The Experience and Needs of Myeloma Patients: Exploring Race and Ethnicity

Importance: Race and ethnicity are critical factors that influence healthcare equity for cancer patients and need to be studied.Objective: This study explores how race and ethnicity influence patients living with multiple myeloma (MM), an incurable blood cancer.Design: Four hundred and thirty-five patients diagnosed with smoldering or active MM completed an online survey.Measure: The survey consisted of questions related to MM diagnosis, patient needs at diagnosis and later in treatment, and interest in coaching with an experienced MM patient/caregiver.Results: Results revealed differences among Black, White, and MHL (Mexican, Hispanic, and Latino/a) patients.Black patients, in this study, had a higher genetic risk for MM compared to White and MHL patients.However, these differences did not reach statistical significance.Black patients were also the least likely to be seeing a MM specialist.Similarities regarding needs at diagnosis included treatment options, life expectancy, and basic information about MM.All participants across identities reported an interest in clinical trials.Black patients more frequently reported wanting to know how to cope with anxiety and fear.Black patients also more frequently expressed interest in receiving one-on-one patient centered coaching than White and MHL patients.MHL patients were the least interested in coaching.Conclusion: There are differences and similarities across racial and ethnic identities, and a clear need for more outreach to Black patients with MM who have higher risk diagnoses; less care from MM specialists; and are interested in coaching, clinical trials, and receiving support.