Real‐world complication burden and disease management paradigms in transfusion‐related β‐thalassaemia in Greece: Results from ULYSSES, an epidemiological, multicentre, retrospective cross‐sectional study
Antonis Kattamis,
Ersi Voskaridou,
Sophia Delicou,
Evangelos Klironomos,
Ioannis Lafiatis,
Foteini Petropoulou,
Michael D. Diamantidis,
Stylianos Lafioniatis,
Loukia Evliati,
Eleni Kapsali,
Kiki Karvounis‐Marolachakis,
Despoina Timotheatou,
Chrysoula Deligianni,
Panagiotis Viktoratos,
Alexandra Kourakli
Affiliations
Antonis Kattamis
First Department of Pediatrics Thalassemia Unit National and Kapodistrian University of Athens Athens Greece
Ersi Voskaridou
Expertise Center in Rare Haematological Diseases‐Haemoglobinopathies General Hospital of Athens “Laikon” Athens Greece
Sophia Delicou
Thalassemia and Sickle Cell Unit General Hospital of Athens “Hippocrateion” Athens Greece
Evangelos Klironomos
Thalassemia and Sickle Cell Unit General Hospital of Heraklion “Venizelion” Heraklion Greece
Ioannis Lafiatis
Thalassemia and Sickle Cell Unit General Hospital of Mytilene “Vostanio” Mytilene Greece
Foteini Petropoulou
Thalassemia Unit General Hospital of Athens “Georgios Gennimatas” Athens Greece
Michael D. Diamantidis
Thalassemia and Sickle Cell Disease Unit General Hospital of Larissa “Koutlimbaneio & Triantafylleio” Larissa Greece
Stylianos Lafioniatis
Thalassemia and Sickle Cell Unit General Hospital of Volos “Achilopouleio,” Volos Greece
Loukia Evliati
Thalassemia and Sickle Cell Unit General Hospital of Athens “Evaggelismos” Athens Greece
Eleni Kapsali
Department of Hematology University Hospital of Ioannina Ioannina Greece
Kiki Karvounis‐Marolachakis
Medical Department Genesis Pharma SA Athens Greece
Despoina Timotheatou
Medical Department Genesis Pharma SA Athens Greece
Chrysoula Deligianni
Medical Department Bristol‐Myers Squibb Company SA Athens Greece
Panagiotis Viktoratos
Medical Department Bristol‐Myers Squibb Company SA Athens Greece
Alexandra Kourakli
Department of Internal Medicine Hematology Division University General Hospital of Patras Patras Greece
Abstract Patients with transfusion‐dependent beta (β)‐thalassaemia experience a broad range of complications. ULYSSES, an epidemiological, multicentre, retrospective cross‐sectional study, aimed to assess the prevalence and severity of treatment and disease complications, capture disease management and identify predictors of complications in patients with transfusion‐dependent β‐thalassaemia, treated in routine settings in Greece. Eligible patients were adults diagnosed with β‐thalassaemia ≥12 months before enrolment and having received ≥6 red blood cell (RBC) units (excluding elective surgery) with no transfusion‐free period ≥35 days in the 24 weeks before enrolment. Primary data were collected at a single visit and through chart review. Between Oct 21, 2019, and Jun 15, 2020, 201 eligible patients [median (interquartile range, IQR) age 45.7 (40.2–50.5) years; 75.6% > 40 years old; 64.2% female] were enrolled, a mean (standard deviation) of 42.9 (7.8) years after diagnosis. Median (IQR) age at diagnosis and RBC transfusion initiation were 0.8 (0.4–2.8) and 1.3 (1.0–5.0) years, respectively. From diagnosis to enrolment, patients had developed a median of six (range: 1–55) complications; 19.6% were grade ≥3. The most represented complications were endocrine/metabolic/nutrition disorders (91.5%), surgical/medical procedures (67.7%) and blood/lymphatic system disorders (64.7%). Real‐world data generated by ULYSSES underscore the substantial complication burden of transfusion‐dependent β‐thalassaemia patients, routinely managed in Greece.
