Health-related quality of life in children aged 8-12 years with thalassemia: a cross-sectional study using the pediatric quality of life inventory PedsQL
DOI:
https://doi.org/10.18203/2320-6012.ijrms20260624Keywords:
Children, Cross-sectional study, Pediatric quality of life inventory, Physiotherapy, Quality of life, ThalassemiaAbstract
Background: Thalassemia is a chronic hereditary hemoglobinopathy characterized by defective hemoglobin synthesis, resulting in lifelong anaemia and dependence on regular blood transfusions and iron chelation therapy. The prolonged treatment burden, frequent hospital visits, and associated physical and psychosocial challenges can significantly impair the quality of life (QoL) of affected children. Assessment of QoL is essential to understand the multidimensional impact of the disease beyond clinical parameters and to support holistic, patient-centred care.
Methods: A cross-sectional study was conducted among 40 children aged 8-12 years diagnosed with thalassemia and attending Samraksha- Thalassemia Day Care Centre, Bengaluru. Quality of life was assessed using the parent-proxy version of the pediatric quality of life inventory (PedsQL) 4.0 generic core scales, which evaluates physical, emotional, social, and school functioning. Demographic and anthropometric data were recorded. Descriptive statistics were used, and associations between overall QoL scores and gender, age, height, weight, and body mass index were analysed using appropriate statistical tests.
Results: Quality of life was compromised across all domains. The lowest median scores were observed in physical functioning (median: 3; IQR: 2-5) and social functioning (median: 3; IQR: 1-4). The median overall QoL score was 14.5 (IQR: 11-20.25). Male children demonstrated significantly higher overall QoL scores compared to female children (p=0.024).
Conclusions: Children with thalassemia experience significant impairments in multiple domains of quality of life, emphasizing the need for comprehensive multidisciplinary management.
Metrics
References
Weatherall DJ, Akinyanju O, Fucharoen S, Olivieri NF. Inherited disorders of hemoglobin. In: Jamison DT, Breman JG, Measham AR, eds. Disease Control Priorities in Developing Countries. 2nd ed. Washington (DC): World Bank; 2006:663-680. DOI: https://doi.org/10.1596/978-0-8213-6179-5/Chpt-34
Ministry of Health and Family Welfare, Government of India. Prevention and Control of Hemoglobinopathies in India- Thalassemia, Sickle Cell Disease and Other Variant Hemoglobins. New Delhi: National Health Mission; 2016.
Choudhry VP, Arora JS. Thalassemia. In: Gupta P, Menon PSN, Ramji S, Lodha R, eds. PG Textbook of Paediatrics. Vol. 2. New Delhi: Jaypee Brothers Medical Publishers; 2018:1556-1565.
Firkin F, Chesterman C, Penington D, Rush B. De Gruchy’s Clinical Haematology in Medical Practice. 5th ed. Oxford: Blackwell Scientific Publications; 1989.
Rund D, Rachmilewitz E. Beta-thalassemia. N Engl J Med. 2005;353(11):1135-46. DOI: https://doi.org/10.1056/NEJMra050436
Cappellini MD, Cohen A, Porter J, Taher A, Viprakasit V. Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT). 3rd ed. Nicosia: Thalassaemia International Federation; 2014.
Varni JW, Seid M, Kurtin PS. PedsQL™ 4.0: reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Med Care. 2001;39(8):800-12. DOI: https://doi.org/10.1097/00005650-200108000-00006
Sharma S, Seth B, Jawade P, Ingale M, Setia MS. Quality of life in children with beta-thalassemia major: a cross-sectional study. Indian J Pediatr. 2017;84(6):475-80. DOI: https://doi.org/10.1007/s12098-016-2267-z
Thavorncharoensap M, Torcharus K, Nuchprayoon I, Riewpaiboon A, Indaratna K, Ubol BO. Factors affecting health-related quality of life in Thai children with thalassemia. BMC Hematol. 2010;10(1):1. DOI: https://doi.org/10.1186/1471-2326-10-1