European principles of care for women and girls with inherited bleeding disorders

Abstract

Introduction Despite increasing awareness of issues faced by women and girls with inherited BDs (WGBD), standards of care are lacking, with disparities in diagnosis and treatment for WGBD across Europe. We aimed to develop practical principles of care (PoC) to promote standardization of care for WGBD within European Haemophilia Treatment and Comprehensive Care Centres (HTC/CCCs). Methods The co‐creation process, supported by the European Association for Haemophilia and Allied Disorders, consisted of four multidisciplinary meetings with health care providers (HCPs) experienced in WGBD care, and European Haemophilia Consortium representatives, combined with broad patient and HCP consultations in the European haemophilia community. Relevant medical societies outside Europe were contacted for confirmation. Results We developed ten PoC for WGBD, stressing the importance and benefits of a centralized, multidisciplinary, comprehensive, family‐centred approach to support and manage WGBD during all life stages. These PoC emphasise the right to equitable access and quality of care for all people with BDs, irrespective of gender. Multiple medical societies outside Europe also confirmed their support for endorsement. Conclusions Ten PoC for WGBD evolved from an iterative process among stakeholders, supported by relevant medical societies worldwide. These PoC can serve as a benchmark for diagnosis and comprehensive multidisciplinary management of WGBD, and improve awareness of their unique challenges. They offer a framework to guide HTC/CCCs in providing equitable care for all WGBD, both in their own services and in other healthcare settings. Implementation of these principles aims to positively impact the health, wellbeing and quality of life for WGBD.

Health issues in women and girls affected by haemophilia with a focus on nomenclature, heavy menstrual bleeding, and musculoskeletal issues

“…In homozygotes or hemizygotes, hemostatic testing should be performed at birth, if possible via an umbilical cord blood sample. Timely assessment of the baseline factor level apart from genetic evaluation is critical to diagnose and prevent unnecessary bleeding 15 . Since FVIII is an acute phase reactant, repeat testing at a steady health state should be encouraged.…”

Examining international practices in the management of pregnant women with von Willebrand disease

“…37 Through providing a unified approach to the diagnosis of PPH it is hoped that both identification and management can be improved for pregnant women with VWD. 37,38 Finally, despite advances in hemophilia therapeutics internationally, global product availability for the treatment of VWD remains a challenge. Despite a broadening choice of VWF replacement therapies with the introduction of rVWF, 4.7% of respondents still report access only to cryoprecipitate or fresh frozen plasma for peripartum prophylaxis.…”

The views of women with bleeding disorders: Results from the Cinderella study

“…There is a need for specialist services which focus primarily on female bleeding issues and include adolescent and adult specialist gynaecology. 8 Some themes were identified in two but not all three groups; these were approximately evenly divided and revealed no consistent trend towards different experiences according to diagnosis. All groups discussed the impact of living with their disorder, dealing with lack of awareness, and uncertainty, stress and anxiety.…”

“…This requires further investigation as, if true, it may indicate a need to reconsider information discussed, and how and which HCPs continue to engage with affected women. There is a need for specialist services which focus primarily on female bleeding issues and include adolescent and adult specialist gynaecology 8 …”