Abstract Number: LPB0045
Meeting: ISTH 2021 Congress
Background: Despite increasing awareness of the issues faced by women and girls with inherited bleeding disorders (WGBD) standards of care are lacking, with disparities in access to diagnosis and treatment for WGBD across the world.
Aims: To define generalizable principles of care (PoC) in an iterative process, involving relevant stakeholders, with the eventual goal to optimize diagnosis and management for WGBD.
Methods: Supported by the European Association for Haemophilia and Allied Disorders and following four multidisciplinary meetings of 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, practical PoC were formulated to promote standardization of care for WGBD within Haemophilia Treatment/Comprehensive Care Centres (HTCs).
Results: Ten PoC for WGBD were developed (Table 1) which stress the importance and benefits of a centralized, multidisciplinary, comprehensive, family-centred approach to support and manage WGBD at all life stages. These principles emphasise the right to equitable access and quality of care for all people with bleeding disorders, irrespective of gender.
| 1 | Equitable access and quality of care for all individuals with bleeding disorders, irrespective of gender |
| 2 | Timely and accurate diagnosis of bleeding disorders in women and girls |
| 3 | Awareness of the additional challenges faced by WGBD throughout life |
| 4 | Provision of comprehensive care in a family centred approach |
| 5 | Inclusion of a dedicated obstetrician and gynaecologist in the multidisciplinary team |
| 6 | Education of WGBD and their families regarding the menstrual cycle and management |
| 7 | Early recognition and optimal management of heavy menstrual bleeding |
| 8 | Provision of pre-conception counselling and access to prenatal diagnostics |
| 9 | Provision of a patient-centred comprehensive management plan throughout pregnancy and the post-partum period |
| 10 | Involvement of WGBD in registries, clinical research and innovation |
10 Principles of Care for Women and Girls with inherited bleeding disorders
Conclusions: Ten PoC for WGBD were defined after an iterative process among appropriate stakeholders in Europe. They can serve as a benchmark for diagnosis and comprehensive multidisciplinary management of WGBD, and improve awareness of their unique challenges. They provide a framework to guide HTCs in providing equitable care for all WGBD, both in their own services and other healthcare settings. Implementation of and adherence to these principles is expected to positively impact the health, wellbeing and quality of life for WGBD.
To cite this abstract in AMA style:
van Galen K, Lavin M, Skouw-Rasmussen N, Noone D, Pollard D, Khair K, Gomez K, Fischer K, van Loon E, Bagot C, Elfvinge P, D’Oiron R, Kadir R. Principles of Care for Women and Girls with Inherited Bleeding Disorders [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/principles-of-care-for-women-and-girls-with-inherited-bleeding-disorders/. Accessed September 29, 2023.« Back to ISTH 2021 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/principles-of-care-for-women-and-girls-with-inherited-bleeding-disorders/