Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey

National Hemophilia Foundation, New York, NY 10001, USA.
American Journal of Public Health (Impact Factor: 4.55). 10/2006; 96(9):1618-22. DOI: 10.2105/AJPH.2005.075234
Source: PubMed


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.
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.
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.
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.

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    • "These results agree with those of Koch et al. [35] that after treatment with strength training in young people with hemophilia from 12 to 14 years, improvement was noted in quadriceps muscle strength with a decrease in the frequency of haemarthrosis in the knee joint and in the results of Pelletier et al. [36] in a patient with hemophilic arthropathy of the knee treated with isometric exercises. Other authors have also noted that physical activity can improve muscle strength and flexibility and reduce the number of bleeding, synovitis and joint destruction in patients with hemophilia [37]. "
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    ABSTRACT: Haemophilic arthropathy of the ankle causes pain and deterioration in gait, causing disability. Although some physiotherapy modalities are effective in the management of acute bleeding, the results are unknown in chronic arthropathy. Our objective was to determine the most effective physiotherapy procedures for treating the haemophilic arthropathy of the ankle and to assess the methodological quality of the studies. A systematic review was carried out in the Cochrane Database, PubMed, MEDLINE, ISI Web of Knowledge, PEDro, TESEO, and specialized journals (Haemophilia and Haematologica). It included articles with at least one group undergoing any kind of physiotherapy treatment and with pretest and posttest evaluation, published before April 2013. An analysis of variables was performed and assessed the methodological quality of studies. Five studies met the criteria for inclusion. Hydrotherapy treatments, strength training and balance strength, balance training, and sports therapy, have improved range of movement, pain, balance, and subjective physical performance. The proposed methodological analysis was not possible due to the low quality of the studies. Although the results are positive, they lack rigorous evidence on the effects of treatments. Studies are needed to establish the efficacy of the various forms of physiotherapy in the haemophilic arthropathy of the ankle.
    Full-text · Article · Aug 2013
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    • "In response to a questionnaire survey distributed between 2008 and 2009, 47 physicians from Europe, the US, Africa, Australia, and Central and South America reported that although they recommend bleeds be treated within 1 hour of onset, in practice only 64.6% of bleeds were treated within 1–2 hours.13 In a survey sponsored by the Centers for Disease Control and Prevention (CDC), only 31% of patients with hemophilia aged 13–21 years treated bleeding episodes within 1 hour, and 15% waited over 6 hours.14 When patients were queried, 29% replied that they did not recognize the bleeding episode, and 11% did not think the bleed was serious enough to warrant treatment. "
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    ABSTRACT: Early treatment of bleeds in hemophilia patients, both with and without inhibitors, has been shown to be of immense benefit in the overall clinical outcome. Despite the advantages of treating the bleeding episodes early, significant barriers and limitations remain. The aim of this review is to highlight the various barriers and perceived limitations to early therapy of bleeding episodes, especially in patients who have developed inhibitors to factor VIII. The peer-reviewed literature was searched for articles on hemophilia patients, with and without inhibitors, and early treatment, to identify the barriers to early treatment and potential impact on patient outcomes. The most important barrier is the educational barrier, which involves lack of awareness among patients regarding the signs of a bleed, as well as importance of early therapy. It is also common for parents or caregivers of school-age children to exhibit inconvenience and scheduling barriers. Distance to the treatment center can also play a role here. Some patients experience financial barriers related to cost of clotting factor products, insurance coverage, or insurance caps and out-of-pocket costs. Rarely, there can also be problems related to venous access or home infusion. Lastly, multiple psychosocial barriers can prevent adherence to treatment regimens. Identification and addressing these individual barriers will result in improved compliance rates, prevent joint damage, be more cost-effective, and lead to better overall health of these patients.
    Preview · Article · May 2013 · Hematology Research and Reviews
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    • "en la revisión por áreas temáticas relacionados con la condición física, la actividad y el ejercicio físico y deporte en el paciente hemofílico. Áreas temáticas afines Referencias Artículos de revisión Mulder et al (2004); Wind et al (2004); Von Mackensen (2007); Morris et al (2008); Petrini y Seuser (2009); Gomis et al (2009); Philpott et al (2010) Trabajos observacionales, retrospectivos, y experiencias clínicas que estudian aspectos específicos de la condición física Greenan-Fowler et al (1987); Buzzard (1996); Falk et al (2000); Heijnen et al (2000); Schoenmakers et al (2001); Hilberg et al (2001); Falk et al (2005); Van der Net et al (2006); Mihalova (2007); González et al (2007); Fromme et al (2007); Engelbert et al (2008); Tlacuilo-Parra et al (2008); Gallach et al (2008); Tiktinsky et al (2009); Koiter et al (2009); Douma-Van Riet et al (2009); Herbsleb y Hilberg (2009); Ross et al (2009); Hassan et al (2010); Broderick et al (2010); Buxbaum et al (2010); Fearn et al (2010); Sherlock et al (2010); Hill et al (2010) Trabajos observacionales y experiencias clínicas relacionados con la condición física Toy et al (2001); Barnes (2004); Nazzaro et al (2006); Wallny et al (2007); Seuser et al (2007); Hofstede et al (2008); Lobet et al (2008); Khawaji et al (2010) Recomendaciones generales sobre realización de actividad física, ejercicio físico y deporte "
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    ABSTRACT: Physical exercise and sports is one of the basic foundations in the treatment of haemophilia. This article gives a brief description of the characteristics of haemophilia, and through an exhaustive literature review, the importance of the physical condition, as regards prevention and treatment of musculoskeletal lesions in the haemophilic patient, is also analysed.Haemophilia is a hereditary haematological disease, characteristic orthopaedic lesions. It affects males and has a deficiency of clotting factors which causes haemorrhages, including spontaneous (in severe patients without treatment). The most common lesions are: haemarthrosis, synovitis, muscle haematomas and haemophilic arthritis. The physical condition of the haemophilic patient, controlled by clotting factor replacement therapy, is fundamental and requires physiotherapy, physical exercise and sport.Based on the recommendations by expert committees of the World Haemophilia Foundation (WFH) and using major data bases and search strategies with key words, 756 references were obtained, of which on 74 passed the inclusion criteria.The publications were grouped by subject area, differentiating review articles, observational studies and clinical experiences, experimental studies and interventionist actions on specific parameters of physical condition.It concludes with important evidence on the recommendation of physical exercise and sport in haemophilia, the consensus on its suitability for the physical and social wellbeing of the patients and the need to increase scientific works in this respect.
    Full-text · Article · Jan 2011 · Apunts Medicine de l'Esport
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