Volume: 8 Issue: 2
Year: 2020, Page: 57-63, Doi: https://doi.org/10.47799/pimr.0802.13
Background: Thalassemia is a hereditary autosomal recessive haemoglobinopathy that remains a major health problem throughout the world.
Aims and Objectives: The aim of this study was to evaluate knowledge of the relatives of Thalassemia patients regarding different aspects of Thalassemia with special emphasis on the role of splenectomy.
Material and Methods: This was a cross-sectional study conducted at a Government Tertiary Thalassemia day care centre. Initially, 131 relatives of Thalassemia patients were interviewed. Excluding 10 relatives, 87 (66.4 %) relatives having knowledge of splenectomy were further interviewed regarding various aspects of splenectomy.
Result: In our survey, 67.2 % relatives had knowledge about the congenital origin of the disease. The knowledge about premarriage counselling, risk of consanguineous marriage, antenatal screening and medical termination of pregnancy was 55%, 29.8%, 70.2% and 64.1% respectively.
Although all (100%) relatives knew about regular blood transfusion and iron chelation, only 74% and 63.4% of the relatives had the knowledge about splenectomy and bone marrow transplant as a treatment modality, respectively.
In 87 relatives interviewed further, 37.9 % came to know about splenectomy from other relatives. The indications of splenectomy known were: splenomegaly (98.8%), increased blood transfusion (68.9%), low platelet count (20.6%) and low TLC (4.6%). Only 47.1% were aware about the optimal age of splenectomy.
Awareness about serious complication of OPSI, its prevention by preoperative vaccinations and postoperative chemoprophylaxis was only 48.3%, 62% and 46% respectively. Around 59% knew about role of blood transfusion and 74.7% were aware about the need of regular follow up after splenectomy.
Conclusion: This survey revealed that there is still a lot of lacuna existing in the knowledge of various aspects of Thalassemia and about splenectomy as a treatment modality among relative of Thalassemia patients. Relatives of thalassemia patient having knowledge about splenectomy can be good educators for other relatives and they should be actively recruited as health educators.
Keywords: Thalassemia, Splenectomy, Knowledge, Survey, Prevention and Control
1. Modell B,Darlison M. Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ. 2008, 86(6):480–487.
2. Sharma S, Seth B, Jawade P, Ingale M, Setia MS. Quality of life in children with thalassemia andtheircare givers in India. Indian J Pediatr. 2017; 84(3):188-194.
3 Mohanty D, Colah RB, Gorakshakar AC, Patel RZ, Master DC, Mahanta J, et al. Prevalence of ß-thalassemia and other haemoglobinopathies in six cities in India: A multicentre study. J Community Genet.2013; 4(1):33-42.
4. Brewer CJ, Coates TD, Wood JC. Spleen R2 and R2* in iron overloaded patients with sickle cell disease and thalassemia major. J MagnReson Imaging. 2009; 29(2):357-364.
5. MettanandaS,FisherCA,HayD,BadatM,QuekL,ClarkK,etal. Editing an a-globin enhancer in primary human hematopoietic stem cells as a treatment for ß-thalassemia. Nat Commun.2017; 8(1):424.
6. Garden OJ. The spleen. In: Williams NS, Bulstrode CJ, O’Connell PR (Eds).Bailey and Love’s Short Practice of Surgery. 26th edition. London.CRC Press. 2013:1087-1096.
7. Rodeghiero F,Ruggeri M.Short and long term risks of splenectomy for benign haematological disorders: Should we revisit the indications? Br J Haematol. 2012; 158(1):16– 29
8. Saxena A,Sharif M,Siddiqui S,Singh S.Knowledge,practice and experiences of parents with a thalassemic child.Int J Contemp Pediatr.2017; 4:1630-33.
9. Biswas B, Naskar NN ,Basu R, Dasgupta A, Paul B, Basu K. Knowledge of the caregivers of thalassemic children regarding thalassemia: Across- sectional studyin atert iarycarehealthfacilityofeastern India. Iraqi J Hematol. 2018; 7:49-54.
10. Maheen H, Malik F, Siddique B, Qidwai A. Assessing parental knowledge about thalassemia in athalassemia center of Karachi, Pakistan.J Genet Couns.2015; 24(6):945- 51.
11. Ishaq F,Abid H,Kokab F,Akhtar A,Mahmood S.Awareness among parents of ß-thalassemia major patients regarding prenatal diagnosis and premarital screening.J Coll Physicians Surg Pak.2012; 22(4):218-21.
12. Ali S, Saffiullah, Malik F. Awareness of parents regarding beta thalassemia major disease. Khyber Med Univ J. 2015; 7(2):72-5.
13. Goyal JP, Hpapani PT, Gagiya H. Awareness among parents of children with thalassemia major from Western India. Int J Med Sci Public Health. 2015; 4:1356-59.
14. Inamdar S,Inamdar M,Gangrade A.Stress level among caregivers of thalassemia patients.Ntl J Community Med.2015; 6(4):579-82.
15. Pandey VK, Aggarwal P, Kakkar R. Modified BG Prasad Socio-economic Classification, Update – 2019.Indian J Comm Health. 2019; 31(1):123-125.
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. Aggarwal K. A Study to assess the knowledge of parents of thalassemic children in the age group of 2-7 years attending thalassemic ward of a selected hospital of Delhi, regarding management of thalassemia. Int J Nurs&Midwifery Research.2016; 3:36-40.
18. 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 Preven Medic Holistic Health.2015; 1(1):5-12.
DewandaN, Ankit Kumar. Knowledge of the Relatives of Thalassemia Patients with Special Regards to Splenectomy as a Treatment Modality: A Cross-Sectional Survey. Perspectives in Medical Research2020; 8 (2):57-63. DOI : 10.47799/pimr.0802.13