Compliance with appropriate regimens and healthy lifestyle by adolescents with chronic disorders have been problematic across several disorders. The National Hemophilia Foundation with the CDC designed this study as the basis for a national prevention campaign for hemophilic adolescents. Design/Setting: A national, random and systematic sample of 459 respondents was drawn from patients at 20 randomly selected hemophilia treatment centers (HTCs) and eight hemophilia associations. Twenty-four percent of the sample consisted of youth with hemophilia ages 13 to 21. A 105-item telephone questionnaire measured demographics, attendance at and satisfaction with HTCs, information sources, knowledge, behaviors, and barriers to healthy practices. Key complications of hemophilia are joint disease and blood-borne viruses. Early treatment of bleeds and exercise ameliorate joint damage yet 36% of the youth believed joint disease canNOT be prevented; 60% stated they manage hemophilia by avoiding physical activity. Only 31% stated that they treat a bleed within one hour of its occurrence in contrast to 52% of adults and 67% of parents of children with hemophilia. On social issues, 42% of adolescents stated that hemophilia causes problems at school or work. Study results were used to develop and test prevention messages to use with hemophilic adolescents and to determine key channels and venues for a national health promotion campaign. See www.hemophilia.org
Learning Objectives: Provide information on knowledge and practice of preventive behaviors among adolescents within the hemophilia community; Discuss use of these data to inform the design of a health promotion campaign supporting the prevention of complications associated with hemophilia
Keywords: Adolescent Health, Community Health Programs
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: National Hemophilia Foundation, Centers for Disease Control and Prevention, funded through a CDC Cooperative Agreement
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.