Abstract

e21592 Background: From The Health of Women (HOW) Study™, we found that participants living with metastatic breast cancer (MBC) had a considerably diminished quality of life (QoL) compared to those with less advanced breast cancer. When faced with MBC, managing and minimizing collateral damage (CD) resulting from sequential and often continuous treatments is crucial to improving QoL. The aim of the MBCCD Project was to characterize the unique experience of MBC in order to identify and address potential areas of need in this underserved population. Methods: We crowdsourced input and gathered free-text data from 353 MBC patients to document the breadth of CD affecting QoL. We then developed a new questionnaire using validated QoL scales and PROMIS measures, along with a novel assessment of Living with MBC derived from the crowdsourcing data, which, in some cases, included verbatim statements from patients. Results: Among the 515 MBC respondents, the median age was 57 years (28-86 years), and the majority was female (99%) and non-Hispanic White (91%). Patients retrospectively reported a significant decline in overall QoL after MBC diagnosis (Before MBC: 51% excellent and1% poor/extremely poor; After MBC diagnosis: 12% excellent and15% poor/extremely poor; p < 0.05). As expected, considerable CD was reported in every aspect of the patients’ lives—physical, social, financial and psychological. MBC patients who were younger ( < 50 years), had lower financial status, and/or reported having children under the age of 18 years living at home were identified as being at highest risk of significant CD in every category (p < 0.05). Contrary to common belief in the clinical setting, CD did not vary as a function of treatment type or metastatic location. Conclusions: Findings illustrate the need for dynamic and personalized strategies targeting CD to improve the health and well-being of MBC patients. Within each area of CD, critical needs and subsets of patients at highest risk were identified. Next steps include increasing diversity and working with MBC advocates and provider-survivor collaborators to develop recommendations that maximize benefit to MBC patients while remaining feasible for providers.

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