Women with inherited bleeding disorders – Challenges and strategies for improved care

Women with inherited bleeding disorders (IBDs) experience significant challenges in their health, personal and reproductive lives. Heavy menstrual bleeding (HMB), general bleeding symptoms, iron deficiency and excessive bleeding during miscarriage, pregnancy and delivery are all common complications for women with IBDs. Symptoms may present in childhood or adolescence, often with significant delays to definitive diagnosis and appropriate treatment due to lack of recognition of the prevalence and impact of IBDs in women. This can greatly reduce the quality of life of affected girls and women with school and work absence, social embarrassment and self-consciousness being highly prevalent. The impact of being affected by or being a carrier of a genetic disorder can also cause significant psychological distress for women and their partners embarking on a pregnancy. Increased awareness and better understanding of causes and approach for diagnosis of gynaecological bleeding have improved the identification of women who require further haemostatic testing, however many women remain un-diagnosed and un-treated. Education and training of care givers and multi-disciplinary approach are crucial to enable collaborative, patient-centred care including management of bleeding symptoms, haemostatic planning in advance of surgery, pregnancy and delivery and individualised genetics counselling for couples on their reproductive options. This review discusses the current challenges in the care of women with IBDs and strategies to improve their recognition and diagnosis, clinical management and overall quality of life. •Despite recent advances, IBDs continue to have a significant impact on the lives of women and their families worldwide.•Improved management of gynaecological and obstetric complications, minimising the risks of ID/IDA and support to improve QOL are all crucial areas, which require improvements.•As IBDs are relatively uncommon, good quality data are lacking hence multi-centre studies and international registries are imperative to gather meaningful data to formulate evidence based clinical guidelines