Quality of Life of Pakistani Children with β-Thalassemia Major

Abstract

Compromised quality of life (QoL) has been reported in individuals suffering from β-thalassemia major (β-TM) in Pakistan. However, insufficient data of its associated psychosocial, physical and other disease-related determinants is available. In an observational analytical study, 200 subjects aged between 5-25 years, were examined using a transfusion-dependent QoL (TranQoL) questionnaire. Clinical records and other related data were also gathered from transfusion center databases. The TranQoL mean score was 48.33 ± 5.6, ranging from 53.86 ± 13.6 for family functioning and support domain to 39.70 ± 18.4 for school and career functioning domain. Age, income, education, pre transfusion hemoglobin (Hb), serum ferritin level, pain, death due to β-thal, monetary issues and pain were significantly associated with TranQoL scores. It was not only the clinical conditions but life alterations, social relationship and psychological events also loomed in improvement of treatment outcomes. Therefore, a tetra-cone of patient, school representatives, family and physicians are needed for better patient prospective.

Keywords:

• β-Thalassemia major (β-TM)
• Pakistan
• quality of life (QoL)
• transfusion-dependent QoL (TranQol)

Acknowledgments

We would like to thank Dr. Robert J Klaassen, Melanie Kirby-Allen, Nancy L. Young and the Mapi Research Institute, Lyon, France, for granting permission for the use of TranQoL questionnaire. We are also grateful to the children, adolescents and parents who participated in this study and all staff at the Sundas Foundation, Lahore, Pakistan, for their cooperation.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.