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Abstract Background Most patients with early breast cancer receive multimodality therapy, including surgery, chemotherapy, radiotherapy and endocrine therapy. Currently, not all patients benefit from the treatments they receive but many experience significant morbidities that substantially impact their quality of life. Personalised approaches to treatment offer the opportunity for patients to avoid treatments that do not offer oncological benefit without compromising breast cancer outcomes. Further studies are needed to evaluate these approaches; it is vital that future research is designed to optimise treatment benefit while remaining acceptable to patients. This survey aimed to understand experiences of patients who have received treatment for early breast cancer to inform future risk-adapted studies. Methods An online survey was co-developed with patient advocates to explore respondents’ experiences of treatments. Questions included simple demographics, treatments received and views about omitting therapies if it was safe to do so. Free-text boxes were provided for respondents to explain their decision. The survey was circulated via social media platforms from April-July 2023. Responses were summarised using simple descriptive statistics and free text was analysed thematically. Results 112 responses were received. Respondents were mostly aged 40-60 (n=88, 72.7%) and diagnosed with breast cancer between 1995 - 2023 (median 2017). Treatments received included surgery (n=107, 95.5%), radiotherapy (n=85, 75.9%), chemotherapy (n=69, 61.6%) and endocrine therapy (n=82, 73.2%). Of the 106 (94.6%) respondents who expressed a preference, 38 (35.8%) would omit chemotherapy; 34 (32.1%) would choose not to have endocrine therapy; 19 (17.9%) would prefer to avoid surgery and 11 (10.4%) would omit radiotherapy if safe to do so. Respondents opting to avoid chemotherapy highlighted the ‘brutal’ short-term side effects and their profound impact on their ability to continue with their daily lives. Hair loss was a common concern and chemotherapy was considered ‘very visible’, making them a ‘cancer patient’ in the eyes of others. Long-term effects of treatment such as peripheral neuropathy had lasting effects on respondents’ activities of daily living. Almost all respondents who would omit endocrine therapy cited the profound impact of side effects including joint/muscle pains, fatigue, hair loss, sleep disturbance and loss of libido on quality of life. Some respondents commented that the treatment itself was a daily reminder of their diagnosis. Surgery was identified as having long-term impacts on respondents’ physical and psychological well-being. Many expressed a desire to avoid ‘disfiguring’ procedures which had affected their relationships and quality of life. Respondents highlighted specific procedures they would choose to avoid including mastectomy due to the ‘trauma’ of losing a breast and axillary node clearance due to complications such as lymphoedema. Fewer women chose to avoid radiotherapy. Reasons to do so included both short and long-term side effects of treatment including chronic pain, difficulties travelling and attending for treatment over 5 weeks. Although there was generally a positive response to the concept of reducing unnecessary treatments, safety was a key concern. Several respondents commented that they would have any treatments considered necessary as survival was their ‘absolute priority’. Respondents felt that patients would need to be reassured that any reduction in treatment would not impact long-term outcomes. Conclusions This survey suggests patients would support studies aiming to reduce the burden of breast cancer treatment, and that different patients may wish to de-escalate different components of therapy. Studies developing an evidence base to allow treatment personalisation with a particular emphasis on reducing chemotherapy and endocrine therapy are research priorities. Citation Format: Shelley Potter, Mhairi MacTier, Katherine Fairhurst, Jacqui Gath, Hilary Stobart, Stuart McIntosh. Understanding patient experiences to inform future studies to reduce treatment burden in breast cancer abstract. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-26-06.
Potter et al. (Thu,) studied this question.