G-3904

Evaluating life quality in beta-thalassemia patients, Ali Asghar Hospital and Zafar Thalassemia Center

 Kosar Satari ¹ ℗, Neda Ashayeri ² ©   

 
Abstract

Introduction: Thalassemia is the most prevalent monogenic disease worldwide. The global prevalence of beta-thalassemia carriers is estimated to be 80 million, with Iran alone accounting for approximately 25,000 cases. The advent of enhanced therapeutic modalities has resulted in the progression of thalassemia major into the adult population, thereby impacting the patients’ quality of life (QOL). Individuals diagnosed with beta-thalassemia are predisposed to a range of physical and psychiatric complications that persist throughout their lives. This study aimed to evaluate the quality of life in thalassemia patients and factors influencing it. Methods and Materials: This study constitutes a descriptive and analytical cross-sectional investigation. A total of 120 beta-thalassemia major and intermediate patients over the age of 18 who did not have a debilitating disease, referred to Ali Asghar Hospital and Zafar Thalassemia Center from February 2023 to December 2023, were included. Beta thalassemia diagnosis was approved by previous hemoglobin electrophoresis reports. Data on demographics and medical history were collected through checklists. A comprehensive evaluation of the subjects’ quality of life was undertaken, employing the WHOQOL-BREF (Persian version) questionnaire. The present questionnaire has been meticulously designed to evaluate the QOL across five distinct dimensions: physical health, psychological well-being, social integration, environmental health, and a general quality of life score. Using SPSS 27 Pearson correlation test, one-way analysis of variance, and one sample T-test were implicated for data analysis. Results: In this study, 120 patients were examined, the majority of whom were females (57.5%) (mean age=33.8±9 years). The mean physical, psychological, social integration, environmental health and general QOL scores, were found to be 57.33%, 62.9%, 63.75% , 58.9%, and 58.33% respectively. The study revealed a negative correlation between age and general quality of life[P value0.001, r=-0.39], as well as physical [P value0.001, r=-0.37], social [P value=0.03, r=-0.19], and environmental health parameters [P value0.001, r=-0.31]. Subsequent analysis revealed no statistically significant differences in general QOL or its four subscales based on gender, marital status, age at the start of blood transfusions or the interval between transfusions (P value=0.05). The level of social integration score in patients with cardiac disease history [mean=41.66± 26.72%] was found to be significantly lower than in patients with no past medical history of cardiac disease[mean=65.83±20.12%] (P value=0.01). Also, last ferritin levels showed a negative correlation with physical health scores (P value=0.043, r=-0.18). Conclusion and Discussion: These findings are pivotal for future improvement of national thalassemia guidelines. Considering the role of iron chelation on ferritin levels, facilitating the accessibility of high-quality iron chelators could decrease long-term complications. Moreover, regular screenings could help diagnose complications on earlier stage, thus help improve patients’ life quality.

Keywords: Quality of life, thalassemia, WHOQOL-BREF, beta-thalassemia