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

Volumn 19, Issue 5, 2013, Pages 736-743

  Gringeri, A ^a   Leissinger, C ^b   Cortesi, P A ^c   Jo, H ^d   Fusco, F ^e   Riva, S ^f,g   Antmen, B ^h   Berntorp, E ⁱ   Biasoli, C ^j   Carpenter, S ^k   Kavakli, K ^l   Morfini, M ^m   Negrier C ⁿ   Rocino, A ^o   Schramm, W ^p   Windyga, J ^q   Zulfikar B ^r   Mantovani, L G ^s  

^a UNIVERSITY OF MILAN   (Italy)

^b TULANE UNIVERSITY MEDICAL CENTER   (United States)

^c UNIVERSITY OF MILANO BICOCCA   (Italy)

^d IQVIA   (United States)

^e Fondazione Charta   (Italy)

^f FONDAZIONE IRCCS CA GRANDA OSPEDALE MAGGIORE POLICLINICO   (Italy)

^g UNIVERSITY OF LUGANO   (Switzerland)

^h CUKUROVA UNIVERSITY   (Turkey)

ⁱ LUND UNIVERSITY HOSPITAL   (Sweden)

^j BUFALINI HOSPITAL   (Italy)

^k UNIVERSITY OF MISSOURI KANSAS CITY SCHOOL OF MEDICINE   (United States)

^l EGE UNIVERSITY   (Turkey)

^m CAREGGI UNIVERSITY HOSPITAL   (Italy)

ⁿ UNIVERSITÉ LYON 1   (France)

^o San Giovanni Bosco Hospital   (Italy)

^p UNIVERSITY OF MUNICH   (Germany)

^q INSTITUTE OF HEMATOLOGY AND TRANSFUSION MEDICINE   (Poland)

^r ISTANBUL UNIVERSITY   (Turkey)

^s UNIVERSITY OF NAPLES FEDERICO II   (Italy)

more..

Author keywords

Activated prothrombin complex concentrate; Haemophilia; Health related quality of life; Inhibitors; Prophylaxis

Indexed keywords

ACTIVATED PROTHROMBIN COMPLEX; RECOMBINANT BLOOD CLOTTING FACTOR 7A; RECOMBINANT BLOOD CLOTTING FACTOR 8;

ABSENTEEISM; ADOLESCENT; ADULT; AGED; ARTICLE; BLEEDING; CHILD; CLINICAL ARTICLE; CONTROLLED STUDY; CROSSOVER PROCEDURE; EQ 5D QUESTIONNAIRE; HEMOPHILIA; HEMOPHILIA A; HUMAN; PRESCHOOL CHILD; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; RANDOMIZED CONTROLLED TRIAL; SCHOOL CHILD; SHORT FORM 36; TREATMENT RESPONSE; VISUAL ANALOG SCALE;

ACTIVATED PROTHROMBIN COMPLEX CONCENTRATE; HAEMOPHILIA; HEALTH-RELATED QUALITY OF LIFE; INHIBITORS; PROPHYLAXIS;

ADOLESCENT; ADULT; AGED; CHILD; CHILD, PRESCHOOL; CROSS-OVER STUDIES; FACTOR VIII; FEMALE; HEMOPHILIA A; HUMANS; ISOANTIBODIES; MALE; MIDDLE AGED; PROSPECTIVE STUDIES; PROTHROMBIN; QUALITY OF LIFE; QUESTIONNAIRES; YOUNG ADULT;

EID: 84883053042     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/hae.12178     Document Type: Article

References (32)

1. Iorio A, Halimeh S, Holzhauer S et al. Rate of inhibitor development in previously untreated hemophilia A patients treated with plasma-derived or recombinant factor VIII concentrates: a systematic review. J Thromb Haemost 2010; 8: 1256-65.
2. Berntorp E, Shapiro A, Astermark J et al. Inhibitor treatment in haemophilias A and B: summary statement for the 2006 international consensus conference. Haemophilia 2006; 12(Suppl 6): 1-7.
3. Paisley S, Wight J, Currie E, Knight C. The management of inhibitors in haemophilia A: introduction and systematic review of current practice. Haemophilia 2003; 9: 405-17.
4. Colvin BT, Astermark J, Fischer K et al. European principles of haemophilia care. Haemophilia 2008; 14: 361-74.
5. Mariani G, Kroner B. International immune tolerance registry, 1997 update. Vox Sang 1999; 77(Suppl 1): 25-7.
6. DiMichele DM, Kroner BL. The North American Immune Tolerance Registry: practices, outcomes, outcome predictors. Thromb Haemost 2002; 87: 52-7.
7. Leissinger CA. Prevention of bleeds in hemophilia patients with inhibitors: emerging data and clinical direction. Am J Hematol 2004; 77: 187-93.
8. Pergantou H, Matsinos G, Papadopoulos A, Platokouki H, Aronis S. Comparative study of validity of clinical, X-ray and magnetic resonance imaging scores in evaluation and management of haemophilic arthropathy in children. Haemophilia 2006; 12: 241-7.
9. Morfini M, Haya S, Tagariello G et al. European study on orthopaedic status of haemophilia patients with inhibitors. Haemophilia 2007; 13: 606-12.
10. Gringeri A, Mantovani LG, Scalone L, Mannucci PM, 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.
11. Quintana-Molina M, Martinez-Bahamonde F, Gonzalez-Garcia E et al. Surgery in haemophilic patients with inhibitor: 20 years of experience. Haemophilia 2004; 10(Suppl 2): 30-40.
12. Rodriguez-Merchan EC. Surgery in haemophilic patients with inhibitors. Haemophilia 2004; 10: 1-2.
13. Manco-Johnson MJ, Abshire TC, Shapiro AD et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med 2007; 357: 535-44.
14. Gringeri A, Lundin B, von Mackensen S, Mantovani L, Mannucci PM. A randomized clinical trial of prophylaxis in children with hemophilia A (the ESPRIT Study). J Thromb Haemost 2011; 9: 700-10.
15. Leissinger C, Gringeri A, Antmen B et al. Anti-inhibitor coagulant complex prophylaxis in hemophilia with inhibitors. N Engl J Med 2011; 365: 1684-92.
16. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30: 473-83.
17. EuroQol-a new facility for the measurement of health-related quality of life. The EuroQol Group. Health Policy 1990; 16: 199-208.
18. Hoots WK, Ebbesen LS, Konkle BA et al. Secondary prophylaxis with recombinant activated factor VII improves health-related quality of life of haemophilia patients with inhibitors. Haemophilia 2008; 14: 466-75.
19. Royal S, Schramm W, Berntorp E et al. Quality-of-life differences between prophylactic and on-demand factor replacement therapy in European haemophilia patients. Haemophilia 2002; 8: 44-50.
20. Miners AH, Sabin CA, Tolley KH, Jenkinson C, Kind P, Lee CA. Assessing health-related quality-of-life in individuals with haemophilia. Haemophilia 1999; 5: 378-85.
21. Aznar JA, Magallon M, Querol F, Gorina E, Tusell JM. The orthopaedic status of severe haemophiliacs in Spain. Haemophilia 2000; 6: 170-6.
22. Molho P, Rolland N, Lebrun T et al. Epidemiological survey of the orthopaedic status of severe haemophilia A and B patients in France. The French Study Group. secretariat.haemophiles@cch.ap-hop-paris.fr. Haemophilia 2000; 6: 23-32.
23. 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. Haemophilia 2001; 7: 53-63.
24. Gringeri A, Mantovani L, Mackensen SV. Quality of life assessment in clinical practice in haemophilia treatment. Haemophilia 2006; 12(Suppl 3): 22-9.
25. Scalone L, Mantovani LG, Mannucci PM, Gringeri A. Quality of life is associated to the orthopaedic status in haemophilic patients with inhibitors. Haemophilia 2006; 12: 154-62.
26. Khawaji M, Astermark J, Von Mackensen S, Åkesson K, Berntorp E. Bone density and health-related quality of life in adult patients with severe haemophilia. Haemophilia 2011; 17: 304-11.
27. Kind P, Dolan P, Gudex C, Williams A. Variations in population health status: results from a United Kingdom national questionnaire survey. BMJ 1998; 316: 736-41.
28. Dolan P. Modeling valuations for EuroQol health states. Med Care 1997; 35: 1095-108.
29. Badia X, Roset M, Herdman M, Kind P. A comparison of United Kingdom and Spanish general population time trade-off values for EQ-5D health states. Med Decis Making 2001; 21: 7-16.
30. Ware JE, Kosinski M, Bjorner JB. User's Manual for the SF-36v2™ Health Survey - Second Edition. Lincoln, RI: QualityMetric Health Outcomes Solutions, 2007.
31. Stonebraker JS, Bolton-Maggs PH, Soucie JM, Walker I, Brooker M. A study of variations in the reported haemophilia A prevalence around the world. Haemophilia 2010; 16: 20-32.
32. Louis TA, Lavori PW, Bailar JC 3rd, Polansky M. Crossover and self-controlled designs in clinical research. N Engl J Med 1984; 310: 24-31.