Abstract PS9-16: Long-term personal, social and financial impact of advanced breast cancer: Results from the invisible woman 2.0, a pan-European patient and carer survey
Authors: Donatella ONA Decise, Victoria ICT Harmer, Mariana ARI Musaian, Dawn AWN Aubel, Fatima ATI Cardoso
Journal: Cancer Research (2021)

Abstract Background. There is currently no cure for advanced breast cancer (ABC) and patients living with the disease are faced with many challenges influencing their ability to work and carry out daily tasks. ABC also imposes significant direct and indirect costs to the society. Healthcare systems vary considerably across Europe in equal high-quality care for all, with discrepancies in clinical outcomes and access for patients. A European patient and carer survey (The Invisible Woman) in 2013 showed that many women with ABC in Europe were suffering with psychological, social and financial hardships. A replication of the survey (2.0) was performed in 2019 to assess the progress made since 2013 and the work that still needed to be done. Methods. A cross-sectional survey via computer-assisted web interviews was conducted in eight countries (Italy, Spain, France, Sweden, Poland, Belgium, the Netherlands, Israel), involving 98 participants, 36% of whom were patients (n=35) and the rest carers (n=63). All patients were female with Stage IIIB-IV breast cancer and were fully aware of their condition. Results. The mean age of patients was 45 (range 18−69) years, 77% of whom were married or in a relationship and 82% with children. In 2019, 60% of women saw their household income drop as a result of their illness. 74% (vs 50% in 2013, n=304) of women had to make changes to their employment; 26% (vs 17% in 2013) were earning less than 11,778 € a year. The reduction in income led to 55% (vs 24% in 2013) of women having difficulty contributing financially and 69% (vs 38% in 2013) having to spend less. Furthermore, 69% of women admitted the change in their financial situation had caused psychological or physical problems, compared with 39% in 2013. The percentage of women who felt they had become isolated from the early-stage breast cancer community almost doubled from 18% in 2013 to 33% in 2019; 27% felt they received less support than when they were first diagnosed with breast cancer, a sharp increase from 15% in 2013. Findings on the emotional and physical impact of ABC in 2019 were largely comparable to those in 2013, with around 60% of women experiencing anxiety, depression, pain and discomfort which interfered with daily life; however, the proportion of women who lost confidence increased from 37% in 2013 to 58% in 2019. Similar to 2013, quality of life, followed by access to the treatment, was identified as the greatest unmet need. Information provision also requires improvement, with only 39% of participants finding the information provided by healthcare professionals useful, compared with 71% in 2013.Conclusions. The Invisible Woman 2.0 (2019) confirms the findings of the previous survey in 2013, and highlights that, despite several actions have been put in place for six years, several unmet needs remain unaddressed. ABC has a profound personal, societal and economic impact on patients and carers. The survey highlights the worsened practical financial situations of women with ABC and the need for improved workplace policies, as well as the impact on quality of life and a continued lack of provision of information and support. It is paramount that all relevant stakeholders work together to optimise the care of women with ABC and that the initiatives created are given more visibility and made known to patients and carers. Citation Format: Donatella ONA Decise, Victoria ICT Harmer, Mariana ARI Musaian, Dawn AWN Aubel, Fatima ATI Cardoso. Long-term personal, social and financial impact of advanced breast cancer: Results from the invisible woman 2.0, a pan-European patient and carer survey [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS9-16.