Objective: To provide information on knowledge and practice of preventive behaviors within the hemophilia community. These data will inform the design of a health promotion campaign supporting the prevention or reduction of complications associated with hemophilia A and B. Design/Setting: A random, systematic sample was drawn from patients at 28 randomly selected hemophilia treatment centers (HTC) and eight local hemophilia associations. Twenty-four percent of the sample consisted of youths with hemophilia between the ages of 13 and 21, 38% adults with hemophilia, and 38% parents of children 9 years of age and younger with hemophilia.A 105-item questionnaire was administered via telephone to participants throughout the fall of 1999. Demographics, type and severity of hemophilia cases, attendance of and satisfaction with HTCs, knowledge, behaviors and health status were measured . Preliminary univariate statistics were compiled on key measures. Final results will be provided upon completion of the survey in February 2000. Most(58%) reported having severe hemophilia, 16% moderate hemophilia and 24% mild hemophilia. Many respondents stated that hemophilia not only affects their overall physical health and mobility (53%), but also state that their condition has a negative financial impact(49%) or that it causes problems at school or work (40%). Some respondents (29%) reported the negative influence of hemophilia on feelings of self -worth, while 23% state that it causes problems in relationships with other people. These results will provide valuable insights towards the design of a health promotion campaign for the hemophilia community.
Learning Objectives: Describe the hemophilia community's knowledge, attitudes and beliefs about the prevention of complications of hemophilia
Keywords: Special Populations, Health Behavior
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: National Hemophilia Foundation
Macro International
Porter Novelli
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: employment-National Hemophilia Foundation