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Women-specific Bleeding in Inherited Platelet Function Defects: A Cross-sectional Study

M.C. Punt1, N.D. Ruigrok1, K.W.M. Bloemenkamp2, R. Urbanus1, I.C.L. Kremer Hovinga1, R.E.G. Schutgens1, K.P.M. van Galen1, TIN study group

1Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, Utrecht, Netherlands, 2Department of Obstetrics, Birth Centre Wilhelmina’s Children Hospital, Division Woman and Baby, Utrecht University, Utrecht, Netherlands

Abstract Number: OC 62.1

Meeting: ISTH 2021 Congress

Theme: Women Health » Pregnancy and Pregnancy Complications

Background: Inherited Platelet Function Disorders (IPFD) comprise a heterogeneous group of rare bleeding disorders. Data on the prevalence and impact of women specific bleeding in this group are currently lacking.

Aims: To evaluate heavy menstrual bleeding (HMB), sexual functioning and postpartum hemorrhage (PPH) in women with IPFD.

Methods: Female participants of the ‘Thrombocytopathy in the Netherlands’ study with a confirmed IPFD were invited. Assessments included the ISTH-BAT, the Menorrhagia Multi-Attribute Scale (MMAS) and treatment data, the SHAW questionnaire on daily life impact of HMB, the Revised Female Sexual Distress Scale on sexual functioning and self-reported PPH.

Results: Fifty women (median age 39.5 years) were included. Median ISTH-BAT score was 10.5 (Interquartile range: 7-16). HMB was reported by 88% (44/50) of women, which started in 77% (34/44) at menarche. Seventy-seven percent (34/44) of these women received treatment for HMB. Twenty-one women were treated with tranexamic acid, five had platelet transfusions and two received desmopressin. Surgical treatment was required in 25% (13/44) of women: 6 hysterectomies, 4 endometrium ablations and 1 curettage. The MMAS demonstrated that 44% (15/34) of women initially suffered from severe practical problems in daily life due to HMB. This decreased to 9% (3/34) with HMB treatment. Severe problems experienced at work (18%, 6/34) and in social functioning (6%, 2/34) completely resolved with treatment. Sexual distress was reported by 44% of women (22/50) with menstruation influencing sexual functioning in 50% (25/50). Bleeding during intercourse was frequently or always experienced by 30% (15/50) of women. Thirty-five women reported 83 deliveries (69 vaginal deliveries, 14 caesarean sections), of whom 51% (18/35) experienced PPH in at least one delivery.

Conclusions: Women with IPFD frequently encounter PPH en HMB with negative impact on daily life and sexual functioning when untreated. These data highlight the burden of women specific bleeding in IPFD and importance of adequate treatment.

To cite this abstract in AMA style:

Punt MC, Ruigrok ND, Bloemenkamp KWM, Urbanus R, Kremer Hovinga ICL, Schutgens REG, van Galen KPM, TIN study group . Women-specific Bleeding in Inherited Platelet Function Defects: A Cross-sectional Study [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/women-specific-bleeding-in-inherited-platelet-function-defects-a-cross-sectional-study/. Accessed September 27, 2023.

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