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

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 β-thalassemia (...

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Main Authors: John Porter, Donald K. Bowden, Marina Economou, Jacques Troncy, Arnold Ganser, Dany Habr, Nicolas Martin, Adam Gater, Diana Rofail, Linda Abetz-Webb, Helen Lau, Maria Domenica Cappellini
Format: Article
Language:English
Published: Wiley 2012-01-01
Series:Anemia
Online Access:http://dx.doi.org/10.1155/2012/297641
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author John Porter
Donald K. Bowden
Marina Economou
Jacques Troncy
Arnold Ganser
Dany Habr
Nicolas Martin
Adam Gater
Diana Rofail
Linda Abetz-Webb
Helen Lau
Maria Domenica Cappellini
author_facet John Porter
Donald K. Bowden
Marina Economou
Jacques Troncy
Arnold Ganser
Dany Habr
Nicolas Martin
Adam Gater
Diana Rofail
Linda Abetz-Webb
Helen Lau
Maria Domenica Cappellini
author_sort John Porter
collection DOAJ
description 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 β-thalassemia (n=274) and myelodysplastic syndrome (MDS) patients (n=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, β-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 β-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 β-thalassemia and MDS patients. Improving such outcomes is an important long-term goal for patients with iron overload.
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spelling doaj-art-dc0eaa16090e46b9adb84445dd17e8bb2025-02-03T01:21:01ZengWileyAnemia2090-12672090-12752012-01-01201210.1155/2012/297641297641Health-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 TrialJohn Porter0Donald K. Bowden1Marina Economou2Jacques Troncy3Arnold Ganser4Dany Habr5Nicolas Martin6Adam Gater7Diana Rofail8Linda Abetz-Webb9Helen Lau10Maria Domenica Cappellini11Department of Haematology, UCL Cancer Institute, University College London, Paul O'Gorman Building, 72 Huntley Street, London WC1E 6BT, UKMonash Medical Centre, Melbourne, VIC 3168, AustraliaThalassemia Clinical Care Services Unit, Hippokration General Hospital Thessaloniki, Egnatia Street 106, 54622 Thessaloniki, GreeceHematology, Hopital Edouard Herriot, 6 Rue Antoine Lumiere, 69008 Lyon, FranceMedizinische Hochschule Hannover (MHH), Department of Hematology, Hemostasis, Oncology and Stem Cell Transplantation, Carl-Neuberg Strasse 1, 30625 Hannover, GermanyNovartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080, USANovartis Pharma AG Postfach, 4002 Basel, SwitzerlandAdelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UKAdelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UKAdelphi Values, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire SK10 5JB, UKNovartis Pharmaceutical Corporation, 180 Park Avenue, 105-3E065, Florham Park, NJ 07932-1080, USAUniversita di Milano, Can Granda Foundation IRCCS, Via F. Sforza 35, 20122 Milan, ItalyTreatment 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 β-thalassemia (n=274) and myelodysplastic syndrome (MDS) patients (n=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, β-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 β-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 β-thalassemia and MDS patients. Improving such outcomes is an important long-term goal for patients with iron overload.http://dx.doi.org/10.1155/2012/297641
spellingShingle John Porter
Donald K. Bowden
Marina Economou
Jacques Troncy
Arnold Ganser
Dany Habr
Nicolas Martin
Adam Gater
Diana Rofail
Linda Abetz-Webb
Helen Lau
Maria Domenica Cappellini
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
Anemia
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
url http://dx.doi.org/10.1155/2012/297641
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