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This Article Figures Only Full Text Full Text (PDF) All Versions of this Article: AJPH.2005.075234v1 96/9/1618    most recent Submit a response View Shopping Cart Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Nazzaro, A.-M. Articles by Larson, K. L. Search for Related Content PubMed PubMed Citation Articles by Nazzaro, A.-M. Articles by Larson, K. L. Related Collections Other Chronic Disease Health Promotion Adolescent Health Prevention Health Education

Ann-Marie Nazzaro, PhD, Sally Owens, BSN, W. Keith Hoots, MD and Kelly L. Larson, MPH

Ann-Marie Nazzaro is with the National Hemophilia Foundation, New York, NY, as was Kelly L. Larson at the time of the study. Sally Owens is with the Centers for Disease Control and Prevention, Atlanta, Ga. W. Keith Hoots is with the Gulf States Hemophilia and Thrombosis Center, Houston, Tex.

Correspondence: Requests for reprints should be sent to Ann-Marie Nazzaro, PhD, National Hemophilia Foundation, 116 W 32nd St, New York, NY 10001 (e-mail: anazzaro{at}hemophilia.org).

Objectives. The National Hemophilia Foundation and the Centers for Disease Control and Prevention conducted a national survey focusing on knowledge about, attitudes toward, and behaviors associated with key prevention activities among youths with hemophilia and used the data gathered to design a health promotion campaign.

Methods. A national, random sample of 459 patients was drawn from 20 hemophilia treatment centers and 8 hemophilia associations; 110 (24%) of the respondents were young people. A telephone questionnaire was used to measure knowledge, behaviors, and barriers to prevention.

Results. Thirty-six percent of the youth respondents believed that joint disease cannot be prevented; 60% managed hemophilia by avoiding physical activity. Only 31% of the respondents treated bleeding episodes within 1 hour. Although hepatitis was a clear threat to this hemophilic cohort, 78% did now know transmission routes for hepatitis C, and 67% did not know transmission routes for hepatitis B.

Conclusions. Young people with chronic disorders need help understanding that they can prevent complications. We identified key messages for a hemophilia prevention campaign, including exercising to ensure healthy joints and treating bleeding episodes early and adequately.