Medical, reproductive and psychosocial experiences of women diagnosed with von Willebrand's disease receiving care in haemophilia treatment centres: a case–control study

Kirtava, A.; Drews, Carolyn; Lally, Cathy; Dilley, Anne; Evatt, Bruce L.

doi:10.1046/j.1365-2516.2003.00756.x

Cited by 157 publications

(179 citation statements)

References 13 publications

(12 reference statements)

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“…These results were concordant with those of previous studies, which demonstrated that a higher number of women with VWD compared with women in the general population perceived limitations in their overall life activities due to menstruation (12,29). Kirtava et al (12) performed a case control study on 62 women with VWD and demonstrated that 23 (32.1%) of these women perceived menstrual bleeding to limit their overall life activities and negatively affect their lives. Among the 70 controls of the study, only 7 women (10.0%) perceived limitations (12).…”

Section: Discussionsupporting

confidence: 90%

“…Kirtava et al (12) performed a case control study on 62 women with VWD and demonstrated that 23 (32.1%) of these women perceived menstrual bleeding to limit their overall life activities and negatively affect their lives. Among the 70 controls of the study, only 7 women (10.0%) perceived limitations (12). A study performed by Rae et al (29) concluded that among 84 women with inherited bleeding disorders and HMB, the majority (77.5%) reported that menstrual bleeding interfered with daily activities.…”

Section: Discussionmentioning

confidence: 99%

“…The questionnaire consisted of 102 questions on 11 themes (Table I) and was originally developed by a research group at the Coagulation Unit at Karolinska University Hospital during an unpublished study on health-associated quality of life in women with HMB. The questions regarding life conditions (questions [1][2][3][4][5][6][7][8][9][10][11][12] are used in clinical practice at the Coagulation Unit, whereas questions 13-17 were constructed by the research group at the Coagulation Unit and assessed the amount of menstrual blood loss, the duration of menstruation and the need for advice on menstruation. Questions 18-29, which examined the perceived impact of menstruation on overall life activities, originate from studies conducted by Ruta et al (23) and Coulter et al (24).…”

Section: Methodsmentioning

confidence: 99%

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Heavy menstrual bleeding and health-associated quality of life in women with von Willebrand's disease

Govorov

Ekelund

Chaireti

et al. 2016

Experimental and Therapeutic Medicine

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Abstract. Women with the inherited bleeding disorder von Willebrand's disease (VWD) face gender-specific hemostatic challenges during menstruation. Heavy menstrual bleeding (HMB) can negatively affect their overall life activities and the health-associated quality of life. The purpose of the present study was to investigate whether women with VWD experienced HMB and an impaired health-associated quality of life. The study subjects were recruited from the Coagulation Unit of Karolinska University Hospital. Information was retrieved from various self-administered forms and medical records. Of the 30 women (18-52 years) that were included in the present study, 50% suffered from HMB, although the majority received treatment for HMB. In addition, almost all the included women perceived limitations in the overall life activities due to menstruation. The health-associated quality of life for women with HMB was significantly lower (P<0.10) with regards to 'bodily pain' compared with Swedish women of the general population. In conclusion, women with VWD experienced reduced health-associated quality of life as a result of HMB. Therefore, preventing limitations in overall life activities and improving their health-associated quality of life thorough counseling on menstrual bleeding is important for women with VWD. IntroductionVon Willebrand's disease (VWD) is the most common inherited bleeding disorder worldwide, with a prevalence varying within 0.1-1% of the general population depending on the method of diagnosis (1-4). The disorder is caused by a quantitative or qualitative deficiency in the von Willebrand factor (VWF). Since VWD is an autosomal inherited disorder, men and women are equally affected. However, more women experience hemostatic challenges through menstrual bleeding and childbirth (5).Heavy menstrual bleeding (HMB), which is defined as >80 ml per menstruation (6), is common in women with VWD. Previous studies have shown that 78-92% of women with VWD suffer from HMB, compared with a 10% prevalence of HMB in all Swedish women of reproductive age (7-9).HMB can be managed through a range of pharmacological treatments, such as contraceptive pills, levonorgestrel-releasing intrauterine systems (LNG-IUS), and tranexamic acid (TA) (10). For women with VWD, treatment with D-arginine vasopressin and VWF/factor VIII concentrates is also an option (11). Despite the availability of extensive pharmacological options, surgical treatment may be necessary (10). Kirtava et al (12) demonstrated that a higher proportion of women with VWD undergo hysterectomy and at a younger age compared with women in the general population.HMB affects numerous aspects of health-associated quality of life, both physical and mental. It can cause iron-deficiency anemia in severe cases, and there are psychological, social and employment consequences associated with HMB (13). Barr et al (14) demonstrated that women with VWD participate less in post-secondary education than the general population, and suggested that this may be due to iron defici...

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Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Heavy menstrual bleeding and health-associated quality of life in women with von Willebrand's disease

Govorov

Ekelund

Chaireti

et al. 2016

Experimental and Therapeutic Medicine

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“…14 The majority (74-95%) of women with known VWD report menorrhagia. [13][14][15][16] Menorrhagia has also been reported in 50-60% of women with rarer factor deficiencies. 14,17 Women with IBDs also suffer from prolonged menstruation.…”

Section: Menorrhagia and Ibdsmentioning

confidence: 99%

“…59,60 Other gynaecological problems A survey of 102 women with VWD showed a higher prevalence of pelvic pathology in women with IBDs compared to controls, including endometriosis (30% vs 13%) endometrial hyperplasia (10% vs 1%), fibroids (32% vs 17%) and endometrial polyps (8% vs 1%). 16 It is doubtful that women with IBDs are more likely to develop these pathologies, but as these conditions often present with bleeding, women with IBDs are more likely to be symptomatic. 35 Further studies are required to assess the prevalence and severity of these gynaecological conditions in women with IBDs.…”

Section: Haemorrhagic Ovarian Cystsmentioning

confidence: 99%

Gynaecological problems and choices for contraception in women with inherited bleeding disorders

Burton¹,

Chi²,

Kadir³

2008

j fam plann reprod health care

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15-20% of cases and is characterised by abnormal structures of VWF that affect interaction between platelets, vessel walls and VWF. Type 3 VWD is the least common but most severe form of the disease. It is an autosomalrecessive disorder characterised by a severe deficiency of VWF and factor VIII.Haemophilia A and B are X-linked IBDs characterised by deficiencies of clotting factor VIII or IX, respectively. Men inherit the condition whilst women are affected as carriers. The incidence of haemophilia A and B in the general population is 1 in 101000 and 1 in 601000, respectively, 6 but the carrier rates in women are unknown. A wide range of factor VIII or IX levels have been reported among carriers of haemophilia, from the upper limit of normal through to very low levels similar to affected males caused by random X-chromosome inactivation (lyonisation). 7 Thus carriers may have an increased bleeding tendency and experience significant bleeding symptoms. In a study by Plug et al. carriers were found to experience more spontaneous and provoked haemorrhage compared to non-carriers in families with haemophilia. 8

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Etiology and Management of Hemorrhage

Burton¹,

Belfort²

2004

Critical Care Obstetrics

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Medical, reproductive and psychosocial experiences of women diagnosed with von Willebrand's disease receiving care in haemophilia treatment centres: a case–control study

Cited by 157 publications

References 13 publications

Heavy menstrual bleeding and health-associated quality of life in women with von Willebrand's disease

Heavy menstrual bleeding and health-associated quality of life in women with von Willebrand's disease

Gynaecological problems and choices for contraception in women with inherited bleeding disorders

Etiology and Management of Hemorrhage

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