The Cinderella Study: women's lived experience of bleeding disorders – CSL Behring Symposium

Abstract

Abstract Many of the experiences described by women 20 years ago remain prevalent today, and healthcare provision needs to change to offer better treatment and support to women in the bleeding disorder community. These were the key findings of the recently published Cinderella study, which explored the lived experience of women who bleed due to a diagnosed bleeding disorder in order to improve understanding of their unmet needs. Following a systematic literature review to establish what previous research had been carried out in women with bleeding disorders, the Cinderella study undertook an online survey and in-depth discussions (focus groups and one-to-one interviews) to further explore the lived experiences of women haemophilia carriers (WHC), women with a diagnosed bleeding disorder (WBD) and women with immune thrombocytopenia (WITP). The study demonstrated the significant impact of bleeding disorders on the daily lives of survey respondents and the challenges of accessing specialist support, particularly for WHCs. Themes discussed included difficulty obtaining a diagnosis, lack of awareness amongst and poor communication from HCPs, stress and anxiety, coping strategies and sources of support.