DOI: http://dx.doi.org/10.18203/2394-6040.ijcmph20213561

A cross-sectional study to assess quality of life in 2-18 years children and adolescent living with beta thalassemia major registered at comprehensive thalassemia care centre attached to tertiary care hospital in a metropolitan city

Basvaraj S. Lohare, Seema S. B. Gokhe

Abstract


Background: Thalassemia is a serious inherited blood disorder. Children and adolescent living with thalassemia major require lifelong repeated blood transfusions and costly medicines for their survival. In India, β-thalassemia prevalence is 3-4%. Children are basic pillars of society although they are the most vulnerable part of society in view of nutrition, education and social life.

Methods: Cross-sectional, observational study was conducted at comprehensive thalassemia care centre attached to tertiary care hospital in a metropolitan city. 76 children and adolescents living with beta thalassemia major aged between 2 to 18 years registered for blood transfusion were included.

Results: The mean age of the study subjects was 13.81±6.71 years, 63.2% were males. Majority of study subjects belonged to Hindu religion. 46.3% study subjects were in primary school, 84.21% parents of study subjects gave the history of non-consangious marriage. 92.1% of the study subjects’ parents and their relatives were not aware of history of thalassemia in the family. Genetic counselling was offered to 71.1%. Age of onset of disease was 0-6 months amongst 64.5% of children. 53.9% children had B positive blood group. Total health summary score, emotional health summary score, social health summary score and psychosocial health summary score was better in age group 2-4 years. School health summary score was very low in all age groups.

Conclusions: To improve the quality of life of children and adolescent living with beta thalassemia and to reduce catastrophic out pocket expenditure from parents of study subjects, there is need of developing comprehensive thalassemia care center at medical colleges/district hospitals for preventive and promotive health care of children and adolescents.

 


Keywords


Quality of life, Beta thalassemia major, Children, Adolescents

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References


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