Everyday issues in women with bleeding disorders

Abstract

Men and women with bleeding disorders have similar symptoms but their experiences are different. It has been shown that women with a bleeding disorder rate their quality of life on a par with that of men with haemophilia who have HIV. Many factors determine quality of life, ranging from delay in diagnosis, to access to treatment and support from family and friends. Women should ask themselves what is important to them and recognise the barriers that determine whether they can achieve their aims in life. Quality of life instruments do not measure the impact of these disorders in a way that is specific to women. Psychosocial health – i.e. the mental, emotional, social, and spiritual aspects of what it means to be healthy – can have a major impact on quality of life. Women with bleeding disorders face a number of challenges to their psychosocial health. They struggle to be believed, they live with guilt, and they may have to fight for the best care for their children. They face obstacles to building relationships and their experiences can leave them isolated. Perhaps because of this, women with bleeding disorders are strong – but they also need to be encouraged to make time for themselves and look after their mental health.

If the inline PDF is not rendering correctly, you can download the PDF file here.

  • 1. Rand Health Care. 36-Item Short Forum Survey (SF-36). Available from https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form.html (accessed 28 June 2019).

  • 2. EuroQol. EQ-5D instruments. Available from https://euroqol.org/eq-5d-instruments/ (accessed 28 June 2019).

  • 3. Barr RD, Sek J, Horsman J, et al. Health status and health-related quality of life associated with von Willebrand disease. Am J Hematol 2003; 73: 108-14. doi: 10.1002/ajh.10237.

  • 4. Kirtava A, Crudder S, Dilley A, Lally C, Evatt B. Trends in clinical management of women with von Willebrand disease: a survey of 75 women enrolled in haemophilia treatment centres in the United States. Haemophilia 2004; 10: 158–61.

  • 5. Noone D, Skouw-Rasmussen N, Lavin M, et al. Barriers and challenges faced by women with congenital bleeding disorders in Europe: results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia 2019; 25: 468–74. doi: 10.1111/hae.13722.

OPEN ACCESS

Journal + Issues

Search