Assessment of Level of Parental Understanding of Thalassemia in Children Attending a Tertiary Care Hospital in District Poonch, Azad Kashmir
DOI:
https://doi.org/10.36283/ziun-pjmd14-4/032Keywords:
Beta-Thalassemia, genetic Counseling, prenatal Diagnosis, parental Awareness, ConsanguinityAbstract
Background:
Thalassemia is a common inherited blood disorder with a high burden in Pakistan, particularly in areas with prevalent consanguineous marriages and limited health literacy. Awareness regarding its genetic transmission and preventive measures among caregivers is crucial for effective disease control. The present study aimed to assess the level of awareness about thalassemia and its prevention among parents of children diagnosed with beta-thalassemia.
Methodology:
This descriptive cross-sectional study was conducted at the Pediatric Department of CMH Rawalakot from July 2022 to January 2023. A total of 102 parents of beta-thalassemia patients were enrolled through non-probability consecutive sampling. Data were collected via a structured questionnaire covering socio-demographics, disease knowledge, and sources of information. Associations were analyzed using the chi-square test in SPSS version 25. A p-value < 0.05 was considered statistically significant.
Results:
While 64.7% of parents knew thalassemia was a genetic disorder, awareness about preventive measures was limited—only 37.3% had heard of premarital screening, and 28.4% knew of prenatal diagnostic options. Education level was significantly associated with awareness of genetic transmission (p = 0.0017), and urban residence was linked to better knowledge of premarital screening (p = 0.0001). Healthcare professionals were the primary source of information (56.9%).
Conclusion:
Parental awareness about thalassemia remains inadequate, especially concerning prevention. Education and residence are key determinants of awareness. Targeted awareness campaigns and integration of genetic counseling into pediatric care are urgently needed in high-risk regions like Azad Kashmir.
References
References
1. Fasano RM, Meier ER, Chonat S. Sickle cell disease, thalassemia, and hereditary hemolytic anemias. Rossi's Principles of Transfusion Medicine. 2022:326-45.
2. Ali S, Mumtaz S, Shakir HA, Khan M, Tahir HM, Mumtaz S, et al. Current status of beta‐thalassemia and its treatment strategies. Molecular genetics & genomic medicine. 2021;9(12):e1788.
3. Kapure A. Blood transfusion complications prevalence parametric causes for stress of disease and management of transfusion dependent thalassemia: a narrative review. World J Pharm Res. 2020;9:1192-220.
4. Ansari AH, Ansari SH, Salman MJ, Ansari MUH, Jabeen R. A scoping review on the obstacles faced by beta thalassemia major patients in Pakistan-Matter of policy investment. AIMS Public Health. 2024;11(4):1105.
5. Hossain MS, Mahbub Hasan M, Petrou M, Telfer P, Mosabbir AA. The parental perspective of thalassaemia in Bangladesh: lack of knowledge, regret, and barriers. Orphanet journal of rare diseases. 2021;16:1-10.
6. Sa'd Masood M, Hussain M, Rashid I, editors. Knowledge, Attitude, and Practices of Parents of Beta Thalassemia Patients. Medical Forum Monthly; 2023.
7. Rahat MA, Ullah N, Saif S, ur Rahman H, Rasool A, Shah M, et al. Knowledge, Attitudes and Practices Regarding the Prevention of Thalassemia in Parents of Thalassemic Children in Swat. Pakistan Journal of Biochemistry and Biotechnology. 2023;4(1):13-22.
8. Angeline JK, Jennifer HG, Pichamuthu BG. Assessing knowledge on thalassemia for prevention and management practices among the tribal population of Sitteri Panchayat, Dharmapuri District, Tamil Nadu, India. Journal of Family Medicine and Primary Care. 2025;14(3):1098-103.
9. Islam MS, Suriea U, Mohiuddin RB, Islam MM, Akter S, Aktar S, et al. Public Perceptions and Attitudes of Bangladeshi Population towards Thalassemia Prevention: A Nationwide Study. 2021.
10. Shukla V, Mondal TK, Ray K, Dutta S, Mandal MM, Basu M. Screening before marriage is important: A cross-sectional study on thalassemia among eligible couples from a slum of Kolkata. Medical Journal of Dr DY Patil University. 2022;15(1):62-8.
11. Esmaeilzadeh F, Ahmadi B, Vahedi S, Barzegari S, Rajabi A. Major thalassemia, screening or treatment: an economic evaluation study in Iran. International journal of health policy and management. 2021;11(7):1112.
12. ¹Hospital Canselor Tuanku Muhriz UK, Malaysia BTR. A systematic review on thalassaemia screening and birth reduction initiatives: cost to success. Med J Malaysia. 2024;79(3):349.
13. Gul Z, Malik M, Uzair U, Baloch A, La QD, Sadiq N, et al. Awareness About Thalassemia Among the Parents of Thalassemic Children in Balochistan: A Cross‐Sectional Study. Health Science Reports. 2025;8(4):e70715.
14. Fatkhiyah N, Kartini A, Nugraheni SA, Margawati A, Kartasurya MI, Himawan F, editors. Effectiveness of Family Education in Thalassemia Screening Awareness: A Literature Review. Proceeding of Pontianak International Health Conference; 2025.
15. Asa P, Indiastuti DN, Andarsini MR, Fauziah JN, d’Arqom A. Empowering Thalassemia Patients and Family to Increase Public Knowledge on Thalassemia. Jurnal Pengabdian Kepada Masyarakat (Indonesian Journal of Community Engagement). 2021;7(4):228.
16. Obeagu EI. Thalassemia in Sub-Saharan Africa: epidemiology, diagnosis, and management–a narrative review. Annals of Medicine and Surgery. 2025;87(6):3523-36.
17. Shafie AA, Mohammed NS, See KF, Ibrahim HM, Wong JHY, Chhabra IK. Efficiency and management factors: finding the balance in Thalassaemia care centres. Health Economics Review. 2022;12(1):9.
18. Narahari JM, Guruswamy P, Jagadeesha NM, Shivashakar KK, Kumar DP, Narayana PS, et al. Exploring the Impact of Iron Overload on Mitochondrial DNA in β-Thalassemia: A Comprehensive Review. Gene Expression. 2024;23(3):197-210.
19. Islam M, Kamruzzaman M, Sarker M, Riaaz R, Ilhan N. The Parental Perspective of Thalassemia in Bangladesh: Challenges for Prevention and Management of Thalassemia. Sch J App Med Sci. 2024;5:519-27.
20. Alam NE, Islam MS, Khabir MIU, Suriea U, Islam MM, Mohiuddin RB, et al. The scenario of knowledge, attitude and practice of the Bangladeshi population towards thalassemia prevention: A nationwide study. PLOS global public health. 2022;2(10):e0001177.
21. Mousavi MS, Mohammadnezhad G, Yaghmaei F, Azarkeivan A, Esmaily H. Awareness and practical evaluation of correct use of iron chelators; a study to track the ambiguities of thalassemia patients on their medications in Iran. BMC Research Notes. 2024;17(1):163.
22. Hossain MJ, Das M, Akter MM, Maruf MFI, Towhid ST. Safe Marriage for Thalassemia Prevention: The Gap Between Knowledge and Practices among Bangladeshi University Students. 2023.
23. Iqbal R, Memon K, Kumar S, Khan MR. Efficacy of Education in Providing Knowledge about Thalassemia Prevention and Family Screening of Thalassemic Patients. Pakistan Journal of Medical & Health Sciences. 2023;17(06):257-.
24. Wahidiyat PA, Yo EC, Wildani MM, Triatmono VR, Yosia M. Cross-sectional study on knowledge, attitude and practice towards thalassaemia among Indonesian youth. BMJ open. 2021;11(12):e054736.
25. Ramadan Korany N, Sayed Ali H, Abd ELRahman Abd ELRahman A, ELAshery Ashery R. Relationship between Knowledge of Patients with Thalassemia and their Quality of Life. Egyptian Journal of Health Care. 2022;13(4):612-25.
Downloads
Published
Issue
Section
License
Copyright (c) 2025 Pakistan Journal of Medicine and Dentistry

This work is licensed under a Creative Commons Attribution 4.0 International License.
This is an open-access article distributed under the terms of the CreativeCommons Attribution License (CC BY) 4.0 https://creativecommons.org/licenses/by/4.0/