A multicenter cross-sectional study of the quality of life and iron chelation treatment satisfaction of patients with tr
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A multicenter cross‑sectional study of the quality of life and iron chelation treatment satisfaction of patients with transfusion‑dependent β‑thalassemia, in routine care settings in Western Greece Vassilis Goulas1 · Alexandra Kouraklis‑Symeonidis2 · Kyriaki Manousou1 · Vassileios Lazaris2 · George Pairas5 · Paraskevi Katsaouni2 · Eugenia Verigou2 · Vassiliki Labropoulou2 · Vassiliki Pesli2 · Panagiotis Kaiafas3 · Urania Papageorgiou4 · Argiris Symeonidis2 Accepted: 4 September 2020 © Springer Nature Switzerland AG 2020
Abstract Purpose To evaluate health-related quality of life (HRQoL) and satisfaction with iron chelation therapy (ICT) of patients with transfusion-dependent β-thalassemia (TDT) managed under routine care conditions. Patients and methods This was an observational, multicenter, cross-sectional study conducted in three hospital-based Thalassemia Units of Western Greece. Patients confidentially completed the 36-item short-form (SF-36) and the “satisfaction with ICT” (SICT) instruments to assess HRQoL and ICT satisfaction respectively. Results One hundred and thirty-one adult TDT patients [74 female, median (IQR) age: 41 (36–47) years] were enrolled. Eighty patients (61.1%) were receiving parenteral ICT, with or without oral chelators (Group I), whereas 51 (38.9%) were only receiving oral ICT (Group II). The median SF-36 physical component summary and mental component summary scores were 76.3 and 75.7 among Group I, and 76.9 and 74.5 among Group II patients, not differing between the two groups. In their majority, Group I (84.6%) and Group II (92.9%) patients reported preferring oral ICT. Moreover, Group I patients reported greater perceived ICT effectiveness (median SICT score: 4.3 versus 4.2; p = 0.039), whereas patients receiving deferasiroxcontaining ICT reported higher treatment acceptance (median SICT score: 4.0 versus 3.6, p = 0.038) and greater satisfaction with the burden of their ICT (median SICT score: 4.4 versus 3.9, p = 0.033). Conclusion TDT patients prefer to receive oral ICT and are more satisfied of the burden of deferasirox-containing ICT, even though those receiving parenteral ICT are more satisfied by the effectiveness of their treatment. No differences in HRQoL were not noted between patients receiving parenteral versus oral ICT. Keywords Iron chelation therapy · Deferoxamine · Deferasirox · Health-related quality of life · Patient-reported outcomes · SF-36 · SICT * Argiris Symeonidis [email protected]
Introduction
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Beta (β)-thalassemias represent a group of hereditary hemoglobin disorders (hemoglobinopathies), characterized by hypotranscription of the unmutated β-globin gene or by production of a mutated, dysfunctional β-globin chain, leading to the formation of an unstable tetramer, which precipitates, induces apoptosis to the maturing erythroblast in the bone marrow, and renders erythropoiesis ineffective [1, 2]. The prevalence of β-thalassemia is higher across Mediterranean countries [1, 3], including Greece [4, 5]. Patients with transfusion-dependent β-thal
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