Current gynaecological management of women and girls with bleeding disorders in the United Kingdom: A UKHCDO haemophilia treatment centre survey and evaluation of real-world clinical practice for the British Journal of Haematology

Authors: Knox, L; Swart-Rimmer, I; Rahimi, N; Harris, C; Abdalla, L; Benson, G; Brown, C; Campbell, H; Carvalhosa, A; Clarke, JT; Garside, S; Lentaigne, C; Mistry, J; Raheja, P; Warren, C; Abdul-Kadir, R; Lowe, G; Curry, N

Affiliations: Department of Haematology, Glasgow Royal Infirmary, Glasgow, UK. Department of Haematology, University Hospitals, Birmingham, UK. Oxford Haemophilia & Thrombosis Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK. Sheffield Haemophilia Comprehensive Care Centre, Sheffield NHS Foundation Trust, Sheffield, UK. Northern Ireland Haemophilia Comprehensive Care Centre & Thrombosis Unit, Belfast City Hospital, Belfast, UK. Department of Haematology, The Christie NHS Foundation Trust, Manchester, UK. Patient Partner of the UKHCDO Girls and Women’s Bleeding Disorders Group, Manchester, UK. Southampton Haemophilia Comprehensive Care Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK. Department of O&G, University Hospitals, Birmingham, UK. Leeds Children’s Hospital and The North and West Yorkshire Haemophilia Network, Leeds, UK. Department of Haematology, University Hospitals Plymouth NHS Trust, Plymouth, UK. Adult Comprehensive Care Haemophilia Unit, Queen Elizabeth Hospital, Edgbaston, Birmingham, UK. Department of Cardiovascular Sciences, University of Birmingham, Edgbaston, UK. The Royal London Hospital Haemophilia Comprehensive Care Centre, The Royal London Hospital, London, UK. Cardiff Haemophilia Centre and Bleeding Disorders Network Wales, University Hospital of Wales, Cardiff, UK. Department of O&G and Katharine Dormandy Haemophilia and Thrombosis Centre, The Royal Free NHS Trust and Institute for Women’s Health, UCL, London, UK. Radcliffe Department of Medicine, Oxford University, Oxford, UK.

Publication: British Journal of Haematology; 2025

ABSTRACT: Girls and women with bleeding disorders (GWBD) comprise more than half of all registered patients with bleeding disorders in the UK National Haemophilia Database. The gynaecological care of GWBD, until recently, has not been prioritized despite high health burdens, where four of every five patients experience heavy menstrual bleeding (HMB). We report the results of a national survey exploring gynaecological health-care services offered across haemophilia centers in the United Kingdom, with a focus on HMB. We combine these results with a retrospective cohort analysis of individual patient care records, across a 3-year period. Of 65 haemophilia centers, 41 responded, covering 90% of the UK GWBD population. Six hundred and ninety-seven individual patient care records were included, from 13 centers. Our results show that immediate clinical care offered to GWBD experiencing HMB is adequate, despite infrastructure deficiencies (such as lack of joint-gynaecology input and few centers having named clinical leads for GWBD). We recommend several areas for immediate prioritization within haemophilia centers which will improve the equity of care for GWBD. These include direct access to gynecological services; universal testing of iron status; and more broadly, a shift towards clinical practices that recognize and address the impact HMB has on patients’ psycho-social, sexual and overall quality of life.