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.