The social burden and quality of life of patients with haemophilia in Italy

Blood Transfusion

Volumn 12, Issue SUPPL. 3, 2014, Pages

  Kodra, Yllka ^a   Cavazza, Marianna ^b   Schieppati, Arrigo ^c,d   De Santis, Marta ^a   Armeni, Patrizio ^b   Arcieri, Romano ^e   Calizzani, Gabriele ^a   Fattore, Giovanni ^b   Manzoli, Lamberto ^e   Mantovani, Lorenzo ^e   Taruscio, Domenica ^a  

^a ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^b BOCCONI UNIVERSITY   (Italy)

^c MARIO NEGRI INSTITUTE FOR PHARMACOLOGICAL RESEARCH   (Italy)

^d PAPA GIOVANNI XXIII HOSPITAL   (Italy)

^e Italian Federation of Haemophilia Societies (FedEmo)   (Italy)

Author keywords

Cost of illness; Haemophilia; Quality of life

Indexed keywords

ADOLESCENT; ADULT; ANXIETY; ARTICLE; CHILD; COST OF ILLNESS; DRUG COST; HEALTH CARE COST; HEALTH CARE UTILIZATION; HEMOPHILIA; HUMAN; ITALY; MAJOR CLINICAL STUDY; QUALITY OF LIFE; QUESTIONNAIRE; COMPLICATION; COST; CROSS-SECTIONAL STUDY; ECONOMICS; ETIOLOGY; FEMALE; HEMOPHILIA A; MALE; SOCIOECONOMICS;

ADULT; ANXIETY; COST OF ILLNESS; COSTS AND COST ANALYSIS; CROSS-SECTIONAL STUDIES; FEMALE; HEMOPHILIA A; HUMANS; ITALY; MALE; QUALITY OF LIFE; SOCIOECONOMIC FACTORS;

EID: 84901596180     PISSN: 17232007     EISSN: None     Source Type: Journal    
DOI: 10.2450/2014.0042-14s     Document Type: Article

References (39)

1. Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al. Treatment Guidelines Working Group on Behalf of The World Federation Of Haemophilia. Guidelines for the management of haemophilia. Haemophilia 2013; 19: e1-47.
2. Abbonizio A, Giampaolo A, Arcieri R, et al. Registro Nazionale delle Coagulopatie Congenite. Rapporto 2011. Rapporti ISTISAN 2012; 55/12: iii, p 63.
3. Italian Association of Haemophilia Centres (AICE). Individuals with Factor VIII Deficiency and Individuals with Factor IX Deficiency. Data Summaries 2012 Dec. Available at: http://www.aiceonline.it/emocard/summaries.htm. Accessed on 20/01/2014.
4. von Mackensen S, Gringeri A, Siboni SM,et al. Health-related quality of life and psychological well-being in elderly patients with haemophilia. Haemophilia 2012; 18: 345-52.
5. Tagliaferri A, Rivolta GF, Iorio A, et al. Mortality and causes of death in Italian persons with haemophilia, 1990-2007. Haemophilia 2010; 16: 437-46.
6. Klamroth R, Pollmann H, Hermans C, 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. Haemophilia 2011; 17: 412.
7. Gringeri A, Mantovani LG, Scalone L, et al. for the COCIS Study Group. Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study Group. Blood 2003; 102: 2358-63. (Pubitemid 37193570)
8. Naraine VS, Risebrough NA, Oh P, et al. Health-related quality-of-life treatments for severe haemophilia: utility measurements using the Standard Gamble technique. Haemophilia 2002; 8: 112-120. (Pubitemid 35238064)
9. Franchini M, Mannucci PM. Co-morbidities and quality of life in elderly persons with haemophilia. Br J Haematol. 2010; 148: 522-33.
10. Gringeri A, von Mackensen S, Auerswald G, et al. Health status and health-related quality of life of children with haemophilia from six West European countries. Haemophilia 2004; 10 (Suppl 1): 26-33. (Pubitemid 40045397)
11. Pollak E, Mühlan H, von Mackensen S, et al. The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia. Haemophilia 2006; 12: 384-92.
12. Szende A, Schramm W, Flood E, et al. Health-related quality of life assessment in adult haemophilia patients: a systematic review and evaluation of instruments. Haemophilia 2003; 9: 678-87. (Pubitemid 37540808)
13. Beeton K, Neal D, Watson T, Lee CA. Parents of children with haemophilia - a transforming experience. Haemophilia 2007; 13: 570-9. (Pubitemid 47337999)
14. Wiedebusch S, Pollmann H, Siegmund B, Muthny FA. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia 2008; 14: 1014-22.
15. Shaw D, Riley GA. The impact on parents of developments in the care of children with bleeding disorders. Haemophilia 2008; 14: 65-7.
16. Gringeri A, Mantovani LG, Scalone L, et al. Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study Group. Blood. 2003; 102: 2358-63. (Pubitemid 37193570)
17. Miners AH, Sabin CA, Tolley KH, et al. Cost-utility analysis of primary prophylaxis versus treatment on-demand for individuals with severe haemophilia. Pharmacoeconomics 2002; 20: 759-74. (Pubitemid 35034444)
18. Steen Carlsson K, Höjgård S, Glomstein A, et al. On-demand vs. prophylactic treatment for severe haemophilia in Norway and Sweden: differences in treatment characteristics and outcome. Haemophilia 2003; 9: 555-66. (Pubitemid 37236090)
19. Odeyemi IAO, Guest JF. Modelling the economic impact of recombinant activated factor VII compared and activated prothrombin-complex concentrate in the home treatment of a mild to moderate bleed in adults with inhibitors to clotting factors VIII and IX at a comprehensive care centre in the UK. Journal of Medical Economics 2002; 5: 119-33. (Pubitemid 37237154)
20. Auerswald G, Von Depka Prondzinski M, Ehlken B, et al. Treatment patterns and cost-of-illness of severe haemophilia in patients with inhibitors in Germany. Haemophilia 2004; 10: 499-508. (Pubitemid 39317760)
21. Globe DR, Curtis RG, Koerper MA, HUGS Steering Committee. Utilization of care in haemophilia: a resource-based method for cost analysis from the Haemophilia Utilization Group Study (HUGS). Haemophilia 2004; 10 (Suppl 1): 63-70. (Pubitemid 40045402)
22. Nerich V, Tissot E, Faradji A, et al. Cost-of-illness study of severe haemophilia A and B in five French haemophilia treatment centres. Pharm World Sci 2008; 30: 287-92.
23. Johnson K, Zheng Yi K. Costs of Care in Hemophilia and Possible Implications of Health Care Reform. ASH Education Book. December 10, 2011; vol. 2011 no. 1: 413-8.
24. Scalone L, Gringeri A, Von Mackensen S, et al. Quality o of life in haemophilic patients without inhibitors: the COCHE Study. Value in Health 2005; 8: A14.
25. Tarricone R. Cost-of-illness analysis: What room in health economics? Health Policy 2006; 77: 51-63.
26. Bartoli S, Cantù E. Le analisi dei costi per la determinazione delle tariffe: esperienze regionali a confronto. In: Cantù E. editor. Rapporto OASI 2009. L'aziendalizzazione della sanità in Italia. Milan: Egea; 2009; 221-48.
27. Van der Berg B, Brouwe B, Koopmanschap M. Economic valuation of informal care: an overview of methods and application. Eur J Health Ec 2004; 5: 36-45. (Pubitemid 38315895)
28. th ed. Oxford University Press, Oxford 2005.
29. Badia X, Roset M, Herdman M, Kind P. A comparison of United Kingdom and Spanish general population time tradeoff values for EQ-5D health states. Med Decis Making. 2001; 21: 7-16. (Pubitemid 32245026)
30. Gringeri A, Leissinger C, Cortesi PA, et al. Health-related quality of life in patients with haemophilia and inhibitors on prophylaxis with anti-inhibitor complex concentrate: results from the Pro-FEIBA study. Haemophilia 2013; 19: 736-43.
31. Windyga J, Indyga VW, Lin J, et al. Improvement in health-related quality of life with recombinant factor IX prophylaxis in severe or moderately. Haemophilia 2013; 20: 1-7.
32. Farrugia A, Cassar J, Kimber K et al. Treatment for life for severe haemophilia A. A cost-utility model for prophylaxis vs. on-demand treatment. Haemophilia 2013; 19: e228-38.
33. Lichtenberg FR. Effects of New Drugs on Overall Health Spending: Frank Lichtenberg responds. Health Aff (Millwood). 2007; 26: 887-90.
34. Santerre RE. National and international tests of the new drug cost offset theory. Southern Economic Journal 2011; 77: 1033-43.
35. Mannucci PM, Schutgens REG, Santagostino E, Mauser-Bunschoten EP. How I treat age-related morbidities in elderly persons with hemophilia. Blood 2009; 114: 5256-63.
36. Konkle BA. The aging patient with hemophilia. Am J Hematol. 2012; 87 (Suppl 1): S27-32.
37. Philipp C. The aging patient with hemophilia: complications, comorbidities, and management issues. Hematology Am Soc Hematol Educ Program. 2010; 2010: 191-6.
38. Ministry of Economy and Finance. Tendenze di medio lungo periodo del sistema pensionistico e socio-sanitario 2013. Ragioneria Generale dello Stato 2013 May; Rapporto n. 14. Available at:http://www.rgs.mef.gov.it/VERSIONE-I/ Attivit--i/Spesa-soci/Attivita-di-previsione-RGS/2013. Accessed on 30/01/2014.
39. Diabetes American Association. Economic Costs of Diabetes in the U.S. in 2012. Diabetes Care. 2013; 36: 1033-46.