Region VII Hemophilia Program

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DESCRIPTION (provided by applicant): The long-term objective of this application is to prevent complications of hemophilia through assessment, surveillance, outreach, education, consultation, and management in multidisciplinary comprehensive hemophilia treatment centers (HTCs) in Region VII (Iowa, Kansas, Missouri and Nebraska). In addition to work toward the national aims of the project for this 5-year period of funding to expand the UDC cohort, transition the national database from paper to electronic, and from email based to web-based, to expand the database to collect additional relevant data, and to design prevention messages and strategies, clinical research and data sharing with other relevant agencies and lay organizations such as the National Hemophilia Foundation and the National Alliance for Thrombosis and Thrombophilia, the regional project looks at the hypothesis that with increased physical activity, persons with hemophilia or von Willebrand disease will have fewer complications. The proposed study, "Adding Physical Activity/Subtracting Complications" will include designing, implementing and evaluating a new program aimed at increasing physical activity in persons ages 13-21 with bleeding disorders as part of comprehensive care through HTCs. The significance of this project is clearly evident through the data previously collected through UDC. 24% of the 926 patients from Region VII who have participated in UDC are categorized as being overweight, 17 % report using canes, crutches, or walkers, 3.4% use wheelchairs, and 26% of the total patients reported restrictions in their activity level. During their annual comprehensive clinic visit, participants in the proposed study would receive educational materials describing physical activity plans for the upcoming year from which to choose. Data will be collected during the comprehensive clinic visit as it is currently being done. Additional data would be collected at three, six and nine months of participation from questionnaires, and at twelve months, when the participants return for their annual visit. The expected results for persons who maintained frequency of activity within 25% of the goal would be decreases in BMI, number of target joints, activity restrictions, and use of assistive devices, and an increase in range of motion. Results can be applied to the general population regarding the benefit of increased physical activity to health status as described in Healthy People 2010 goal to "Improve health, fitness, and quality of life through daily physical activity."