Eduvariome HVP Malaysia: Promoting Knowledge and Awareness on Thalassaemia among Secondary School Students in North-East of Peninsular Malaysia
Keywords:
Eduvariome, MyHVP, Thalassaemia Awareness, Thalassaemia KnowledgeAbstract
Background and objective: Thalassaemia prevention which includes public education, screening and pre-marital counselling, forms important components of a prevention programme. The EduVariome programme under MyHVP Malaysia is an educational intervention programme developed to increase awareness on thalassemia and the importance of thalassemia screening. This study aimed to assess the effectiveness of this an educational intervention programme in increasing the awareness of secondary school students regarding thalassaemia. Method: This study was conducted among secondary school students aged between 14 to 17 years old. The programme was conducted by giving a lecture in the form of a forum related to thalassaemia. Questionnaires to assess the participants’ sunderstanding of the disease were distributed before and after the lecture. The data was analyzed using SPSS Version 22. Results: A total of 422 secondary school students in Kelantan state took part in this study. About thirty six percent (36.3%) were male and 63.7% were female. Out of the total respondents, 69.9% had a general knowledge on thalassaemia before the intervention. Knowledge scores were significantly increased after the educational intervention. The total knowledge score, general knowledge on disease and knowledge on the disease prevention were significantly increased after educational intervention from 3.34 (1.95) to 5.15 (1.60), from 2.00 (1.18) to 2.99 (0.96) and from 1.35 (1.08) to 2.17 (0.90), respectively. Conclusion: The educational intervention done by MyHVP EduVariome programme proved to increase the knowledge of the participants about thalassaemia. The knowledge should be delivered through interesting approach as it would impart valuable education and enhance the awareness regarding thalassaemia. With this understanding, it can empower people to volunteer, accept and support thalassaemia carrier screening carried out by the government to prevent thalassaemia child birth in the future.
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Ahmed, S., Atkin, K., Hewison, J. & Green, J. J. P. D. P. I. a. W. T. I. S. F. 2006. The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major. J Prenatal Diagnosis, 26, pp 801-809.
Angastiniotis, M. & Hadjiminas, M. 1981. Prevention of thalassaemia in Cyprus. J The Lancet, 317, pp 369-371.
Armeli, C., Robbins, S. J. & Eunpu, D. J. 2005. Comparing knowledge of β thalassemia in samples of Italians, Italian-Americans, and non-Italian-Americans. J of Genetic Counseling, 14, pp 365-376.
Buang, S.N,2018. Malaysia screening programme in adolescents: outcome and challenges, GG2020 Conference 2018, Global Globin Challenge “Precision Medicine in Thalassaemia”, Penang,Malaysia, 7-8 July 2018
Cao, A., Saba, L., Galanello, R. & Rosatelli, M. C. 1997. Molecular diagnosis and carrier screening for β thalassemia. J Jama, 278, pp 1273-1277.
Chattopadhyay & Sreeparna 2006. ‘Rakter dosh’—corrupting blood: The challenges of preventing thalassemia in Bengal, India. J Social Science Medicine, 63, pp 2661-2673.
Department of Statistics Malaysia, 2019. Population Distribution And Basic Demographic Characteristic Report 2019. Putrajaya.
De Sanctis, V., Kattamis, C., Canatan, D., Soliman, A.T., Elsedfy, H., Karimi, M., Daar, S., Wali, Y., Yassin, M., Soliman, N. and Sobti, P., 2017. β-thalassemia distribution in the old world: an ancient disease seen from a historical standpoint. Mediterranean journal of hematology and infectious diseases, 9(1).
Harteveld CL., Yavarian M., Zorai S., Quakkelaar ED., van Delft P., Giordano PC. Molecular spectrum of alpha-thallasemia in theiranian population Hormozgan: three novel point mutation defects. AM J Hematol 2003; 74: 90-103].
Jatavan, P., Chattipakorn, N. & Tongsong, T. J. T. 2018. Fetal hemoglobin Bart’s hydrops fetalis: pathophysiology, prenatal diagnosis and possibility of intrauterine treatment. J The Journal of Maternal-Fetal Neonatal Medicine, 31, pp 946-957.
Li, D., Liao, C., Li, J., Huang, Y., Xie, X., Wei, J. & Wu, S. J. H. 2006. Prenatal diagnosis of β-thalassemia by reverse dot-blot hybridization in southern China. J Hemoglobin, 30, pp 365-370.
Mary Anne Tan, J. A., Chin, P. S., Wong, Y. C., Tan, K. L., Chan, L. L. & George, E. 2006. Characterisation and confirmation of rare beta‐thalassaemia mutations in the Malay, Chinese and Indian ethnic groups in Malaysia. J Pathology, 38, pp 437-441.
Modell, B., Darlison, M., Birgens, H., Cario, H., Faustino, P., Giordano, P. C., Gulbis, B., Hopmeier, P., Lena‐Russo, D., Romao, L. J. S. 2007. Epidemiology of haemoglobin disorders in Europe: an overview. J Scandinavian Clinical Laboratory Investigation, 67, pp 39-70.
Modell, B., Mouzouras, M., Camba, L., Ward, R. & Fairweather, D. 1980. Population screening for carriers of recessively inherited disorders. J Population Screening For Carriers Of Recessively Inherited Disorders, 2, pp.
Mohd Ibrahim, H. ed., (2019). Malaysian Thalassaemia Registry Report 2018. 1st ed. Medical Development Division, Ministry of Health, Malaysia.
Musallam, K. M., Rivella, S., Vichinsky, E. & Rachmilewitz, E. 2013. Non-transfusion-dependent thalassemias. J Haematologica, 98, pp 833-844.
Old, J. M. 2003. Screening and genetic diagnosis of haemoglobin disorders. J Blood Reviews, 17, pp 43-53.
Rakhmilla, L. E., Larasati, R., Sahiratmadja, E. K., Rohmawaty, E., Susanah, S., Effendi, S. H. J. C. 2018. Assessing Knowledge About Thalassemia Among Reproductive Age Population After Video Media Education. J. O. B. & Sciences, 2, pp 30-32.
Weatherall, D. & Clegg, J. 2001. The Thalassaemia Syndromes. 4th Edition Oxford. UK Blackwell Science, pp.
Weatherall, D. J. 2010. Thalassemia as a global health problem: recent progress toward its control in the developing countries. J Annals of the New York Academy of Sciences, 1202, pp 17-23.
Willcox, M., Björkman, A. & Brohult, J. 1983. Falciparum malaria and β-thalassaemia trait in northern Liberia. J Annals of Tropical Medicine Parasitology, 77, pp 335-347.
Wong, L. P., George, E. & Tan, J. M. 2011a. Public perceptions and attitudes toward thalassaemia: Influencing factors in a multi-racial population. J BMC Public Health, 11, pp 193.
Wong, L. P., George, E. & Tan, J. M. 2011b. A holistic approach to education programmes in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs. J. O. C. G., 2, pp 71-79.
Yusof, W., Halim-Fikri, H. and Zilfalil, B. I. N. A. (2017) ‘The Human Variome Project and Global Globin Challenge’, Pak Pediatr J, 41(4), pp. 202–206.
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