Health-related quality of life in hemophilia: Results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center

Revista Brasileira de Hematologia e Hemoterapia

Volumn 35, Issue 5, 2013, Pages 314-318

  Ferreira, Adriana Aparecida ^a,b   Leite, Isabel Cristina Gonçalves ^b,c   Bustamante Teixeira, Maria Teresa ^b,d   Corrêa, Camila Soares Lima ^b   da Cruz, Danielle Teles ^b   Rodrigues, Daniela de Oliveira Werneck ^a,b,e   Ferreira, Monica Calil Borges ^b,f  

^a FUNDAÇÃO HEMOMINAS   (Brazil)

^b FEDERAL UNIVERSITY OF JUIZ DE FORA   (Brazil)

^c INSTITUTO OSWALDO CRUZ   (Brazil)

^d STATE UNIVERSITY OF RIO DE JANEIRO   (Brazil)

^e UNIVERSIDADE PRESIDENTE ANTÔNIO CARLOS   (Brazil)

^f SUPREMA   (Brazil)

Author keywords

Hemophilia A; Hemophilia B; Joint diseases; Musculoskeletal diseases etiology; Quality of life; Questionnaires

Indexed keywords

EID: 84888404781     PISSN: 15168484     EISSN: None     Source Type: Journal    
DOI: 10.5581/1516-8484.20130108     Document Type: Article

References (25)

1. Bungay KM, Gouveia WA. Assessment of health-related quality of life by health care profissionals. In: Knowlton CH, Penna RP. Pharmaceutical Care. New York: Chapman & Hall; 1996. p.114-30.
2. Garbin LM, Carvalho EC, Canini SR, Dantas RA. Avaliação da qualidade de vida relacionada à saúde em pacientes portadores de hemofilia. Ciênc Cuid Saúde. 2007;6(2):197-205.
3. Beeton K, Neal D, Lee C. An exploration of health-related quality of life in adults with haemophilia-a qualitative perspective. Haemophilia. 2005;11(2):123-32.
4. Bradley CS, Bullinger M, McCusker PJ, Wakefield CD, Blanchette VS, Young NL. Comparing two measures of quality of life for children with haemophilia: the CHO-KLAT and the Haemo-QoL. Haemophilia. 2006;12(6):643-53.
5. Bullinger M. Quality of life-definition, conceptualization and implications-a methodologists view. Theor Surg. 1991;6:143-9.
6. Bullinger M, Globe D, Wasserman J, Young NL, von Mackensen S. Challenges of patient-reported outcome assessment in hemophilia care-a state of the art review. Value Health. 2009;12(5):808-20.
7. Barr RD, Saleh M, Furlong W, Horsman J, Sek J, Pai M, Walker I. Health status and health-related quality of life associated with hemophilia. Am J Hematol. 2002;71(3):152-60.
8. Beeton K. Evaluation of outcome of care in patients with haemophilia. Haemophilia. 2002;8(3):428-34.
9. Gilbert MS. Musculoskeletal complications of haemophilia: the joint. Haemophilia. 2000;6(Suppl 1):34-7.
10. von Mackensen S, Gringeri A; Haem-A-QoL Study Group. Development and pilot testing of a disease-specific quality of life questionnaire for adult patients with haemophilia (Haem-A-QoL). Blood. 2004;104:abstract 2214.
11. Gringeri A, Mantovani L, Mackensen SV. Quality of life assessment in clinical practice in haemophilia treatment. Haemophilia. 2006;12(Suppl 3):22-9.
12. Chevallet L, Weatherall JH, von Mackensen S. Linguistic validation of the Haemo-QoL and Haem-A-QoL for use in international studies [abstract]. Value Health. 2008;11(3):A165.
13. Haemo-QoL Group. How to use the right Haemo-QoL Questionnaire? [Internet]. Hamburg: University Hospital Hamburg-Eppendorf, Centre of Psychosocial Medicine, Institute and Clinic for Medical Psychology; 2000. [cited 2010 Dec 30]. Available from: http://www.haemoqol.de
14. Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Coordenação-Geral de Sangue e Hemoderivados. Perfil das coagulopatias hereditárias no Brasil: 2009-2010 [Internet]. Brasília:MS; 2012 [cited 2012 Dec 21]. Available from: http://bvsms.saude.gov.br/bvs/ publicacoes/perfil_coagulopatias_hereditarias_brasil_2009_2010.pdf
15. Brasil. Ministério da Saúde. Secretaria de Atenção a Saúde. Departamento de Atenção Especializada, Coordenação Geral de Sangue e Hemoderivados. Manual de reabilitação na hemofilia [Internet]. Brasília: MS; 2011 [cited 2012 Nov 21]. (Série A. Normas e Manuais Técnicos). Available from: http://bvsms.saude.gov.br/bvs/publicacoes/ manual_reabilitacao_hemofilia.pdf
16. Nunes AA, Rodrigues BS, Soares EM, Soares S, Miranzi SS. Qualidade de vida de pacientes hemofílicos acompanhados em ambulatório de hematologia. Rev Bras Hematol Hemoter. 2009;31(6):437-43.
17. Almeida AL, Almeida JO, Oliveira JR, Ferreira LB. Qualidade de vida em pacientes portadores de hemofilia. Universitas: Ciências da Saúde. 2011;9(1):61-76.
18. Mercan A, Sarper N, Inanir M, Mercan HI, Zengin E, Kiliç SÇ, et al. Hemophilia-Specific Quality of Life Index (Haemo-QoL and Haem-AQoL questionnaires) of children and adults: result of a single center from Turkey. Pediatr Hematol Oncol. 2010;27(6):449-61.
19. Lipton RA. I need to pay more attention to mild haemophilia patients. Haemophilia. 2011;17(4):704.
20. Den Uijl IE, Mauser Bunschoten EP, Roosendaal G, Schutgens RE, Biesma DH, Grobbee DE, et al. Clinical severity of haemophilia A: does the classification of the 1950s still stand? Haemophilia. 2011;17(6):849-53.
21. Buzzard BM. Physiotherapy, rehabilitation and sports in countries with limited replacement coagulation factor supply. Haemophilia. 2007;13(Suppl 2):44-6.
22. von Mackensen S. Quality of life and sports activities in patients with haemophilia. Haemophilia. 2007;13(Suppl 2):38-43.
23. Soucie JM, Nuss R, Evatt B, Abdelhak A, Cowan L, Hill H, et al. Mortality among males with hemophilia: relations with source of medical care. The Hemophilia Surveillance System Project Investigators. Blood. 2000;96(2):437-42.
24. World Federation of Hemophilia. Key issues in haemophilia treatment. Part 1: products [Internet]. Montreal, Canadá: WFH; 1998. [cited 2010 Jul 21]. Available from: http://www1.wfh.org/publication/files/pdf-1218.pdf
25. Beeton K, Padkin J. Physiotherapy in the management of hemophilia. In: Lee C, Berntorp E, Hoots K, editors. Textbook of Haemophilia. 2nd ed. Oxford: Wiley-Blackwell; 2010. p. 200-6.