Development of a disease-specific measure to the assessment of quality of life in adult patients living with hemophilia in Latin America: The Hemolatin-QoL;Desarrollo de una medida Específica para la evaluación de la calidad de vida en pacientes adultos viviendo con hemofilia en América-Latina: El Hemolatin-QoL

Interamerican Journal of Psychology

Volumn 39, Issue 2, 2005, Pages 211-220

  Remor, Eduardo ^a  

^a UNIVERSIDAD AUTÓNOMA DE MADRID   (Spain)

Author keywords

Adults; Assessment; Hemolatin QoL; Hemophilia

Indexed keywords

EID: 77954979233     PISSN: 00349690     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (30)

1. Aledort L. M., Haschmeyer, R. H., Pettersson, H., & The Orthopaedics Study Group. (1994). A longitudinal study of orthopaedics outcomes for severe factor VIII deficient hemophiliacs. Journal of Internal Medicine, 236, 391-399.
2. Altisent-Roca, C. (2001). Características generales y clínicas de la hemofilia. En Baxter Farmaceutical Company (Ed.), Guía de rehabilitación en hemofilia (pp. 3-4) Barcelona, España: Mayo.
3. Anastasi, A., & Urbina, S. (1997). Psychological testing. New Jersey, USA: Prentice Hall.
4. Arranz, P. (2003). Desarrollo de una medida especifica de calidad de vida para pacientes con hemofilia. Haematologica, 88(8), 34.
5. Arranz, P., Costa, M., Bayés, R., Cancio, H., Magallón, M., & Hernández, F. (2000). Emotional support in hemophilia. Montreal, Canadá: WFH.
6. Aznar, J. A., Magallón, M., Querol, F., Gorina, E., & Tusell, J. M. (2000). The orthopaedic status of severe haemophiliacs in Spain. Haemophilia, 6, 170-176.
7. Brewin, T., Ekert, H., & Davey, P. (2000). Recombinant VIIA (NovoSeven) treatment of six children with long - standing inhibitors improves quality of life. Haemophilia, 6(4), 414.
8. Bullinger, M., Ravens-Sieberer, U., Von Mackensen, S., Petersen C., & Fischer, A. (1999). Manual to Assess Health Related Quality-of-Life in Children with Haemophilia. Hamburg, Germany: Institute for Medical Psychology/University of Hamburg.
9. Bullinger, M., Von Mackensen, S., & The Haemo-QoL Group. (2003). Quality of life in children and families with bleeding disorders. Journal of Pediatric Hematology Oncology, 25(1), 64-67.
10. Chuansumrit, A. (2003). Treatment of hemophilia in the developing countries. Haemophilia, 9, 387-390.
11. Eignor, D. R. (2001). Standards for the development and use of tests: The standards for educational and psychological testing. European Journal of Psychological Assessment, 17(3), 157-163
12. Fischer, K., van der Bom, J. G., & van der Berg, H. M. (2003). Health-related quality of life as outcome parameter in haemophilia treatment. Haemophilia, 9(Suppl.1), 75-82.
13. Grupo de Trabajo Latinoamericano en Calidad de Vida Relacionada con la Salud en Hemofilia (2001). Proyecto multicéntrico latinoamericano calidad de vida relacionada con la salud en hemofilia. Dossier del proyecto. Madrid, España: Proyecto CEAL-UAM-BSCH no PD02-541A-Q-C40.
14. Khair, K. (2000). Quality of life in children with haemophilia. Haemophilia, 6(4), 419.
15. Liesner, R. J., Khair, K., & Hann, I. M. (1996). The impact of prophylactic treatment on children with severe haemophilia. British Journal of Haemtology, 9, 973-978.
16. Miners, A. H., Sabin, C. A., Tolley, K. H., Jenkinson, C., Ebrahim, S., & Lee, C. A. (1999). Assessing health-related quality-of-life in patients with severe haemophilia A and B. Psychology, Health & Medicine, 4, 5-15.
17. Remor, E. & The Hemofilia-QoL Group (2004). Desarrollo en España de un nuevo cuestionario de calidad de vida especifico para adultos con hemofilia: el Hemofilia-QoL. Haematologica, 89(3), 16-21.
18. Remor, E. (2003). Evaluación de la calidad de vida en pacientes adultos con hemofilia: proyecto multicéntrico español para el desarrollo de un cuestionario de calidad de vida especifico. Haematologica, 88(8), 35-37.
19. Remor, E., Arranz, P., & Miller, R. (2002). Psychosocial impact of inhibitors on haemophilia patients' quality of life. In E. C. Rodriguez-Merchan & C. A. Lee (Eds.), Inhibitors in patients with haemophilia (pp. 187-192). Oxford, England: Blackwell Science.
20. Remor, E., Young, N. L., von Mackensen, & S. Lopatina, E. G. (2004). Disease-specific quality-of-life measurement tools for haemophilia patients. Haemophilia, 10(Suppl. 4), 30-34.
21. Rodriguez-Merchan, E. C., & La Corte, H. (2000). Orthopaedic surgery in haemophiliac patients with inhibitors: A review of the literature. In E. C. Rodriguez-Merchan, N. J. Goddard & C. A. Lee (Eds.), Muculoskeletal aspects of haemophilia (pp. 136-142). Oxford, England: Blackwell Science.
22. Rosendaal, F. R., Smit, C., Varekamp, I., Brocker-Vriends, A. H., van Dijck, H., Suurmeijer, T. P., Vandenbroucke, J. P., & Briet, E. (1990). Modern haemophilia treatment: medical improvement and quality of life. Journal of Internal Medicine, 228, 633-640
23. Royal, S., Schramm, W., Berntorp, E., Giangrande, P., Gringeri, A., Ludlam, C., Kroner, B., Szucs, T. (2002). Quality-of-life differences between prophylactic end on-demand factor replacement therapy in European haemophilia patients. Haemophilia, 8, 44-50.
24. Sek, J., Saleh, M., Furlong, W., Horsman, J., Pai, M., Saleh, M., Walker, I., & Barr, R. (2000). Health-related quality of life in people living with haemophilia or von Willebrand disease in a geographical population. Haemophilia, 6(4), 426-427.
25. Solovieva, S. (2001). Clinical severity of disease, functional disability and health-related quality of life. Three-year follow-up study of 150 Finnish patients with coagulation disorders. Haemophilia, 7, 53-63.
26. Triemstra, A. H. M., Smith, C., Van der Ploeg, H. M., Briet, E., & Rosendaal, F. R. (1995) Two decades of haemophilia treatment in the Netherlands: 1972-1992. Haemophilia, 1, 165-171.
27. Trippoli, S., Vaiani, M., Linari, S., Longo, G., Morfini, M., & Messori, A. (2001). Multivariate analysis of factors influencing quality-of.-life and utility in patients with haemophilia. Haematologica, 86, 722-728
28. Von Makenzen, S., Bullinger, M., Ravens-Sieberer, U., & Negrini, C. (2000) Health-related quality of life in children and adolescents with haemophilia. Developmnt of the new Haemo-Qol questionnaire. Haemophilia, 6(4), 427.
29. Wang, T., Zhang, L., Li, H., Zhao, H., & Yang, R. (2004). Assessing healthrelated quality of life in individuals with haemophilia in China. Haemophilia, 10, 370-375.
30. Young, N. L., Bradley, C. S., Blanchette, V. S., Wakefield, C. D., Barnard, D., Wu, J.K.M., Mccusker, P. J. (2004). Development of a health-related quality of life measure for boys with haemophilia: the Canadian hemophilia outcomes - Kids Life Assessment Tool (CHO-KLAT). Haemophilia, 10(Suppl. 1), 34-43.