<p>Transfusion-dependent thalassemia (TDT) leads to substantial physical, psychosocial, and socioeconomic burdens, yet HRQoL data in Indian adolescents and adults remain limited. This study assessed HRQoL using generic and disease-specific tools in older TDT patients. A nine-month prospective observational study was conducted in patients aged ≥ 13 years from January 2025–September 2025. Clinical and sociodemographic details were collected, and HRQoL was measured using PedsQL and TranQoL. A total of 133 patients (67 males, 66 females; mean age 24.98 ± 8.21 years) were enrolled. Mean PedsQL score was 70.22 ± 12.72, highest in social functioning and lowest in emotional functioning. Mean TranQoL score was 68.44 ± 12.24, highest in school/career and lowest in emotional health. Univariate analysis showed lower HRQoL associated with older age, higher transfusion requirements, lower education, unemployment, lower socioeconomic status, serum ferritin &gt; 3000 ng/mL, hepatic/cardiac iron overload, skeletal, endocrine, and growth/puberty complications, splenectomy, and dual chelation. On multivariable analysis, lower-middle socioeconomic status, ferritin &gt; 3000 ng/mL, and severe cardiac iron overload independently predicted lower PedsQL scores. For TranQoL, lower-middle socioeconomic status, ferritin &gt; 3000 ng/mL, and splenectomy independently predicted poorer HRQoL. Socioeconomic disadvantage, high iron burden, and organ complications significantly affect HRQoL in older TDT patients, highlighting the need for targeted clinical and psychosocial interventions.</p>

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A Prospective Study on Health-Related Quality of Life of Adolescents and Adult Patients with Thalassemia in a Tertiary Care Center

  • Ankita Chakraborty,
  • Manas Kalra,
  • Anupam Sachdeva,
  • V. K. Khanna,
  • Robert Klaassen,
  • Dinesh Kaul

摘要

Transfusion-dependent thalassemia (TDT) leads to substantial physical, psychosocial, and socioeconomic burdens, yet HRQoL data in Indian adolescents and adults remain limited. This study assessed HRQoL using generic and disease-specific tools in older TDT patients. A nine-month prospective observational study was conducted in patients aged ≥ 13 years from January 2025–September 2025. Clinical and sociodemographic details were collected, and HRQoL was measured using PedsQL and TranQoL. A total of 133 patients (67 males, 66 females; mean age 24.98 ± 8.21 years) were enrolled. Mean PedsQL score was 70.22 ± 12.72, highest in social functioning and lowest in emotional functioning. Mean TranQoL score was 68.44 ± 12.24, highest in school/career and lowest in emotional health. Univariate analysis showed lower HRQoL associated with older age, higher transfusion requirements, lower education, unemployment, lower socioeconomic status, serum ferritin > 3000 ng/mL, hepatic/cardiac iron overload, skeletal, endocrine, and growth/puberty complications, splenectomy, and dual chelation. On multivariable analysis, lower-middle socioeconomic status, ferritin > 3000 ng/mL, and severe cardiac iron overload independently predicted lower PedsQL scores. For TranQoL, lower-middle socioeconomic status, ferritin > 3000 ng/mL, and splenectomy independently predicted poorer HRQoL. Socioeconomic disadvantage, high iron burden, and organ complications significantly affect HRQoL in older TDT patients, highlighting the need for targeted clinical and psychosocial interventions.