DOI: http://dx.doi.org/10.18203/2349-3291.ijcp20213727

A study on quality of life among thalassemic children aged 8 to 18 years

Indersain Jajhara, Ganesh Choudhary, Jagdish Singh, Vikal Chachan, Anil Kumar

Abstract


Background: The assessment of quality of life in children, especially in those with chronic illness such as thalassaemia, is particularly important. It differs from other forms of medical assessment in that it focuses on the individuals’ own views of their well-being and other aspects of life, giving a more holistic view of well-being.

Methods: Hospital based descriptive, observational study was conducted on 200 school-age children. Two tools were used to collect the necessary data. The first was a structured interview questionnaire sheet including socio-demographic data of children and their parents as well as medical history. The second tool was a standardized tool (Pediatric Quality of Life Inventory TM Version 4.0).

Results: The results of the present study revealed that the quality of life of school-age children with Thalassemia Major was affected. According to child’s report regarding total QOL score 30% of children had good score compared to 35% in parent’s report, while 65% had fair score compared to 60% in parent’s report. Emotional functioning scored the lowest followed by physical then school and social functioning. Regarding compliance with treatment, 91% of the studied children had regular blood transfusion therapy. In addition, 81% of the studied children were compliant with iron chelation therapy.

Conclusions: Thalassemia has a negative impact on perceived physical, emotional, social and school functioning in thalassemia patients. There was a significant association between the total quality of life and compliance with blood transfusion and regular iron chelation therapy in both child and parent report.


Keywords


Quality of life, Thalassemia major, School-age

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References


Amal M, El Dakhakhny, Hesham MA, Mohamed SE. Quality of Life of School Age Thalassemic Children at Zagazig City. Journal of American Science. 2011;7(1):186-97.

Mazzone L, Battaglia L, Andreozzi F. Emotional impact in beta-Thalassemia major children following cognitive-behavioral family therapy and quality of life of caregiving mothers. Clinical Practice and Epidemiology in Mental Health. 2009,5:5.

Borgna-Pignatti C, Rugolotto S, De Stefano PD, Zhao H. Survival and Complications in Patients With Thalassemia Major Treated With Transfusion and Deferoxamine Haematologica. 200489(10):1187-93.

Sachdeva A, Yadav SP, Berry AM. Assessment of quality of life in Thalassemia major. Int J Hemat. 2002;76(1):4-26.

Ismail A, Campbell MJ, Ibrahim HM. Health Related Quality of Life in Malaysian children with Thalassaemia. Health Qual Life Outcomes. 2006;4(1):39.

Dahlui M, Hishamshah MI, Rahman AJ. Quality of life in transfusion dependent Thalassaemia patients on desferrioxamine treatment. Singapore Med J. 2009;50(8):794.

Varni JW, Seid M, Rode CA. The PedsQOL: Measurement model for the pediatric quality of life inventory. Medical Care. 1998;37(2):126-39.

Shaligram D, Girimaji S, Chaturvedi SK. Psychological problems and quality of life in children with thalassemia. Indian Journal of Pediatrics. 2007;74(8):727-30.

Cheuk DK, Mok AS, Lee AC. Quality of life in patients with transfusion-dependent thalassemia after hematopoietic SCT. Bone Marrow Transplantation. 2008;42:319-327.

Thavorncharoensap M, Torcharus K, Nuchprayoon I. Factors affecting health-related quality of life in Thai children with Thalassemia. BMC Blood Disorders. 2010;10(1):12-5.

Caro JJ, Ward A, Green TC. Impact of thalassemia major on patients and their families. Acta Haematol. 2002;107:150-57.

Saddowski H, Kolvin I, Celemente C. Psychopathology in children from families with blood disorders a cross national study. Enr Child Adolesc psychiatry. 2002;11:151-61.

Paradah PV, Shah H, Rao P. Psychopathology and Self-esteem in Chronic illness. India J Pediatrics. 2003;70(2):135-8.

Gharaibeh H, Amarneh B, Zamzam S. The psychological burden of patients with beta Thalassemia major in Syria. Pediatrics international. 2009;51:630-36.

Saeed N. Patient news: My life. United Kingdom, Thalassamia Society Newsletter. 2004;99(10):9.

Cantan D, Ratip S, Kaptan S. Psychological burden of beta thalassemia major in Antalya, south Turkey. Soc Sci Med. 2003;56(4):815-19.

Telfer P, Costantinidou G, Andreou P. Quality of life in Thalassemia. Ann N Y Acad Sci. 2005;1054:273-82.

Cianciulli P. Treatment of iron overload in Thalassemia. Pediatr Endocrinol Rev. 2008;6(1):208-13.