جودة الحياة لدى المراهقين والبالغين المصابين بمرض بيتا ثلاسيميا الكبرى في مركز أمراض الدم الوراثية في مدينة كربلاء 2024

Quality of Life of Adolescent and Adult Patients with Beta-Thalassemia major at the Hereditary Blood Center in Kerbala City, 2024

Abstract
Background: Beta-thalassemia major (β-TM) is a chronic hereditary blood disorder requiring lifelong blood transfusions and iron chelation therapy. It significantly affects the quality of life (QoL), especially in resource-limited settings.
Objective: This study aims to assess the health-related quality of life (HRQoL) among adolescent and adult patients with Beta-thalassemia major in Kerbala, Iraq, and to identify associated demographic and clinical determinants.
Methods: A cross-sectional study was conducted at the Hereditary Blood Diseases Center in Kerbala between 1st November 2023to 30th of December 2024.A total of 170 patients aged ≥12 years were enrolled in the study. Data were collected using the Arabic version of the Short Form-36 questionnaire, with additional World Health Organization Quality Of Life -BREF items. Statistical analysis was performed using SPSS version 23.
Results:
No significant differences in quality of life (QoL) were found concerning age or gender. Single, educated, employed participants and those with higher income showed better QoL scores. Patients with later disease onset and those receiving more frequent blood transfusions had improved QoL, while unexpectedly, individuals not on chelation therapy reported higher scores in several domains.
Conclusion: Quality of Life in β-TM patients are significantly influenced by socioeconomic and clinical factors. Comprehensive, multidisciplinary care—especially addressing mental health and social integration—is essential to improve overall well-being