Impact Of Population Screening Programs On The Knowledge, Attitudes And Practices Regarding Prevention Of Thalassemia
DOI:
https://doi.org/10.54393/pbmj.v4i2.103Abstract
Beta Thalassemia is the most common genetic disorder in Pakistan. This study was conducted to assess the knowledge, attitudes and practices of parents of children suffering from Thalassemia with regards to disease prevention. It also determined the degree of social and religious opposition faced by these parents during implementation of preventive practices Methods: A descriptive cross-sectional survey was conducted in the 36 districts of Punjab via nine regional centers of Punjab Thalassemia Prevention Project. 248 parents of Beta Thalassemia Major and Intermedia were interviewed using a pre-designed pre-tested structured questionnaire. All statistical analyses were conducted using Statistical Package for Social Sciences (IBM SPSS 23.0) Results: 83.5% of the respondents had adequate knowledge and 98.4% had positive attitudes. Knowledge and attitude were positively correlated (p=0.00). 93% opted for prenatal diagnosis and 91% opted for termination of affected fetus. Among these individuals 12% faced opposition from their family members when they went for diagnostic testing and this opposition rose to 20% when they had to opt for termination. The local religious clerics opposed prenatal diagnosis in 3% of the cases and termination in 7% of the cases Conclusion: When compared to previous studies the knowledge, attitudes and practices of our study population was better. Thus, population screening programs have a positive impact on knowledge, attitudes and practices of caregivers of Thalassemia patients. However, social and religious opposition needs to be countered for further implementation of effective preventive practices.
References
Fibach E, Rachmilewitz EA. Pathophysiology and treatment of patients with beta-thalassemia – an update. F1000Res. 2017;6(1):2156. doi:10.12688/f1000research.12688.1.
Zaheer HA, Waheed U, Abdella YE, Konings F. Thalassemia in Pakistan: A forward-looking solution to a serious health issue. Glob. J. Transfus. Med. 2020;5(1):108-110. doi: 10.4103/GJTM.GJTM_72_19
Kiani RA, Anwar M, Waheed U, Asad M, Abbasi S, Zaheer HA. Epidemiology of Transfusion Transmitted Infection among Patients with β-Thalassemia Major in Pakistan. J. Blood Transfus. 2016; 2016:1-5. https://doi.org/10.1155/2016/8135649
Ansari S, Shamsi T, Bohray M, Khan M, Farzana T, Perveen K et al. Molecular Epidemiology of β-Thalassemia in Pakistan: Far Reaching Implications. Blood. 2011;118(21):5309-5309. https://doi.org/10.1182/blood.V118.21.5309.5309
Ansari SH, Parveen S, Siddiqui S, Perveen K, Ahmed G, Kaleem B et al. Managing thalassemia in the developing world: an evidence-based approach for prevention, transfusion independency, and curative treatment with hematopoietic stem cell transplantation. Blood Adv. 2018 Nov 30; 2(Suppl 1):42-45. doi: 10.1182/bloodadvances.2018GS112057.
Zaheer HA, Waheed U, Tahir S, Nasir K. National Blood Banks Data Collection Report; 2018. ISBN: 9789699881435. https://www.sbtp.gov.pk/wp-content/uploads/2019/10/National-DataCollection-Report-2018.pdf.
Ahmed S. (ed.) Thalassemia in Pakistan. J. Islam. Int. Med. Coll. (Online). 2018; 13(2):50-51. https://jiimc.riphah.edu.pk/wp-content/uploads/2018/07/Editorial.pdf
Ahmed S, Saleem M, Modell B, Petrou M. Screening Extended Families for Genetic Hemoglobin Disorders in Pakistan. N. Engl. J. Med. 2002;347(15):1162-1168. doi: 10.1056/NEJMsa013234.
Maheen H, Malik F, Siddique B, Qidwai A. Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan. J. Genet. Couns. 2015;24(6):945-951. doi: 10.1007/s10897-015-9830-z
Ahmed M, Sharif M, Yaqoob R, Nadeem M, Haroon Z, Iqbal T. Impact of Thalassemia Centre on awareness of parents of Thalassemic patients about the disease: Comparative study in Muzaffarabad and Kotli districts of Azad Kashmir. Pak. J. Physiol. 2019;15(2):11-5.Available from: http://pjp.pps.org.pk/index.php/PJP/article/view/1057.
Kalra R, Kaur D, Sodhi M, Kaur J. Knowledge, attitude and practice in parents of chronically transfused Thalassemic patients regarding Thalassemia in Thalassemia day care unit in government medical college, Amritsar, Punjab, India. Int. J. Contemp. Pediatrics (Online). 2019;6(6):2469-2475. https://dx.doi.org/10.18203/2349-3291.ijcp20194718
Ishfaq K, Naeem S, Ali J, Ahmad T, Zainab S. Assessing Parental Knowledge About Thalassemia. Pak. Pediatr. J. 2016;40(4):232-236. https://doi.org/10.1007/s10897-015-9830-z
Ghafoor M, Sabar M, Sabir F. Prevention programs and prenatal diagnosis for beta Thalassemia in Pakistan: a narrative review. JPMA. 2021;71(1):1-17. https://doi.org/10.47391/JPMA.665.
Ahmed S. Genetic Haemoglobin Disorders in Pakistan. NJHS. 2017;2(3):95-99. https://doi.org/10.21089/njhs.23.0095.
Manzoor I, Zakar R. Socio demographic determinants associated with parental knowledge of screening services for Thalassemia major in Lahore. Pak. J. Med. Sci. 2019;35(2):483-488. https://doi.org/10.12669/pjms.35.2.613.
Bashir S (ed.). Annual report. Punjab Thalassemia Prevention Programme. Government of Punjab. 2021.
Goonasekera H, Paththinige C, Dissanayake V. Population Screening for Hemoglobinopathies. Annu. Rev. Genomics Hum. Genet. 2018;19(1):355-380. doi: 10.1146/annurev-genom-091416-035451.
Petrou M, Modell B. 2013. Surveillance. In Prevention of Thalassemia and Other Haemoglobin Disorders, Vol. 1: Principles, ed. J Old, chap. 9. Nicosia, Cyprus: Thalass. Int. Fed. 2nd ed. https://www.ncbi.nlm.nih.gov/books/NBK190472.
Shahzad A, Rafiq N, Ullah I, Asad MJ, Ahmad MS, Waheed U. Knowledge, attitude and practices (KAP) of the families of β-Thalassemia children in Thalassemia centers of Rawalpindi and Islamabad, Pakistan. J. Pak. Med. Assoc. 2017;67(9):1434-1437. https://pubmed.ncbi.nlm.nih.gov/28924289/.
Zaheer Z, Zaman Q, Iqbal M, Hameed B, Wazir S. Knowledge, Attitude And Practices With Relevance To Thalassemia. J. Med. Sci. 2015;23(2):109-112. https://www.jmedsci.com/index.php/Jmedsci/article/view/24.
Ahmed N, Khan BA, Bukhari SW, Khan KS, Sabir T, Bin M et al. Knowledge, Attitude And Practices (Kap) of The Families of B- Thalassemia Patients in a Thalassemia Center of Karachi. IJCMPR. 2020;6(2):4972-4976. doi:10.24327/23956429.ijcmpr202002844
Ghafoor MB. Level of Awareness about Thalassemia among Parents of Thalassaemic Children. JRMC.2016;20(3):209-11. http://journalrmc.com/index.php/JRMC/article/view/177.
Karimzaei T, Masoudi Q, Shahrakipour M, Navidiyan A, Jamalzae A, ZoraqiBamri A. Knowledge, Attitude and Practice of Carrier Thalassemia Marriage Volunteer in Prevention of Major Thalassemia. Glob. J. Health Sci. 2015;7(5):364-370. http://dx.doi.org/10.5539/gjhs.v7n5p364.
Basu M. A study on knowledge, attitude and practice about Thalassemia among general population in outpatient department at a Tertiary Care Hospital of Kolkata. J. Prev. Med. Holist. Health. 2015;1(1):6-13. https://www.jpmhh.org/article-details/661.
Jeesh YAA, Yousif ME- hadi A, Al-Haboub MA-B. The Effects of Patients’ and Care-Givers’ Knowledge, Attitude, & Practice (KAP) on Quality of Life Among Thalassemia Major Patients’ in Damascus-Syrian Arab Republic. ESJ. 2018;14(12):308. https://eujournal.org/index.php/esj/article/view/10792
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 Apr;22(4):218-21. https://pubmed.ncbi.nlm.nih.gov/22482376/.
Naseem S, Ahmed S, Vahidy F. Impediments to prenatal diagnosis for beta Thalassemia: experiences from Pakistan. Prenat. Diagn. 2008 Dec;28(12):1116-8. doi: 10.1002/pd.2133.
Boardman FK, Clark C, Jungkurth E, Young PJ. Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with Thalassemia in the UK. J. Genet. Couns. 2020 Dec;29(6):1026-1040. doi: 10.1002/jgc4.1231.
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