title: Assessment of treatment practice patterns for severe hemophilia A: a global nurse perspective.
abstract: This paper reports findings from a global survey of practice patterns for severe hemophilia A. Nurses from 105 hemophilia treatment centers in the US, the UK, Canada and Sweden responded to a questionnaire and provided data for more than 10,100 children and adults. Forty-eight percent of the US patients and 38 and 37% of the British and Swedish patients, respectively, were reported to have severe hemophilia A. The survey found that 28% of US patients and 38% of UK patients with severe hemophilia A were on primary prophylaxis in 2005. These rates were significantly higher than those reported in a 2003 survey. Sweden continues to lead the world in prophylaxis utilization, with virtually 100% of patients aged 3-18 on primary prophylactic regimens. Bleeding history and target joint development were major reasons for initiating prophylaxis; poor adherence, inadequate family commitment and venous access problems were cited as the top causes for discontinuing treatment. Nurses in all 4 reporting countries agreed that prophylaxis is the optimal therapy for patients with severe hemophilia A because it prevents joint and muscle damage and improves quality of life. They cited patient/family education as the most appropriate strategy for overcoming the barriers to prophylaxis.
authors: Great Ormond Street Hospital for Children NHS Trust, London, UK. khairk@gosh.nhs.uk
authors: Kate
authors: K
authors: Khair
authors: Kingsley
authors: K
authors: Lawrence
authors: Regina
authors: R
authors: Butler
authors: Eadaoin
authors: E
authors: O'Shea
authors: Beverly A
authors: BA
authors: Christie
mesh_terms: D006395:Hemarthrosis / Q000209:etiology / Q000517:prevention & control; D006467:Hemophilia A / Q000628:therapy*; D006470:Hemorrhage / Q000209:etiology / Q000517:prevention & control; D006801:Humans; D009726:Nurses; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data*; D011292:Premedication / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D013548:Sweden; D006113:United Kingdom; D014481:United States