Preprint Article Version 1 Preserved in Portico This version is not peer-reviewed

A Cross-Sectional, Multicenter, Disease-Specific, Health-Related Quality of Life study in Greek Transfusion Dependent Thalassemia Patients

Philippos Klonizakis
* ORCID logo ,
Noémi Roy
,
Ioanna Papatsouma
,
Maria Mainou
,
Ioanna Christodoulou
,
Despina Pantelidou
,
Smaro Kokkota
,
Michael Diamantidis
,
Alexandra Kourakli
,
Vasilios Lazaris
ORCID logo ,
Dimitrios Andriopoulos
,
Apostolos Tsapas
,
Robert J. Klaassen
,
Efthymia Vlachaki
ORCID logo
Version 1 : Received: 15 December 2023 / Approved: 21 December 2023 / Online: 21 December 2023 (13:41:48 CET)

A peer-reviewed article of this Preprint also exists.

Klonizakis, P.; Roy, N.; Papatsouma, I.; Mainou, M.; Christodoulou, I.; Pantelidou, D.; Kokkota, S.; Diamantidis, M.; Kourakli, A.; Lazaris, V.; Andriopoulos, D.; Tsapas, A.; Klaassen, R.J.; Vlachaki, E. A Cross-Sectional, Multicentric, Disease-Specific, Health-Related Quality of Life Study in Greek Transfusion Dependent Thalassemia Patients. Healthcare 2024, 12, 524. Klonizakis, P.; Roy, N.; Papatsouma, I.; Mainou, M.; Christodoulou, I.; Pantelidou, D.; Kokkota, S.; Diamantidis, M.; Kourakli, A.; Lazaris, V.; Andriopoulos, D.; Tsapas, A.; Klaassen, R.J.; Vlachaki, E. A Cross-Sectional, Multicentric, Disease-Specific, Health-Related Quality of Life Study in Greek Transfusion Dependent Thalassemia Patients. Healthcare 2024, 12, 524.

Abstract

The assessment of Health-Related Quality of Life (HRQoL) in Thalassemia offers a holistic approach to the disease and facilitates better communication between physicians and patients. This study aimed to evaluate the HRQoL of Transfusion-Dependent Thalassemia (TDT) patients in Greece. This was a multicentre, cross-sectional study conducted in 2017, involving 283 adult TDT patients. All participants completed a set of two QoL questionnaires, the generic SF-36v2 and the disease-specific TranQol. Demographic and clinical characteristics were used to predefine patient subgroups. Significant factors identified in univariate analysis were entered into a multivariate analysis to assess their effect on HRQoL. The SF-36 scores of TDT patients were consistently lower, compared to the general population in Greece. The mean summary score of TranQol was relatively high (71±14%), exceeding levels observed in national surveys in other countries. Employment emerged as the most significant independent factor associated with better HRQoL, whereas age had the most significant negative effect. This study represents the first comprehensive QoL assessment in a representative sample of the TDT population in Greece. The implementation of TranQol allowed for the quantification of HRQoL in Greece, establishing a baseline for future follow-up, and identifying more vulnerable patient subgroups.

Keywords

Transfusion-Dependent Thalassemia; Health-Related Quality of Life; Patient Reported Outcomes; disease-specific TranQol questionnaire; Healthcare policy; Thalassemia Unfastructure

Subject

Biology and Life Sciences, Life Sciences

Copyright: This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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