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Original Articles

Clinical profiles, medical complications and quality of life of children diagnosed with thalassaemia major in Peradeniya Teaching Hospital

Authors:

Kavinda Chandimal Dayasiri ,

Lady Ridgeway for Hospital for Children, Colombo, Sri Lanka, LK
About Kavinda
Lady Ridgeway for Hospital for Children, Colombo, Sri Lanka
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Asanga Kulathilake,

Faculty of Medicine, University of Peradeniya, Sri Lanka, LK
About Asanga
Faculty of Medicine, University of Peradeniya, Sri Lanka
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Rasnayaka M Mudiyanse

Faculty of Medicine, University of Peradeniya, Sri Lanka, LK
About Rasnayaka
Faculty of Medicine, University of Peradeniya, Sri Lanka
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Abstract

Background: Thalassaemia presents a range of serious clinical and psychological challenges during its clinical course. Only limited data exists regarding health related quality of life of children with beta thalassemia major in Sri Lanka.

Objectives: To assess the physical, social, and emotional health of children more than 12 years of age with beta thalassemia major at the Professorial Paediatric Unit, Teaching Hospital Peradeniya, Sri Lanka and to identify the clinical profiles and medical complications among these children.

Method: This case control study included all children (n=40) diagnosed with thalassemia major and who were above 12 years of age at professorial paediatric unit, Teaching Hospital Peradeniya (THP), Sri Lanka. Clinical profiles, medical complications and physical, emotional and social health related quality of life of the participant children were assessed over a period of six months and were compared with age and gender matched control group of children selected from the medical wards of THP who did not have any chronic illnesses.

Results:Forty patients were available for analysis and mean age was 17 years (range 12- 24 years). Twenty (50%) were females. Thirty (75%) fathers and 28 (70%) mothers had received secondary education. Sixteen (40%) had delayed puberty, 17 (42.5%) had short stature and 11 (27.5%) had hypothyroidism. Restriction of sports, academic failure and restriction of leisure activities had the most impact as individual factors determining physical health in older children. The psychological health was adversely affected by altered physical appearance, delayed pubertal features and being labelled with a debilitating illness in both age groups of children with beta thalassemia. The families of these children had faced significant financial and transport difficulties and risk of lack of care to siblings. Most parents believed that services from social support group were required.

Conclusions: Factors underpinning the quality of life of patients with thalassemia above 12 years of age at professorial paediatric unit, Teaching hospital Peradeniya were diverse and included physical, psychological, social and family health related factors. The effect of most factors determining physical health increased with increased age of patients with thalassemia.

Sri Lanka Journal of Child Health, 2018; 47: 112-117

How to Cite: Dayasiri, K.C., Kulathilake, A. and Mudiyanse, R.M., 2018. Clinical profiles, medical complications and quality of life of children diagnosed with thalassaemia major in Peradeniya Teaching Hospital. Sri Lanka Journal of Child Health, 47(2), pp.112–117. DOI: http://doi.org/10.4038/sljch.v47i2.8475
Published on 05 Jun 2018.
Peer Reviewed

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