Thalassemia Major: how do we improve quality of lifeReport as inadecuate




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SpringerPlus

, 5:1895

Biomedical and Life Sciences

Abstract

BackgroundThalassemia Major is a preventable genetic disorder characterized by abnormal hemoglobin synthesis and lifelong blood transfusions. The children suffering from Thalassemia Major have poor quality of life. This study was conducted to assess the factors influencing quality of life of these children and how it can be improved.

MethodsA descriptive cross sectional study was conducted in 2014 at Thalassemia Day Care Centre of a tertiary level children’s hospital in Delhi, to assess quality of life of children suffering from Thalassemia Major. A total of 241 eligible children age 2–18 years were enrolled in the study. Socio demographic and clinical characteristics were collected from interview and existing medical records. The PedsQL 4.0 generic core scale was used for assessing the quality of life of the children.

ResultsThe mean age of children was 8.69 ± 4.98 years. Two-thirds 63.5% were boys. The total mean QoL score of the children was 82.0 ± 14.4. The quality of life scores were better for boys as compared to girls. The most affected domain was the emotional domain which showed statistically significant p = 0.025 difference between boys and girls. The total QoL scores were significantly affected by the current age of the child p = 0.000 and presence of co-morbidity p = 0.026. Children not on any form of iron chelation therapy p = 0.003 and fewer hospital visits p = 0.044 had better QoL scores.

ConclusionsFactors improving the quality of life were control of iron overload and adverse effects of ICTs, management of co morbidities and fewer hospital visits.

KeywordsBeta Thalassemia Major Quality of life Hemoglobinopathies AbbreviationsHRQoLHealth related quality of life

QoLQuality of life

ICTIron chelation therapy

SPSSStatistical Package for the Social Sciences

SDStandard deviation

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Author: Nonita Dhirar - Jyoti Khandekar - Damodar Bachani - Deonath Mahto

Source: https://link.springer.com/



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