15 U.S. cities implementing Myeloma Link.
• Data collected through interviews with 8 patients and 6 PCPs.
• Two focus groups with 10 community members were conducted.

Main Results:

• Patients desire information on treatment, clinical trials, and peer support from other Black Americans.
• Community members need outreach on myeloma signs/symptoms via trusted organizations; they are largely unaware of the disease.
• PCPs require concise information on diagnosis, treatment, referrals, and improving care, despite time constraints.

Conclusions:

• Outreach initiatives like Myeloma Link are crucial for addressing specific needs of Black Americans affected by myeloma.
• Tailored educational content and support services are essential for patients, communities, and healthcare providers.
• Findings highlight the importance of empowering self-advocacy and providing actionable information to reduce health disparities.