Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey
- 1 September 2006
- journal article
- Published by American Public Health Association in American Journal of Public Health
- Vol. 96 (9), 1618-1622
- https://doi.org/10.2105/ajph.2005.075234
Abstract
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.Keywords
This publication has 11 references indexed in Scilit:
- Effects of HIV infection on age and cause of death for persons with hemophilia A in the United StatesAmerican Journal of Hematology, 2001
- Risk factors for infection with HBV and HCV in a largecohort of hemophiliac malesTransfusion, 2001
- Current therapy for rare factor deficienciesHaemophilia, 2001
- Mortality among males with hemophilia: relations with source of medical care. The Hemophilia Surveillance System Project Investigators.2000
- Compliance in adolescents with chronic diseases: a review11The full text of this article is available via JAH Online at http://www.elsevier.com/locate/jahonline.Journal of Adolescent Health, 2000
- Treatment strategies for adolescents with hemophilia: opportunities to enhance development.1999
- Prevalence and Changes in Hepatitis C Virus Genotypes among Multitransfused Persons with HemophiliaThe Journal of Infectious Diseases, 1999
- Maintenance of musculoskeletal function in people with haemophiliaHaemophilia, 1998
- Effects of Hemophilia on Articulations of Children and AdultsClinical Orthopaedics and Related Research, 1996
- Effects of hemophilia on articulations of children and adults.1996