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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

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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 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.

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Data Availability

Data may not be shared due to the fact that they contain re-identifiable information and can thus pose a risk to patient anonymity. Data are stored in the form of password-protected computer database available to VG. All data have been reported as summary statistics rather than individual findings so personal information cannot be identified. Aggregate group data may be provided by VG upon reasonable request.

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Acknowledgements

The authors wish to thank John Tavernarakis, Maria Kavasi, and Andriana Tsekoura for assistance with data collection and patient enrollment, and Professor Charalambos Camoutsis for overseeing this project. The authors would also like to express their gratitude to all the patients, who participated in this study.

Funding

There are no financial disclosures to be reported for this study.

Author information

Authors and Affiliations

Authors

Contributions

VG, AK-S, and AS participated in the study concept and design; VG, AK-S, VLz, VP, and GP recruited patients for participation in the study; VG, VM, VLb, PKt, EV, PKf, and UP collected clinical and laboratory data from patient chart files; VG and AK-S collected the completed questionnaires, combined and anonymized the data, and created the complete dataset of patient information; and KM performed the statistical analysis of the data. All the authors interpreted the findings, drafted and/or critically revised the manuscript, and approve it, as it is submitted.

Corresponding author

Correspondence to Argiris Symeonidis.

Ethics declarations

Conflicts of interest

VG, KM, GP, PKt, EV, VP, PKf, and UP report no conflict of interest. VLz and VLb have received travel grants from Amgen, Janssen, and Novartis. AK-S is PI for clinical trials from Apopharma, Celgene, Novartis, and has participated in advisory boards of Abbvie, Amgen, Genesis Pharma, Gilead, Janssen, Novartis, and Roche. AS is PI for clinical trials and has received Research grants through the University of Patras from Abbvie, Acerta Pharma, Amgen, Astellas, Bayer, Boerringer, Bristol, Celgene/Genesis Pharma, Celltrion, Gilead, Janssen, Karyopharm, MSD, Novartis, Oncopeptides, Pfizer, Prothena, Roche, Sanofi, Takeda/Shire, and Win-Medica/Accord.

Ethical approval

The study was performed in accordance with the ethical principles of the Declaration of Helsinki and all national rules and regulations. Approvals were obtained by the Ethics and Scientific committees of the participating hospitals (Patras University Hospital decision No. 29886/9–11-2018, Karamandaneion Children’ Hospital decision No. 9786/27–8-2018, and General Hospital of Agrinio decision No 13.8/24–9-2018).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

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Goulas, V., Kouraklis-Symeonidis, A., Manousou, K. et al. 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. Qual Life Res 30, 467–477 (2021). https://doi.org/10.1007/s11136-020-02634-y

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