Changing pattern of care of boys with haemophilia in western European centres

Haemophilia

Volumn 11, Issue 2, 2005, Pages 92-99

  Chambost, Hervé ^a   Ljung, R ^b   Aronis Vournas, S ^c   Auerswald, G ^c   van de Berg, H M ^c   Boeri, E ^c   Donadel Claeyssens, S ^c   Van Geet, C ^c   Glomstein, A ^c   Hill, F ^c   Kobelt, R ^c   Kreuz, W ^c   Kurnik, K ^c   Liesner, R ^c   Muntean, W ^c   Perez Garrido, R ^c   Petrini, P ^c   Rafowicz, A ^c   Rosado, L ^c   Lausen, B ^c   Siimes, M ^c   Smith, O ^c   Thomas, A ^c   more..

^a TIMONE HOSPITAL   (France)

^b LUND UNIVERSITY HOSPITAL   (Sweden)

^c NONE

Author keywords

Factor IX; Factor VIII; Haemophilia A; Haemophilia B; Prophylaxis; Survey

Indexed keywords

BLOOD CLOTTING INHIBITOR; RECOMBINANT BLOOD CLOTTING FACTOR 8; RECOMBINANT BLOOD CLOTTING FACTOR 9;

ADOLESCENT; ADULT; ARTICLE; CENTRAL VENOUS CATHETERIZATION; CHILD; CLINICAL PRACTICE; CONTROLLED STUDY; CULTURAL FACTOR; DISEASE SEVERITY; DRUG UTILIZATION; ECONOMIC ASPECT; EXPERIENCE; GENE MUTATION; GENETIC ANALYSIS; HEALTH CARE DELIVERY; HEALTH CARE FACILITY; HEALTH CARE ORGANIZATION; HEALTH CARE QUALITY; HEMARTHROSIS; HEMOPHILIA A; HEMOPHILIA B; HUMAN; INTERMETHOD COMPARISON; MAJOR CLINICAL STUDY; MALE; PRIORITY JOURNAL; PROPHYLAXIS; QUESTIONNAIRE; SOCIAL ASPECT; VASCULAR ACCESS; WESTERN EUROPE;

ADOLESCENT; BLOOD COAGULATION FACTORS; CATHETERIZATION; CHILD; CHILD, PRESCHOOL; DRUG ADMINISTRATION SCHEDULE; EUROPE; FACTOR IX; FACTOR VIII; HEMOPHILIA A; HEMOPHILIA B; HOME NURSING; HUMANS; MALE; POPULATION SURVEILLANCE; QUALITY OF HEALTH CARE; RECOMBINANT PROTEINS;

EID: 20144388466     PISSN: 13518216     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1365-2516.2005.01074.x     Document Type: Article

References (26)

1. Nilsson IM, Berntorp E, Lofqvist T, Pettersson H. Twenty-five years' experience of prophylactic treatment in severe haemophilia A and B. J Intern Med 1992; 232: 25-32.
2. van den Berg HM, Fischer K. Prophylaxis for severe hemophilia: experience from Europe and the United States. Semin Thromb Hemost 2003; 29: 49-54.
3. Manco-Johnson MJ. Update on treatment regimens: prophylaxis versus on-demand therapy. Semin Hematol 2003; 40: 3-9.
4. Blanchette VS, McCready M, Achonu C, Abdolell M, Rivard G, Manco-Johnson MJ. A survey of factor prophylaxis in boys with haemophilia followed in North American haemophilia treatment centres. Haemophilia 2003; 9: 19-26.
5. Ljung R. Prophylactic infusion regimens in the management of hemophilia. Thromb Haemost 1999, 82: 525-30.
6. Astermark J. When to start and when to stop primary prophylaxis in patients with severe haemophilia. Haemophilia 2003; 9: 32-6.
7. Petrini P. How to start prophylaxis. Haemophilia 2003; 9: 83-5.
8. Berntorp E, Astermark J, Bjorkman S et al. Consensus perspectives on prophylactic therapy for haemophilia: summary statement. Haemophilia 2003; 9: 1-4.
9. Ljung R. Meeting Report: Second Workshop of the European Paediatric Network for Haemophilia Management, 17-19th September 1998 in Vitznau, Switzerland. Haemophilia 1999; 5: 286-91.
10. Hill FGH and Ljung R. Meeting Report: Third and Fourth Workshops of the European Paediatric Network for Haemophilia Management. Haemophilia 2003; 9: 223-8.
11. Ljung R, Aronis-Vournas S, Kurnik-Auberger K et al. Treatment of children with haemophilia in Europe: a survey of 20 centres in 16 countries. Haemophilia 2000; 6: 619-24.
12. Fischer K, van den Berg M. Prophylaxis for severe haemophilia: clinical and economical issues. Haemophilia 2003; 9 376-81.
13. Gringeri A, von Mackensen S, Auerswald G et al. Haemo-QoL Study. Health status and health-related quality of life of children with haemophilia from six West European countries. Haemophilia 2004; 10: 26-33.
14. Shapiro AD, Donfield SM, Lynn HS et al. Academic Achievement in Children with Hemophilia Study Group. Defining the impact of hemophilia: the Academic Achievement in Children with Hemophilia Study. Pediatrics 2001; 108: E105.
15. Valentino LA. Secondary prophylaxis therapy: what are the benefits, limitations and unknowns? Haemophilia 2004; 10: 147-57.
16. Astermark J, Petrini P, Tengborn L, Schulman S, Ljung R and Berntorp E. Primary prophylaxis in severe haemophilia should be started at an early age but can be individualized. Br J Haematol 1999; 105: 1109-13.
17. Kreuz W, Escuriola Ettingshausen C, Funk M, Pons S, Schmidt H, Kornhuber B. Prevention of joint damage in hemophilic children with early prophylaxis. Orthopade 1999; 28: 341-6.
18. Fischer K, van der Bom JG, Mauser-Bunschoten EP et al. The effects of postponing prophylactic treatment on long-term outcome in patients with severe hemophilia. Blood 2002; 99: 2337-41.
19. Lorenzo J, Lopez A, Altisent C, Aznar JA. Incidence of factor VIII inhibitors in severe haemophilia: the importance of patient age. Br J Haematol 2001; 113: 600-3.
20. van der Bom JG, Mauser-Bunschoten EP, Fischer K, van den Berg MH. Age at first treatment and immune tolerance to factor VIII in severe haemophilia. Thromb Haemost 2003; 89: 475-9.
21. Hacker MR, Geraghty S, Manco-Johnson M. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia 2001; 7: 392-6.
22. Petrini P. What factors should influence the dosage and interval of prophylactic treatment in patients with severe haemophilia A and B? Haemophilia 2001; 7: 99-102.
23. Blanchette VS, Manco-Johnson M, Santagostino E, Ljung R. Optimizing factor prophylaxis for the haemophilia population: where do we stand? Haemophilia 2004; 10 (S4): 97-104.
24. Butler RB, McClure W, Wulff K. Practice patterns in haemophilia A therapy - a survey of treatment centres in the United States. Haemophilia 2003; 9: 549-54.
25. Lundin B, Pettersson H, Ljung R. A new magnetic resonance imaging scoring method for assessment of haemophilic arthropathy. Haemophilia 2004; 10: 383-9.
26. von Mackensen S, Bullinger M. Haemo-QoL Group. Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL). Haemophilia 2004; 10: 17-25.