European retrospective study of real‐life haemophilia treatment
Introduction Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available. Aim To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia...
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| Published in | Haemophilia : the official journal of the World Federation of Hemophilia Vol. 23; no. 1; pp. 105 - 114 |
|---|---|
| Main Authors | , , , , , , , , , , , , , , , , , , |
| Format | Journal Article |
| Language | English |
| Published |
England
Wiley Subscription Services, Inc
01.01.2017
Wiley |
| Subjects | |
| Online Access | Get full text |
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| Abstract | Introduction
Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available.
Aim
To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe.
Methods
Non‐interventional, 12‐month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels ≤5 IU dL−1, without inhibitors, were included. Data were summarized descriptively.
Results
In total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL−1) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on‐demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg−1 per week, across countries. Most patients on prophylaxis were treated ≥3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on‐demand‐treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0.
Conclusion
Treatment practice varied greatly between centres and countries and patients treated on‐demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care. |
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| AbstractList | Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available.AIM:To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe.METHODS:Non-interventional, 12-month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels ≤5 IU dL-1 , without inhibitors, were included. Data were summarized descriptively.RESULTS:In total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL-1 ) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on-demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg-1 per week, across countries. Most patients on prophylaxis were treated ≥3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on-demand-treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0.CONCLUSION:Treatment practice varied greatly between centres and countries and patients treated on-demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care. Introduction Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available. Aim To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe. Methods Non-interventional, 12-month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels less than or equal to 5 IU dL super(-1), without inhibitors, were included. Data were summarized descriptively. Results In total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL super(-1)) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on-demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg super(-1) per week, across countries. Most patients on prophylaxis were treated greater than or equal to 3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on-demand-treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0. Conclusion Treatment practice varied greatly between centres and countries and patients treated on-demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care. Introduction: Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available. Aim: To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe. Methods: Non-interventional, 12-month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels ≤5 IU dL-1, without inhibitors, were included. Data were summarized descriptively. Results: In total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL-1) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on-demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg-1 per week, across countries. Most patients on prophylaxis were treated ≥3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on-demand-treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0. Conclusion: Treatment practice varied greatly between centres and countries and patients treated on-demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care. Introduction Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available. Aim To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe. Methods Non‐interventional, 12‐month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels ≤5 IU dL−1, without inhibitors, were included. Data were summarized descriptively. Results In total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL−1) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on‐demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg−1 per week, across countries. Most patients on prophylaxis were treated ≥3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on‐demand‐treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0. Conclusion Treatment practice varied greatly between centres and countries and patients treated on‐demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care. Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available.INTRODUCTIONHaemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available.To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe.AIMTo provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe.Non-interventional, 12-month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels ≤5 IU dL-1 , without inhibitors, were included. Data were summarized descriptively.METHODSNon-interventional, 12-month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels ≤5 IU dL-1 , without inhibitors, were included. Data were summarized descriptively.In total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL-1 ) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on-demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg-1 per week, across countries. Most patients on prophylaxis were treated ≥3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on-demand-treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0.RESULTSIn total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL-1 ) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on-demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg-1 per week, across countries. Most patients on prophylaxis were treated ≥3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on-demand-treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0.Treatment practice varied greatly between centres and countries and patients treated on-demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care.CONCLUSIONTreatment practice varied greatly between centres and countries and patients treated on-demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care. Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency are often not available. To provide an overview of the FVIII/FIX treatment practice and outcome for patients with haemophilia A (HA) or haemophilia B (HB) across Europe. Non-interventional, 12-month retrospective study where anonymized data were retrieved from haemophilia centres/registers in Belgium, France, Germany, Italy, Spain, Sweden and the United Kingdom. Male patients (all ages) receiving coagulation factor treatment 24 months prior to the study, with basal FVIII/FIX levels ≤5 IU dL , without inhibitors, were included. Data were summarized descriptively. In total, 1346 patients with HA and 312 with HB were included in the analysis; 75% and 57% had severe disease (FVIII/FIX < 1 IU dL ) respectively. Prophylaxis was most common for severe haemophilia, especially for children, whereas on-demand treatment was more common for moderate haemophilia in most countries. The mean (SD) prescribed prophylactic treatment ranged from 67.9 (30.4) to 108.4 (78.1) (HA) and 32.3 (10.2) to 97.7 (32.1) (HB) IU kg per week, across countries. Most patients on prophylaxis were treated ≥3 times/week (HA) or two times/week (HB). The median annual bleeding rate (ABR) for patients on prophylaxis ranged from 1.0 to 4.0 for severe HA, and from 1.0 to 6.0 for severe HB, while those with moderate haemophilia generally had slightly higher ABRs. Median ABRs for on-demand-treated severe HA ranged from 4.5 to 18.0, and for HB, 1.5 to 14.0. Treatment practice varied greatly between centres and countries and patients treated on-demand and prophylactically both experienced bleeds, emphasizing the need for further optimization of care. |
| Author | Hermans, C. Santagostino, E. Álvarez‐Román, MT Tosetto, A. Dolan, G. Schved, J.‐F. Lethagen, S. Boban, A. Albert, T. Berntorp, E. Parra Lopez, R. Linari, S. Scholz, U. Ludlam, C. Trossaërt, M. Hay, C. Castaman, G. Oldenburg, J. Holmström, M. |
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| ContentType | Journal Article |
| Copyright | 2016 The Authors. Published by John Wiley & Sons Ltd. 2016 The Authors. Haemophilia Published by John Wiley & Sons Ltd. 2017 John Wiley & Sons Ltd Distributed under a Creative Commons Attribution 4.0 International License |
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| CorporateAuthor | Klinisk koagulationsmedicin, Malmö Faculty of Medicine Institutionen för translationell medicin Department of Translational Medicine Lunds universitet Medicinska fakulteten Lund University Clinical Coagulation, Malmö |
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| Keywords | factor IX treatment haemophilia B haemophilia A factor VIII retrospective study |
| Language | English |
| License | Attribution-NonCommercial-NoDerivs http://creativecommons.org/licenses/by-nc-nd/4.0 2016 The Authors. Haemophilia Published by John Wiley & Sons Ltd. Distributed under a Creative Commons Attribution 4.0 International License: http://creativecommons.org/licenses/by/4.0 |
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| PublicationTitle | Haemophilia : the official journal of the World Federation of Hemophilia |
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| References | 2013; 19 2013; 122 2007; 357 2016; 127 2011; 17 2015; 125 2014; 12 2006; 122 2011; 9 2003; 9 e_1_2_8_17_1 Lindvall K (e_1_2_8_11_1) 2006; 122 e_1_2_8_13_1 e_1_2_8_14_1 e_1_2_8_15_1 e_1_2_8_16_1 e_1_2_8_2_1 Uijl I (e_1_2_8_3_1) 2014; 12 e_1_2_8_5_1 e_1_2_8_4_1 e_1_2_8_7_1 e_1_2_8_6_1 e_1_2_8_9_1 e_1_2_8_8_1 e_1_2_8_10_1 e_1_2_8_12_1 |
| References_xml | – volume: 19 start-page: 499 year: 2013 end-page: 502 article-title: Is haemophilia B less severe than haemophilia A? publication-title: Haemophilia – volume: 125 start-page: 2038 year: 2015 end-page: 44 article-title: Optimal treatment strategies for hemophilia: achievements and limitations of current prophylactic regimens publication-title: Blood – volume: 9 start-page: 27 issue: Suppl 1 year: 2003 end-page: 31 article-title: Comparing outcomes of different treatment regimens for severe haemophilia publication-title: Haemophilia – volume: 122 start-page: 1129 year: 2013 end-page: 36 article-title: Intermediate‐dose versus high‐dose prophylaxis for severe hemophilia: comparing outcome and costs since the 1970s publication-title: Blood – volume: 9 start-page: 700 year: 2011 end-page: 10 article-title: A randomized clinical trial of prophylaxis in children with hemophilia A (the ESPRIT Study) publication-title: J Thromb Haemost – volume: 12 start-page: 1935 year: 2014 end-page: 9 article-title: Definitions in hemophilia: communication from the SSC of the ISTH publication-title: J Thromb Haemost – volume: 12 start-page: s330 issue: Suppl 1 year: 2014 end-page: 6 article-title: Outcome in moderate haemophilia publication-title: Blood Transfus – volume: 357 start-page: 535 year: 2007 end-page: 44 article-title: Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia publication-title: N Engl J Med – volume: 17 start-page: 2 year: 2011 end-page: 10 article-title: Implications of coagulation factor VIII and IX pharmacokinetics in the prophylactic treatment of haemophilia publication-title: Haemophilia – volume: 127 start-page: 3073 year: 2016 end-page: 81 article-title: Men with severe hemophilia in the United States: birth cohort analysis of a large national database publication-title: Blood – volume: 19 start-page: e1 year: 2013 end-page: 47 article-title: Guidelines for the management of hemophilia publication-title: Haemophilia – volume: 19 start-page: 790 year: 2013 end-page: 8 article-title: Rapid musculoskeletal ultrasound for painful episodes in adult haemophilia patients publication-title: Haemophilia – volume: 122 start-page: 853 year: 2006 article-title: UMAS hemophilia database publication-title: Stud Health Technol Inform – volume: 19 start-page: 27 year: 2013 end-page: 34 article-title: Short‐term low‐dose secondary prophylaxis for severe/moderate haemophilia A children is beneficial to reduce bleed and improve daily activity, but there are obstacle in its execution: a multi‐centre pilot study in China publication-title: Haemophilia – volume: 19 start-page: e239 year: 2013 end-page: 47 article-title: Haemophilia care in Europe – a survey of 35 countries publication-title: Haemophilia – ident: e_1_2_8_10_1 – ident: e_1_2_8_6_1 doi: 10.1111/j.1538-7836.2011.04214.x – ident: e_1_2_8_15_1 doi: 10.1111/hae.12133 – ident: e_1_2_8_2_1 doi: 10.1111/j.1365-2516.2012.02909.x – ident: e_1_2_8_13_1 doi: 10.1182/blood-2015-10-675140 – volume: 12 start-page: s330 issue: 1 year: 2014 ident: e_1_2_8_3_1 article-title: Outcome in moderate haemophilia publication-title: Blood Transfus – ident: e_1_2_8_7_1 doi: 10.1056/NEJMoa067659 – ident: e_1_2_8_9_1 doi: 10.1111/hae.12125 – ident: e_1_2_8_12_1 doi: 10.1111/jth.12672 – ident: e_1_2_8_5_1 doi: 10.1111/j.1365-2516.2012.02926.x – ident: e_1_2_8_17_1 doi: 10.1111/hae.12175 – ident: e_1_2_8_16_1 doi: 10.1111/j.1365-2516.2010.02370.x – ident: e_1_2_8_4_1 doi: 10.1182/blood-2012-12-470898 – ident: e_1_2_8_8_1 doi: 10.1182/blood-2015-01-528414 – ident: e_1_2_8_14_1 doi: 10.1046/j.1365-2516.9.s1.10.x – volume: 122 start-page: 853 year: 2006 ident: e_1_2_8_11_1 article-title: UMAS hemophilia database publication-title: Stud Health Technol Inform |
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Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection... Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection frequency... Introduction Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and injection... Introduction: Haemophilia treatment varies significantly between individuals, countries and regions and details of bleed rates, factor consumption and... |
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| SubjectTerms | Adult Bleeding Children Clinical Medicine Coagulation Europe Factor IX Factor IX deficiency Factor VIII Haemophilia A Haemophilia B Hematologi Hematology Hemophilia Hemophilia A - therapy Human health and pathology Humans Klinisk medicin Life Sciences Male Medical and Health Sciences Medicin och hälsovetenskap Prophylaxis Retrospective Studies Retrospective study Treatment |
| Title | European retrospective study of real‐life haemophilia treatment |
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