“Let’s talk about sex, fertility and menopause”: The Irish experience for those diagnosed with metastatic breast cancer (MBC)—An all-Ireland patient-led survey (CTRIAL-IE 23-05).
Authors: O'Meara Yvonne , Gaynor Siobhan , Mulvaney Emer , Duane Frances K , Weadick Catherine , Greally Helen , Keogh Rachel J , O'Leary Mary Jane , McBrien Ann , Mulroe Eibhlin , Teiserskyte Ieva , Beristain Isabel , Marron Jacinta , McLoughlin Sarah , Donachie Victoria , O'Reilly Seamus 
Published: June 2024

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Background: Therapeutic advances have improved MBC survival rates, but patient expressed needs such as sexual wellness have not been evaluated in Ireland to date. Heretofore, the patient’s voice has not been central to such an assessment, compromising 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: sexual wellness, fertility and menopause. 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 summarised 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 was 52.5 and 98% of responders were female. Over 75% of patients were not offered advice or support on the effects of MBC and the side effects of treatment on sexual wellness. This is despite over 60% of patients experiencing changes in their sex lives, with only 22.8% of those seeking medical advice. Those who did not seek advice stated fear of being dismissed or misunderstood (26.9%) and being uncomfortable discussing the topic (44.4%) as their reasoning. Less than half of patients < 50 years considered that sufficient information was provided on the impact of treatment on fertility. Over 95% of patients were menopausal or experienced permanent changes to their menstrual cycle but 29.3% of patients who sought support reported that they did not receive it. Participants who did not seek support, were asked what supports could have been provided (Table). Conclusions: Patient-led research demonstrates that the patients’ voice is imperative to identify meaningful health interventions. MBC impacts sexual wellness for the majority of patients, a minority of whom seek medical advice, and a majority of whom are uncomfortable discussing the topic. The majority of participants <50 years felt oncofertility advice was insufficient, suggesting that improvements are needed in the information and support given to younger cancer patients regarding their fertility. Support with menopausal symptoms was commonly sought but resources were limited. The majority of patients would welcome availability of a complex menopause clinic and access to improved curated information resources on sexual wellness and fertility. [Table: see text]