Developing models of haemophilia care

Haemophilia

Volumn 18, Issue SUPPL.4, 2012, Pages 89-93

  Street, A ^a  

^a WORLD FEDERATION OF HEMOPHILIA   (Canada)

Author keywords

Audit; Comprehensive care; Development; Education and research

Indexed keywords

BLOOD CLOTTING FACTOR;

ARTICLE; COST EFFECTIVENESS ANALYSIS; DISEASE COURSE; FOLLOW UP; HEALTH CARE ACCESS; HEALTH CARE DELIVERY; HEALTH PROGRAM; HEALTH SERVICE; HEMOPHILIA; HUMAN; LABORATORY PERSONNEL; MEDICAL AUDIT; MEDICAL SOCIETY; MEDICAL SPECIALIST; PATIENT ASSESSMENT; PATIENT CARE; PATIENT CARE PLANNING; PATIENT PARTICIPATION; PERSONALIZED MEDICINE; PRIORITY JOURNAL; SELF CARE; WORLD FEDERATION OF HEMOPHILIA; WORLD HEALTH ORGANIZATION;

CHRONIC DISEASE; CLINICAL AUDIT; DELIVERY OF HEALTH CARE; DISEASE MANAGEMENT; GREAT BRITAIN; HEMOPHILIA A; HUMANS; INTERNATIONAL AGENCIES; MODELS, ORGANIZATIONAL; NATIONAL HEALTH PROGRAMS; REGISTRIES; SELF CARE; SOCIETIES, MEDICAL;

EID: 84862862541     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/j.1365-2516.2012.02876.x     Document Type: Article

References (26)

1. Ingram GIC. The history of haemophilia. Haemophilia 1997; 3: 5-15.
2. Biggs R, Mc Farlane RC. Treatment of Haemophilia and Other Coagulation Disorders. Oxford, UK: Blackwell Scientific, 1966.
3. Kasper CK. A total program for the patients with hemophilia. J Am Phys Ther Assoc 1966; 46: 1268-5.
4. World Health Organization. Prevention and control of haemophilia: memorandum from a joint WHO/WFH meeting. Bull World Health Organiz 1991; 69: 17-26.
5. World Health Organization. Delivery of Treatment for Haemophilia. Report of a WHO/WFH/ISTH meeting, London, UK, 11-13 February 2002. Geneva, Switzerland: World Health Organization, 2002.
6. World Federation of Hemophilia. Structure and Functions of Comprehensive Hemophilia Treatment Centres. WFH Fact Sheet 7. Montreal, Canada: World Federation of Hemophilia, 2011.
7. Levine PH, McVerry BA, Sagelman AE et al. Comprehensive health care clinic for haemophiliacs. Arch Int Med 1976; 136: 792-4.
8. Smith PS, Levine PH. The benefits of comprehensive care of hemophilia: a five year study of outcomes. Am J Publ Health 1984; 74: 616-7.
9. Soucie JM, Nuss R, Evatt B. Mortality among males with hemophilia: relations with source of medical care, The Hemophilia Surveillance System Project Investigators. Blood 2000; 96: 437-42.
10. Plug I, Van der Bom JG, Peters M et al. Mortality and causes of death in patients with haemophilia, 1992-2001: a prospective cohort study. J Thromb Haemost 2006; 4: 510-6.
11. Soucie MJ. Public health surveillance and data collection: general principles and impact on hemophilia care. Hematology 2012; 17: s144-6.
12. Soucie MJ. Public health surveillance and data collection: general principles and impact on haemophilia care. Paper presented at the ISH scientific congress meeting, Mexico City, Mexico, March 2012.
13. Gringeri A, Lambert T, Street A, et al. Tertiary prophylaxis in adults: is there a rationale? Haemophilia 2012; (at press).
14. World Federation of Hemophilia. Compendium of Assessment Tools. Available at Accessed May 10, 2012.
15. Bullinger M, Mackensen S, Fischer K et al. Pilot testing of Haemo-QoL quality of life questionnaire for haemophiliac children in six European countries. Haemophilia 2002; 8(Suppl 2): 47-54.
16. United Kingdom Haemophilia Centre Doctors' Organisation. Available at Accessed May 10, 2012.
17. Canadian Hemophilia Standards Group. Canadian comprehensive care standard for hemophilia and other inherited bleeding disorders. Available on Canadian Hemophilia Society website. Available at Accessed May 11, 2012.
18. Colvin BT, Astermark J, Fischer K et al. European principles of haemophilia care. Haemophilia 2008; 14: 361-74.
19. World Federation of Hemophilia. World Federation of Hemophilia Guidelines for the Management of Hemophilia. Montreal, Canada: World Federation of Hemophilia, 2005. A second edition of the guidelines, with graded practice statements, will be published in 2012.
20. European Haemophilia Safety Surveillance. Available at Accessed May 10, 2012.
21. Bolton-Maggs PH. Optimal haemophilia care versus the reality. Br J Haematol 2006; 132: 671-82.
22. Hamburg MA, Collins FS. The path to personalized medicine. N Engl J Med 2010; 363: 301-4.
23. Viel KR, Ameri A, Abshire TC et al. Inhibitors of factor VIII in black patients with hemophilia. N Eng J Med 2009; 360: 1618-27.
24. Patient Reported Outcomes Measurement Information System (PROMIS). Promis website. Available at Accessed May 10, 2012.
25. World Federation of Hemophilia. Treatment for all: closing the gap in care for people with bleeding disorders. Montreal, Canada: World of Hemophilia, 2012 (at press).
26. Evatt BL. The natural evolution of comprehensive care: developing and sustaining comprehensive care globally. Haemophilia 2006; 12: 13-21.