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Research Projects Funded in 2006

Haemostatic Changes during Pregnancy in Healthy Women and Women with Inherited Bleeding Disorders Presenting with Menorrhagia

Dr. Christine Demers
2nd year funding
Centre Hospitalier Universitaire Affilié de Québec

Inherited bleeding disorders are associated with a wide spectrum of clinical symptoms depending on the type and the severity of the disease. During pregnancy, the risk of bleeding is generally low in affected women, because the levels of many of the coagulation factors naturally rise over the course of a pregnancy. However, the risk of bleeding can be significant at delivery and after the pregnancy (during the post-partum period), because these levels once again fall to the baseline. In fact, it has been demonstrated that the risk of postpartum hemorrhage is increased to 10 to 25% in women with bleeding disorders compared to less than 1% in the general population. Management is difficult, in part, because there is a lack of information concerning variation of the coagulation factors during pregnancy both in normal women and in women with bleeding disorders.

In this study we are planning to recruit 2 groups of women: 20 normal and 25 with an inherited bleeding disorder. The first objective of this study is to evaluate how the levels of coagulation factors vary over the course of pregnancy in both groups, and also to determine the rate with which these coagulation factors return to the baseline after delivery. Coagulation factors will be measured 3 times during pregnancy, at delivery and 4 times in the 4 weeks postpartum. We will try to co-ordinate this blood testing, whenever possible, with the regular testing of pregnancy

Post-partum bleeding is very difficult to assess and at the present time there is no way of objectively measuring it. However, there is a graphical chart that has been extensively evaluated in women with heavy periods. The second objective of the study is to evaluate if a modified version of the chart is a useful tool to measure post partum bleeding. All women will complete the pictorial chart during the 4 weeks postpartum.

With this study, we hope that a better understanding of coagulation during and after pregnancy will result in a better management of pregnancy for women affected with an inherited bleeding disorders.

Investigation of Clotting Factor Activity Heterogeneity in Severe Hemophilia A

Dr. Man-Chiu Poon and Gary D. Sinclair
2nd year funding
University of Calgary
Calgary, Alberta

Persons with severe hemophilia (clotting factor activity below 1%) tend to bleed frequently and spontaneously into joints, leading to disabling arthritis. The current standard of treatment is regular, preventative factor concentrate infusion. This p6rimary prophylaxis started at an early age improves quality of life but the treatment is intensive; representing a burden to those with hemophilia and their families. It is also expensive. Often, a device is implanted to facilitate infusion and this may be complicated by infection and thrombosis.

Among severely affected individuals, approximately 10-15% have milder than expected bleeding symptoms. It is important to identify these persons so that their treatment can be customized, avoiding unnecessary infusion. We believe that some severe persons have factor VIII in their blood, but below the 1% detectable by routine laboratory methods. Furthermore, in the ongoing Canadian Prophylaxis trial (Dr. Victor Blanchette), some severely affected need only once or twice weekly FVIII infusion – the FVIII levels would be below 1% for a period before the next infusion and yet appear protective.

The focus of this research is to develop a sensitive assay to accurately measure circulating factor VIII levels between 0 and 1%, based on measurement of the activity of the enzyme, thrombin, that develops in proportion to the level of FVIII activity present. Three aspects of hemophilia treatment will then be investigated with participation from clinics across Canada. First, we will measure FVIII activity on 200 severe hemophilia A persons at a time when they have not been treated for 5 days or more (or at diagnosis) to determine if their “baseline” FVIII levels have a bearing on when they had their first spontaneous joint bleeding. We will take into account whether the affected individuals have inherited other mutations thought to promote clotting despite very low FVIII activity. Secondly, for patients in the Canadian Dose Escalation Prophylaxis study (Dr. Blanchette), we will measure the plasma FVIII level prior to their next FVIII injection. This may help discover the minimal FVIII level that will protect against bleeding and hence determine the frequency of FVIII infusions. Lastly, we will investigate (with Dr. Carcao) if the baseline FVIII level of severe hemophilia A persons can be related to how much FVIII is recovered after an injection, and how quickly the recovered FVIII disappears.

In conclusion, this study will assess the minimum level of FVIII below 1% that is still protective to help customize treatment for individuals with severe hemophilia.

Creating Meaningful Messages for Individuals with Mild Hemophilia Through Consultaion: Integrating Grounded Theory and Action Research

JoAnn Nilson, Physiotherapist
1st year funding
Saskatoon, SK

This multi-phased project brings individuals with mild hemophilia and physiotherapists together to create more meaningful educational materials specifically for people with mild hemophilia. The Canadian Physiotherapists in Hemophilia Care (CPHC) have serious concerns about gaps in patients’ understanding of mild hemophilia. Young adults with mild hemophilia are often seen in the emergency room days after a traumatic incident with an uncontrolled bleed which then takes weeks or months to totally resolve. These clinical experiences suggest that the educational materials and strategies currently in use, that target individuals with severe hemophilia, are not effective in providing information that facilitates those with mild hemophilia to seek care in a timely manner.

The purpose of this study is to consult young adults with mild hemophilia, parents of children or adolescents with mild hemophilia and PTs from across Canada in order to identify appropriate communication strategies to be used in educational material about health and healthcare specifically for people with mild hemophilia. In Phase 1 we will focus on the lived experiences of young adults with mild hemophilia from four locations in Canada. Through semi-structured interviews, we will learn about participants’ internal ‘processes’ and choices that they make in accessing medical care after injury, learn about messages, information and knowledge that participants feel would motivate them to seek care in a timely manner. During Phase 2, the knowledge gained in Phase 1 will be used to guide a group of PTs from across Canada . They will identify educational strategies that are grounded both in the experiences and attitudes of individuals with mild hemophilia and in the realities of the health care system. In Phase 3, these strategies will be further refined during focus groups of young adults and PTs and parents of children with mild hemophilia and PTs in both French and English. This phase will also include written or telephone consultation with young adults with mild hemophilia who live in rural settings. Participants from each phase will be invited to continue their involvement in the project through written or verbal feedback after each phase.

This research will help to develop a model that demonstrates a viable way of integrating the perspectives and knowledge of patients and health care professionals in order to create the most meaningful, client centered, realistic educational strategies specifically for persons with mild hemophilia.