Women and girls with heavy menstrual bleeding and inherited bleeding disorders: A call to action for the Haemophilia Treatment Centre Nurse

Abstract

Over the last several decades, the increasing focus on women with inherited bleeding disorders (WBD) has brought more patients into Haemophilia Treatment Centres (HTC) around the world. These women present with unique challenges including a significant risk of heavy menstrual bleeding (HMB). The influx of a new patient group has necessitated expansion of the services provided by the multi‐disciplinary team in HTCs. Nurses already play a central role in patient and family education within the HTC. As such, they are well positioned to participate in the development of adaptations within the HTC infrastructure to provide clinical care and education specifically for WBD. The nursing experts in HTCs should play an active role in outreach as well as providing education to WBD. Despite this supposition, review of the growing body of literature surrounding the topic of WBD is notable for a paucity of literature highlighting the role of the HTC nurse and potential impact on this, relatively new, but steadily increasing, patient population.

Women and girls with inherited bleeding disorders: Focus on haemophilia carriers and heavy menstrual bleeding

“…It is not uncommon for patients with IBD to feel that their HMB is ‘no worse’ than perhaps their mother's or their sibling's and therefore is viewed as nothing ‘out of the ordinary’ 38 . Education, both for the affected individual and her family members, of what is viewed as a normal volume of menstrual blood loss is therefore vital to empower young women to both recognize that they may have HMB and to allow them to openly discuss their experiences of HMB.…”

The role of the specialist nurse in comprehensive care for bleeding disorders in Europe: An integrative review

“…Nurses teach the parents/caregivers about their child's condition, treatment and potential complications 24 ; educating on home treatment and management is a core role for paediatric HN. 17, [25][26][27] Nurses also address bleeding issues specific to women and girls, such as heavy menstrual bleeding, 28 providing education around the menstrual cycle, iron deficiency and measuring blood loss, using appropriate language adjusted to the patient's age and culture. 29 HN ensure that PwBD are aware of the benefits of regular treatment for their future wellbeing.…”

Gynaecological management of women with inherited bleeding disorders. A UK Haemophilia Centres Doctors' Organisation Guideline

“…Haemophilia nurses can provide support to patients in schools and other community settings and is encouraged. 68 Good practice includes patients receiving letters about their own healthcare, empowering patients to ask for help when it is most needed and offering patient initiated follow up.…”

“…This should include education about what is normal menstruation and when to seek advice, supported by written information on how to self‐assess. Haemophilia nurses can provide support to patients in schools and other community settings and is encouraged 68 . Good practice includes patients receiving letters about their own healthcare, empowering patients to ask for help when it is most needed and offering patient initiated follow up.…”