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

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

Research output: Contribution to journalArticle

30 Citations (Scopus)

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 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.

Original languageEnglish
Article number297641
JournalAnemia
Volume2012
DOIs
Publication statusPublished - 2012

Fingerprint

Iron Overload
Thalassemia
Myelodysplastic Syndromes
Iron
Quality of Life
Clinical Trials
Chelation Therapy
Therapeutics
deferasirox
Deferoxamine
Chelating Agents
Health Surveys
Safety

ASJC Scopus subject areas

  • Hematology
  • Cell Biology

Cite this

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. / Porter, John; Bowden, Donald K.; Economou, Marina; Troncy, Jacques; Ganser, Arnold; Habr, Dany; Martin, Nicolas; Gater, Adam; Rofail, Diana; Abetz-Webb, Linda; Lau, Helen; Cappellini, Maria Domenica.

In: Anemia, Vol. 2012, 297641, 2012.

Research output: Contribution to journalArticle

Porter, John ; Bowden, Donald K. ; Economou, Marina ; Troncy, Jacques ; Ganser, Arnold ; Habr, Dany ; Martin, Nicolas ; Gater, Adam ; Rofail, Diana ; Abetz-Webb, Linda ; Lau, Helen ; Cappellini, Maria Domenica. / 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. In: Anemia. 2012 ; Vol. 2012.
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