ArticleArchives of public health = Archives belges de sante publique2024
Advocate-BREAST: advocates and patients' advice to enhance breast cancer care delivery, patient experience and patient centered research by 2025.
Article in Archives of public health = Archives belges de sante publique, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- A Randomized Controlled Trial: eHealth Interventions for Self-Management and Psychological Coping in Cancer Patients.Healthcare (Basel, Switzerland) · 2026Article
- An Examination of Strategies to Improve Access to Medical Nutrition Therapy among Cancer Patients in the United States: A Narrative Review and a Call to Action.Current nutrition reports · 2025Review
- Regional differences in experiences of patients with metastatic breast cancer in the Republic of Ireland and Northern Ireland: a comparative analysis (CTRIAL-IE 23-05).BMJ open quality · 2025Article
- Associations Among Self-Advocacy, Patient-Centered Communication, Pain Intensity, and Opioid Stigma in Older Adult Female Breast Cancer Survivors.Oncology nursing forum · 2025Article
- The Johns Hopkins Hope at Hopkins Clinic: supporting the comprehensive needs of individuals with metastatic breast cancer.Breast cancer research and treatment · 2025Article
- Article
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Authors and funding
9 authors.
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Abstract
purposeThe aims of the Advocate-BREAST project are to study and improve the breast cancer (BC) patient experience through education and patient-centered research.
methodsIn December 2021, an electronic REDCap survey was circulated to 6,918 BC survivors (stage 0-4) enrolled in the Mayo Clinic Breast Disease Registry. The questionnaire asked about satisfaction with BC care delivery, and education and support receive(d) regarding BC linked concerns. Patients also ranked Quality Improvement (QI) proposals.
resultsThe survey received 2,437 responses. 18% had Ductal Carcinoma in Situ, 81% had early breast cancer (EBC), i.e. stage 1-3, and 2% had metastatic breast cancer (MBC). Mean age was 64 (SD 11.8), and mean time since diagnosis was 93 months (SD 70.2). 69.3% of patients received all care at Mayo Clinic. The overall experience of care was good (> 90%). The main severe symptoms recalled in year 1 were alopecia, eyebrow/eyelash thinning, hot flashes, sexual dysfunction, and cognitive issues. The main concerns recalled were fear of BC recurrence/spread; loved ones coping; fear of dying, and emotional health. Patients were most dissatisfied with information regarding sexual dysfunction, eyebrow/eyelash thinning, peripheral neuropathy, and on side effects of immunotherapy/targeted therapies. Top ranking QI projects were: i) Lifetime access to concise educational resources; ii) Holistic support programs for MBC and iii) Wellness Programs for EBC and MBC.
conclusionsPatients with early and advanced BC desire psychological support, concise educational resources, and holistic care. IMPLICATIONS: Focused research and QI initiatives in these areas will improve the BC patient experience.
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