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

Abstract

Summary: 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 prioritised 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 centres 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 centres, 41 responded, covering 90% of the UK GWBD population. Six hundred and ninety‐seven individual patient care records were included, from 13 centres. 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 centres having named clinical leads for GWBD). We recommend several areas for immediate prioritisation within haemophilia centres which will improve the equity of care for GWBD. These include direct access to gynaecological services; universal testing of iron status; and more broadly, a shift towards clinical practices that recognise and address the impact HMB has on patients' psycho‐social, sexual and overall quality of life