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BACKGROUND: Learning about a new multiple myeloma (MM) or smoldering MM (SMM) diagnosis is an important but difficult first step of a cancer journey. However, the education process can be overwhelming, especially within ethnic minorities and the medically underserved. Moreover, recent studies suggest that too much information may lead to confusion, frustration, and could negatively impact the decision-making process. Therefore, the primary purpose of this survey was to capture the common questions and concerns of MM and SMM patients when they were newly diagnosed and since diagnosis within the Mexican, Hispanic and Latino ethnicities and compare their responses to non-Hispanic or Latino ethnicities. METHODS: We utilized HealthTree® Cure Hub and invited patients with MM or SMM to participate in an online survey consisting of selecting from a list of 20 topics of what their questions were at diagnosis and since diagnosis. RESULTS: Of the 36 myeloma patients identified as Mexican, Hispanic or Latino 86% had MM and 14% had SMM, 95% were diagnosed before 2019, 91% saw a specialist, 66±8 years, 53% female, 56% retired, 31% reported currently working, and 97% had health insurance. The non-Hispanic or Latino group consisted of 248 patients, 78% with MM and 26% with SMM, 81% were diagnosed before 2021, 78% saw a specialist, 65±8 years, 58% female, 52% retired, 29% reported currently working and 98% had health insurance. The top 5 questions at diagnosis were identical between groups: What are the myeloma treatment options?, What is my life expectancy?, What is myeloma?, What can I expect during treatment?, and Can myeloma be treated? However, since diagnosis the top 5 concerns changed and a key divergence between groups occurred. Importantly, the top new concern for both groups was, Is a clinical trial right for me?, and both groups added the question: What side effects would I experience? The two groups did differ, the non-Hispanic group added one additional question: What can I do to prevent further spread of the disease? While, in contrast, the Mexican, Hispanic and Latino group added two questions, within a similar domain, which was not previously observed: Should I consider a second opinion?, and Does my doctor have sufficient experience? DISCUSSION & CONCLUSION: These results identified major concerns of MM and SMM patients at and since diagnosis and this study documents critical ethnicity divergence that occurs as patients become more experienced with managing their myeloma. Interestingly, both ethnicities shared the same top 5 concerns at diagnosis and had some similarities of new concerns since diagnosis. However, the Mexicans, Hispanics, and Latinos reported new concerns that involved questioning their doctors’ competence and the desire of a second medical opinion for medical decisions. In conclusion, although ethnic groups largely have similar questions and concerns at and since diagnosis, Mexican, Hispanics and Latinos express interest in assuring they are being treated by experienced doctors and highly value second medical opinions. Citation Format: Jay R. Hydren, Nathan W. Sweeney, David F. Barton, Jorge Arturo Hurtado Martinez, Jennifer M. Ahlstrom. What are the top myeloma patient concerns at and since diagnosis of Mexicans, Hispanics and Latinos? [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A004. |
