Health Related Quality of Life in Malaysian children with thalassaemia

Adriana Ismail, Michael J Campbell, Hishamshah Mohd Ibrahim, Georgina L Jones, Adriana Ismail, Michael J Campbell, Hishamshah Mohd Ibrahim, Georgina L Jones

Abstract

Background: Health Related Quality of Life (HRQoL) studies on children with chronic illness such as thalassaemia are limited. We conducted the first study to investigate if children with thalassaemia have a lower quality of life in the four dimensions as measured using the PedsQL 4.0 generic Scale Score: physical, emotional, social and role (school) functioning compared to the healthy controls allowing for age, gender, ethnicity and household income.

Methods: The PedsQL 4.0 was administered to children receiving blood transfusions and treatments at Hospital Kuala Lumpur, Malaysia using PedsQL 4.0 generic Scale Score. Accordingly, the questionnaire was also administered to a control group of healthy school children. Socio-demographic data were also collected from patients and controls using an interview schedule designed for the study.

Results: Of the 96 thalassaemia patients approached, 78 gave consent to be interviewed giving a response rate of 81.3%. Out of 235 healthy controls approached, all agreed to participate giving a response rate of 100%. The mean age for the patients and schoolchildren is 11.9 and 13.2 years respectively. The age range for the patients and the schoolchildren is between 5 to 18 years and 7 to 18 years respectively. After controlling for age and demographic background, the thalassaemia patients reported having significantly lower quality of life than the healthy controls.

Conclusion: Thalassaemia has a negative impact on perceived physical, emotional, social and school functioning in thalassaemia patients which was also found to be worse than the children's healthy counterparts. Continuing support of free desferal from the Ministry of Health should be given to these patients. More understanding and support especially from health authorities, school authorities and the society is essential to enhance their quality of life.

Figures

Figure 1
Figure 1
Impact of different Ages on School Functioning for Thalassaemia Children And Healthy Controls.

References

    1. Weatherall DJ. Thalassaemia and malaria:new insights into an old problem. Proceedings of the Association of American Physicians. 1999;111:278–282. doi: 10.1046/j.1525-1381.1999.99003.x.
    1. Vullo R, Modell B, Georganda B. What Is Thalassaemia? 2. The Thalassaemia International Federation; 1995.
    1. Weatherall DJ. The Thalassaemias: The Role of Molecular Genetics in an Evolving Global Health Problem. American Journal of Human Genetics. 2004;74:385–392. doi: 10.1086/381402.
    1. George E, Jamal A, Khalid F, Osman K. High performance liquid chromatography (HPLC) as a screening tool for classical beta-thalassaemia trait in Malaysia. Malaysian Journal of Medical Sciences. 2001;8:40–46.
    1. Tam S. The Star Online. Kuala Lumpur; 2005. RM 40 mil to treat 600,000 victims of thalassaemia.
    1. Anionwu E, Atkin K. The Politics of Sickle Cell and Thalassaemia. Buckingham: Open University Press; 2001.
    1. Saeed N. My Life. United Kingdom Thalassaemia Society Matters. 2004;99:10.
    1. Bowling A. Current state of the art in quality of life measurement. In: Carr AJ, Higginson IJ, Robinson P, editor. Quality of Life. London: BMJ Books; 2003.
    1. Clarke S, Eiser C. The measurement of health-related quality of life (QOL) in paediatric trials: a systematic review. Health Quality Life Outcomes. 2004;2:66. doi: 10.1186/1477-7525-2-66.
    1. Tefler P, Constantinidou G, Andreou P, Christou S, Modell B, Angastiniotis M. Quality of Life in Thalassaemia. Annals of the New York Academy of Science. 2005;1054:273–282. doi: 10.1196/annals.1345.035.
    1. Pakbaz Z, Treadwell M, Yamashita R, Quirolo K, Foote D, Quill L, Singer T, Vichinsky EP. Quality of Life in Patients with Thalassaemia Intermedia Compared to Thalassaemia Major. New York Academy of Sciences. 2005;1054:457–461. doi: 10.1196/annals.1345.059.
    1. Norman G, Sloan J, Wyrwich K. Interpretation of Changes in Health-related Quality of Life. Medical Care. 2003;41:582–592. doi: 10.1097/00005650-200305000-00004.
    1. Machin D, Campbell M, Payers P, Pinol A. Statistical tables for the design of clinical studies. 2. Oxford: Blackwell Scientific Publications; 1997.
    1. The PedsQL Measurement Model for the Pediatric Quality of Life Inventory
    1. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: Reliability and validity of the pediatric quality of life inventory generic core scales, mutidimensional fatigue scale, and cancer module. CANCER. 2002;94:2090–2106. doi: 10.1002/cncr.10428.
    1. Varni JW, Burwinkle TM, Seid M. The PedsQL 4.0 as a school population measure: Feasibility, reliability, and validity. Quality of Life Research. 2006;15:203–215. doi: 10.1007/s11136-005-1388-z.
    1. Campbell MJ, Machin D. Medical Statistics: A Commonsense Approach. 3. West Sussex: John Wiley & Sons Ltd; 2000.
    1. Swinscow TDV, Campbell MJ. Statistics at Square One. 10. London: BMJ Books; 2004.
    1. Upton P, Eiser C, Cheung I, Hutchings HA, Jenney M, Maddocks A, Russell IT, Williams JG. Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) generic core scales. Health Qual Life Outcomes. 2005;3:22. doi: 10.1186/1477-7525-3-22.
    1. Fayers P, Machin D. Quality of Life Assessment, Analysis and Interpretation. Chichester: John Wiley and Sons; 2001.
    1. Riley A. Evidence that school-age children can self report on their health. Ambulatory Paeditarics. 2004;4:374–376. doi: 10.1367/A03-178R.1.
    1. Vincent KA, Higginson IJ. Assessing quality of life in children. In: Carr AJ, Higginson IJ, Robinson P, editor. Quality of Life. London: BMJ Books; 2003.
    1. Coping in children with haemophilia and thalassaemia: A cross national study
    1. Canatan D, Ratip S, Kaptan S, Cosan R. Psychosocial burden of beta-thalassaemia major in Antalya, South Turkey. Social Science & Medicine. 2003;56:815–819. doi: 10.1016/S0277-9536(02)00080-1.
    1. Aydinok Y, Eremis S, Bukusoglu N, Yilmaz D, Solak U. Psychosocial implications of Thalassaemia Major. Paediatrics International. 2005;47:84. doi: 10.1111/j.1442-200x.2004.02009.x.
    1. Goldbeck L, Baving A, Kohne E. Psychosocial aspects of beta thalassaemia: distress, coping and adherence. Klinik Padiatrik. 2000;212:254–259. doi: 10.1055/s-2000-9683.

Source: PubMed

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