The role of haemophilia treatment centres in providing services to women with bleeding disorders

Winikoff, Rochelle; Amesse, Claudine; James, Andra H.; Lee, C.; Pollard, Debra

doi:10.1111/j.1365-2516.2004.01001.x

Cited by 13 publications

(12 citation statements)

References 67 publications

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“…HMB resulted in anaemia and severe fatigue in many cases. The qualitative responses indicate the major impact on QoL experienced by some women with reporting of such statements as “I would have to use a bandage and tampon at the same time and keep a change of clothes at work” or “I would have to plan bathroom times between appointments (at work).” These reports correspond to several other studies which identify HMB leading to anaemia, pain and tiredness, all of which have a significant negative effect on the respondents ability to work and their QoL . These data suggest that major steps have to be taken in the near future to improve treatment of HMB in WBD.…”

Section: Discussionsupporting

confidence: 88%

See 1 more Smart Citation

Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Noone¹,

Skouw-Rasmussen²,

Lavin

et al. 2019

Haemophilia

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Introduction Historically, issues faced by women with bleeding disorders (WBD) have been underestimated. While advances in genetic testing have resulted in improvements, significant challenges remain in the initial recognition of abnormal bleeding and referral of WBD. Methods The European Haemophilia Consortium (EHC) developed a questionnaire for WBD to provide insights into the barriers and challenges faced by WBD in Europe. Results In total, 709 WBD responded to the survey from 32 countries, predominantly from western European countries (94%). A delay in ascertaining the diagnosis of a congenital bleeding disorders (CBD) remains, with a median age at diagnosis of 16 years. The presence of family history is strongly associated with a lower median age at diagnosis of 6 years. WBD reported significant disease impact on their day‐to‐day life, most evident for the rarer CBD. The bleeding symptom of biggest impact on daily life is heavy menstrual bleeding (HMB), reported by 55% of women. Importantly, 25% of WBD reports that their condition severely impacted their decision to have or has prevented them from having children. Respondents registered with Haemophilia Treatment Centres (HTC) are 2.2 times more likely to receive treatment compared to WBD in other hospital services. Conclusion Improved education for both patients and healthcare providers is essential to improve time to diagnosis, access to treatment and psychosocial supports for WBD in Europe.

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Section: Discussionsupporting

confidence: 88%

“…The study offered an insight into the complex experience WBD QoL. 10,11 These data suggest that major steps have to be taken in the near future to improve treatment of HMB in WBD.…”

Section: Discussionmentioning

confidence: 95%

Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Noone¹,

Skouw-Rasmussen²,

Lavin

et al. 2019

Haemophilia

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“…Identifying this subset of women at risk for PPH could prevent morbidity and mortality at the time of delivery by either providing appropriate prophylaxis or being prepared for aggressive intervention in the case of haemorrhage. Further collaboration between obstetricians and haematologists is necessary to provide appropriate care to these patients to reduce the occurrence of PPH and other adverse events [28,29].…”

Section: Discussionmentioning

confidence: 99%

Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres

Byams¹,

Kouides²,

Kulkarni³

et al. 2011

Haemophilia

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SummaryInherited bleeding disorders are especially problematic for affected girls and women due to the monthly occurrence of menstrual periods and the effects on reproductive health. Although heavy menstrual bleeding (HMB) is the most common manifestation, females with inherited bleeding disorders (FBD) experience other bleeding symptoms throughout the lifespan that can lead to increased morbidity and impairment of daily activities.

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“…The mean VWF antigen level in the VWD cohort was 0.52 U mL À1 (SD 0.15 U mL À1 ), and VWF ristocetin cofactor activity in the VWD cohort was 0.38 U mL À1 (SD 0.11 U mL À1 ). The median bleeding score in the study population was 9 (range [3][4][5][6][7][8][9][10][11][12][13][14].…”

Section: Baseline Characteristicsmentioning

confidence: 99%

Malposition and expulsion of the levonorgestrel intrauterine system among women with inherited bleeding disorders

2013

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The levonorgestrel-releasing intrauterine system (LNG-IUS) is indicated for the management of menorrhagia and for contraception. The LNG-IUS is effective at reducing menstrual bleeding and improving haemoglobin among women with bleeding disorders. Expulsion rates for the LNG-IUS among normal women are reported to be approximately 5-10%. The aim of this study was to examine the malposition and expulsion rates of the LNG-IUS among women with inherited bleeding disorders. We conducted a retrospective study of women with an inherited bleeding disorder in Kingston, Canada treated with an LNG-IUS between May 2005 and June 2012. The primary outcome was a combined endpoint of expulsion and/or malposition. Predetermined secondary outcomes were patient satisfaction and changes in haemoglobin and ferritin levels. The median age of the women at the time of LNG-IUS insertion was 31 years (range 18-43, mean 32.1 years). The most common diagnosis was type 1 VWD (12/20, 60%). There were three LNG-IUS expulsions and two episodes of device malposition resulting in removal [5/20 (25.0%), 95% CI 11.2-46.9%]. An additional five women had their device removed prematurely. The overall proportion of devices resulting in discontinuation in this population was 10/20 (50.0%, 95% CI 29.9-70.1%). In this retrospective study, a significant proportion of women with an inherited bleeding disorder had an LGN-IUS removed due to poor patient satisfaction, malposition, or expulsion. Further studies into the causes of higher complication rates and interventions such as premedication or prolonged treatment with antifibrinolytic agents targeted at improving outcomes in this population are required.

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The role of haemophilia treatment centres in providing services to women with bleeding disorders

Cited by 13 publications

References 67 publications

Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres

Malposition and expulsion of the levonorgestrel intrauterine system among women with inherited bleeding disorders

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