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CC BY 4.0 · Journal of Health and Allied Sciences NU
DOI: 10.1055/s-0044-1792020
Original Article

A Cross-sectional Study to Evaluate the Quality of Life among Children Diagnosed with Thalassemia Major in Gujarat

Dhara Bipin Joshi 
1   Department of Pediatrics, Child Health Nursing, Parul University, Vadodara, Gujarat, India
,
Uma Siddharth Nayak 
2   Department of Pediatrics, Parul Institute of Medical Science & Research, Parul Sevashram Hospital, Parul University, Vadodara, Gujarat, India
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Abstract

Background Thalassemia, a chronic condition that lacks an effective treatment, significantly impairs a child's quality of life (QoL), affecting academic performance and various dimensions such as physical, emotional, and social functioning. The objectives of this study are to evaluate the QoL of children with thalassemia major and to investigate the relationship with selected demographic variables of children. This study addresses the crucial need to assess the QoL among children living with thalassemia major. By evaluating QoL, health care professionals can tailor treatment approaches to improve the lives of children affected by thalassemia major.

Study Design and Methods This cross-sectional analytical study was conducted at the district division of the Indian Red Cross in Ahmedabad, Gujarat. The consecutive sampling technique was used. The study included 117 children with β-thalassemia major. The QoL of children aged 8 to 18 years was evaluated in September 2021 using the Short Form-36 (SF-36) questionnaire. Statistical analysis involved mean, standard deviation, and chi-square test.

Results The mean age of the participants was 14.9 ± 3.1 years. The majority of the included children (56%) received blood transfusions for 15 days. The mean total score of SF-36 was 68.62 ± 12.96. Out of the total number of children, 55 had a score of more than 70, 50 had a score between 50 and 70, and 12 had a poor QoL with a score less than 50. The chi-square analysis reveals a statistically significant association between gender perception and QoL (p = 0.033). Similarly, a notable association is noted between monthly family income and QoL (p = 0.037).

Conclusion This study revealed that the QoL in children diagnosed with thalassemia major is compromised. QoL assessment should be initiated for all children with thalassemia to identify and implement essential interventions that focus on the affected domains.

Keywords

β-thalassemia - QoL - thalassemia major - quality of life - children

Ethical Approval

The registered ethics committee at Rudraksh Hospital (ECR/1139/Inst/GJ/2018/RR-21) thoroughly reviewed and granted ethical approval for this study. All participants provided their consent.


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Publication History

Article published online:
08 January 2025

© 2025. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)

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