Self-expressed needs and gaps in our care of metastatic breast cancer (MBC): An all-Ireland patient-led online survey (CTRIAL-IE 23-05).

Abstract

12058 Background: Therapeutic advances have improved MBC survival rates, but patient self-expressed information needs have not been evaluated in Ireland to date. Heretofore, the patient’s voice has not been central to such an assessment, potentially leading to incorrect assumptions about MBC care. Methods: An anonymous online survey was designed by a cohort of 30 patients with MBC facilitated by a multidisciplinary breast cancer specialist taskforce. A questionnaire asked individuals to report their experience across three domains: credible information sources, palliative care access, and mental health. Patients with MBC 18 years or older living on the Island of Ireland were eligible to participate. The survey was publicised in the media and in oncology clinics nationally and was available for 10 weeks. The survey consisted of a mixture of open and closed questions and results were summarized by means of counts and percentages for categorical variables and by means of mean, standard deviation, median and range for continuous variables. Results: Between July-October 2023, 246 patients completed the survey. The median age of responders was 52.5. 99.4% of patients wished to have access to their personal medical records. Over 95% sought information about metastatic breast cancer outside of the clinic. The go-to information source varied (mostly online). No dedicated comprehensive information source on MBC was identified. Over 83% of patients with MBC were amenable to early palliative care referral but oncology teams did not raise this to the majority. Over 87% of patients reported mental health issues and the majority did seek support (88.4%). Living with uncertainty while awaiting scan results commonly led to feelings of anxiousness (79.5%), fearfulness (54.1%) and depression (15.2%). Conclusions: Patient-led research demonstrates that the patients’ voice is imperative to identify meaningful health interventions. System change including rapid streamlined access to personal medical records and the provision of a credible online information source dedicated to MBC may empower patients to enable them to live well for as long as possible. Routine discussion around early palliative care referral and an opt out approach may be of benefit. Acknowledging the high burden of mental health issues among this patient group and ongoing development of support services is crucial. Minimising the time patients live with uncertainty waiting for scan results should be prioritised.