Heavy menstrual bleeding remains burdensome for women with VWD

Women with von Willebrand disease (VWD) still experienced a high burden of heavy menstrual bleeding despite commonly using first-line therapies such as tranexamic acid and hormonal treatments.

That’s according to a study in Canada that assessed the rates of prophylaxis, or preventive treatment, for heavy menstrual bleeding, and factors associated with such treatment.

“Future studies are needed to further understand barriers to prophylaxis from patients and clinicians’ perspective, and develop shared decision-making recommendations on prophylaxis for women with [heavy menstrual bleeding],” the scientists wrote.

The results were described in a letter to the editor, “Rate of Prophylaxis for Heavy Menstrual Bleeding Management in Women With von Willebrand Disease,” published in Haemophilia.

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Heavy bleeding can affect women with VWD

VWD is a bleeding disorder caused by low levels or reduced activity of von Willebrand factor (VWF), a protein that helps with blood clotting. As a result, the body may not properly form blood clots, leading to symptoms such as prolonged bleeding and heavy menstrual bleeding.

Prophylaxis, or preventive treatment, may involve routine use of desmopressin or VWF concentrates during menstrual cycles to reduce heavy bleeding. VWF concentrates may reduce severe or frequent heavy menstrual bleeding, improve quality of life, and reduce healthcare use. However, there are limited data on the management of menstrual bleeding in women with VWD.

To learn more, the researchers conducted a retrospective analysis of adult women with VWD and heavy menstrual bleeding who were followed at the Northern Alberta Bleeding Disorders Program, in Canada, between January 2000 and July 2023.

The study included 145 women, with a median age of 41 years. They had been diagnosed with VWD at a median age of 27. Most women were diagnosed with VWD type 1, which is characterized by lower-than-normal VWF levels.

Most of these women (77%) experienced heavy menstrual bleeding — defined as bleeding for more than seven days, changing protection more than every two hours, flooding, or the presence of large clots — before VWD diagnosis. Almost half had severe heavy menstrual bleeding, requiring emergency department visits, hospitalizations, blood transfusions, or surgical procedures.

The most common therapies included tranexamic acid (77%), combined oral contraceptives (48%), and the levonorgestrel intrauterine device (27%). About one-third of women (32%) received preventive treatment with desmopressin and/or VWF concentrates. Specifically, 28% received desmopressin prophylaxis and 8% received VWF prophylaxis.

“Our findings are promising in the utilization of long-term prophylaxis for [heavy menstrual bleeding],” the researchers wrote.

Preventive treatment linked with severe bleeding

Women who received prophylaxis were more likely to be treated with tranexamic acid (93% vs. 70%) and to receive iron infusions (43% vs. 19%). They also were less likely to have been diagnosed after 2010 (39% vs. 55%) than those who did not receive preventive treatment.

“Contrary to our hypothesis, an older time period of VWD diagnosis was associated with higher rates of prophylaxis,” the team wrote. “It is plausible that women who lived with VWD for longer and failed numerous lines of therapy were more willing to consider prophylaxis compared to those within first decade of diagnosis.”

There were no significant differences between the two groups regarding age at diagnosis, VWF activity, bleeding severity, or desmopressin response.

Further analysis showed that desmopressin prophylaxis and the time from first bleeding symptoms to VWD diagnosis were significantly associated with severe menstrual bleeding. Women who received desmopressin prophylaxis had 2.4 times higher odds of severe menstrual bleeding, while each additional year between first bleeding symptoms and VWD diagnosis was associated with 4% higher odds.

The desmopressin finding may reflect that women with more severe bleeding were more likely to receive preventive treatment. There also was a nonsignificant trend toward lower odds of severe menstrual bleeding among women diagnosed in 2000 or later, compared with those diagnosed earlier.

According to the researchers, this study shows “that despite wide use of first-line therapies such as [tranexamic acid] and hormonal agents, women continue to experience unmet needs in optimization of [heavy menstrual bleeding].”