Health-Related Quality of Life, Treatment Satisfaction, Adherence and Persistence in β-Thalassemia and Myelodysplastic Syndrome Patients with Iron Overload Receiving Deferasirox: Results from the EPIC Clinical Trial
Identifieur interne : 002086 ( Pmc/Curation ); précédent : 002085; suivant : 002087Health-Related Quality of Life, Treatment Satisfaction, Adherence and Persistence in β-Thalassemia and Myelodysplastic Syndrome Patients with Iron Overload Receiving Deferasirox: Results from the EPIC Clinical Trial
Auteurs : John Porter [Royaume-Uni] ; Donald K. Bowden [Australie] ; Marina Economou [Grèce] ; Jacques Troncy [France] ; Arnold Ganser [Allemagne] ; Dany Habr [États-Unis] ; Nicolas Martin [Suisse] ; Adam Gater [Royaume-Uni] ; Diana Rofail [Royaume-Uni] ; Linda Abetz-Webb [Royaume-Uni] ; Helen Lau [États-Unis] ; Maria Domenica Cappellini [Italie]Source :
- Anemia [ 2090-1267 ] ; 2012.
Abstract
Treatment of iron overload using deferoxamine (DFO) is associated with significant deficits in patients' health-related quality of life (HRQOL) and low treatment satisfaction. The current article presents patient-reported HRQOL, satisfaction, adherence, and persistence data from
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DOI: 10.1155/2012/297641
PubMed: 22924125
PubMed Central: 3424665
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Bowden</name><affiliation wicri:level="1"><nlm:aff id="I2">Monash Medical Centre, Melbourne, VIC 3168, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>Monash Medical Centre, Melbourne, VIC 3168</wicri:regionArea></affiliation></author><author><name sortKey="Economou, Marina" sort="Economou, Marina" uniqKey="Economou M" first="Marina" last="Economou">Marina Economou</name><affiliation wicri:level="1"><nlm:aff id="I3">Thalassemia Clinical Care Services Unit, Hippokration General Hospital Thessaloniki, Egnatia Street 106, 54622 Thessaloniki, Greece</nlm:aff><country xml:lang="fr">Grèce</country><wicri:regionArea>Thalassemia Clinical Care Services Unit, Hippokration General Hospital Thessaloniki, Egnatia Street 106, 54622 Thessaloniki</wicri:regionArea></affiliation></author><author><name sortKey="Troncy, Jacques" sort="Troncy, Jacques" uniqKey="Troncy J" first="Jacques" last="Troncy">Jacques Troncy</name><affiliation wicri:level="1"><nlm:aff id="I4">Hematology, Hopital Edouard Herriot, 6 Rue Antoine Lumiere, 69008 Lyon, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Hematology, Hopital Edouard Herriot, 6 Rue Antoine Lumiere, 69008 Lyon</wicri:regionArea></affiliation></author><author><name sortKey="Ganser, Arnold" sort="Ganser, Arnold" uniqKey="Ganser A" first="Arnold" last="Ganser">Arnold Ganser</name><affiliation wicri:level="1"><nlm:aff id="I5">Medizinische Hochschule Hannover (MHH), Department of Hematology, Hemostasis, Oncology and Stem Cell Transplantation, Carl-Neuberg Strasse 1, 30625 Hannover, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Medizinische Hochschule Hannover (MHH), Department of Hematology, Hemostasis, Oncology and Stem Cell Transplantation, Carl-Neuberg Strasse 1, 30625 Hannover</wicri:regionArea></affiliation></author><author><name sortKey="Habr, Dany" sort="Habr, Dany" uniqKey="Habr D" first="Dany" last="Habr">Dany Habr</name><affiliation wicri:level="1"><nlm:aff id="I6">Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080</wicri:regionArea></affiliation></author><author><name sortKey="Martin, Nicolas" sort="Martin, Nicolas" uniqKey="Martin N" first="Nicolas" last="Martin">Nicolas Martin</name><affiliation wicri:level="1"><nlm:aff id="I7">Novartis Pharma AG Postfach, 4002 Basel, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Novartis Pharma AG Postfach, 4002 Basel</wicri:regionArea></affiliation></author><author><name sortKey="Gater, Adam" sort="Gater, Adam" uniqKey="Gater A" first="Adam" last="Gater">Adam Gater</name><affiliation wicri:level="1"><nlm:aff id="I8">Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB</wicri:regionArea></affiliation></author><author><name sortKey="Rofail, Diana" sort="Rofail, Diana" uniqKey="Rofail D" first="Diana" last="Rofail">Diana Rofail</name><affiliation wicri:level="1"><nlm:aff id="I8">Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB</wicri:regionArea></affiliation></author><author><name sortKey="Abetz Webb, Linda" sort="Abetz Webb, Linda" uniqKey="Abetz Webb L" first="Linda" last="Abetz-Webb">Linda Abetz-Webb</name><affiliation wicri:level="1"><nlm:aff id="I8">Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB</wicri:regionArea></affiliation></author><author><name sortKey="Lau, Helen" sort="Lau, Helen" uniqKey="Lau H" first="Helen" last="Lau">Helen Lau</name><affiliation wicri:level="1"><nlm:aff id="I6">Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080</wicri:regionArea></affiliation></author><author><name sortKey="Cappellini, Maria Domenica" sort="Cappellini, Maria Domenica" uniqKey="Cappellini M" first="Maria Domenica" last="Cappellini">Maria Domenica Cappellini</name><affiliation wicri:level="1"><nlm:aff id="I9">Universita di Milano, Can Granda Foundation IRCCS, Via F. Sforza 35, 20122 Milan, Italy</nlm:aff><country xml:lang="fr">Italie</country><wicri:regionArea>Universita di Milano, Can Granda Foundation IRCCS, Via F. Sforza 35, 20122 Milan</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">22924125</idno><idno type="pmc">3424665</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3424665</idno><idno type="RBID">PMC:3424665</idno><idno type="doi">10.1155/2012/297641</idno><date when="2012">2012</date><idno type="wicri:Area/Pmc/Corpus">002236</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">002236</idno><idno type="wicri:Area/Pmc/Curation">002086</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">002086</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Health-Related Quality of Life, Treatment Satisfaction, Adherence and Persistence in <italic><italic>β</italic></italic>-Thalassemia and Myelodysplastic Syndrome Patients with Iron Overload Receiving Deferasirox: Results from the EPIC Clinical Trial</title><author><name sortKey="Porter, John" sort="Porter, John" uniqKey="Porter J" first="John" last="Porter">John Porter</name><affiliation wicri:level="1"><nlm:aff id="I1">Department of Haematology, UCL Cancer Institute, University College London, Paul O'Gorman Building, 72 Huntley Street, London WC1E 6BT, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Haematology, UCL Cancer Institute, University College London, Paul O'Gorman Building, 72 Huntley Street, London WC1E 6BT</wicri:regionArea></affiliation></author><author><name sortKey="Bowden, Donald K" sort="Bowden, Donald K" uniqKey="Bowden D" first="Donald K." last="Bowden">Donald K. Bowden</name><affiliation wicri:level="1"><nlm:aff id="I2">Monash Medical Centre, Melbourne, VIC 3168, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>Monash Medical Centre, Melbourne, VIC 3168</wicri:regionArea></affiliation></author><author><name sortKey="Economou, Marina" sort="Economou, Marina" uniqKey="Economou M" first="Marina" last="Economou">Marina Economou</name><affiliation wicri:level="1"><nlm:aff id="I3">Thalassemia Clinical Care Services Unit, Hippokration General Hospital Thessaloniki, Egnatia Street 106, 54622 Thessaloniki, Greece</nlm:aff><country xml:lang="fr">Grèce</country><wicri:regionArea>Thalassemia Clinical Care Services Unit, Hippokration General Hospital Thessaloniki, Egnatia Street 106, 54622 Thessaloniki</wicri:regionArea></affiliation></author><author><name sortKey="Troncy, Jacques" sort="Troncy, Jacques" uniqKey="Troncy J" first="Jacques" last="Troncy">Jacques Troncy</name><affiliation wicri:level="1"><nlm:aff id="I4">Hematology, Hopital Edouard Herriot, 6 Rue Antoine Lumiere, 69008 Lyon, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Hematology, Hopital Edouard Herriot, 6 Rue Antoine Lumiere, 69008 Lyon</wicri:regionArea></affiliation></author><author><name sortKey="Ganser, Arnold" sort="Ganser, Arnold" uniqKey="Ganser A" first="Arnold" last="Ganser">Arnold Ganser</name><affiliation wicri:level="1"><nlm:aff id="I5">Medizinische Hochschule Hannover (MHH), Department of Hematology, Hemostasis, Oncology and Stem Cell Transplantation, Carl-Neuberg Strasse 1, 30625 Hannover, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Medizinische Hochschule Hannover (MHH), Department of Hematology, Hemostasis, Oncology and Stem Cell Transplantation, Carl-Neuberg Strasse 1, 30625 Hannover</wicri:regionArea></affiliation></author><author><name sortKey="Habr, Dany" sort="Habr, Dany" uniqKey="Habr D" first="Dany" last="Habr">Dany Habr</name><affiliation wicri:level="1"><nlm:aff id="I6">Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080</wicri:regionArea></affiliation></author><author><name sortKey="Martin, Nicolas" sort="Martin, Nicolas" uniqKey="Martin N" first="Nicolas" last="Martin">Nicolas Martin</name><affiliation wicri:level="1"><nlm:aff id="I7">Novartis Pharma AG Postfach, 4002 Basel, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Novartis Pharma AG Postfach, 4002 Basel</wicri:regionArea></affiliation></author><author><name sortKey="Gater, Adam" sort="Gater, Adam" uniqKey="Gater A" first="Adam" last="Gater">Adam Gater</name><affiliation wicri:level="1"><nlm:aff id="I8">Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB</wicri:regionArea></affiliation></author><author><name sortKey="Rofail, Diana" sort="Rofail, Diana" uniqKey="Rofail D" first="Diana" last="Rofail">Diana Rofail</name><affiliation wicri:level="1"><nlm:aff id="I8">Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB</wicri:regionArea></affiliation></author><author><name sortKey="Abetz Webb, Linda" sort="Abetz Webb, Linda" uniqKey="Abetz Webb L" first="Linda" last="Abetz-Webb">Linda Abetz-Webb</name><affiliation wicri:level="1"><nlm:aff id="I8">Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB</wicri:regionArea></affiliation></author><author><name sortKey="Lau, Helen" sort="Lau, Helen" uniqKey="Lau H" first="Helen" last="Lau">Helen Lau</name><affiliation wicri:level="1"><nlm:aff id="I6">Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080</wicri:regionArea></affiliation></author><author><name sortKey="Cappellini, Maria Domenica" sort="Cappellini, Maria Domenica" uniqKey="Cappellini M" first="Maria Domenica" last="Cappellini">Maria Domenica Cappellini</name><affiliation wicri:level="1"><nlm:aff id="I9">Universita di Milano, Can Granda Foundation IRCCS, Via F. Sforza 35, 20122 Milan, Italy</nlm:aff><country xml:lang="fr">Italie</country><wicri:regionArea>Universita di Milano, Can Granda Foundation IRCCS, Via F. Sforza 35, 20122 Milan</wicri:regionArea></affiliation></author></analytic><series><title level="j">Anemia</title><idno type="ISSN">2090-1267</idno><idno type="eISSN">2090-1275</idno><imprint><date when="2012">2012</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>Treatment of iron overload using deferoxamine (DFO) is associated with significant deficits in patients' health-related quality of life (HRQOL) and low treatment satisfaction. The current article presents patient-reported HRQOL, satisfaction, adherence, and persistence data from <italic><italic>β</italic></italic>-thalassemia (<italic>n</italic> = 274) and myelodysplastic syndrome (MDS) patients (<italic>n</italic> = 168) patients participating in the Evaluation of Patients' Iron Chelation with Exjade (EPIC) study (NCT00171821); a large-scale 1-year, phase IIIb study investigating the efficacy and safety of the once-daily oral iron chelator, deferasirox. HRQOL and satisfaction, adherence, and persistence to iron chelation therapy (ICT) data were collected at baseline and end of study using the Medical Outcomes Short-Form 36-item Health Survey (SF-36v2) and the Satisfaction with ICT Questionnaire (SICT). Compared to age-matched norms, <italic><italic>β</italic></italic>-thalassemia and MDS patients reported lower SF-36 domain scores at baseline. Low levels of treatment satisfaction, adherence, and persistence were also observed. HRQOL improved following treatment with deferasirox, particularly among <italic><italic>β</italic></italic>-thalassemia patients. Furthermore, patients reported high levels of satisfaction with deferasirox at end of study and greater ICT adherence, and persistence. Findings suggest deferasirox improves HRQOL, treatment satisfaction, adherence, and persistence with ICT in <italic><italic>β</italic></italic>-thalassemia and MDS patients. Improving such outcomes is an important long-term goal for patients with iron overload.</p></div></front><back><div1 type="bibliography"><listBibl><biblStruct><analytic><author><name sortKey="Delea, Te" uniqKey="Delea T">TE Delea</name></author><author><name sortKey="Edelsberg, J" uniqKey="Edelsberg J">J Edelsberg</name></author><author><name sortKey="Sofrygin, O" uniqKey="Sofrygin O">O Sofrygin</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Gabutti, V" uniqKey="Gabutti V">V Gabutti</name></author><author><name sortKey="Piga, A" uniqKey="Piga A">A Piga</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Payne, Ka" uniqKey="Payne K">KA Payne</name></author><author><name sortKey="Desrosiers, Mp" uniqKey="Desrosiers M">MP Desrosiers</name></author><author><name sortKey="Caro, Jj" uniqKey="Caro J">JJ Caro</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Payne, Ka" uniqKey="Payne K">KA 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<front><journal-meta><journal-id journal-id-type="nlm-ta">Anemia</journal-id><journal-id journal-id-type="iso-abbrev">Anemia</journal-id><journal-id journal-id-type="publisher-id">ANE</journal-id><journal-title-group><journal-title>Anemia</journal-title></journal-title-group><issn pub-type="ppub">2090-1267</issn><issn pub-type="epub">2090-1275</issn><publisher><publisher-name>Hindawi Publishing Corporation</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">22924125</article-id><article-id pub-id-type="pmc">3424665</article-id><article-id pub-id-type="doi">10.1155/2012/297641</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group></article-categories><title-group><article-title>Health-Related Quality of Life, Treatment Satisfaction, Adherence and Persistence in <italic><italic>β</italic></italic>-Thalassemia and Myelodysplastic Syndrome Patients with Iron Overload Receiving Deferasirox: Results from the EPIC Clinical Trial</article-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Porter</surname><given-names>John</given-names></name><xref ref-type="aff" rid="I1"><sup>1</sup></xref><xref ref-type="corresp" rid="cor1">*</xref></contrib><contrib contrib-type="author"><name><surname>Bowden</surname><given-names>Donald K.</given-names></name><xref ref-type="aff" rid="I2"><sup>2</sup></xref></contrib><contrib contrib-type="author"><name><surname>Economou</surname><given-names>Marina</given-names></name><xref ref-type="aff" rid="I3"><sup>3</sup></xref></contrib><contrib contrib-type="author"><name><surname>Troncy</surname><given-names>Jacques</given-names></name><xref ref-type="aff" rid="I4"><sup>4</sup></xref></contrib><contrib contrib-type="author"><name><surname>Ganser</surname><given-names>Arnold</given-names></name><xref ref-type="aff" rid="I5"><sup>5</sup></xref></contrib><contrib contrib-type="author"><name><surname>Habr</surname><given-names>Dany</given-names></name><xref ref-type="aff" rid="I6"><sup>6</sup></xref></contrib><contrib contrib-type="author"><name><surname>Martin</surname><given-names>Nicolas</given-names></name><xref ref-type="aff" rid="I7"><sup>7</sup></xref></contrib><contrib contrib-type="author"><name><surname>Gater</surname><given-names>Adam</given-names></name><xref ref-type="aff" rid="I8"><sup>8</sup></xref></contrib><contrib contrib-type="author"><name><surname>Rofail</surname><given-names>Diana</given-names></name><xref ref-type="aff" rid="I8"><sup>8</sup></xref></contrib><contrib contrib-type="author"><name><surname>Abetz-Webb</surname><given-names>Linda</given-names></name><xref ref-type="aff" rid="I8"><sup>8</sup></xref></contrib><contrib contrib-type="author"><name><surname>Lau</surname><given-names>Helen</given-names></name><xref ref-type="aff" rid="I6"><sup>6</sup></xref></contrib><contrib contrib-type="author"><name><surname>Cappellini</surname><given-names>Maria Domenica</given-names></name><xref ref-type="aff" rid="I9"><sup>9</sup></xref></contrib></contrib-group><aff id="I1"><sup>1</sup>Department of Haematology, UCL Cancer Institute, University College London, Paul O'Gorman Building, 72 Huntley Street, London WC1E 6BT, UK</aff><aff id="I2"><sup>2</sup>Monash Medical Centre, Melbourne, VIC 3168, Australia</aff><aff id="I3"><sup>3</sup>Thalassemia Clinical Care Services Unit, Hippokration General Hospital Thessaloniki, Egnatia Street 106, 54622 Thessaloniki, Greece</aff><aff id="I4"><sup>4</sup>Hematology, Hopital Edouard Herriot, 6 Rue Antoine Lumiere, 69008 Lyon, France</aff><aff id="I5"><sup>5</sup>Medizinische Hochschule Hannover (MHH), Department of Hematology, Hemostasis, Oncology and Stem Cell Transplantation, Carl-Neuberg Strasse 1, 30625 Hannover, Germany</aff><aff id="I6"><sup>6</sup>Novartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080, USA</aff><aff id="I7"><sup>7</sup>Novartis Pharma AG Postfach, 4002 Basel, Switzerland</aff><aff id="I8"><sup>8</sup>Adelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UK</aff><aff id="I9"><sup>9</sup>Universita di Milano, Can Granda Foundation IRCCS, Via F. Sforza 35, 20122 Milan, Italy</aff><author-notes><corresp id="cor1">*John Porter: <email>j.porter@ucl.ac.uk</email></corresp><fn fn-type="other"><p>Academic Editor: Sezaneh Haghpanah</p></fn></author-notes><pub-date pub-type="ppub"><year>2012</year></pub-date><pub-date pub-type="epub"><day>12</day><month>8</month><year>2012</year></pub-date><volume>2012</volume><elocation-id>297641</elocation-id><history><date date-type="received"><day>20</day><month>1</month><year>2012</year></date><date date-type="rev-recd"><day>1</day><month>5</month><year>2012</year></date><date date-type="accepted"><day>19</day><month>5</month><year>2012</year></date></history><permissions><copyright-statement>Copyright © 2012 John Porter et al.</copyright-statement><copyright-year>2012</copyright-year><license xlink:href="https://creativecommons.org/licenses/by/3.0/"><license-p>This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.</license-p></license></permissions><abstract><p>Treatment of iron overload using deferoxamine (DFO) is associated with significant deficits in patients' health-related quality of life (HRQOL) and low treatment satisfaction. The current article presents patient-reported HRQOL, satisfaction, adherence, and persistence data from <italic><italic>β</italic></italic>-thalassemia (<italic>n</italic> = 274) and myelodysplastic syndrome (MDS) patients (<italic>n</italic> = 168) patients participating in the Evaluation of Patients' Iron Chelation with Exjade (EPIC) study (NCT00171821); a large-scale 1-year, phase IIIb study investigating the efficacy and safety of the once-daily oral iron chelator, deferasirox. HRQOL and satisfaction, adherence, and persistence to iron chelation therapy (ICT) data were collected at baseline and end of study using the Medical Outcomes Short-Form 36-item Health Survey (SF-36v2) and the Satisfaction with ICT Questionnaire (SICT). Compared to age-matched norms, <italic><italic>β</italic></italic>-thalassemia and MDS patients reported lower SF-36 domain scores at baseline. Low levels of treatment satisfaction, adherence, and persistence were also observed. HRQOL improved following treatment with deferasirox, particularly among <italic><italic>β</italic></italic>-thalassemia patients. Furthermore, patients reported high levels of satisfaction with deferasirox at end of study and greater ICT adherence, and persistence. Findings suggest deferasirox improves HRQOL, treatment satisfaction, adherence, and persistence with ICT in <italic><italic>β</italic></italic>-thalassemia and MDS patients. Improving such outcomes is an important long-term goal for patients with iron overload.</p></abstract></article-meta></front><floats-group><fig id="fig1" orientation="portrait" position="float"><label>Figure 1</label><caption><p>Mean SF-36 domain scores for <italic>β</italic>-thalassemia population versus disease-related and general population references at baseline and EOS. Data illustrated in the above figure are representative of the mean and 95% confidence interval estimates of the mean as calculated using the formula: 1.96 ∗ standard deviation <inline-formula><mml:math id="M15"><mml:mrow><mml:mi></mml:mi><mml:mi></mml:mi><mml:mi></mml:mi><mml:mi></mml:mi><mml:mo>÷</mml:mo><mml:msqrt><mml:mi>n</mml:mi></mml:msqrt></mml:mrow></mml:math></inline-formula>. Reference data for ICT patients were based on Payne et al. [<xref rid="B3" ref-type="bibr">3</xref>] (where 82% of patients in this study were thalassemia patients); UK norms from Jenkinson et al. [<xref rid="B44" ref-type="bibr">42</xref>] and direct email communications from Dr. Jenkinson on Oct 24, 2011 with age-specific norms. </p></caption><graphic xlink:href="ANE2012-297641.001"></graphic></fig><fig id="fig2" orientation="portrait" position="float"><label>Figure 2</label><caption><p>Mean SF-36 domain scores for MDS population versus MDS and general population references at baseline and EOS. Data illustrated in the above figure are representative of the mean and 95% confidence interval estimates of the mean as calculated using the formula: 1.96 ∗ standard deviation <inline-formula><mml:math id="M16"><mml:mo>÷</mml:mo><mml:mi></mml:mi><mml:msqrt><mml:mi>n</mml:mi></mml:msqrt></mml:math></inline-formula>. Transfusion-dependent MDS patient reference data reported by Jansen et al. [<xref rid="B17" ref-type="bibr">17</xref>]; UK norms from Jenkinson et al. [<xref rid="B44" ref-type="bibr">42</xref>] and direct email communications from Dr. Jenkinson on Oct 24, 2011 with age-specific norms. </p></caption><graphic xlink:href="ANE2012-297641.002"></graphic></fig><fig id="fig3" orientation="portrait" position="float"><label>Figure 3</label><caption><p>Mean SICT domain scores at baseline and EOS for overall <italic>β</italic>-Thalassemia population.</p></caption><graphic xlink:href="ANE2012-297641.003"></graphic></fig><fig id="fig4" orientation="portrait" position="float"><label>Figure 4</label><caption><p>Mean SICT domain scores at baseline and EOS for MDS population with prior history of ICT.</p></caption><graphic xlink:href="ANE2012-297641.004"></graphic></fig><table-wrap id="tab1" orientation="portrait" position="float"><label>Table 1</label><caption><p>Demographic and clinical characteristics of <italic>β</italic>-thalassemia and MDS patients.</p></caption><table frame="hsides" rules="groups"><thead><tr><th align="left" rowspan="1" colspan="1"> </th><th align="center" rowspan="1" colspan="1"><italic>β</italic>-thalassemia (<italic>N</italic> = 274)</th><th align="center" rowspan="1" colspan="1">MDS (<italic>N</italic> = 168)</th></tr></thead><tbody><tr><td align="left" rowspan="1" colspan="1">Mean age (SD)</td><td align="center" rowspan="1" colspan="1">26 (11.5)</td><td align="center" rowspan="1" colspan="1">68 (10.3)</td></tr><tr><td align="left" rowspan="1" colspan="1">Males, <italic>n</italic> (%)</td><td align="center" rowspan="1" colspan="1">127 (46.4)</td><td align="center" rowspan="1" colspan="1">96 (57.1)</td></tr><tr><td align="left" rowspan="1" colspan="1">Age groups, <italic>n</italic> (%)</td><td align="center" rowspan="1" colspan="1"> </td><td align="center" rowspan="1" colspan="1"> </td></tr><tr><td align="left" rowspan="1" colspan="1"> <6 yrs</td><td align="center" rowspan="1" colspan="1">17 (6.2)</td><td align="center" rowspan="1" colspan="1">0 (0)</td></tr><tr><td align="left" rowspan="1" colspan="1"> 6 to <12 yrs</td><td align="center" rowspan="1" colspan="1">25 (9.1)</td><td align="center" rowspan="1" colspan="1">0 (0)</td></tr><tr><td align="left" rowspan="1" colspan="1"> 12 to <16 yrs</td><td align="center" rowspan="1" colspan="1">15 (5.5)</td><td align="center" rowspan="1" colspan="1">0 (0)</td></tr><tr><td align="left" rowspan="1" colspan="1"> 16 to <50 yrs</td><td align="center" rowspan="1" colspan="1">213 (77.7)</td><td align="center" rowspan="1" colspan="1">4 (2.4)</td></tr><tr><td align="left" rowspan="1" colspan="1"> 50 to <65 yrs</td><td align="center" rowspan="1" colspan="1">4 (1.5)</td><td align="center" rowspan="1" colspan="1">55 (32.7)</td></tr><tr><td align="left" rowspan="1" colspan="1"> ≥65 yrs</td><td align="center" rowspan="1" colspan="1">0 (0)</td><td align="center" rowspan="1" colspan="1">109 (64.9)</td></tr><tr><td align="left" rowspan="1" colspan="1">Prior chelation therapy, <italic>n</italic> (%)</td><td align="center" rowspan="1" colspan="1"> </td><td align="center" rowspan="1" colspan="1"> </td></tr><tr><td align="left" rowspan="1" colspan="1"> No</td><td align="center" rowspan="1" colspan="1">4 (1.5)</td><td align="center" rowspan="1" colspan="1">81 (48.2)</td></tr><tr><td align="left" rowspan="1" colspan="1"> Yes</td><td align="center" rowspan="1" colspan="1">270 (98.5)</td><td align="center" rowspan="1" colspan="1">87 (51.8)</td></tr><tr><td align="left" rowspan="1" colspan="1">Prior chelation therapy, <italic>n</italic> (%)</td><td align="center" rowspan="1" colspan="1"> </td><td align="center" rowspan="1" colspan="1"> </td></tr><tr><td align="left" rowspan="1" colspan="1"> None</td><td align="center" rowspan="1" colspan="1">4 (1.5)</td><td align="center" rowspan="1" colspan="1">81 (48.2)</td></tr><tr><td align="left" rowspan="1" colspan="1"> DFO only</td><td align="center" rowspan="1" colspan="1">184 (66.4)</td><td align="center" rowspan="1" colspan="1">63 (37.5)</td></tr><tr><td align="left" rowspan="1" colspan="1"> Deferiprone only</td><td align="center" rowspan="1" colspan="1">2 (0.7)</td><td align="center" rowspan="1" colspan="1">9 (5.4)</td></tr><tr><td align="left" rowspan="1" colspan="1"> DFO and deferiprone<sup>∗</sup></td><td align="center" rowspan="1" colspan="1">84 (30.3)</td><td align="center" rowspan="1" colspan="1">14 (8.3)</td></tr><tr><td align="left" rowspan="1" colspan="1"> Other ICT</td><td align="center" rowspan="1" colspan="1">3 (1.1)</td><td align="center" rowspan="1" colspan="1">1 (0.6)</td></tr></tbody></table><table-wrap-foot><fn><p><sup>∗</sup>Patients may have received both DFO and deferiprone as prior chelation therapies, but these may not have been in combination.</p></fn></table-wrap-foot></table-wrap><table-wrap id="tab2" orientation="portrait" position="float"><label>Table 2</label><caption><p>Mean (SD) SF-36 domain and summary scores among MDS patients according to prior ICT history.</p></caption><table frame="hsides" rules="groups"><thead><tr><th align="left" rowspan="1" colspan="1"> </th><th align="center" rowspan="1" colspan="1"> </th><th align="center" rowspan="1" colspan="1"> </th><th align="center" colspan="2" rowspan="1">Baseline mean (SD)</th><th align="center" colspan="2" rowspan="1">EOS mean (SD)</th></tr><tr><th align="left" rowspan="1" colspan="1"> </th><th align="center" rowspan="1" colspan="1">Reference MDS population <break></break>(<italic>n</italic> = 50): mean (SD)</th><th align="center" rowspan="1" colspan="1">Age-matched UK norms: mean (SD)</th><th align="center" rowspan="1" colspan="1">Prior ICT (<italic>N</italic> = 59–62)</th><th align="center" rowspan="1" colspan="1">ICT Naïve (<italic>N</italic> = 34-35)</th><th align="center" rowspan="1" colspan="1">Prior ICT (<italic>N</italic> = 38–40)</th><th align="center" rowspan="1" colspan="1">ICT Naïve (<italic>N</italic> = 32–35)</th></tr></thead><tbody><tr><td align="left" rowspan="2" colspan="1">Physical functioning</td><td align="center" rowspan="1" colspan="1">48.1</td><td align="center" rowspan="1" colspan="1">77.42</td><td align="center" rowspan="1" colspan="1">53.60</td><td align="center" rowspan="1" colspan="1">44.56</td><td align="center" rowspan="1" colspan="1">47.43</td><td align="center" rowspan="1" colspan="1">48.79</td></tr><tr><td align="center" rowspan="1" colspan="1">(30.6)</td><td align="center" rowspan="1" colspan="1">(25.38)</td><td align="center" rowspan="1" colspan="1">(21.35)</td><td align="center" rowspan="1" colspan="1">(17.94)</td><td align="center" rowspan="1" colspan="1">(24.39)</td><td align="center" rowspan="1" colspan="1">(23.29)</td></tr><tr><td align="left" rowspan="2" colspan="1">Role-physical</td><td align="center" rowspan="1" colspan="1">39.2</td><td align="center" rowspan="1" colspan="1">78.16</td><td align="center" rowspan="1" colspan="1">36.39</td><td align="center" rowspan="1" colspan="1">26.43</td><td align="center" rowspan="1" colspan="1">30.21</td><td align="center" rowspan="1" colspan="1">29.66</td></tr><tr><td align="center" rowspan="1" colspan="1">(42.5)</td><td align="center" rowspan="1" colspan="1">(28.11)</td><td align="center" rowspan="1" colspan="1">(39.21)</td><td align="center" rowspan="1" colspan="1">(36.85)</td><td align="center" rowspan="1" colspan="1">(40.90)</td><td align="center" rowspan="1" colspan="1">(35.60)</td></tr><tr><td align="left" rowspan="2" colspan="1">Bodily pain</td><td align="center" rowspan="1" colspan="1">66.6</td><td align="center" rowspan="1" colspan="1">71.52</td><td align="center" rowspan="1" colspan="1">65.61</td><td align="center" rowspan="1" colspan="1">64.69</td><td align="center" rowspan="1" colspan="1">63.23</td><td align="center" rowspan="1" colspan="1">59.77</td></tr><tr><td align="center" rowspan="1" colspan="1">(31.2)</td><td align="center" rowspan="1" colspan="1">(26.46)</td><td align="center" rowspan="1" colspan="1">(27.43)</td><td align="center" rowspan="1" colspan="1">(27.16)</td><td align="center" rowspan="1" colspan="1">(28.53)</td><td align="center" rowspan="1" colspan="1">(31.85)</td></tr><tr><td align="left" rowspan="2" colspan="1">General health</td><td align="center" rowspan="1" colspan="1">41.5</td><td align="center" rowspan="1" colspan="1">66.24</td><td align="center" rowspan="1" colspan="1">42.70</td><td align="center" rowspan="1" colspan="1">40.72</td><td align="center" rowspan="1" colspan="1">37.78</td><td align="center" rowspan="1" colspan="1">41.55</td></tr><tr><td align="center" rowspan="1" colspan="1">(21.3)</td><td align="center" rowspan="1" colspan="1">(22.57)</td><td align="center" rowspan="1" colspan="1">(18.94)</td><td align="center" rowspan="1" colspan="1">(20.00)</td><td align="center" rowspan="1" colspan="1">(20.01)</td><td align="center" rowspan="1" colspan="1">(15.92)</td></tr><tr><td align="left" rowspan="2" colspan="1">Vitality</td><td align="center" rowspan="1" colspan="1">50.6</td><td align="center" rowspan="1" colspan="1">57.79</td><td align="center" rowspan="1" colspan="1">43.25</td><td align="center" rowspan="1" colspan="1">37.35</td><td align="center" rowspan="1" colspan="1">42.89</td><td align="center" rowspan="1" colspan="1">40.20</td></tr><tr><td align="center" rowspan="1" colspan="1">(25.3)</td><td align="center" rowspan="1" colspan="1">(21.28)</td><td align="center" rowspan="1" colspan="1">(19.02)</td><td align="center" rowspan="1" colspan="1">(15.92)</td><td align="center" rowspan="1" colspan="1">(24.10)</td><td align="center" rowspan="1" colspan="1">(16.81)</td></tr><tr><td align="left" rowspan="2" colspan="1">Social functioning</td><td align="center" rowspan="1" colspan="1">67.0</td><td align="center" rowspan="1" colspan="1">81.08</td><td align="center" rowspan="1" colspan="1">68.55</td><td align="center" rowspan="1" colspan="1">71.07</td><td align="center" rowspan="1" colspan="1">62.18</td><td align="center" rowspan="1" colspan="1">63.21</td></tr><tr><td align="center" rowspan="1" colspan="1">(29.6)</td><td align="center" rowspan="1" colspan="1">(26.14)</td><td align="center" rowspan="1" colspan="1">(29.75)</td><td align="center" rowspan="1" colspan="1">(23.24)</td><td align="center" rowspan="1" colspan="1">(25.57)</td><td align="center" rowspan="1" colspan="1">(21.21)</td></tr><tr><td align="left" rowspan="2" colspan="1">Role-emotional</td><td align="center" rowspan="1" colspan="1">59.0</td><td align="center" rowspan="1" colspan="1">84.11</td><td align="center" rowspan="1" colspan="1">57.18</td><td align="center" rowspan="1" colspan="1">61.90</td><td align="center" rowspan="1" colspan="1">41.23</td><td align="center" rowspan="1" colspan="1">51.96</td></tr><tr><td align="center" rowspan="1" colspan="1">(41.4)</td><td align="center" rowspan="1" colspan="1">(24.41)</td><td align="center" rowspan="1" colspan="1">(44.05)</td><td align="center" rowspan="1" colspan="1">(41.34)</td><td align="center" rowspan="1" colspan="1">(43.45)</td><td align="center" rowspan="1" colspan="1">(45.83)</td></tr><tr><td align="left" rowspan="2" colspan="1">Mental health</td><td align="center" rowspan="1" colspan="1">72.3</td><td align="center" rowspan="1" colspan="1">73.84</td><td align="center" rowspan="1" colspan="1">66.78</td><td align="center" rowspan="1" colspan="1">69.06</td><td align="center" rowspan="1" colspan="1">60.07</td><td align="center" rowspan="1" colspan="1">64.47</td></tr><tr><td align="center" rowspan="1" colspan="1">(20.9)</td><td align="center" rowspan="1" colspan="1">(19.35)</td><td align="center" rowspan="1" colspan="1">(22.34)</td><td align="center" rowspan="1" colspan="1">(18.54)</td><td align="center" rowspan="1" colspan="1">(22.85)</td><td align="center" rowspan="1" colspan="1">(23.01)</td></tr><tr><td align="left" rowspan="2" colspan="1">Physical component summary</td><td align="center" rowspan="1" colspan="1">35.7</td><td align="center" rowspan="1" colspan="1">44.47</td><td align="center" rowspan="1" colspan="1">36.97</td><td align="center" rowspan="1" colspan="1">33.10</td><td align="center" rowspan="1" colspan="1">36.21</td><td align="center" rowspan="1" colspan="1">35.11</td></tr><tr><td align="center" rowspan="1" colspan="1">(11.7)</td><td align="center" rowspan="1" colspan="1">(12.32)</td><td align="center" rowspan="1" colspan="1">(8.48)</td><td align="center" rowspan="1" colspan="1">(8.31)</td><td align="center" rowspan="1" colspan="1">(8.70)</td><td align="center" rowspan="1" colspan="1">(10.80)</td></tr><tr><td align="left" rowspan="2" colspan="1">Mental component summary</td><td align="center" rowspan="1" colspan="1">48.9</td><td align="center" rowspan="1" colspan="1">52.28</td><td align="center" rowspan="1" colspan="1">46.32</td><td align="center" rowspan="1" colspan="1">48.49</td><td align="center" rowspan="1" colspan="1">42.14</td><td align="center" rowspan="1" colspan="1">45.27</td></tr><tr><td align="center" rowspan="1" colspan="1">(12.6)</td><td align="center" rowspan="1" colspan="1">(9.89)</td><td align="center" rowspan="1" colspan="1">(12.02)</td><td align="center" rowspan="1" colspan="1">(10.04)</td><td align="center" rowspan="1" colspan="1">(11.61)</td><td align="center" rowspan="1" colspan="1">(11.97)</td></tr></tbody></table><table-wrap-foot><fn><p>Transfusion-dependent MDS patient reference data reported by Jansen et al. [<xref rid="B17" ref-type="bibr">17</xref>]; UK norms from Jenkinson et al. [<xref rid="B44" ref-type="bibr">42</xref>] and direct email communications from Dr. Jenkinson on Oct 24, 2011 with age-specific norms.</p></fn></table-wrap-foot></table-wrap></floats-group></pmc></record>Pour manipuler ce document sous Unix (Dilib)
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