Evaluation of the self‐administered bleeding assessment tool (Self‐<scp>BAT</scp>) in haemophilia carriers and correlations with quality of life

Young, Jane; Grabell, Julie; Tuttle, Angie; Bowman, Mackenzie; Hopman, Wilma M.; Good, David; Rydz, Natalia; Mahlangu, Johnny; James, Paula D.

doi:10.1111/hae.13354

Cited by 20 publications

(35 citation statements)

References 12 publications

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“…[2][3][4] A number of studies have clearly demonstrated increased bleeding tendency in haemophilia carriers compared to controls, with cutaneous bleeding, heavy menstrual bleeding and excessive/prolonged bleeding after invasive procedures and childbirth being the most common. [2][3][4] However, unlike von Willebrand Disease (VWD), there are no and factor levels was demonstrated in three studies [3][4][5] ; however, all studies reporting on bleeding symptoms in carriers identified heavy menstrual bleeding, bleeding following surgery/dental procedures and bleeding with childbirth as significantly higher compared to controls, including carriers with normal factor levels. [2][3][4][5] Although all these studied had clearly defined study population of genetically-confirmed or obligate carriers, there is still heterogeneity in terms of symptom prevalence and average/median factor levels among the studies.…”

Section: Introductionmentioning

confidence: 99%

Bleeding assessment in haemophilia carriers—High rates of bleeding after surgical abortion and intrauterine device placement: A multicentre study in China

Fang²,

et al. 2019

Haemophilia

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Introduction: An increased bleeding tendency has been shown in female haemophilia carriers compared to healthy females. Bleeding assessment tools (BATs) have mainly been performed in western cultures. It is unclear how they perform in populations with different healthcare, health/wellness concepts and awareness, as well as family planning practices. Aim: To (a) describe and compare the bleeding symptoms in carriers with healthy females, particularly for bleeding after surgical abortion and intrauterine device (IUD) placement which are performed frequently for family planning in China; (b) quantify scores of International Society on Thrombosis and Haemostasis Bleeding Assessment Tool (ISTH-BAT) and Chinese-BAT (C-BAT) developed to include surgical abortion and IUD placement as separate categories in Chinese haemophilia carriers;(c) correlate bleeding scores (BS) with factor levels. Methods:We conducted a multicentre, cross-sectional study on obligate haemophilia carriers and healthy controls using ISTH-BAT and C-BAT. Results:We enrolled 125 haemophilia carriers and 106 controls. Carriers, compared to controls, had significantly higher median BS (3 vs 1 by both ISTH-BAT and C-BAT) and lower factor level (63.5 vs 101.8 IU/dL). Bleeding after surgical abortion and IUD placement was significantly associated with carrier status. Bleeding scores from neither ISTH-BAT nor C-BAT showed significant correlation with factor levels. Conclusion: Haemophilia carriers in China experienced abnormal bleeding. Uniqueto the Chinese carriers is significant bleeding after surgical abortion (3rd highest incidence of bleeding symptom) and IUD placement (4th highest). However, both ISTH-BAT and C-BAT exhibited no correlation between BS and factor levels in this population and neither could identify carriers with low factor level (of <50 IU/dL).

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Section: Introductionmentioning

confidence: 99%

Bleeding assessment in haemophilia carriers—High rates of bleeding after surgical abortion and intrauterine device placement: A multicentre study in China

Fang²,

et al. 2019

Haemophilia

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“…Von Willebrand disease (VWD) is the most common inherited bleeding disorder, affects approximately 0.1% to 1% of the population, and is characterized by excessive mucosal bleeding . Hemophilia A and B are X‐linked disorders affecting heterozygous males and homozygous females . Females that are heterozygous for the mutation, historically referred to as hemophilia carriers, experience a variable phenotype ranging from asymptomatic to excessive bleeding .…”

Section: Introductionmentioning

confidence: 99%

“…8 Females that are heterozygous for the mutation, historically referred to as hemophilia carriers, experience a variable phenotype ranging from asymptomatic to excessive bleeding. 8 Inherited platelet disorders encompass a variety of quantitative and qualitative platelet abnormalities. 9 Factor XI deficiency is a rare autosomal recessive disorder affecting 1 in 1 million individuals.…”

Section: Introductionmentioning

confidence: 99%

The experience of postpartum bleeding in women with inherited bleeding disorders

VanderMeulen

Petrucci

Meffe

et al. 2019

Research and Practice in Thrombosis and Haemostasis

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IntroductionPostpartum hemorrhage (PPH) affects 6% of all deliveries and is the leading cause of maternal death worldwide (19.7%). The incidence of PPH in women with inherited bleeding disorders is substantially greater than in unaffected women; however, estimates of relative risk are highly variable. To date, their experience with postpartum bleeding has not been well studied.ObjectiveWe set out to explore the experience with, understanding of, and attitudes regarding postpartum bleeding among women with inherited bleeding disorders.MethodsThis qualitative study involved focused interviews of women with inherited bleeding disorders about postpartum bleeding. Women followed at a multidisciplinary clinic for women with inherited bleeding disorders who have experienced childbirth within the last 5 years were included in the study. The interview style was semistructured. Interviews continued until the point of saturation of themes. All interviews were transcribed and then analyzed using qualitative descriptive analysis.ResultsWe interviewed 10 women with inherited bleeding disorders. Themes that emerged were normalization of excessive vaginal bleeding, difficulty distinguishing normal from abnormal postpartum bleeding, and empowerment of women by having a clear delivery care plan.ConclusionIn this study, women with inherited bleeding disorders were desensitized to heavy vaginal blood loss. As a result, excessive postpartum bleeding was not recognized by many of the women we interviewed. Results highlight the importance of a multidisciplinary delivery care plan for these women. Findings revealed key areas for targeted multidisciplinary intervention.

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“…More recently, a patient self-administered bleeding assessment tool (Self-BAT) has been validated as an effective screening tool for type 1 VWD and haemophilia carriership. 12,13 As implied, the utility of current BATs lies in their suggestion of a mild inherited bleeding disorder as they cannot effectively describe bleeding in severe disorders due to score saturation. Mild bleeding disorders include VWD, platelet function disorders and mild coagulation factor deficiencies (e.g haemophilia carriership).…”

Section: Thismentioning

confidence: 99%

“…While BATs have a documented track record as effective screening tools for bleeding disorders, most require expert (e.g nurse or physician) administration. More recently, a patient self‐administered bleeding assessment tool (Self‐BAT) has been validated as an effective screening tool for type 1 VWD and haemophilia carriership …”

mentioning

confidence: 99%

Haemophilia commentary: The utility of BATs

Sholzberg

2018

Haemophilia

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Evaluation of the self‐administered bleeding assessment tool (Self‐BAT) in haemophilia carriers and correlations with quality of life

Cited by 20 publications

References 12 publications

Bleeding assessment in haemophilia carriers—High rates of bleeding after surgical abortion and intrauterine device placement: A multicentre study in China

Bleeding assessment in haemophilia carriers—High rates of bleeding after surgical abortion and intrauterine device placement: A multicentre study in China

The experience of postpartum bleeding in women with inherited bleeding disorders

Haemophilia commentary: The utility of BATs

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