Journal ArticleDOI
Health-related quality of life in patients with haemophilia and inhibitors on prophylaxis with anti-inhibitor complex concentrate: results from the Pro-FEIBA study
Alessandro Gringeri,Cindy A. Leissinger,Paolo Cortesi,Hyejin Jo,F. Fusco,Silvia Riva,Bülent Antmen,Erik Berntorp,Chiara Biasoli,Shannon L. Carpenter,Kaan Kavakli,Massimo Morfini,Claude Negrier,Angiola Rocino,W. Schramm,Jerzy Windyga,Bulent Zulfikar,Lorenzo G. Mantovani +17 more
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TLDR
By significantly reducing bleeding frequency in good responders, aPCC prophylaxis improved HRQoL compared with on‐demand treatment.Citations
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Journal ArticleDOI
Toward optimal therapy for inhibitors in hemophilia.
TL;DR: This chapter reviews current tools available for the care of patients with inhibitors and highlights areas where progress is imminent or strongly needed and the prophylactic use of bypassing agents.
Journal ArticleDOI
Health‐related quality of life assessment in haemophilia patients on prophylaxis therapy: a systematic review of results from prospective clinical trials
TL;DR: Prophylaxis is effective in reducing the number of bleeding episodes in patients with severe or moderately severe haemophilia A and B, including those with inhibitors, but data suggest more equivocal effects on health‐related quality of life (HRQoL).
Journal ArticleDOI
Health Related Quality of Life norm data of the general population in Italy: results using the EQ-5D-3L and EQ-5D-5L instruments
TL;DR: HRQoL norm data are now available from the Italian general adult population, to be used as a reference in clinical sector, economic evaluations and in policy setting.
Journal ArticleDOI
Principles of treatment and update of recommendations for the management of haemophilia and congenital bleeding disorders in Italy.
Angiola Rocino,Antonio Coppola,Massimo Franchini,Giancarlo Castaman,Cristina Santoro,Ezio Zanon,Elena Santagostino,Massimo Morfini +7 more
TL;DR: Patients with congenital bleeding disorders (CBD) in Italy are regularly followed by 52 Haemophilia Treatment Centres (HTCs), which are essentially based on home treatment which allows replacement therapy to be carried out as soon as possible and is associated with a higher therapeutic efficacy and a better quality of life.
Journal ArticleDOI
Treatment and Prevention of Bleeds in Haemophilia Patients with Inhibitors to Factor VIII/IX.
TL;DR: A growing body of evidence supports the efficacy of prophylaxis with both bypassing agents in reducing bleeding rates and improving the quality of life, although the impact on long-term outcomes is still unknown.
References
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Journal ArticleDOI
The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection.
John E. Ware,Cathy D. Sherbourne +1 more
TL;DR: A 36-item short-form survey designed for use in clinical practice and research, health policy evaluations, and general population surveys to survey health status in the Medical Outcomes Study is constructed.
Journal Article
EuroQol : a new facility for the measurement of health-related quality of life
The mos 36- item short form health survey (sf- 36) conceptual framework and item selection
Ware J.E.Jr.,C D Sherburne +1 more
Journal ArticleDOI
Modeling Valuations for EuroQol Health States
TL;DR: The model presented in this article appears to predict the values of the states for which there are direct observations and, thus, can be used to interpolate values for theStates for which no direct observations exist.
Journal ArticleDOI
Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia.
Marilyn J. Manco-Johnson,Marilyn J. Manco-Johnson,Thomas C. Abshire,Amy D. Shapiro,Brenda Riske,Michele R. Hacker,Ray F. Kilcoyne,J. David Ingram,M L Manco-Johnson,Sharon Funk,Linda J. Jacobson,Leonard A. Valentino,W. Keith Hoots,George R. Buchanan,Donna DiMichele,Michael Recht,Deborah L Brown,Cindy A. Leissinger,Shirley Bleak,Alan R. Cohen,Prasad Mathew,Alison Matsunaga,Desiree Medeiros,Diane J. Nugent,Gregory Thomas,Alexis A. Thompson,Kevin McRedmond,J. Michael Soucie,Harlan Austin,Bruce L. Evatt +29 more
TL;DR: Prophylaxis with recombinant factor VIII can prevent joint damage and decrease the frequency of joint and other hemorrhages in young boys with severe hemophilia A.
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Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia.
Marilyn J. Manco-Johnson,Marilyn J. Manco-Johnson,Thomas C. Abshire,Amy D. Shapiro,Brenda Riske,Michele R. Hacker,Ray F. Kilcoyne,J. David Ingram,M L Manco-Johnson,Sharon Funk,Linda J. Jacobson,Leonard A. Valentino,W. Keith Hoots,George R. Buchanan,Donna DiMichele,Michael Recht,Deborah L Brown,Cindy A. Leissinger,Shirley Bleak,Alan R. Cohen,Prasad Mathew,Alison Matsunaga,Desiree Medeiros,Diane J. Nugent,Gregory Thomas,Alexis A. Thompson,Kevin McRedmond,J. Michael Soucie,Harlan Austin,Bruce L. Evatt +29 more