Awareness for Diagnosis, Management and Preventive Options of Thalassemia

Year 2018, , 66 - 72, 01.04.2018

Daniyal Ahmed Kiran Tauseef Bukhari Humaira Zafar Noor Khan Lakhnana Muhammad Nouman Nawaz

https://doi.org/10.5455/umj.20180612070836

Abstract

Objective: To assess the frequency of individuals having awareness regarding diagnosis, management, and prevention of Thalassemia. Method: A simple random sampling technique was used for 130 participants in this descriptive cross-sectional study. The designed questionnaire including te demographics, awareness about diagnosis, management, and prevention was used for the study. Results: Overall females had more awareness than males. 37% n=48 males and 44% n=57 females said they were not tested for thalassemia. 40% n=52 males and 45% n=58 females said they do not have thalassemia in their family. 37% n=48 males and 49% n=64 females responded that pre-marital screening could be beneficial. 22% n=29 males and 42% n=55 females responded that thalassemia could be prenatally diagnosed. Only 15% n=19 males and 39% n=51 females knew about chorionic villous sampling. 34% n=44 males and 43% n=56 females said thalassemia is treatable. 35% n=45 males and 48% n=62 females said thalassemia could be fatal. 34% n=44 males and 44% n=57 females think that thalassemic patients could lead a normal life with appropriate Management. Conclusion: Awareness regarding diagnosis from blood, pre-marital screening, Management and different treatment modalities Blood Transfusion, BMT , fatality and severity of disease among non-medical related individuals is less as compared to medical related individuals but in some cases, medical related professionals also had very less awareness like prenatal diagnosis and chorionic villus sampling.

Keywords

Thalassemia, Awareness, Diagnosis, Management, Prevention

References

• WHO. Global epidemiology of haemoglobin disorders and derived service indicators. Website: [www.who.int/ bulletin/ volumes/86/6/06-036673/en] Retrieved on 2nd June 2016.
• WHO. Genes and human disease (Thalassemia). Website: [http://www.who.int/genomics/public/geneticdiseases/en/ index2.html#Thalassaemia] Retrieved on 2nd June 2016.
• Thalassemia - Thalassemia Federation of Pakistan : [tfp.org.pk/what-is-thalassaemia] Retrieved on 2nd 2016.
• Thalassemia-Mayo Clinic Website: [http://www.mayoclinic. org/diseases-conditions/thalasemia/home/ovc-20261825] Retrieved on 2nd June 2016.
• Kukreja A, Khan A, Xian L, Razley A, Rahim Z. Awareness of Thalassemia Among Rural Folks in Penang, Malaysia. Internet J Heal. 2009;12(1): 8016
• 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
• Wong LP; George E; Tan JAMA. Public perceptions and attitudes toward thalassemia: Influencing factors in a multi- racial population. BMC Public Health. 2011;11(2): 193.
• Murthy VCR, Zarif M, Zulkeffle AB, Venkateswaran SP, Barua A. Knowledge, awareness and participation of medical and non-medical students in the Malaysia National Thalassemia Prevention Programme. Int J Human Genetics, 2015; 15(2): 61-72.
• Burgess-Beusse B, Farrell C, Gaszner M, Litt M, Mutskov V, Recillas-Targa F, et al. The insulation of genes from external enhancers and silencing chromatin. Proc Natl Acad Sci U S A. 2002;99(Suppl 4):16433–7.
• Calmels B, Ferguson C, Laukkanen MO, Adler R, Faulhaber M, Kim HJ, et al. Recurrent retroviral vector integration at the Mds1/Evi1 locus in nonhuman primate hematopoietic cells. Blood. 2005;106:2530–3.
• Carey BW, Markoulaki S, Hanna J, Saha K, Gao Q, Mitalipova M, et al. Reprogramming of murine and human somatic cells using a single polycistronic vector. Proc Natl Acad Sci U S A. 2009;106:157–62.
• Chin JY, Kuan JY, Lonkar PS, Krause DS, Seidman MM, Peterson KR, et al. Correction of a splice-site mutation in the beta-globin gene stimulated by triplex-forming peptide nucleic acids. Proc Natl Acad Sci U S A. 2008;105:13514–9.
• Dave UP, Akagi K, Tripathi R, Cleveland SM, Thompson MA, Yi M, et al. Murine leukemias with retroviral insertions at Lmo2 are predictive of the leukemias induced in SCID-X1 patients following retroviral gene therapy. PLoS Genet. 2009;5: 491.