Quality of life in patients with transfusion-dependent hemoglobinopathies: evidence from an expert centre in Greece - 14/02/26

Doi : 10.1016/j.tracli.2026.01.008

Sophia Delicou ^a,^⁎ , Aikaterini Xydaki ^a, Maria Moraki ^a, Natalia Karantzanou ^a, Clive Richardson ^b, Constantina Politis ^c

^a Thalassemia and Sickle Cell Unit, Expertise Center of Hemoglobinopathies and Their Complications Hippokrateio General Hospital of Athens, Athens, Greece

^b Dept of Economic and Regional Development, Panteion University of Social and Political Sciences, Athens, Greece

^c Department of Microbial Resistance and Infections in Health Care Settings, Directorate of Surveillance and Prevention of Infectious Diseases, Hellenic National Public Health Organization, Athens, Greece

^⁎ Corresponding author at: Thalassemia and Sickle Cell Unit, Expertise Center of Hemoglobinopathies and Their Complications Hippokrateio General Hospital of Athens, Athens, Greece 114 Vas.Sofias str, Athens Greece. Thalassemia and Sickle Cell Unit Expertise Center of Hemoglobinopathies and Their Complications Hippokrateio General Hospital of Athens, Athens Greece 114 Vas.Sofias str Athens Greece

Sous presse. Épreuves corrigées par l'auteur. Disponible en ligne depuis le Saturday 14 February 2026

Highlights

•	Transfusion practices and chelation adherence vary widely among Greek adults with hemoglobinopathies.
•	Monitoring of transfusion-related complications, including iron overload, is inconsistently applied.
•	Patient-reported outcomes highlight organizational and psychosocial burdens beyond routine follow-up.

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Abstract

Background

Adults with hemoglobinopathies require lifelong transfusion support and long-term monitoring, which may substantially affect daily life and treatment burden. Data describing patient-reported transfusion practices in Greece remain limited.

Objectives

To describe transfusion practices, chelation therapy, monitoring patterns, and patient-reported daily life impact among Greek adults with hemoglobinopathies.

Methods

A cross-sectional anonymous online survey was distributed to adults (≥18 years) with self-reported hemoglobinopathies living in Greece. The questionnaire collected data on demographics, disease category, transfusion frequency, chelation therapy, monitoring practices, complications, and patient-reported impact on daily life. Analyses were descriptive.

Results

Transfusion practices and chelation therapy among participants are summarized in Table 1. A total of 114 respondents (mean age 49.4 ± 9.6 years; 53.5% female) completed the survey. Most participants reported regular transfusion therapy, commonly at intervals of ≤15 days, with variable transfusion volumes per session. Chelation therapy was widely reported, although adherence varied. Monitoring practices, including imaging for iron overload, were inconsistently reported. Participants described substantial treatment-related burden, including frequent healthcare visits and concerns regarding blood availability.

Conclusions

Greek adults with hemoglobinopathies report considerable transfusion-related treatment burden affecting daily life. These findings support the need for structured follow-up pathways and patient-centered care strategies.

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Keywords : Hemoglobinopathy, Transfusion-dependent thalassemia, Blood transfusion, Iron overload, Chelation therapy, Patient-reported outcomes