Introduction: Thalassemia is the world’s most common hereditary disease and is a paradigm of monogenic genetic disease. Many children in Bangladesh are carrier of thalassemia which is a major threat for the upcoming generation. The aim of this study was to determine the awareness among parents of children with thalassemia major. Methodology & Materials: This descriptive cross-sectional study was conducted in the Department of Pediatrics, Chittagong Medical College Hospital, Bangladesh during July 2010 to December 2010. A total of 131 parents of diagnosed cases of thalassemia major children attended for blood transfusion in the Pediatric Ward of Chittagong Medical College Hospital and Thalassemia Centre, Jamal Khan, Chittagong, Bangladesh were enrolled in this study. The collected data were analyzed by the SPSS 23.0 windows version and the association between the categorical variables was assessed through Chi-Squared test where p<0.05 considered as significant. Result: A total of 131 parents of children with thalassemia major were included in this study. The socio-demographic characteristics of the majority parents were low. The educational qualification of the majority father was up to secondary level (29.77%) and the maximum mother’s educational qualification was up to primary level (31.30%). Most of the parents fully immunized their children according to EPI schedule (73.28%) but majority of them not received Hepatitis B vaccine (74.05%). A large number of parents had no knowledge about consanguinity of marriage (68.70%), 92 (70.23%) parents had no knowledge about mode of inheritance of the disease, 100 (76.34%) parents had no knowledge about premarital screening, 74.81% had no other affected children in their family, 42 (32.06%) parents collected blood from professional blood donors, 47 (35.88%) parents screened the blood of their children regularly and had knowledge about screening of blood before transfusion for HBV, HCV, HIV, malaria and syphilis were being 19 (14.50%), 12 (9.16%), 7 (5.34%), 6 (4.58%) and 4 (3.05%). Parents’ knowledge regarding iron overload, iron chelation, oral iron chelation, parenteral iron chelation and use of infusion pump also were being 48 (36.64%), 42 (32.06%), 27 (20.61%), 09 (6.87%), 06 (4.58%) and 29 (22.14%). All the above factors were statistically significant (p<0.05). Conclusion: The awareness and knowledge among parents of children with thalassemia major were insufficient. They have inadequate knowledge regarding the disease, safe blood transfusion and treatments of associated complications. Awareness programs should be taken to improve knowledge among the parents of the children with thalassemia.
Published in | American Journal of Pediatrics (Volume 7, Issue 3) |
DOI | 10.11648/j.ajp.20210703.13 |
Page(s) | 105-112 |
Creative Commons |
This is an Open Access article, distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium or format, provided the original work is properly cited. |
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Copyright © The Author(s), 2021. Published by Science Publishing Group |
Awareness, Parents, Children and Thalassemia Major
[1] | Lai K, Huang G, Su L, He Y. The prevalence of thalassemia in mainland China: evidence from epidemiological surveys. Scientific reports. 2017 Apr 19; 7 (1): 1-1. |
[2] | Sharma S, Seth B, Jawade P, Ingale M, Setia MS. Quality of life in children with thalassemia and their care givers in India. Indian J Pediatr. 2017; 84 (3): 188-194. |
[3] | Michael R, Baun D, Vichinsky E. Thalassemia syndromes. In: Behrman RE, Kliegman RM, editors. Nelson textbook of paediatircs. 18th ed. New York: WB Saunders; 2007. p. 2033-7. |
[4] | Borgna-Pignatti C, Gamberini MR. Complications of thalassemia major and their treatment. Expert Rev Hematol 2011; 4: 353–66. |
[5] | Mishra AK, Tiwari A. Iron overload in beta thalassemia major and intermedia patients. Maedica (Buchar) 2013; 8: 328–32. |
[6] | Tahura S, Zaman S, Khan Wa. Thalassemia Prevention: Bangladesh Perspective -A Current Update. Bangladesh J Child Health 2016; Vol 40 (1): 31-38. |
[7] | Khan WA, Banu B, Amin SK. Prevealence of ²-Thalassemia Trait & Hb trait in Bangladesh School Children and Health Burden of Thalassemia in our population. Dhaka Shishu (Children) Hospital Journal. 2005; 21: 1-7. |
[8] | Rahman SA, Jamal CY. Congenital Haemolytic Anaemia in Bangladesh: Types and Clinical Manifestations. Indian Pediatrics. 2002; 39: 574-77. |
[9] | Hasan MK, Haque O, Rubaiyat KA, Barshan AD, Talukder SI. Clinical Presentation and Electrophoretic Patterns of Hereditary Haemoglobin Disorders in Adults, a Study at Dinajpur Medical College Hospital. Dinajpur Med Col J. 2013; 6: 167-71. |
[10] | Khan WA. Thalassemia in Bangladesh. Dhaka Shishu (Children) Hospital Journal. 1999; 15: 42-44. |
[11] | Angastiniotis MA, Hadjiminan MG. Prevention of thalassemia in Cyprus. Lancet. 1981; 1: 369-71. 13. |
[12] | Model B, Darlison M, Birgens H, Cario H, Faustino P, Giordano PC, Gulbis B, Hopmeier P, Lena-Russo D, Romao L. Epidemiology of haemoglobin disorders in Europe: An overview. Scand J Clin Lab Invest. 2007; 67: 39-69. |
[13] | Karimi M, Johari S, Cohan N. Attitude toward prenatal diagnosis for β-thalassemia major and medical abortion in Southern Iran. Hemoglobin 2010; 34: 49-54. |
[14] | Dehkordi AH, Heydernejad MS. Enhancement of parents' awareness about β-Thalassemia disorder through two educational programs. Pak J Med Sci 2008; 24: 283-6. |
[15] | Kliegman RM, Stanton B, St. Geme J, Schor NF. Nelson Textbook of Pediatrics. 20th ed. South Asian Edition. 2015; 2: 2352-3. |
[16] | Bandyopadhyay B, Nandi S, Mitra K, Mandal PK, Mukhopadhyay S, Biswas AB. A comparative study on perceptions and practices among parents of thalassemic children attending two different institutions. Indian J Commun Med. 2003; 28: 128-132. |
[17] | Ekpemo, S. C. (2018). Challenges and Outcome of Neonatal Surgery at the Abia State University Teaching Hospital Aba Nigeria. American Journal of Biomedical and Life Sciences, 6 (4), 69. doi: 10.11648/j.ajbls.20180604.11. |
[18] | Galanello R, Origa R. Beta thalassemia. Orphanet J Rare Dis 2010; 5: 11. |
[19] | Goyal JP, Hpapani PT, Gagiya H. Awareness among parents of children with thalassemia major from Western India. Int J Med Sci Public Health 2015; 4: 1356-1359. |
[20] | Naseem S, Ahmed S, Vahidy F. Impediments to prenatal diagnosis for beta-thalassemia: experiences from Pakistan. Prenat Diagn 2008; 28: 1116–8. |
[21] | Manzoor I, Zakar R. Sociodemographic determinants associated with parental knowledge of screening services for thalassemia major in Lahore. Pakistan Journal of Medical Sciences. 2019 Mar; 35 (2): 483. |
[22] | Arif F, Fayyaz J, Hamid A. Awareness among parents of children with thalassemia major. J Pak Med Assoc. 2008 Nov; 58 (11): 621-4. |
[23] | Di Marco V, Capra M, Angelucci E, Borgna-Pignatti C, Telfer P, Harmatz P, et al. Management of chronic viral hepatitis in patients with thalassemia: recommendations from an international panel. Blood 2010; 116 (16): 2875–83 |
[24] | Hafeez M, Aslam M, Ali A, Rashid Y, Jafri H. Regional and ethnic distribution of beta thalassemia mutations and effect of consanguinity in patients referred for prenatal diagnosis. J Coll Physicians Surg Pak 2007; 17: 144–7. |
[25] | Baig SM, Din H, Azhar A, Baig JM, Aslam M, Anjum I, et al. Prevention of b-thalassemia in a large Pakistani family through cascade testing. Commun Genet 2008; 11: 68–70. |
[26] | Pooya AA, Doroudchi M. Thalassemia major and consanguinity in Shiraz city, Iran. Turk J Haematol 2004; 21: 127–30. |
[27] | Ali S, Saffiullah MF. Awareness of parents regarding beta thalassemia major disease. Khyber Med Univ J. 2015 Jun 30; 7 (2): 72-5. |
[28] | Hassan K, Aslam M, Ikram N. Parental knowledge and awareness in cases of thalassemia major. J Pak Inst Med Sci 2002; 13: 623–6. |
[29] | Ishaq F, Abid H, Kokab F, Akhtar A, Mahmood S. Awareness among parents of β-thalassemia major patients, regarding prenatal diagnosis and premarital screening. J Coll Physicians Surg Pak 2012; 22: 218–21. |
[30] | Mollah AH, Nahar N, Siddique MD A. Anwar KS, Hassan T, Azam MD G. Common Transfusion-transmitted Infectious Agents among Thalassaemic. |
[31] | Gardenghi S, Marongiu MF, Ramos P, Guy E, Breda L, Chadburn A, et al. Ineffective erythropoiesis in beta thalassemia is characterized by increased iron absorption mediated by down regulation of hepcidin and up regulation of ferroportin. Blood 2007; 109: 5027–35. |
[32] | Origa R, Galanello R, Ganz T, Giagu N, Maccioni L, Faa G, et al. Liver iron concentrations and urinary hepcidin in betathalassemia. Haematologica 2007; 92 (5): 583–8. |
[33] | Giardina PJ, Grady RW. Chelation therapy in beta-thalassemia: an optimistic update. Semin Hematol 2001; 38 (4): 360–6. |
[34] | Neufeld EJ. Oral chelatorsdeferasirox and deferiprone for transfusional iron overload in thalassemia major: new data, new questions. Blood 2006; 107: 3436–41. |
[35] | Saxena A, Sharif M, Siddiqui S, Singh S. Knowledge, practice and experiences of parents with a thalassemic child. Int J Contemp Pediatr 2017; 4: 1630-3. |
APA Style
Mohammad Musa Meah, Zabeen Choudhury, Mohammad Bani Yeamin, Bimal Chandra Das, Jhulan Das Sharma. (2021). Assessment of Awareness Among Parents of Children with Thalassemia Major in Bangladesh: A Hospital Based Study. American Journal of Pediatrics, 7(3), 105-112. https://doi.org/10.11648/j.ajp.20210703.13
ACS Style
Mohammad Musa Meah; Zabeen Choudhury; Mohammad Bani Yeamin; Bimal Chandra Das; Jhulan Das Sharma. Assessment of Awareness Among Parents of Children with Thalassemia Major in Bangladesh: A Hospital Based Study. Am. J. Pediatr. 2021, 7(3), 105-112. doi: 10.11648/j.ajp.20210703.13
AMA Style
Mohammad Musa Meah, Zabeen Choudhury, Mohammad Bani Yeamin, Bimal Chandra Das, Jhulan Das Sharma. Assessment of Awareness Among Parents of Children with Thalassemia Major in Bangladesh: A Hospital Based Study. Am J Pediatr. 2021;7(3):105-112. doi: 10.11648/j.ajp.20210703.13
@article{10.11648/j.ajp.20210703.13, author = {Mohammad Musa Meah and Zabeen Choudhury and Mohammad Bani Yeamin and Bimal Chandra Das and Jhulan Das Sharma}, title = {Assessment of Awareness Among Parents of Children with Thalassemia Major in Bangladesh: A Hospital Based Study}, journal = {American Journal of Pediatrics}, volume = {7}, number = {3}, pages = {105-112}, doi = {10.11648/j.ajp.20210703.13}, url = {https://doi.org/10.11648/j.ajp.20210703.13}, eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.ajp.20210703.13}, abstract = {Introduction: Thalassemia is the world’s most common hereditary disease and is a paradigm of monogenic genetic disease. Many children in Bangladesh are carrier of thalassemia which is a major threat for the upcoming generation. The aim of this study was to determine the awareness among parents of children with thalassemia major. Methodology & Materials: This descriptive cross-sectional study was conducted in the Department of Pediatrics, Chittagong Medical College Hospital, Bangladesh during July 2010 to December 2010. A total of 131 parents of diagnosed cases of thalassemia major children attended for blood transfusion in the Pediatric Ward of Chittagong Medical College Hospital and Thalassemia Centre, Jamal Khan, Chittagong, Bangladesh were enrolled in this study. The collected data were analyzed by the SPSS 23.0 windows version and the association between the categorical variables was assessed through Chi-Squared test where pResult: A total of 131 parents of children with thalassemia major were included in this study. The socio-demographic characteristics of the majority parents were low. The educational qualification of the majority father was up to secondary level (29.77%) and the maximum mother’s educational qualification was up to primary level (31.30%). Most of the parents fully immunized their children according to EPI schedule (73.28%) but majority of them not received Hepatitis B vaccine (74.05%). A large number of parents had no knowledge about consanguinity of marriage (68.70%), 92 (70.23%) parents had no knowledge about mode of inheritance of the disease, 100 (76.34%) parents had no knowledge about premarital screening, 74.81% had no other affected children in their family, 42 (32.06%) parents collected blood from professional blood donors, 47 (35.88%) parents screened the blood of their children regularly and had knowledge about screening of blood before transfusion for HBV, HCV, HIV, malaria and syphilis were being 19 (14.50%), 12 (9.16%), 7 (5.34%), 6 (4.58%) and 4 (3.05%). Parents’ knowledge regarding iron overload, iron chelation, oral iron chelation, parenteral iron chelation and use of infusion pump also were being 48 (36.64%), 42 (32.06%), 27 (20.61%), 09 (6.87%), 06 (4.58%) and 29 (22.14%). All the above factors were statistically significant (pConclusion: The awareness and knowledge among parents of children with thalassemia major were insufficient. They have inadequate knowledge regarding the disease, safe blood transfusion and treatments of associated complications. Awareness programs should be taken to improve knowledge among the parents of the children with thalassemia.}, year = {2021} }
TY - JOUR T1 - Assessment of Awareness Among Parents of Children with Thalassemia Major in Bangladesh: A Hospital Based Study AU - Mohammad Musa Meah AU - Zabeen Choudhury AU - Mohammad Bani Yeamin AU - Bimal Chandra Das AU - Jhulan Das Sharma Y1 - 2021/06/28 PY - 2021 N1 - https://doi.org/10.11648/j.ajp.20210703.13 DO - 10.11648/j.ajp.20210703.13 T2 - American Journal of Pediatrics JF - American Journal of Pediatrics JO - American Journal of Pediatrics SP - 105 EP - 112 PB - Science Publishing Group SN - 2472-0909 UR - https://doi.org/10.11648/j.ajp.20210703.13 AB - Introduction: Thalassemia is the world’s most common hereditary disease and is a paradigm of monogenic genetic disease. Many children in Bangladesh are carrier of thalassemia which is a major threat for the upcoming generation. The aim of this study was to determine the awareness among parents of children with thalassemia major. Methodology & Materials: This descriptive cross-sectional study was conducted in the Department of Pediatrics, Chittagong Medical College Hospital, Bangladesh during July 2010 to December 2010. A total of 131 parents of diagnosed cases of thalassemia major children attended for blood transfusion in the Pediatric Ward of Chittagong Medical College Hospital and Thalassemia Centre, Jamal Khan, Chittagong, Bangladesh were enrolled in this study. The collected data were analyzed by the SPSS 23.0 windows version and the association between the categorical variables was assessed through Chi-Squared test where pResult: A total of 131 parents of children with thalassemia major were included in this study. The socio-demographic characteristics of the majority parents were low. The educational qualification of the majority father was up to secondary level (29.77%) and the maximum mother’s educational qualification was up to primary level (31.30%). Most of the parents fully immunized their children according to EPI schedule (73.28%) but majority of them not received Hepatitis B vaccine (74.05%). A large number of parents had no knowledge about consanguinity of marriage (68.70%), 92 (70.23%) parents had no knowledge about mode of inheritance of the disease, 100 (76.34%) parents had no knowledge about premarital screening, 74.81% had no other affected children in their family, 42 (32.06%) parents collected blood from professional blood donors, 47 (35.88%) parents screened the blood of their children regularly and had knowledge about screening of blood before transfusion for HBV, HCV, HIV, malaria and syphilis were being 19 (14.50%), 12 (9.16%), 7 (5.34%), 6 (4.58%) and 4 (3.05%). Parents’ knowledge regarding iron overload, iron chelation, oral iron chelation, parenteral iron chelation and use of infusion pump also were being 48 (36.64%), 42 (32.06%), 27 (20.61%), 09 (6.87%), 06 (4.58%) and 29 (22.14%). All the above factors were statistically significant (pConclusion: The awareness and knowledge among parents of children with thalassemia major were insufficient. They have inadequate knowledge regarding the disease, safe blood transfusion and treatments of associated complications. Awareness programs should be taken to improve knowledge among the parents of the children with thalassemia. VL - 7 IS - 3 ER -