Factors Influencing Beta-Thalassemia Awareness in Western India

Authors

  • Ashwin P Patel Indian Red Cross Society, Ahmedabad
  • Prakash H Parmar2 Indian Red Cross Society, Ahmedabad
  • Rupesh B Patel Indian Red Cross Society, Ahmedabad
  • Nikhil M Trivedi Hematology Clinic, Ahmedabad
  • Nileshkumar A Bhartiya Indian Red Cross Society, Ahmedabad

Keywords:

beta-thalassemia, screening, prenatal diagnosis, hypochromic microcytic anemia

Abstract

Context: Beta-thalassemia is highly prevalent in western India. Our organization runs a screening and prevention program to create awareness and reduce the incidence of homozygous beta-thalassemia cases.

Aims: The study was designed to evaluate factors influencing awareness about Beta-thalassemia.

Methodology: This cross sectional survey was conducted at six colleges, two medical clinics, and a thalassemia transfusion centre. It involved 398 adults (≥18 years).The survey form was objective and written in the local language. Statistical analysis was done using Chi square test in SPSS software version 20.

Results: All the participants knew that beta-thalassemia affected males and females equally. Correct responses to various questions varied from 6.5 % to 45.2 %. The participants with a positive family history or who were already tested for beta-thalassemia had significantly more knowledge (p < 0.0001), but even participants with first-degree relatives of Beta-thalassemia major didn’t have complete knowledge. Age and gender had no impact while education influenced only certain aspects.

Conclusions: Cascade screening should be used to enhance already increased awareness in people with a positive family history. Aggressive screening of college students will be helpful as they are likely to use it in the near future reducing the incidence of homozygous beta-thalassemia.

References

Borgna-Pignatti C, Galanello R. Thalassemia and related disorders: Quantitative disorders of Hemoglobin synthe-sis. In: John P. Greer, John Foerster, George M. Rodgers, Frixos Paraskevas, Bertil Glader, Danial A. Arber, Robert T. Means, J reds, editors. Wintrobe’s Clinical Hematology. 12th International Ed. Wolters Kluwer / Lippincott Wil-liams & Wilkins, 2008, p.1083-1131.

Lipkin M Jr, Fisher L, Rowley PT, Loader S, Iker HP. Ge-netic counseling of asymptomatic carriers in a primary care setting. The effectiveness of screening and counseling for Beta-thalassemia trait. Ann Intern Med 1986; 105:115-123.

Patel AP, Naik MR, Shah NM, Sharma NP, Parmar PH. Prevalence of common hemoglobinopathies in Gujarat: an analysis of a large population Screening program. Nation-al Journal of Community Medicine 2012; 3:112-116

United Kingdom Thalassemia Society. Thalassemia Asian Awareness Campaign Report of a three-year cam-paign (1997-2000). http://www.ukts.org/pdfs/awareness/asianaware.pdf

Cao A, Furbetta M, Galanello R, Melis MA, Angius A, Ximenes A, et al. Prevention of homozygous Beta-thalassemia by carrier screening and prenatal diagnosis in Sardinia. Am J Hum Genet 1981; 33:592-605.

Patel AP, Patel RB, Patel SA, Vaniawala SN, Patel DS, Shrivastava NS, et al. Beta Thalassemia Mutations in Western India: Outcome of Prenatal Diagnosis in a He-moglobinopathies Project. Hemoglobin. 2014; 38:329-34. doi: 10.3109/03630269.2014.951889. Epub 2014 Sep 15.

Memish ZA, Saeedi MY. Six-year outcome of the national premarital screening and genetic counseling program for sickle cell disease and Beta-thalassemia in Saudi Arabia. Ann Saudi Med 2011; 31:229-235. doi: 10.4103/0256-4947.81527

Alhamdan NA. Premarital screening for thalassemia and sickle cell disease in Saudi Arabia. Genet Med 2007; 9:372-377.

Gorakshakar AC, Colah RB. Cascade screening for Beta-thalassemia: A practical approach for identifying and counseling carriers in India. Indian J Community Med 2009; 34:354-356. doi: 10.4103/0970-0218.58399

Colah R, Thomas M, Mayekar P. Assessing the impact of screening and counselling high school children for b-thalassemia in India. J Med Screen 2007; 14: 158.

Al Sulaiman A, Saeedi M, Al Suliman A, Owaidah T. Postmarital follow-up survey on high risk patients sub-jected to premarital screening program in Saudi Arabia. Prenat Diagn 2010; 30:478–481.

Al-Odaib AN, Abu-Amero KK, Ozand PT, Al-Hellani AM. A new era for preventive genetic programs in the Arabian Peninsula. Saudi Med J 2003; 24:1168–1175.

Mitchell JJ, Capua A, Clow C, Scriver CR. Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and b-Thalassemia disease carriers in high schools. Am J Med Genet 1996; 59: 793–798.

Lena-Russo D, Badens C, Aubinaud M, Merono F, Pao-lasso C, Martini N, et al. Outcome of a school screening program for carriers of hemoglobin disease. J Med Screen 2002; 9: 67–69.

Balgir RS. The genetic burden of hemoglobinopathies with special reference to community health in India and the challenges ahead. Indian J Hematol Blood Transfus 2002; 20: 2-7.

Tamhankar PM , Agarwal S, Arya V, Kumar R, Gupta UR, Agarwal SS. Prevention of homozygous Beta-thalassemia by premarital screening and prenatal diagno-sis in India. Prenat Diagn 2009; 29:83-88. Doi: 10.1002/pd.2176

Petrou M. Screening for Beta thalassemia. Indian J Hum Genet 2010; 16: 1–5. Doi: 10.4103/0971-6866.64934

Armeli C, Robbins SJ, Eunpu D. Comparing knowledge of b-thalassemia in samples of Italians, Italian-Americans, and non-Italian-Americans. J Genet Couns 2005; 14: 365–376.

Yagnik H. Post counseling follow up of thalassemia in high risk communities. Indian Pediatr 1997; 34:1115–1118.

Saxena A, Phadke SR. Feasibility of thalassemia control by extended family screening in Indian context. J Health Popul Nutr 2002; 20:31–35.

Vaillant GE. Adaptation to life: How the Best and the Brightest Came of Age. 1st ed. Boston: Little Brown & Company, 1977, pp.75-126.

A Kukreja, A Khan, L Xian, A Razley, Z Rahim. Aware-ness of Thalassemia Among rural folks in Penang, Malasia. The Internet journal of Health 2009; 12:1-12.

Ostrowsky JT, Lippman A, Scriver CR. Cost-benefit anal-ysis of a thalassemia disease prevention program. Am J Public Health 1985; 75:732-736.

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Published

2016-03-31

How to Cite

1.
Patel AP, Parmar2 PH, Patel RB, Trivedi NM, Bhartiya NA. Factors Influencing Beta-Thalassemia Awareness in Western India. Natl J Community Med [Internet]. 2016 Mar. 31 [cited 2024 Nov. 21];7(03):193-7. Available from: https://njcmindia.com/index.php/file/article/view/890

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Original Research Articles