Prevalence, burden and treatment effects of vaginal bleeding in women with (suspected) congenital platelet disorders throughout life: a cross-sectional study
Punt, Marieke C; Ruigrok, Nienke D; Bloemenkamp, Kitty W M; Uitslager, Nanda; Urbanus, Rolf T; Groot, Evelyn; Kremer Hovinga, Idske C L; Schutgens, Roger E G; van Galen, Karin P M; T rombocytopathy in the Netherlands (TiN) Study Group
(2022) British Journal of Haematology, volume 196, issue 1, pp. 215 - 223
(Article)
Abstract
Congenital platelet disorders (CPDs) are rare bleeding disorders that are associated with mucocutaneous bleeds. However, data on vaginal bleeding in women with CPDs are scarce. A set of generic and bleeding-specific questionnaires were used to evaluate the prevalence of vaginal bleeding, its impact on quality of life (QoL) and sexual
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functioning and the consequences for pregnancy, miscarriage and delivery in a cohort of women who were referred for diagnostic evaluation for CPDs. A total of 78 women included in the study were either diagnosed with a CPD (n = 35) or were clinically suspected of a CPD (n = 43). Heavy menstrual bleeding (HMB) was reported by a large proportion of women, which mainly started at menarche. In all, 76% of women received any kind of HMB treatment, often leading to surgical prodecures. HMB was shown to have a high impact on QoL, which improved upon treatment. Even though women reported that vaginal bleeding affects sexuality, this topic is not frequently discussed with physicians. Heavy blood loss frequently occurred after miscarriage/delivery, often requiring treatment. Women with (suspected) CPDs frequently encounter HMB, negatively impacting daily life and sexual functioning. Together with peripartum bleeding, these data highlight the burden of vaginal bleeding in CPDs and importance of adequate treatment.
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Keywords: blood coagulation disorders, inherited, menstruation, quality of life, sexual health, uterine haemorrhage, Hematology, Journal Article
ISSN: 0007-1048
Publisher: Wiley-Blackwell
Note: Funding Information: M. C. Punt, N. D. Ruigrok, R. T. Urbanus, I. C. L. Kremer Hovinga, E. Groot, K. W. M. Bloemenkamp: none, N. Uitslager: received a research grant from Sobi, speakers fee from and consultancy for Bayer, R. E. G. Schutgens: received research grants from Bayer, CSL Behring, Pfizer, NovoNordisk, Sanquin, Shire and Sobi, consultancy for Bayer, NovoNordisk and Shire and speakers fee from Freeline, Boehringer Ingelheim, Roche and Sobi. K. P. M. van Galen: received unrestricted research grants from CSL Behring and Bayer in the past and speakers fee from Takeda and Amgen. Publisher Copyright: © 2021 The Authors. British Journal of Haematology published by British Society for Haematology and John Wiley & Sons Ltd.
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