The Canadian Hemophilia Society – Baxalta Inherited Bleeding Disorders Fellowship Program for Nurses and Allied Health Care Professionals was created to engage hemophilia program professionals/graduate students from the disciplines of nursing, physiotherapy, social work and other related allied health disciplines in research focused on improving services and quality of life for people and families whose lives are affected by bleeding disorders.
The fellowship was made possible thanks to the generous financial support from Baxalta. Baxalta Canada Corporation, now part of Shire, was a global biopharmaceutical leader advancing innovative therapies in hematology, immunology and oncology. The CHS is proud to have been be in a partnership with Baxalta in order to offer this important fellowship program.
In 2016, the program was replaced with the Canadian Hemophilia Society – Shire Fellowship.
Physiotherapy and point of care ultrasonography for the assessment and management of acute muscle bleeding in patients with hemophilia A and B
McMaster Children’s Hospital, Hamilton (ON)
Sandra Squire, PT
St. Paul’s Hospital, Vancouver (BC) One year funding.
Point of Care Ultrasound (POC-US)is a new technology that is starting to be used within the hemophilia clinic setting. Traditionally, if patients with hemophilia(PWH) had a joint or muscle bleed, if ultrasound imaging was done it would be within a radiology department. With POC-US, the physiotherapist is able to image the PWH within the clinic appointment to provide answers to a clinical question such as ‘is there a bleed?’ Studies have looked at the use of POC-US to examine joints in the clinic; this research will look at muscles to establish protocols that will specifically understand if there is a muscle bleed. The next step will then be to study if the clinicians are able to consistently describe the ultrasound images and correctly identify if a bleed has occurred. The aim of the research is to expand the use of POC-US within the clinic setting by providing evidence based protocols to establish if the PWH has a muscle bleed.
Knowledge translation of joint assessment in parents of children with hemophilia – The impact of a group intervention/education
Celina Woo, RN, MN, NP(P) and
Lawren De Marchi, B.Sc. (Kin), MPT
BC Children’s Hospital – Vancouver
One year funding
Bleeding into joints, hemarthroses, can be problematic in patients with hemophilia. It is more likely to occur with lower levels of factor VIII or IX, but also with injury for those with mild hemophilia. Poorly treated hemarthroses can lead to long-term joint damage, pain and disability. Joint assessment includes: looking for swelling, pain, changes in range of motion with the initial bleed and during resolution. Inadequate joint assessment may lead to increased factor usage and longer time to heal.
Long-term impacts of poorly treated joint bleeds may not be fully understood. We teach families about joint assessment at review visits or when their child is seen for bleeds. These are suboptimal teaching times as caregivers may be distracted, or the child is in pain; teaching during these visits may be brief and not address the family’s needs.
This pilot study, involving parents of boys aged 1-6 years, parents and boys 7-13, and adolescents 14-18 years at BC Children’s Hospital, will examine the impact of group education sessions on their knowledge and ability to perform a joint assessment. Participants will be monitored during, and take an expert-reviewed questionnaire, created by study investigators, pre-, immediately post, and three months post sessions.
Implementation, utilization and effectiveness of an electronic application developed specifically for young men with mild hemophilia
JoAnn Nilson, PT
University of Saskatchewan
One year funding. Start: May 1, 2014; to end April 30, 2015.
Young adult Canadian men with mild hemophilia tend to deny their condition and often delay seeking medical attention because they cannot distinguish the difference between ‘mild’ injuries and significant bleeds. Delaying treatment results in higher use of clotting factor, longer recovery periods, and increases demands on the health care system. With the input of young men age 18-35 with mild hemophilia and health care professionals, an electronic application for smart phones has been developed. “HIRT?” the App helps assess a musculoskeletal injury, encourages use of first aid and suggests contact with the Hemophilia Treatment Center if symptoms worsen. This study will spread the use of this App throughout Canada and test its effectiveness over a period of 12 months. 15-20 of the young men who have used the App and 50-60 health care practitioners across the country will be asked about the usefulness of this App. This research will provide evidence about a new treatment tool for those with mild hemophilia. It may contribute to earlier treatment decisions by these young men and better communication with the health workers.
After 12 months of individualized treatment plans, what is the long-term impact on physical activity and quality of life in a single treatment center?
Sandra Squire, BScPT
St-Paul’s Hospital (Vancouver)
One year funding. Start: April 30, 2014; to end March 31, 2015.
The study will look at the long term impact for patients on an individualized prophylaxis plan. It will measure their level of activity, their quality of life and the number of bleeds. Together the Hemophilia health care team and the patient will set up an individualized treatment plan. The discussion will be based on a motivational interviewing philosophy; this means that the aim is to really understand what treatment plan is important to the patient, types of exercise they are doing and want to do, and their school and work schedules. To measure the patient changes on the individual program we will look at three areas: 1. Measurement of physical activity 2. A quality of life questionnaire 3. Information from the patient self reported bleed records. An accelerometer will measure physical activity; it is a computerized armband worn for a week that collects information about all the movement that the client is doing e.g. it will know how often, fast and far a person is walking and time spent sleeping. All three measurement tools will be done at the start of to obtain a client baseline, and at the end of one year. Information collected will indicate how the treatment has influenced the amount of activity, quality of life and the number of bleeds.
An institutional pilot study to investigate exercise patterns in boys with hemophilia
Ms. Vanessa Bouskill, MN, RN(EC) Nurse Practitioner-Paediatrics &
Ms. Pamela Hilliard, BSc (PT), Physiotherapist
Comprehensive Bleeding Disorders Clinic
Division of Haematology, Department of Paediatrics
The Hospital for Sick Children (Toronro)
One year funding. Start: September 2, 2013; To end August 31, 2014.
Hemophilia is a genetic bleeding disorder defined by a deficiency/lack of coagulation factor: Hemophilia A factor VIII (FVIII) deficiency and hemophilia B factor IX (FIX) deficiency. Hemophilia is further divided into level of severity based on the level of factor within the blood (severe <1%, moderate 1-5% and mild 5-30%). Those with severe hemophilia generally have a higher likelihood of bleeding. Concern regarding incurring joint/muscle bleeds may lead to decreased participation in moderate to vigorous physical activity. Many studies have proven that regular exercise/activity participation has cardiovascular, musculoskeletal, and mental health benefits. This pilot study involving boys enrolled in the Hospital for Sick Children Hemophilia Comprehensive Care Clinic will explore differences in the amount of time spent in moderate to vigorous physical activity (MVPA) relating to disease severity using an accelerometer and two self-report questionnaires (Paediatric Hemophilia Activities List -PedHAL and 3 day physical activity recall- 3DPAR). The accelerometry data will also be compared to a healthy (unaffected) Canadian cohort. As well, the relationship between level of physical activity and age, weight, body mass index and prophylactic regimen will be explored.