Quality of Life in Hemophilia

Current and Future Issues in Hemophilia Care

Volumn , Issue , 2011, Pages 49-52

  Remor, Eduardo ^a  

^a UNIVERSIDAD AUTÓNOMA DE MADRID   (Spain)

Author keywords

A36 Hemofilia QoL; Assessment; Hemophilia; Patient reported outcome; Psychological burden; Quality of life

Indexed keywords

EID: 84886132113     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1002/9781119979401.ch11     Document Type: Chapter

References (17)

1. Ravens-Sieberer U.Measuring andmonitoring quality-of-life in population surveys: still a challenge for public health research. Soz.-Pr̈aventivmed 2001;46:201-4.
2. Revicki DA, Osoba D, Fairclough D, Barofsky I, Berzon I, Leidy NK, et al. Recommendations on health-related quality of life research to support labeling and promotional claims in the United States. Qual Life Res 2000;9:887-900.
3. Bullinger M. Quality of life-definition, conceptualization and implications-a methodologist's view. Thero Surg 1991;6:143-9.
4. Remor E., Young NI, von Mackensen S, Lopatina EG. Diseasespecific quality of life measurement tools for haemophilia patients. Haemophilia 2004;10 (Suppl. 4): 30-34.
5. Remor E. Desarrollo de una medida espećifica para la evaluacíon de la calidad de vida en pacientes adultos viviendo con hemofilia en Aḿerica-Latina: elHemolatin-QoL.RInteramPsicol 2005;39:211-20.
6. BullingerM, vonMackensen S, Fisher K, KhairK,PetersenC,Ravens-Sieberer U, et al. Pilot testing of the Haemo-QoL quality of life questionnaire for haemophiliac children in six European countries. Haemophilia 2002;8 (Suppl. 2): 47-54.
7. von Mackensen S, Bullinger M and the 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 (Suppl. 1): 17-25.
8. Young NL, Bradley CS, Blanchette V, Wakefield CD, Baranrd D, Wu JK, et al. Development of a health related quality of life measure for boys with haemophilia: the Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT).Haemophilia 2004;10 (Suppl. 1): 34-43.
9. Arranz P, Remor E, Quintana M, Villar A, Diaz JL, Moreno M, et al. Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia. Haemophilia 2004;10:376-82.
10. Remor E, Arranz P, Quintana M, Villar A, Jimenez-Yuste V, Diaz JL, et al. Psychometric field study of the new haemophilia quality of life questionnaire for adults: The 'Hemofilia-QoL'. Haemophilia 2005;11:603-610.
11. von Mackensen S, Scalone L, Ravera S, Mantovani L, Gringeri A. Assessment of health-related quality of life in patients with haemophilia with the newly developed haemophilia-specific instrument (Haem-A-QoL). Value Health 2005;8: A127 [abstract PHM5].
12. Guerois C, Lambert T, Peynet J, Fressinaud E, Chambost H, Trudeau E. Assessment of quality of life in hemophilia population: validation of theQUAL-HEMO, a French haemophilia age-group specific quality of life questionnaire. Haemophilia 2006;12 (Suppl. 2): PO804.
13. Rentz A, Flood E, Altisent C, Bullinger M, Klamroth R, Garrido RP, et al. Cross-cultural development and psychometric evaluation of a patient-reported health-related quality of life questionnaire for adults with haemophilia. Haemophilia 2008;14:1023-34.
14. Remor E. Predictors of treatment difficulties and satisfaction with hemophilia therapy in adult patients. J Coagul Disord 2010; The print version of the journal was concealed. The paper is available online at the follow URL.http://www.slm-hematology.com/uploads/media/JCD10022-Predictors of Treatment Difficulties and Satisfaction With Hemophilia Therapy in Adult Patients.pdf.
15. Remor E, Arranz P, Miller R. Psychosocial impact of inhibitors on haemophilia patients' quality of life. In: Rodriguez-Merchan EC, Lee CA, eds. Inhibitors in Patients with Haemophilia. Oxford: Blackwell Science. 2002:187-92.
16. Morfini M,Haya S, TagaraielloG, Pollman H, QuintanaM, Siegmund B, et al. European study on orthopaedic status of haemophilia patients with inhibitors. Haemophilia 2007;13:606-612.
17. Lindvall K, Colstrup L, Loogna K, Wollter IM, Gronhaug S. Knowledge of disease and adherence in adult patients with hemophilia. Hemophilia 2010;16:592-6.