Clinical, Economic,and Psychosocial Burden of Thalassemia in Sohag

The Hidden Burden of Thalassemia in Sohag Clinical Economic and Psychosocial Perspectives

This study aims to assess the clinical, economic, and psychosocial burden of thalassemia among affected children in Sohag. Clinically, the study will evaluate disease severity, transfusion requirements, iron overload, complications, and treatment-related factors. Economically, it will estimate direct medical costs, including transfusions, medications, investigations, hospital visits, and other healthcare expenses, as well as indirect costs such as school/work absenteeism and caregiver burden. Psychosocial aspects will include assessment of quality of life, psychological well-being, social functioning, and the impact of the disease on patients and their families.

Thalassemia constitutes one of the most common inherited hemoglobin disorders worldwide and remains a major public health problem in Egypt, where carrier rates approach 9-10% and both alpha and beta thalassemia gene defects are well documented in the population . In Egypt, the burden of disease is particularly evident among pediatric patients with transfusion dependent beta thalassemia (TDT), who require lifelong regular blood transfusions and iron chelation therapy and are consequently at risk of iron overload, organ damage, and transfusion transmitted infections despite improvements in transfusion safety .

Regional studies from Upper Egypt have documented a high frequency of transfusion related complications in multitransfused children, including elevated rates of hepatitis C and other infections, and have highlighted ongoing gaps in screening and blood safety practices that continue to contribute to clinical morbidity . Concurrently, quality of life (QoL) research in Egyptian pediatric thalassemia populations demonstrates consistent and clinically meaningful impairments across physical, emotional, social, and school functioning domains, with socioeconomic disadvantage and markers of greater disease severity (for example, higher ferritin and longer disease duration) associated with worse outcomes .

Beyond direct clinical consequences, thalassemia imposes a substantial economic and psychosocial burden on families and health systems . Cost analyses and health resource studies indicate significant direct medical expenses and large indirect costs from caregiver absenteeism, transport, and lost productivity, and these burdens are magnified in low resource settings where comprehensive social support is limited. Cultural factors such as high rates of consanguineous marriage and variable uptake of premarital screening in Egypt also influence disease prevalence and complicate prevention strategies

Inclusion Criteria: Children and adolescents diagnosed with thalassemia. Age from 2 to 18 years. Regular follow-up at the selected pediatric hematology clinic or thalassemia unit

Exclusion Criteria:Children with other chronic hematological disorders unrelated to thalassemia.

Children with severe acute illness at the time of data collection. Children or caregivers who refuse participation.

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