Understanding myeloma-related information needs and communication preferences within black American communities

Abstract

Myeloma is the third most common blood cancer and one of the most complex and expensive cancers to treat. Black Americans face health disparities related to myeloma incidence, age at diagnosis, access to novel treatments, and mortality. To help reduce health disparities among Black Americans through education and outreach, The Leukemia & Lymphoma Society has implemented its Myeloma Link initiative. In 2022, a formative, qualitative evaluation was conducted across the 15 U.S. cities that implemented Myeloma Link to better understand the information and communication needs and preferences of three groups: patients, community members, and primary care providers (PCPs). Data collection included interviews with eight patients, two focus groups with a total of ten community members, and interviews with six PCPs. Patients expressed wanting information about treatment experiences, including clinical trials, and emotional and peer support services, particularly from other Black American patients. Community members were largely unfamiliar with myeloma and desired outreach via trusted community organizations about disease signs and symptoms. Both groups discussed the importance of self-advocacy within the current healthcare system and wanted actionable messaging, rather than messaging leading with disparities statistics. PCPs described systemic capacity and time challenges in the context of needing to address more frequently encountered health conditions; nonetheless, PCPs welcomed information and brief trainings about myeloma diagnosis and treatment options, referrals to specialists, and how to improve care, prognosis, and caregiver support. Findings underscore the importance of outreach initiatives such as Myeloma Link to help meet these needs and reduce health disparities.