Quality of life in patients with transfusion-dependent hemoglobinopathies: evidence from an expert centre in Greece.

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.