AWARENESS OF PARENTS REGARDING THE BETA THALASSEMIA MAJOR DISEASE
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Abstract
Objective: To determine the level of awareness among the parents of children with Thalassemia major regarding prevention, treatment options and complications of disease.
Methodology: This multi-centric KAP study was conducted in Department of pediatrics Peshawar Medical College, Fatimid thalassemia Centre and Hamza thalassemia center Peshawar from June 2011 till December 2011.Total of 200 parents were selected as non-probability consecutive sampling. All the data was collected on structured proforma and analyzed on SPSS version 20.
Result: Out of the 200 patients who attended the transfusion centers, 76 (38%) were accompanied by mothers while 124(62%) were accompanied by their fathers. One hundred and twenty two parents were having no formal education, 56 were matriculate, 18 were Bachelor and 4 were having master degree. All the 200 parents (100%) knew that this disease need repeated blood transfusion and blood should be screened against hepatitis B and HIV. Although 68(34%) parents already knew that they have positive family history of thalassemia, 58 parents (85.2%) had not screened themselves while 10 parents (14.4%) screened themselves. Although 74% had knowledge about prenatal screening but only 11% considered it acceptable religiously and none of the couple opted for it. One hundred and eighty four (92%) parents were aware that iron over load is a complication of thalassemia while 16 (8%) had no knowledge regarding this complication.
Conclusion: Parents knowledge regarding beta-thalassemia was appropriate but there is a lot of space for further improvement in the existing attitudes and practices of parents of children with thalassemia.
Key words: Thalassemia Major, Parents’ Awareness, Chelating Agent, Bone Marrow Transplant, And Blood Transfusion
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References
Ansari SH, Shamsi TS, Ashraf M, Farzana T, Bohray M, Perveen K, et al. Molecular epidemiology of beta-thalassemia in Pakistan: Far reaching implications. Int J Mol Epidemiol Genet 2012;18(2):193-7.
Hashmi JA, Farzana F, Ahmed M. Abnormal hemoglobins, thalasemia trait & G6PD deficiency in young Pakistani males. J Pak Med Assoc 1976;26(1):2-4.
Ahmed S, Saleem M, Modell B, Petrou M. Screening Extended Families for Genetic Hemoglobin Disorders in Pakistan. N Engl J Med 2002; 347:1162-1168.
Baig SM, Azhar A, Hassan H, Baig JM, Kiyani A, Hameed U, et al. Spectrum of Beta-Thalassemia mutations in various regions of punjab and Islamabad, Pakistan: establishment of prenatal diagnosis. Haematologica 2006 Mar;91(3):ELT02.
Aniei M, Mehr EJ, Shahraz S, Zahedi LN, Rad AM, Sayar S, et al. Prenatal Screening and Counseling in Iran and Ethical Dilemmas. Community Genet 2008;11: 267–72.
Ahmed S, Atkin K, Hewison J, Green J. The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major. Prenat Diagn 2006;26(9):801–809.
Bryan S, Dormandy E, Roberts T, Ades A, Barton P, Juarez-Garcia A, et al. Screening for sickle cell and thalassaemia in primary care: A cost-effectiveness study. Br J Gen Pract 2011; 61:591.
Dehkordi AH, Heydarnejad MS. Effect of booklet and combined method on parents' awareness of children with beta-thalassemia major disorder. J Pak Med Assoc 2008, 58(9):485-7.
Khattak AZ, Khatoon S, Shah SMA, Ghauri MRD. Basic thalassaemia care at a thalassaemia care centre in Peshawar-are we heading forward? J Med Sci (Peshawar print) 2011;19(3):144-7.
Lodhi Y. Economics of thalassemia management in Pakistan. In Thalassemia Awareness Week, Ed. Ahmed S. Friends of Thalassemia 2003.
Arif F, Fayyaz J, Hamid A. Awareness among parents of children with thalassemia major. J Pak Med Assoc 2008;58(11):621-4.
Bandyopadhyay B, Nandi S, KaninikaMitra, Mandal PK, Mukhopadhyay S, Biswas A. A Comparative Study on Perrceptions and Practices Among Parents of Thalassemic Children Attending Two Different Institutions. Indian J Comm Med 2003, 28:128–132.
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(4):218-21.
Miri-Moghaddam E, Naderi M, Izadi S, Mashhadi M. Causes of new cases of major thalassemia in sistan and balouchistan province in South-East of iran. Iran J Public Health 2012;41(11):67-71.
Canatan D. Thalassemias and Hemoglobinopathies in Turkey. Hemoglobin 2014;17:1-3.