Long-term effect of thalassemia major on health-related quality of life of youth in Najaf city

Thalassemia can manifest in beta-thalassemia minor, thalassemia intermedia, and thalassemia major. Some characteristics of thalassemia major and its consequences are anticipated to influence the quality of life. This study aimed to determine the long-term effect of Thalassemia on the health-related quality of life of youth in Najaf City. The study is a descriptive cross-sectional study. This study was conducted in July-December 2022 at Al-Zahra Hospital/Thalassemia Center. The study involved 134 young people with thalassemia, selected through a random sampling approach. The data was collected through face-to-face interviews. The tools consist Data Collection for Patients Form and Pediatric Quality of Life Inventory Version 4.0. The data was analyzed using SPSS 22 and descriptive statistical methods, with Mann-Whitney U and Kruskall Wallis H test for comparisons. The study found that patients with physical, emotional, social, school, and psychosocial health summary scores and total scores had averages of 42.75, 34.03, 40.07, 40.67, 38.26, and 39.82, respectively. The study found that men with thalassemia major had significantly higher emotional functioning scores than women (p=0.022). The study found a significant difference between the patients' educational status regarding physical functioning, school functioning score, psychosocial health summary score, and total score (p<0.05). There was a significant correlation between the consanguinity of the patients participating in the study regarding the "Social Functioning," "Psychosocial Health Summary Score," and "Total Score" scores (p<0.05). There is a significant difference between patients with heart failure among study patients with all quality of life scores (p<0,05). Heart failure significantly negatively impacts all domains of quality of life. Male patients had significantly higher scores on emotional functioning than female patients. Educational status and Consanguinity significantly impact the quality of life of patients with thalassemia major. It is recommended to increase public awareness about thalassaemia, its prevention and the importance of pre-marital screening, especially in regions with high rates of consanguinity.