Our Partners

Research Projects Funded in 2007

Creating meaningful messages for individuals with mild hemophilia

JoAnn K. Nilson, PT
Saskatchewan Bleeding Disorders Program - Saskatoon, Saskatchewan
Second year funding

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.

The prevalence of symptomatic pediatric VWD

Dr. Paula James, FRCPC
Assistant Professor
Queen’s University - Kingston, Ontario
First year funding

Von Willebrand disease (VWD) is an inherited bleeding disorder that causes bleeding from mucous membranes (ie: nosebleeds, bleeding gums and heavy menstrual periods) and easy bruising. Diagnosing the condition can be very difficult, particularly in children. Although bruises and nosebleeds are common among children with VWD, very young children may not have had a chance to manifest other characteristic bleeding symptoms, such as heavy menstrual periods or bleeding after surgery. To compound this, it is often difficult for patients to recognize whether certain symptoms are normal or abnormal and most of the attempts to address this by creating standardized bleeding questionnaires have been focused on the adult population.

In the current study, we propose to address the issue of the symptomatic prevalence of VWD in children by investigating children who have symptoms of bleeding or bruising for VWD. Additionally, we propose to validate a commonly used (modified) adult bleeding questionnaire in children during the course of this study. We will accomplish this by screening between 10,000 and 15,000 children attending a pediatric outpatient centre for bleeding or bruising symptoms. Those that report a problem with bleeding or bruising symptoms will be further evaluated using a bleeding questionnaire. Children with positive bleeding scores will then be investigated with VWF laboratory studies. The bleeding questionnaire will also be administered to a group of ~300 normal children to allow for the validation of the questionnaire. This study will be carried out by investigators who have recently completed a complementary study, performed primarily on adults, evaluating the prevalence of VWD at the level of primary care.

Non-steroidal anti-inflammatory drugs and menorrhagia revisited

Dr. Rochelle Winikoff, FRCP
Staff hematologist
CHU Sainte-Justine - Montreal, Quebec
First year funding

Menorrhagia is a common clinical problem to which there is no standard medical treatment approach. It is estimated that about 30% of women complain of menorrhagia and it is the main presenting complaint in women referred to gynecologists. Non-steroidal anti-inflammatory drugs (NSAIDS), which non-specifically inhibit cyclooxygenase (COX), are effective in approximately 50 to 60% of women with menorrhagia, with reductions in menstrual blood loss (MBL) of the order of 30 to 40%. Clinical studies have shown that NSAIDs are more effective in women who have higher baseline MBL. A subset of women with menorrhagia have increased MBL related to overproduction of prostacyclin (PGI2) and increased local uterine vasodilatation, which may be targeted by NSAID therapy.

Among women with menorrhagia, those who produce higher baseline levels of PGI2 are more likely to have a better response to non-specific COX inhibition by NSAIDS than women who secrete lower levels. The variability and degree of response to NSAIDS observed in the literature may, at least in part, depend on the baseline levels of PGI2 production in women with menorrhagia. Other clinical factors such as age, weight, parity and dysmenorrhea may also predict a favourable response to NSAID therapy. The main objective of this study is to identify clinical predictors of response to NSAID therapy in women with menorrhagia. We will also determine if higher baseline levels of PGI2 in women with menorrhagia correlate with their clinical response to COX inhibition by NSAIDS.

Consecutive women between the ages of 18 and 40 with primary menorrhagia will be treated with an NSAID for two consecutive menstrual periods and the MBL will be recorded using the Pictorial Blood Assessment Chart (PBAC). Recruitment for this study will take place over 18 months. Potential clinical predictors of response to NSAIDS will be collected. Baseline levels of PGI2 urinary metabolites will be measured in all eligible women. Logistic regression will be used to assess various clinical variables and PGI2 as a predictor of significant response to NSAID therapy. A significant response will be defined as a >= 30% decrease in PBAC score. The average baseline PBAC score will be compared with an average of 2 post-treatment PBAC scores.

The results of this study should help clinicians identify women for whom NSAID therapy should be considered upfront to treat menorrhagia. Clinical indices including baseline PGI2 measurements could be a part of the initial clinical evaluation for menorrhagia and could help distinguish between women with menorrhagia who are likely to respond to treatment with NSAIDS and those who are not, in whom alternative therapies may be more beneficial. A similar treatment strategy could eventually be applied to women with menorrhagia related to bleeding disorders