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

• Published in: Quality of life research Vol. 30; no. 2; pp. 467 - 477
• Main Authors: Goulas, Vassilis, Kouraklis-Symeonidis, Alexandra, Manousou, Kyriaki, Lazaris, Vassileios, Pairas, George, Katsaouni, Paraskevi, Verigou, Eugenia, Labropoulou, Vassiliki, Pesli, Vassiliki, Kaiafas, Panagiotis, Papageorgiou, Urania, Symeonidis, Argiris
• Format: Journal Article
• Language: English
• Published: Cham Springer International Publishing 01.02.2021; Springer Nature B.V
• Subjects: Adult; beta-Thalassemia - drug therapy; Blood diseases; Cross-Sectional Studies; Female; Greece; Humans; Iron Chelating Agents - administration & dosage; Iron Chelating Agents - therapeutic use; Male; Medicine; Medicine & Public Health; Patient Satisfaction; Public Health; Quality of life; Quality of Life - psychology; Quality of Life Research; Sociology; Greece; Deferasirox; Health-related quality of life; SICT; Iron chelation therapy; Patient-reported outcomes; Deferoxamine; SF-36
• ISSN: 0962-9343; 1573-2649
• DOI: 10.1007/s11136-020-02634-y

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 deferasirox-containing 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.