Abstract

Abstract Background: Monoclonal gammopathy of undetermined significance (MGUS) is a prevalent, yet incidentally diagnosed precursor to multiple myeloma. We sought to gather foundational knowledge about the experiences of patients and healthcare providers during the process of diagnosing MGUS. Methods: We conducted semi-structured qualitative interviews. We recruited 14 patients using ResearchMatch and Facebook, and eight local healthcare providers. Interviews were analyzed using thematic analysis. Results: We identified three themes focused on the process of receiving or giving an MGUS diagnosis, relating to: (1) providers' explanations, (2) patients' understanding, and (3) the response to diagnosis. Providers reported that they explained MGUS using similar language for all patients, regardless of literacy level or other factors. Providers also indicated the challenges of explaining MGUS to non-English speaking patients using an interpreter. Although all patients were able to offer some description of MGUS in their own words, several patients reported they really did not understand what this diagnosis means. Providers acknowledged that an MGUS diagnosis may lead some patients to experience anxiety. Providers also reported that the referral to a hematologist-oncologist could be inherently stressful for some patients and make them worried about having cancer. Patients reported varied responses to receiving an MGUS diagnosis ranging from relief to anxiety about MGUS progression to multiple myeloma. Conclusion: We observed that providers tend to use consistent language when explaining an MGUS diagnosis to patients. Patients diagnosed with MGUS have a basic understanding of their condition, yet some patients feel anxiety around the diagnosis, which may affect other aspects of their lives. For underserved populations, providers may need to use interpreters to ensure all patients understand their condition. These findings are an important first step in understanding patients' experiences as they are diagnosed with MGUS. Citation Format: Maira A. Castaneda-Avila, Kathleen M. Mazor, Kate Lapane, Mara M. Epstein. Patient and provider experiences with an incidentally diagnosed cancer precursor: A qualitative study [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-239.

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