A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23-05).

Introduction: Although treatment advances have improved survival rates for patients with metastatic breast cancer (MBC), patient expressed needs have not been evaluated in Ireland to date.
Methods: A 76 item questionnaire was designed by the lead author and a cohort of 41 other MBC patients in collaboration with a multidisciplinary team. The online survey was publicised nationally on all media platforms.
Results: 246 patients completed the survey between July and October 2023. Most patients were satisfied with the manner of disclosure of their diagnosis but 77 % wanted more prognostic information. Disparate information sources were used to provide support. Only 35 % of patients had access to their records, yet 99 % of patients without access desired to have it. The majority (83 %) of patients were amenable to earlier palliative care referral. The symptom burden of respondents was high, 87 % experienced mental health issues and 68 % of those with menopausal symptoms were dissatisfied with the support. These burdens were compounded by financial stress with 20 % of patient unable to meet monthly expenses and by time toxicity with 25 % attending emergency departments in the previous 6 months.
Conclusion: Currently the needs of MBC patients in Ireland and Northern Ireland have many unmet needs. The routine early provision of palliative care, psycho-oncology, medical social worker and dedicated liaison nurse supports guided by national guidelines and education for healthcare professionals, integrated with living well with cancer clinics and a dedicated medically verified website would provide an ecosystem where MBC care could be optimised for patients and their families.
Competing Interests: Delaration of competing interest None relevant to this project.
(Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)