The need for speed in the management of haemophilia patients with inhibitors
Identifieur interne : 001895 ( Istex/Corpus ); précédent : 001894; suivant : 001896The need for speed in the management of haemophilia patients with inhibitors
Auteurs : S. Z. Šalek ; G. M. Benson ; I. Elezovi ; V. Krenn ; R. C. R. Ljung ; M. Morfini ; E. Remor ; E. Santagostino ; B. S RensenSource :
- Haemophilia [ 1351-8216 ] ; 2011-01.
English descriptors
- KwdEn :
Abstract
Summary. Rapid control of bleeding is the key to reducing bleeding complications and thereby preserving joint and musculoskeletal function in haemophilia patients with inhibitors. However, this requires early diagnosis following the onset of bleeding and strategies for rapid treatment in an outpatient setting. Overarching themes on the need for speed in managing bleeds in haemophilia patients were examined by a panel of clinicians experienced in managing inhibitor patients and joint disease during the Third Zürich Haemophilia Forum on 8 May 2009. This report summarizes the opinions of the panel on how to achieve rapid bleeding control in inhibitor patients and areas that were identified by the panel for future research or as needing new consensus guidelines. The consensus was that home treatment should be established for haemophilia patients with inhibitors, as it is associated with a faster time to treatment, as well as improvements in the quality of life of patients and their carers. In addition, as improved haemostatic control now allows inhibitor patients to participate in a wider range of physical activities, specific guidelines are required on which types of sport and work are appropriate. It was agreed that clear, systematic approaches are needed for early diagnosis of joint and muscle bleeds in inhibitor patients, which could facilitate rapid treatment. There may be opportunities for exploiting new diagnostic techniques from osteoarthritis to enable earlier diagnosis of haemophilic arthropathy. Overall, it was concluded that greater emphasis should be placed on education and patients’ psychological needs, to enable inhibitor patients to cope up more effectively with their disease.
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DOI: 10.1111/j.1365-2516.2010.02265.x
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Elezovi</name><affiliation><mods:affiliation>Institute of Haematology, Clinical Centre of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia</mods:affiliation></affiliation></author><author><name sortKey="Krenn, V" sort="Krenn, V" uniqKey="Krenn V" first="V." last="Krenn">V. Krenn</name><affiliation><mods:affiliation>Centre for Histologie, Zytologie and Molecular Diagnostics, Trier, Germany</mods:affiliation></affiliation></author><author><name sortKey="Ljung, R C R" sort="Ljung, R C R" uniqKey="Ljung R" first="R. C. R." last="Ljung">R. C. R. Ljung</name><affiliation><mods:affiliation>Department of Paediatrics and Coagulation Disorders, University Hospital Malmö, Malmö, Sweden</mods:affiliation></affiliation></author><author><name sortKey="Morfini, M" sort="Morfini, M" uniqKey="Morfini M" first="M." last="Morfini">M. Morfini</name><affiliation><mods:affiliation>Agency for Hemophilia – Reference Center for Inherited Bleeding Disorders of Tuscany, Department of Emergency and Reception, Azienda Ospedaliero Universitaria Careggi, Florence, Italy</mods:affiliation></affiliation></author><author><name sortKey="Remor, E" sort="Remor, E" uniqKey="Remor E" first="E." last="Remor">E. Remor</name><affiliation><mods:affiliation>Department of Psychobiology and Health, Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain</mods:affiliation></affiliation></author><author><name sortKey="Santagostino, E" sort="Santagostino, E" uniqKey="Santagostino E" first="E." last="Santagostino">E. Santagostino</name><affiliation><mods:affiliation>Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, IRCCS Maggiore Hospital, Mangiagalli and Regina Elena Foundation, University of Milan, Milan, Italy</mods:affiliation></affiliation></author><author><name sortKey="S Rensen, B" sort="S Rensen, B" uniqKey="S Rensen B" first="B." last="S Rensen">B. S Rensen</name><affiliation><mods:affiliation>Haemostasis Research Unit, Centre for Haemophilia and Thrombosis, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London School of Medicine, London, UK</mods:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756</idno><date when="2011" year="2011">2011</date><idno type="doi">10.1111/j.1365-2516.2010.02265.x</idno><idno type="url">https://api.istex.fr/document/475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756/fulltext/pdf</idno><idno type="wicri:Area/Istex/Corpus">001895</idno><idno type="wicri:explorRef" wicri:stream="Istex" wicri:step="Corpus" wicri:corpus="ISTEX">001895</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main" xml:lang="en">The need for speed in the management of haemophilia patients with inhibitors</title><author><name sortKey="Salek, S Z" sort="Salek, S Z" uniqKey="Salek S" first="S. Z." last="Šalek">S. Z. Šalek</name><affiliation><mods:affiliation>National Haemophilia Centre, University Hospital Centre Zagreb, Rebro, Zagreb, Croatia</mods:affiliation></affiliation></author><author><name sortKey="Benson, G M" sort="Benson, G M" uniqKey="Benson G" first="G. M." last="Benson">G. M. Benson</name><affiliation><mods:affiliation>Northern Ireland Haemophilia Comprehensive Care Centre, Belfast, Northern Ireland</mods:affiliation></affiliation></author><author><name sortKey="Elezovi, I" sort="Elezovi, I" uniqKey="Elezovi I" first="I." last="Elezovi">I. Elezovi</name><affiliation><mods:affiliation>Institute of Haematology, Clinical Centre of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia</mods:affiliation></affiliation></author><author><name sortKey="Krenn, V" sort="Krenn, V" uniqKey="Krenn V" first="V." last="Krenn">V. Krenn</name><affiliation><mods:affiliation>Centre for Histologie, Zytologie and Molecular Diagnostics, Trier, Germany</mods:affiliation></affiliation></author><author><name sortKey="Ljung, R C R" sort="Ljung, R C R" uniqKey="Ljung R" first="R. C. R." last="Ljung">R. C. R. Ljung</name><affiliation><mods:affiliation>Department of Paediatrics and Coagulation Disorders, University Hospital Malmö, Malmö, Sweden</mods:affiliation></affiliation></author><author><name sortKey="Morfini, M" sort="Morfini, M" uniqKey="Morfini M" first="M." last="Morfini">M. Morfini</name><affiliation><mods:affiliation>Agency for Hemophilia – Reference Center for Inherited Bleeding Disorders of Tuscany, Department of Emergency and Reception, Azienda Ospedaliero Universitaria Careggi, Florence, Italy</mods:affiliation></affiliation></author><author><name sortKey="Remor, E" sort="Remor, E" uniqKey="Remor E" first="E." last="Remor">E. Remor</name><affiliation><mods:affiliation>Department of Psychobiology and Health, Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain</mods:affiliation></affiliation></author><author><name sortKey="Santagostino, E" sort="Santagostino, E" uniqKey="Santagostino E" first="E." last="Santagostino">E. Santagostino</name><affiliation><mods:affiliation>Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, IRCCS Maggiore Hospital, Mangiagalli and Regina Elena Foundation, University of Milan, Milan, Italy</mods:affiliation></affiliation></author><author><name sortKey="S Rensen, B" sort="S Rensen, B" uniqKey="S Rensen B" first="B." last="S Rensen">B. S Rensen</name><affiliation><mods:affiliation>Haemostasis Research Unit, Centre for Haemophilia and Thrombosis, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London School of Medicine, London, UK</mods:affiliation></affiliation></author></analytic><monogr></monogr><series><title level="j">Haemophilia</title><idno type="ISSN">1351-8216</idno><idno type="eISSN">1365-2516</idno><imprint><publisher>Blackwell Publishing Ltd</publisher><pubPlace>Oxford, UK</pubPlace><date type="published" when="2011-01">2011-01</date><biblScope unit="volume">17</biblScope><biblScope unit="issue">1</biblScope><biblScope unit="page" from="95">95</biblScope><biblScope unit="page" to="102">102</biblScope></imprint><idno type="ISSN">1351-8216</idno></series><idno type="istex">475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756</idno><idno type="DOI">10.1111/j.1365-2516.2010.02265.x</idno><idno type="ArticleID">HAE2265</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">1351-8216</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>arthropathy</term><term>haemophilia</term><term>inhibitors</term><term>muscle bleed</term><term>quality of life</term><term>recombinant activated factor VII</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract">Summary. Rapid control of bleeding is the key to reducing bleeding complications and thereby preserving joint and musculoskeletal function in haemophilia patients with inhibitors. However, this requires early diagnosis following the onset of bleeding and strategies for rapid treatment in an outpatient setting. Overarching themes on the need for speed in managing bleeds in haemophilia patients were examined by a panel of clinicians experienced in managing inhibitor patients and joint disease during the Third Zürich Haemophilia Forum on 8 May 2009. This report summarizes the opinions of the panel on how to achieve rapid bleeding control in inhibitor patients and areas that were identified by the panel for future research or as needing new consensus guidelines. The consensus was that home treatment should be established for haemophilia patients with inhibitors, as it is associated with a faster time to treatment, as well as improvements in the quality of life of patients and their carers. In addition, as improved haemostatic control now allows inhibitor patients to participate in a wider range of physical activities, specific guidelines are required on which types of sport and work are appropriate. It was agreed that clear, systematic approaches are needed for early diagnosis of joint and muscle bleeds in inhibitor patients, which could facilitate rapid treatment. There may be opportunities for exploiting new diagnostic techniques from osteoarthritis to enable earlier diagnosis of haemophilic arthropathy. Overall, it was concluded that greater emphasis should be placed on education and patients’ psychological needs, to enable inhibitor patients to cope up more effectively with their disease.</div></front></TEI><istex><corpusName>wiley</corpusName><author><json:item><name>S. Z. ŠALEK</name><affiliations><json:string>National Haemophilia Centre, University Hospital Centre Zagreb, Rebro, Zagreb, Croatia</json:string></affiliations></json:item><json:item><name>G. M. BENSON</name><affiliations><json:string>Northern Ireland Haemophilia Comprehensive Care Centre, Belfast, Northern Ireland</json:string></affiliations></json:item><json:item><name>I. ELEZOVIĆ</name><affiliations><json:string>Institute of Haematology, Clinical Centre of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia</json:string></affiliations></json:item><json:item><name>V. KRENN</name><affiliations><json:string>Centre for Histologie, Zytologie and Molecular Diagnostics, Trier, Germany</json:string></affiliations></json:item><json:item><name>R. C. R. LJUNG</name><affiliations><json:string>Department of Paediatrics and Coagulation Disorders, University Hospital Malmö, Malmö, Sweden</json:string></affiliations></json:item><json:item><name>M. MORFINI</name><affiliations><json:string>Agency for Hemophilia – Reference Center for Inherited Bleeding Disorders of Tuscany, Department of Emergency and Reception, Azienda Ospedaliero Universitaria Careggi, Florence, Italy</json:string></affiliations></json:item><json:item><name>E. REMOR</name><affiliations><json:string>Department of Psychobiology and Health, Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain</json:string></affiliations></json:item><json:item><name>E. SANTAGOSTINO</name><affiliations><json:string>Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, IRCCS Maggiore Hospital, Mangiagalli and Regina Elena Foundation, University of Milan, Milan, Italy</json:string></affiliations></json:item><json:item><name>B. SØRENSEN</name><affiliations><json:string>Haemostasis Research Unit, Centre for Haemophilia and Thrombosis, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London School of Medicine, London, UK</json:string></affiliations></json:item></author><subject><json:item><lang><json:string>eng</json:string></lang><value>arthropathy</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>haemophilia</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>inhibitors</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>muscle bleed</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>quality of life</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>recombinant activated factor VII</value></json:item></subject><articleId><json:string>HAE2265</json:string></articleId><language><json:string>eng</json:string></language><originalGenre><json:string>article</json:string></originalGenre><abstract>Summary. Rapid control of bleeding is the key to reducing bleeding complications and thereby preserving joint and musculoskeletal function in haemophilia patients with inhibitors. However, this requires early diagnosis following the onset of bleeding and strategies for rapid treatment in an outpatient setting. Overarching themes on the need for speed in managing bleeds in haemophilia patients were examined by a panel of clinicians experienced in managing inhibitor patients and joint disease during the Third Zürich Haemophilia Forum on 8 May 2009. This report summarizes the opinions of the panel on how to achieve rapid bleeding control in inhibitor patients and areas that were identified by the panel for future research or as needing new consensus guidelines. The consensus was that home treatment should be established for haemophilia patients with inhibitors, as it is associated with a faster time to treatment, as well as improvements in the quality of life of patients and their carers. In addition, as improved haemostatic control now allows inhibitor patients to participate in a wider range of physical activities, specific guidelines are required on which types of sport and work are appropriate. It was agreed that clear, systematic approaches are needed for early diagnosis of joint and muscle bleeds in inhibitor patients, which could facilitate rapid treatment. There may be opportunities for exploiting new diagnostic techniques from osteoarthritis to enable earlier diagnosis of haemophilic arthropathy. Overall, it was concluded that greater emphasis should be placed on education and patients’ psychological needs, to enable inhibitor patients to cope up more effectively with their disease.</abstract><qualityIndicators><score>7.82</score><pdfVersion>1.3</pdfVersion><pdfPageSize>595.276 x 788.031 pts</pdfPageSize><refBibsNative>true</refBibsNative><abstractCharCount>1718</abstractCharCount><pdfWordCount>4820</pdfWordCount><pdfCharCount>32419</pdfCharCount><pdfPageCount>8</pdfPageCount><abstractWordCount>257</abstractWordCount></qualityIndicators><title>The need for speed in the management of haemophilia patients with inhibitors</title><refBibs><json:item><host><author></author><title>World Federation of Hemophilia. Guidelines for the Management of Hemophilia. Available at http://www.wfh.org/2/docs/Publications/Diagnosis_and_Treatment/Guidelines_Mng_Hemophilia.pdf. 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needs</title></json:item></refBibs><genre><json:string>article</json:string></genre><host><volume>17</volume><publisherId><json:string>HAE</json:string></publisherId><pages><total>8</total><last>102</last><first>95</first></pages><issn><json:string>1351-8216</json:string></issn><issue>1</issue><genre><json:string>journal</json:string></genre><language><json:string>unknown</json:string></language><eissn><json:string>1365-2516</json:string></eissn><title>Haemophilia</title><doi><json:string>10.1111/(ISSN)1365-2516</json:string></doi></host><categories><wos><json:string>science</json:string><json:string>hematology</json:string></wos><scienceMetrix><json:string>health sciences</json:string><json:string>clinical medicine</json:string><json:string>cardiovascular system & hematology</json:string></scienceMetrix></categories><publicationDate>2011</publicationDate><copyrightDate>2011</copyrightDate><doi><json:string>10.1111/j.1365-2516.2010.02265.x</json:string></doi><id>475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756</id><score>0.15653451</score><fulltext><json:item><extension>pdf</extension><original>true</original><mimetype>application/pdf</mimetype><uri>https://api.istex.fr/document/475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756/fulltext/pdf</uri></json:item><json:item><extension>zip</extension><original>false</original><mimetype>application/zip</mimetype><uri>https://api.istex.fr/document/475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756/fulltext/zip</uri></json:item><istex:fulltextTEI uri="https://api.istex.fr/document/475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756/fulltext/tei"><teiHeader><fileDesc><titleStmt><title level="a" type="main" xml:lang="en">The need for speed in the management of haemophilia patients with inhibitors</title></titleStmt><publicationStmt><authority>ISTEX</authority><publisher>Blackwell Publishing Ltd</publisher><pubPlace>Oxford, UK</pubPlace><availability><p>© 2010 Blackwell Publishing Ltd</p></availability><date>2011</date></publicationStmt><sourceDesc><biblStruct type="inbook"><analytic><title level="a" type="main" xml:lang="en">The need for speed in the management of haemophilia patients with inhibitors</title><author xml:id="author-1"><persName><forename type="first">S. Z.</forename><surname>ŠALEK</surname></persName><affiliation>National Haemophilia Centre, University Hospital Centre Zagreb, Rebro, Zagreb, Croatia</affiliation></author><author xml:id="author-2"><persName><forename type="first">G. M.</forename><surname>BENSON</surname></persName><affiliation>Northern Ireland Haemophilia Comprehensive Care Centre, Belfast, Northern Ireland</affiliation></author><author xml:id="author-3"><persName><forename type="first">I.</forename><surname>ELEZOVIĆ</surname></persName><affiliation>Institute of Haematology, Clinical Centre of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia</affiliation></author><author xml:id="author-4"><persName><forename type="first">V.</forename><surname>KRENN</surname></persName><affiliation>Centre for Histologie, Zytologie and Molecular Diagnostics, Trier, Germany</affiliation></author><author xml:id="author-5"><persName><forename type="first">R. C. R.</forename><surname>LJUNG</surname></persName><affiliation>Department of Paediatrics and Coagulation Disorders, University Hospital Malmö, Malmö, Sweden</affiliation></author><author xml:id="author-6"><persName><forename type="first">M.</forename><surname>MORFINI</surname></persName><affiliation>Agency for Hemophilia – Reference Center for Inherited Bleeding Disorders of Tuscany, Department of Emergency and Reception, Azienda Ospedaliero Universitaria Careggi, Florence, Italy</affiliation></author><author xml:id="author-7"><persName><forename type="first">E.</forename><surname>REMOR</surname></persName><affiliation>Department of Psychobiology and Health, Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain</affiliation></author><author xml:id="author-8"><persName><forename type="first">E.</forename><surname>SANTAGOSTINO</surname></persName><affiliation>Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, IRCCS Maggiore Hospital, Mangiagalli and Regina Elena Foundation, University of Milan, Milan, Italy</affiliation></author><author xml:id="author-9"><persName><forename type="first">B.</forename><surname>SØRENSEN</surname></persName><affiliation>Haemostasis Research Unit, Centre for Haemophilia and Thrombosis, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London School of Medicine, London, UK</affiliation></author></analytic><monogr><title level="j">Haemophilia</title><idno type="pISSN">1351-8216</idno><idno type="eISSN">1365-2516</idno><idno type="DOI">10.1111/(ISSN)1365-2516</idno><imprint><publisher>Blackwell Publishing Ltd</publisher><pubPlace>Oxford, UK</pubPlace><date type="published" when="2011-01"></date><biblScope unit="volume">17</biblScope><biblScope unit="issue">1</biblScope><biblScope unit="page" from="95">95</biblScope><biblScope unit="page" to="102">102</biblScope></imprint></monogr><idno type="istex">475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756</idno><idno type="DOI">10.1111/j.1365-2516.2010.02265.x</idno><idno type="ArticleID">HAE2265</idno></biblStruct></sourceDesc></fileDesc><profileDesc><creation><date>2011</date></creation><langUsage><language ident="en">en</language></langUsage><abstract><p>Summary. Rapid control of bleeding is the key to reducing bleeding complications and thereby preserving joint and musculoskeletal function in haemophilia patients with inhibitors. However, this requires early diagnosis following the onset of bleeding and strategies for rapid treatment in an outpatient setting. Overarching themes on the need for speed in managing bleeds in haemophilia patients were examined by a panel of clinicians experienced in managing inhibitor patients and joint disease during the Third Zürich Haemophilia Forum on 8 May 2009. This report summarizes the opinions of the panel on how to achieve rapid bleeding control in inhibitor patients and areas that were identified by the panel for future research or as needing new consensus guidelines. The consensus was that home treatment should be established for haemophilia patients with inhibitors, as it is associated with a faster time to treatment, as well as improvements in the quality of life of patients and their carers. In addition, as improved haemostatic control now allows inhibitor patients to participate in a wider range of physical activities, specific guidelines are required on which types of sport and work are appropriate. It was agreed that clear, systematic approaches are needed for early diagnosis of joint and muscle bleeds in inhibitor patients, which could facilitate rapid treatment. There may be opportunities for exploiting new diagnostic techniques from osteoarthritis to enable earlier diagnosis of haemophilic arthropathy. Overall, it was concluded that greater emphasis should be placed on education and patients’ psychological needs, to enable inhibitor patients to cope up more effectively with their disease.</p></abstract><textClass xml:lang="en"><keywords scheme="keyword"><list><head>keywords</head><item><term>arthropathy</term></item><item><term>haemophilia</term></item><item><term>inhibitors</term></item><item><term>muscle bleed</term></item><item><term>quality of life</term></item><item><term>recombinant activated factor VII</term></item></list></keywords></textClass></profileDesc><revisionDesc><change when="2011-01">Published</change></revisionDesc></teiHeader></istex:fulltextTEI><json:item><extension>txt</extension><original>false</original><mimetype>text/plain</mimetype><uri>https://api.istex.fr/document/475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756/fulltext/txt</uri></json:item></fulltext><metadata><istex:metadataXml wicri:clean="Wiley, elements deleted: body"><istex:xmlDeclaration>version="1.0" encoding="UTF-8" standalone="yes"</istex:xmlDeclaration><istex:document><component version="2.0" type="serialArticle" xml:lang="en"><header><publicationMeta level="product"><publisherInfo><publisherName>Blackwell Publishing Ltd</publisherName><publisherLoc>Oxford, UK</publisherLoc></publisherInfo><doi origin="wiley" registered="yes">10.1111/(ISSN)1365-2516</doi><issn type="print">1351-8216</issn><issn type="electronic">1365-2516</issn><idGroup><id type="product" value="HAE"></id><id type="publisherDivision" value="ST"></id></idGroup><titleGroup><title type="main" sort="HAEMOPHILIA">Haemophilia</title></titleGroup></publicationMeta><publicationMeta level="part" position="01101"><doi origin="wiley">10.1111/hae.2010.17.issue-1</doi><numberingGroup><numbering type="journalVolume" number="17">17</numbering><numbering type="journalIssue" number="1">1</numbering></numberingGroup><coverDate startDate="2011-01">January 2011</coverDate></publicationMeta><publicationMeta level="unit" type="article" position="17" status="forIssue"><doi origin="wiley">10.1111/j.1365-2516.2010.02265.x</doi><idGroup><id type="unit" value="HAE2265"></id></idGroup><countGroup><count type="pageTotal" number="8"></count></countGroup><titleGroup><title type="tocHeading1">Original Articles</title><title type="tocHeading2"><i>Meeting report</i></title></titleGroup><copyright>© 2010 Blackwell Publishing Ltd</copyright><eventGroup><event type="firstOnline" date="2010-12-29"></event><event type="publishedOnlineAcceptedOrEarlyUnpaginated" date="2010-04-12"></event><event type="xmlConverted" agent="Converter:BPG_TO_WML3G version:2.4.2 mode:FullText" date="2010-12-29"></event><event type="publishedOnlineFinalForm" date="2010-12-29"></event><event type="xmlConverted" agent="Converter:WILEY_ML3G_TO_WILEY_ML3GV2 version:3.8.8" date="2014-01-26"></event><event type="xmlConverted" agent="Converter:WML3G_To_WML3G version:4.1.7 mode:FullText,remove_FC" date="2014-10-24"></event></eventGroup><numberingGroup><numbering type="pageFirst" number="95">95</numbering><numbering type="pageLast" number="102">102</numbering></numberingGroup><correspondenceTo>Silva ZupančićŠalek, National Haemophilia Centre, University Hospital Centre Zagreb, Rebro, Kispatic Str 12, 10 000 Zagreb, Croatia.
Tel.: +385 1 337 5199; fax: +385 1 332 4650;
e‐mail: <email normalForm="silva.zupancic-salek@zg.htnet.hr">silva.zupancic‐salek@zg.htnet.hr</email></correspondenceTo><linkGroup><link type="toTypesetVersion" href="file:HAE.HAE2265.pdf"></link></linkGroup></publicationMeta><contentMeta><unparsedEditorialHistory>Accepted after revision 27 February 2010</unparsedEditorialHistory><countGroup><count type="figureTotal" number="0"></count><count type="tableTotal" number="1"></count></countGroup><titleGroup><title type="main">The need for speed in the management of haemophilia patients with inhibitors</title><title type="shortAuthors">S. Z. ŠALEK <i>et al.</i></title><title type="short">THE NEED FOR SPEED IN HAEMOPHILIA MANAGEMENT</title></titleGroup><creators><creator creatorRole="author" xml:id="cr1" affiliationRef="#a1"><personName><givenNames>S. Z.</givenNames><familyName>ŠALEK</familyName></personName></creator><creator creatorRole="author" xml:id="cr2" affiliationRef="#a2"><personName><givenNames>G. M.</givenNames><familyName>BENSON</familyName></personName></creator><creator creatorRole="author" xml:id="cr3" affiliationRef="#a3"><personName><givenNames>I.</givenNames><familyName>ELEZOVIĆ</familyName></personName></creator><creator creatorRole="author" xml:id="cr4" affiliationRef="#a4"><personName><givenNames>V.</givenNames><familyName>KRENN</familyName></personName></creator><creator creatorRole="author" xml:id="cr5" affiliationRef="#a5"><personName><givenNames>R. C. R.</givenNames><familyName>LJUNG</familyName></personName></creator><creator creatorRole="author" xml:id="cr6" affiliationRef="#a6"><personName><givenNames>M.</givenNames><familyName>MORFINI</familyName></personName></creator><creator creatorRole="author" xml:id="cr7" affiliationRef="#a7"><personName><givenNames>E.</givenNames><familyName>REMOR</familyName></personName></creator><creator creatorRole="author" xml:id="cr8" affiliationRef="#a8"><personName><givenNames>E.</givenNames><familyName>SANTAGOSTINO</familyName></personName></creator><creator creatorRole="author" xml:id="cr9" affiliationRef="#a9"><personName><givenNames>B.</givenNames><familyName>SØRENSEN</familyName></personName></creator></creators><affiliationGroup><affiliation xml:id="a1" countryCode="HR"><unparsedAffiliation>National Haemophilia Centre, University Hospital Centre Zagreb, Rebro, Zagreb, Croatia</unparsedAffiliation></affiliation><affiliation xml:id="a2" countryCode="IE"><unparsedAffiliation>Northern Ireland Haemophilia Comprehensive Care Centre, Belfast, Northern Ireland</unparsedAffiliation></affiliation><affiliation xml:id="a3" countryCode="RS"><unparsedAffiliation>Institute of Haematology, Clinical Centre of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia</unparsedAffiliation></affiliation><affiliation xml:id="a4" countryCode="DE"><unparsedAffiliation>Centre for Histologie, Zytologie and Molecular Diagnostics, Trier, Germany</unparsedAffiliation></affiliation><affiliation xml:id="a5" countryCode="SE"><unparsedAffiliation>Department of Paediatrics and Coagulation Disorders, University Hospital Malmö, Malmö, Sweden</unparsedAffiliation></affiliation><affiliation xml:id="a6" countryCode="IT"><unparsedAffiliation>Agency for Hemophilia – Reference Center for Inherited Bleeding Disorders of Tuscany, Department of Emergency and Reception, Azienda Ospedaliero Universitaria Careggi, Florence, Italy</unparsedAffiliation></affiliation><affiliation xml:id="a7" countryCode="ES"><unparsedAffiliation>Department of Psychobiology and Health, Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain</unparsedAffiliation></affiliation><affiliation xml:id="a8" countryCode="IT"><unparsedAffiliation>Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, IRCCS Maggiore Hospital, Mangiagalli and Regina Elena Foundation, University of Milan, Milan, Italy</unparsedAffiliation></affiliation><affiliation xml:id="a9" countryCode="GB"><unparsedAffiliation>Haemostasis Research Unit, Centre for Haemophilia and Thrombosis, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London School of Medicine, London, UK</unparsedAffiliation></affiliation></affiliationGroup><keywordGroup xml:lang="en"><keyword xml:id="k1">arthropathy</keyword><keyword xml:id="k2">haemophilia</keyword><keyword xml:id="k3">inhibitors</keyword><keyword xml:id="k4">muscle bleed</keyword><keyword xml:id="k5">quality of life</keyword><keyword xml:id="k6">recombinant activated factor VII</keyword></keywordGroup><abstractGroup><abstract type="main" xml:lang="en"><p><b>Summary. </b> Rapid control of bleeding is the key to reducing bleeding complications and thereby preserving joint and musculoskeletal function in haemophilia patients with inhibitors. However, this requires early diagnosis following the onset of bleeding and strategies for rapid treatment in an outpatient setting. Overarching themes on the need for speed in managing bleeds in haemophilia patients were examined by a panel of clinicians experienced in managing inhibitor patients and joint disease during the <i>Third Zürich Haemophilia Forum</i> on 8 May 2009. This report summarizes the opinions of the panel on how to achieve rapid bleeding control in inhibitor patients and areas that were identified by the panel for future research or as needing new consensus guidelines. The consensus was that home treatment should be established for haemophilia patients with inhibitors, as it is associated with a faster time to treatment, as well as improvements in the quality of life of patients and their carers. In addition, as improved haemostatic control now allows inhibitor patients to participate in a wider range of physical activities, specific guidelines are required on which types of sport and work are appropriate. It was agreed that clear, systematic approaches are needed for early diagnosis of joint and muscle bleeds in inhibitor patients, which could facilitate rapid treatment. There may be opportunities for exploiting new diagnostic techniques from osteoarthritis to enable earlier diagnosis of haemophilic arthropathy. Overall, it was concluded that greater emphasis should be placed on education and patients’ psychological needs, to enable inhibitor patients to cope up more effectively with their disease.</p></abstract></abstractGroup></contentMeta></header></component></istex:document></istex:metadataXml><mods version="3.6"><titleInfo lang="en"><title>The need for speed in the management of haemophilia patients with inhibitors</title></titleInfo><titleInfo type="abbreviated" lang="en"><title>THE NEED FOR SPEED IN HAEMOPHILIA MANAGEMENT</title></titleInfo><titleInfo type="alternative" contentType="CDATA" lang="en"><title>The need for speed in the management of haemophilia patients with inhibitors</title></titleInfo><name type="personal"><namePart type="given">S. Z.</namePart><namePart type="family">ŠALEK</namePart><affiliation>National Haemophilia Centre, University Hospital Centre Zagreb, Rebro, Zagreb, Croatia</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">G. M.</namePart><namePart type="family">BENSON</namePart><affiliation>Northern Ireland Haemophilia Comprehensive Care Centre, Belfast, Northern Ireland</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">I.</namePart><namePart type="family">ELEZOVIĆ</namePart><affiliation>Institute of Haematology, Clinical Centre of Serbia, School of Medicine, University of Belgrade, Belgrade, Serbia</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">V.</namePart><namePart type="family">KRENN</namePart><affiliation>Centre for Histologie, Zytologie and Molecular Diagnostics, Trier, Germany</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">R. C. R.</namePart><namePart type="family">LJUNG</namePart><affiliation>Department of Paediatrics and Coagulation Disorders, University Hospital Malmö, Malmö, Sweden</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">M.</namePart><namePart type="family">MORFINI</namePart><affiliation>Agency for Hemophilia – Reference Center for Inherited Bleeding Disorders of Tuscany, Department of Emergency and Reception, Azienda Ospedaliero Universitaria Careggi, Florence, Italy</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">E.</namePart><namePart type="family">REMOR</namePart><affiliation>Department of Psychobiology and Health, Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">E.</namePart><namePart type="family">SANTAGOSTINO</namePart><affiliation>Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, IRCCS Maggiore Hospital, Mangiagalli and Regina Elena Foundation, University of Milan, Milan, Italy</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">B.</namePart><namePart type="family">SØRENSEN</namePart><affiliation>Haemostasis Research Unit, Centre for Haemophilia and Thrombosis, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London School of Medicine, London, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><typeOfResource>text</typeOfResource><genre type="article" displayLabel="article"></genre><originInfo><publisher>Blackwell Publishing Ltd</publisher><place><placeTerm type="text">Oxford, UK</placeTerm></place><dateIssued encoding="w3cdtf">2011-01</dateIssued><edition>Accepted after revision 27 February 2010</edition><copyrightDate encoding="w3cdtf">2011</copyrightDate></originInfo><language><languageTerm type="code" authority="rfc3066">en</languageTerm><languageTerm type="code" authority="iso639-2b">eng</languageTerm></language><physicalDescription><internetMediaType>text/html</internetMediaType><extent unit="tables">1</extent></physicalDescription><abstract>Summary. Rapid control of bleeding is the key to reducing bleeding complications and thereby preserving joint and musculoskeletal function in haemophilia patients with inhibitors. However, this requires early diagnosis following the onset of bleeding and strategies for rapid treatment in an outpatient setting. Overarching themes on the need for speed in managing bleeds in haemophilia patients were examined by a panel of clinicians experienced in managing inhibitor patients and joint disease during the Third Zürich Haemophilia Forum on 8 May 2009. This report summarizes the opinions of the panel on how to achieve rapid bleeding control in inhibitor patients and areas that were identified by the panel for future research or as needing new consensus guidelines. The consensus was that home treatment should be established for haemophilia patients with inhibitors, as it is associated with a faster time to treatment, as well as improvements in the quality of life of patients and their carers. In addition, as improved haemostatic control now allows inhibitor patients to participate in a wider range of physical activities, specific guidelines are required on which types of sport and work are appropriate. It was agreed that clear, systematic approaches are needed for early diagnosis of joint and muscle bleeds in inhibitor patients, which could facilitate rapid treatment. There may be opportunities for exploiting new diagnostic techniques from osteoarthritis to enable earlier diagnosis of haemophilic arthropathy. Overall, it was concluded that greater emphasis should be placed on education and patients’ psychological needs, to enable inhibitor patients to cope up more effectively with their disease.</abstract><subject lang="en"><genre>keywords</genre><topic>arthropathy</topic><topic>haemophilia</topic><topic>inhibitors</topic><topic>muscle bleed</topic><topic>quality of life</topic><topic>recombinant activated factor VII</topic></subject><relatedItem type="host"><titleInfo><title>Haemophilia</title></titleInfo><genre type="journal">journal</genre><identifier type="ISSN">1351-8216</identifier><identifier type="eISSN">1365-2516</identifier><identifier type="DOI">10.1111/(ISSN)1365-2516</identifier><identifier type="PublisherID">HAE</identifier><part><date>2011</date><detail type="volume"><caption>vol.</caption><number>17</number></detail><detail type="issue"><caption>no.</caption><number>1</number></detail><extent unit="pages"><start>95</start><end>102</end><total>8</total></extent></part></relatedItem><identifier type="istex">475686870E14CDDD0AC6CEAA2FC6B5E90A9FD756</identifier><identifier type="DOI">10.1111/j.1365-2516.2010.02265.x</identifier><identifier type="ArticleID">HAE2265</identifier><accessCondition type="use and reproduction" contentType="copyright">© 2010 Blackwell Publishing Ltd</accessCondition><recordInfo><recordContentSource>WILEY</recordContentSource><recordOrigin>Blackwell Publishing Ltd</recordOrigin></recordInfo></mods></metadata><serie></serie></istex></record>Pour manipuler ce document sous Unix (Dilib)
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