Key points are not available for this paper at this time.
Therapeutic advances have improved MBC survival rates but patient expressed communication needs have not been evaluated in Ireland to date. Heretofore, the patient's voice has not been central to such an assessment, compromising MBC care. An anonymous online survey in 9 domains was designed by a cohort of 30 MBC patients facilitated by a multidisciplinary group. Patients with MBC ≥ 18 years living on the Island of Ireland were eligible to participate. The survey consisted of a mixture of open and closed questions and results were summarized by counts and percentages for categorical variables and by mean, standard deviation, median and range for continuous variables. Between July-October 2023, 246 patients completed the survey. The median age was 52.5. 79% report receiving their initial MBC diagnosis by a consultant with 59% reporting a family member with them. For 63% this discussion occurred in a clinic room, with 12% receiving this news by phone. The majority (74%) felt that adequate time was taken for this discussion. Over 77% are interested in finding out more about their prognosis. Of these, 50% already know their prognosis and this information was received equally from their medical team or by researching themselves. 27% of patients want to know more about their prognosis but have not received any information. Of those that already know their prognosis, 40% felt the optimal time to discuss prognosis was at diagnosis, with 22% preferring to discuss in the weeks to 3 months following diagnosis. On discussing prognosis, 64% preferred the opportunity to have someone with them, 58% preferred to be asked if this was something that they wished to know and 43% preferred to be notified in advance that their prognosis would be discussed. Over 49% of patients would like advice on how to speak with close family and friends regarding their diagnosis and prognosis. The majority of patients are satisfied with the manner of disclosure of MBC and want to know their prognosis. Guided by the patient voice, potential practice changing findings include changing to an opt-out disclosure model for prognosis, curated information sources about MBC and advice on informing family / community members.
Weadick et al. (Wed,) studied this question.