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The relative burden of haemophilia A and the impact of target joint development on health-related quality of life: results from the ADVATE Post-Authorization Safety Surveillance (PASS) study.

Bibliographic reference Klamroth, R ; Pollmann, H ; Hermans, C ; Faradji, A ; Yarlas, A S ; et. al. The relative burden of haemophilia A and the impact of target joint development on health-related quality of life: results from the ADVATE Post-Authorization Safety Surveillance (PASS) study.. In: Haemophilia, Vol. 17, no.3, p. 412-21 (2011)
Permanent URL http://hdl.handle.net/2078/125231
  1. World Federation of Hemophilia, Guidelines for the Management of Hemophilia (2005)
  2. Darby S. C., Kan S. W., Spooner R. J., Giangrande P. L. F., Hill F. G. H., Hay C. R. M., Lee C. A., Ludlam C. A., Williams M., , Mortality rates, life expectancy, and causes of death in people with hemophilia A or B in the United Kingdom who were not infected with HIV, 10.1182/blood-2006-10-050435
  3. Ikkala E., Helske T., Myllylä G., Nevanlinna H. R., and P. Pitkänen, Rasi V., Changes in the life expectancy of patients with severe haemophilia A in Finland in 1930-79, 10.1111/j.1365-2141.1982.tb03856.x
  4. PLUG I., VAN DER BOM J. G., PETERS M., MAUSER-BUNSCHOTEN E. P., DE GOEDE-BOLDER A., HEIJNEN L., SMIT C., WILLEMSE J., ROSENDAAL F. R., Mortality and causes of death in patients with hemophilia, 1992-2001: a prospective cohort study1, 10.1111/j.1538-7836.2006.01808.x
  5. ALEDORT L. M., HASCHMEYER R. H., PETTERSSON H., , A longitudinal study of orthopaedic outcomes for severe factor-VIII-deficient haemophiliacs, 10.1111/j.1365-2796.1994.tb00815.x
  6. Aznar J. A., Magallon M., Querol F., Gorina E., Tusell J. M., The orthopaedic status of severe haemophiliacs in Spain, 10.1046/j.1365-2516.2000.00397.x
  7. HARTL H. K., REITTER S., EIDHER U., RAMSCHAK H., AY C., PABINGER I., The impact of severe haemophilia on the social status and quality of life among Austrian haemophiliacs, 10.1111/j.1365-2516.2008.01684.x
  8. Miners, Sabin, Tolley, Jenkinson, Kind, Lee, Assessing health-related quality-of-life in individuals with haemophilia, 10.1046/j.1365-2516.1999.00347.x
  9. ROYAL S., SCHRAMM W., BERNTORP E., GIANGRANDE P., GRINGERI A., LUDLAM C., KRONER B., SZUCS T., , Quality-of-life differences between prophylactic and on-demand factor replacement therapy in European haemophilia patients, 10.1046/j.1365-2516.2002.00581.x
  10. TALAULIKAR D., SHADBOLT B., MCDONALD A., PIDCOCK M., Health-related quality of life in chronic coagulation disorders, 10.1111/j.1365-2516.2006.01358.x
  11. Trippoli, Haematologica, 86, 722 (2001)
  12. Fischer K., Bom J. G., Mauser-Bunschoten E. P., Roosendaal G., Berg H. M., Effects of haemophilic arthropathy on health-related quality of life and socio-economic parameters, 10.1111/j.1365-2516.2005.01065.x
  13. Fischer K., Van der Bom J. G., Molho P., Negrier C., Mauser-Bunschoten E. P., Roosendaal G., De Kleijn P., Grobbee D. E., Van Den Berg H. M., Prophylactic versus on-demand treatment strategies for severe haemophilia: a comparison of costs and long-term outcome, 10.1046/j.1365-2516.2002.00695.x
  14. Molho, Rolland, Lebrun, Dirat, Courpied, Croughs, Duprat, Sultan, , Epidemiological survey of the orthopaedic status of severe haemophilia A and B patients in France, 10.1046/j.1365-2516.2000.00358.x
  15. SCALONE L., MANTOVANI L. G., MANNUCCI P. M., GRINGERI A., , Quality of life is associated to the orthopaedic status in haemophilic patients with inhibitors, 10.1111/j.1365-2516.2006.01204.x
  16. Solovieva S., Clinical severity of disease, functional disability and health-related quality of life. Three-year follow-up study of 150 Finnish patients with coagulation disorders, 10.1046/j.1365-2516.2001.00476.x
  17. SIBONI S. M., MANNUCCI P. M., GRINGERI A., FRANCHINI M., TAGLIAFERRI A., FERRETTI M., TRADATI F. C., SANTAGOSTINO E., von MACKENSEN S., , Health status and quality of life of elderly persons with severe hemophilia born before the advent of modern replacement therapy, 10.1111/j.1538-7836.2009.03318.x
  18. RENTZ A., FLOOD E., ALTISENT C., BULLINGER M., KLAMROTH R., GARRIDO R. P., SCHARRER I., SCHRAMM W., GORINA E., , Cross-cultural development and psychometric evaluation of a patient-reported health-related quality of life questionnaire for adults with haemophilia, 10.1111/j.1365-2516.2008.01812.x
  19. GENDEREN F. R., FISCHER K., HEIJNEN L., KLEIJN P., BERG H. M., HELDERS P. J. M., MEETEREN N. L. U., Pain and functional limitations in patients with severe haemophilia, 10.1111/j.1365-2516.2006.01203.x
  20. OLDENBURG J., GOUDEMAND J., VALENTINO L., RICHARDS M., LUU H., KRIUKOV A., GAJEK H., SPOTTS G., EWENSTEIN B., Postauthorization safety surveillance of ADVATE [antihaemophilic factor (recombinant), plasma/albumin-free method] demonstrates efficacy, safety and low-risk for immunogenicity in routine clinical practice : POSTAUTHORIZATION SAFETY SURVEILLANCE OF RAHF-PFM, 10.1111/j.1365-2516.2010.02332.x
  21. Ware, User’s Manual for the SF-36v2 Health Survey (2007)
  22. Ware John E., Gandek Barbara, Kosinski Mark, Aaronson Neil K., Apolone Giovanni, Brazier John, Bullinger Monika, Kaasa Stein, Leplège Alain, Prieto Luis, Sullivan Marianne, Thunedborg Kate, The Equivalence of SF-36 Summary Health Scores Estimated Using Standard and Country-Specific Algorithms in 10 Countries, 10.1016/s0895-4356(98)00108-5
  23. Bullinger Monika, von Mackensen Sylvia, Quality of Life in Children and Families With Bleeding Disorders : , 10.1097/00043426-200312001-00015
  24. Ravens-Sieberer U., Bullinger M., Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results, 10.1023/a:1008853819715
  25. WIEDEBUSCH S., POLLMANN H., SIEGMUND B., MUTHNY F. A., Quality of life, psychosocial strains and coping in parents of children with haemophilia, 10.1111/j.1365-2516.2008.01803.x
  26. World Federation of Hemophilia, Report on the Annual Global Survey 2006 (2007)
  27. Mulder K., Llinas A., The target joint, 10.1111/j.1365-2516.2004.00976.x
  28. Sherry David D., Avoiding the Impact of Musculoskeletal Pain on Quality of Life in Children With Hemophilia : , 10.1097/01.nor.0000315623.59385.2b
  29. Kern Melissa, Blanchette Victor, Stain Ann Marie, Einarson Thomas R., Feldman Brian M., Clinical and cost implications of target joints in Canadian boys with severe hemophilia A, 10.1016/j.jpeds.2004.06.082
  30. Manco-Johnson Marilyn J., Abshire Thomas C., Shapiro Amy D., Riske Brenda, Hacker Michele R., Kilcoyne Ray, Ingram J. David, Manco-Johnson Michael L., Funk Sharon, Jacobson Linda, Valentino Leonard A., Hoots W. Keith, Buchanan George R., DiMichele Donna, Recht Michael, Brown Deborah, Leissinger Cindy, Bleak Shirley, Cohen Alan, Mathew Prasad, Matsunaga Alison, Medeiros Desiree, Nugent Diane, Thomas Gregory A., Thompson Alexis A., McRedmond Kevin, Soucie J. Michael, Austin Harlan, Evatt Bruce L., Prophylaxis versus Episodic Treatment to Prevent Joint Disease in Boys with Severe Hemophilia, 10.1056/nejmoa067659
  31. DJULBEGOVIC B., GOLDSMITH G., VAUGHN D., BIRKIMER J., MARASA M., JOSEPH G., HUANG A., HADLEY T., Comparison of the quality of life between HIV-positive haemophilia patients and HIV-negative haemophilia patients, 10.1111/j.1365-2516.1996.tb00161.x