Psychosocial burden in thalassemia

Area of Science:

• Medical Social Sciences
• Adolescent Medicine
• Hematology

Background:

• Transfusion-dependent beta-thalassemia major is a chronic condition requiring lifelong treatment.
• Previous studies in Western countries indicated a psychosocial burden associated with this disease.
• Limited research exists on the psychosocial impact on Indian adolescents with beta-thalassemia major.

Purpose of the Study:

• To investigate the psychosocial life aspects of Indian adolescents diagnosed with transfusion-dependent beta-thalassemia major.
• To assess the perceived disease burden in various psychosocial domains among these adolescents.

Main Methods:

• A cross-sectional study involving structured interviews with affected adolescents.
• Utilized a questionnaire to gather data on perceived psychosocial impacts of thalassemia.

Main Results:

• Adolescents reported significant negative impacts of thalassemia on education (70%) and sports (72%).
• Body image dissatisfaction was common; however, family and social relationships were perceived as unaffected.
• Anxiety regarding future health and education was prevalent, with most adolescents not discussing their condition with friends and relying on parental support.

Conclusions:

• Indian adolescents with transfusion-dependent beta-thalassemia major face a substantial psychosocial disease burden.
• There is a critical need for targeted intervention programs and enhanced disease understanding to mitigate these challenges.