Objective: To assess the quality of life among thalassemic children and to find out association of quality of life (QOL) with the socio-demographic factors, and clinico-therapeutic profile.

Methods: This cross sectional descriptive epidemiological study was conducted from July 2011 through June 2012 on 365 admitted thalassemic patients of 5 to 12 y of age in the Burdwan Medical College and Hospital. Parents of the children were interviewed using Paediatric Quality of Life Inventory 4.0 Generic Core Scale. Statistically significant variables in bivariate analysis were considered for correlation matrix where independent variables were found inter related. So, partial correlation was done and statistically significant variables in partial correlation were considered for linear regression.

Results: The mean age of 365 thalassemic children was 8.3 ± 2.4 y. Multiple linear regressions predicted that only 70.5 % variation of total summary score depended on duration since splenectomy (31.2 % variation), last pre transfusion Hb level (20.7 %), family history of thalassemia (17.3 %) and frequency of blood transfusions (1.3 %). After splenectomy, thalassemic children could lead a better quality of life upto 5 y only. The betterment of the quality of life needs maintaining pre transfusion Hb level above 7 g/dl. Previous experience of the disease among the family members enriches the awareness among them and helps them to take correct decisions timely about the child and that leads to better QOL.

Conclusions: More awareness regarding the maintenance of pre transfusion Hb level should be built up among parents and families where such disease has occurred for the first time.

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http://dx.doi.org/10.1007/s12098-014-1670-6DOI Listing

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