Qualitative development of a guide supports symptom management in metastatic breast cancer, highlighting improved patient communication and QoL.
Background: Metastatic breast cancer (MBC) is breast cancer that has spread beyond the breast and regional lymph nodes. For MBC, treatment goals are typically controlling disease progression and maintaining quality of life (QoL). However, disease-related symptoms and treatment-related side effects often impair QoL and may result in decreased treatment adherence. Treatment-related side effects are among the leading reasons patients with MBC discontinue recommended therapy. There is an urgent need for evidence-based tools that inform and empower patients to effectively manage symptoms and treatment-related side effects, optimize their QoL, and facilitate informed patient-provider communication. Methods: We used a qualitative stakeholder-informed approach with literature review and iterative resource creation to identify gaps in patient education, symptom management, and shared decision-making in MBC. This review informed the IRB-approved protocol and discussion guide for semi-structured interviews held with US individuals living with MBC (n=9; from rural and urban areas and diverse racial and ethnic backgrounds (Asian, Black, White—Hispanic and non-Hispanic))and the healthcare providers (HCPs) who treat them (n=4). Interview findings guided the co-creation of a printed symptom management resource, Your Guide to Managing Symptoms from Metastatic Breast Cancer Treatment, focused on the topics participants identified as most needed. The same participants reviewed the Guide for understandability, clarity, and usability. The Guide underwent medical review for accuracy and alignment with clinical guidelines and received endorsement by the Academy of Oncology Nurse & Patient Navigators (AONN+). An online survey was created to track usage and assess satisfaction, behavior change, and reach. Results: Individuals reported struggling with the mental and emotional symptoms of MBC, navigating available support resources, and managing therapy side effects—including fatigue (100%), pain (67%), neutropenia, and digestive issues (100%). Our results underscored the unmet need for a patient-focused educational resource to support symptom management and provider-patient communication. The resulting resource, Your Guide to Managing Symptoms from Metastatic Breast Cancer Treatment, is an accordion-style four-fold printed handout backed by 142 references. Based on interview findings, it focuses on evidence-based whole-person interventions to help manage symptoms and side effects and enhance patients’ QoL. It includes integrative strategies and resources to manage physical, emotional, nutritional, and financial concerns, including managing fatigue, treatment-related side effects, and cost-of-care resources. HCPs described it as "timesaving" and engaging, with one noting, "The fatigue panel should be given to everyone." Patients appreciated its practical actionable tools, stating, “[it's] very empowering, allows people to do something.” Preliminary feedback indicated greater confidence in managing symptoms, increased resource awareness, and greater participation in shared decision-making with HCPs. Patients rated the use likelihood as extremely likely (10/10). Conclusions: Your Guide to Managing Symptoms from Metastatic Breast Cancer Treatment fills key gaps in patient disease state and financial support education, symptom management, and shared decision-making for those living with MBC. By integrating evidence-based co-created content with stakeholder insights, the Guide offers a practical accessible tool for whole-person care. Early feedback suggests it enhances patient confidence, promotes meaningful dialogue with HCPs, and may contribute to improved QoL. Ongoing usage and impact evaluation will inform future resource development and dissemination. Citation Format: L. Medina, V. Barghout, R. L. Best, J. Patten-Coble, T. Buckingham, H. Hammond, C. Hogea. Development of an evidence-based patient guide to support symptom management in individuals with metastatic breast cancer [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2025; 2025 Dec 9-12; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2026;32(4 Suppl):Abstract nr PS1-03-29.
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Medina et al. (2026) studied this question.
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