Researchers discovered that many of the experiences described by women with bleeding disorders from 2 decades ago remain prevalent today, as published in Haemophilia.

Women with hemophilia, a bleeding disorder, are often labeled as hemophilia “carriers.” While this is medically accurate, this description can invite dismissive attitudes from healthcare professionals. One reason for this is the historical misconception that hemophilia only affects males. Therefore, Khair and colleagues sought to carry out a study to investigate the lived experiences of women with bleeding disorders through an online survey.

Women who were considered hemophilia carriers or who have been diagnosed with other bleeding disorders, such as idiopathic thrombocytopenic purpura, were invited to participate. For girls under the age of 16 years, their parents or carers completed the survey on their behalf. The survey was conducted between June and August 2020.


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The survey sent to the women with bleeding disorders consisted of questions that touched on personal demographics, family history of bleeding, personal bleeding history, impact on quality of life, diagnostic pathway, understanding of the genetics of their condition, and a free text box in which they can fill in anything they deemed were missed out in the survey.

Participants of the survey who were willing to be interviewed either were invited to speak about their experiences in a focus group or in one-to-one interviews conducted between August and September 2020. A total of 218 women completed the survey; among them, 11 participated in a focus group and 2 had individual interviews.

The results demonstrated that the most frequent complaints were heavy periods (81%) and bruising (81%). Women with bleeding disorders reported having to take time off work or education and having discussions with healthcare professionals about their symptoms. In-person discussions revealed challenges at institutional, societal, and personal levels.

“This study shows that many of the experience’s women described 20 years ago remain prevalent and that healthcare provision needs to change to offer better treatment and support to women in the bleeding disorder community,” Khair et al concluded.

Reference

Khair K, Pollard D, Steadman L, Jenner K, Chaplin S. The views of women with bleeding disorders: results from the Cinderella study. Haemophilia. Published online February 13, 2022. doi:10.1111/hae.14514