Sickle cell disease in Sundargarh: understanding local beliefs and screening efforts among tribal population, Western Odisha
DOI:
https://doi.org/10.18203/2394-6040.ijcmph20253240Keywords:
Odisha, Perception, Sickle cell anemia, Sickle cell trait, Sundargarh, Tribal communitiesAbstract
Background: Sickle cell disease remains a significant health challenge among Odisha’s tribal communities, where limited awareness and healthcare access lead to delayed diagnoses. This study examined the incidence of sickle cell disease and local perceptions of it in Sundargarh’s Subdega and Balisankara blocks.
Methods: This cross-sectional study, conducted from June 2023 to March 2024 in Sundargarh, Odisha, examined the prevalence of sickle cell disease and assessed community perceptions using questionnaires, screenings, and HPLC analysis. 280 respondents participated, providing insights into sickle cell disease awareness, while 210 children were screened for early detection. Findings were presented through descriptive statistics, Pearson correlation, and Kruskal-Wallis tests, with significance set at p<0.05.
Results: A total of 280 adults (males: 117 and females: 163) with 95 children (below 15 years) from the same families were freshly diagnosed with sickle cell disease, and they were unaware of the condition. Of the 280 people sampled, 54.3% had not even heard of sickle cell disease; only 9.37% knew it was an inherited disease. Limited awareness of sickle cell disease led to misconceptions, with many relying on traditional healers.
Conclusions: The study found a prevalence of sickle cell anemia (HbSS) among variants of sickle cell disease, with limited awareness and testing. Strengthening education and healthcare access is essential for better detection and support, though overall perceptions of the disease were positive.
Metrics
References
Babu BV, Sharma Y, Sridevi P, Surti SB, Bhat D, Ranjit M, et al. Strengthening health system and community mobilization for sickle cell disease screening and management among tribal populations in India: an interventional study. Hemoglobin. 2023;47(6):227-36. DOI: https://doi.org/10.1080/03630269.2023.2300675
Kujur R, Minz S. Proliferation of tribal migrants and repercussion: case study from the tribal areas of Sundargarh District, Odisha (India). Curr Res J Soc Sci Humanit. 2021;4(1):27-44. DOI: https://doi.org/10.12944/CRJSSH.4.1.04
Das A, Dixit S, Kumar BM, Ghosal J, Babu BV, Bal M, et al. Knowledge and perception related to sickle cell disease among tribal community, India: a mixed-method study. J Nat Med Assoc. 2023;115(4):441-53.
National Health Mission. National Sickle Cell Anemia Elimination Mission, 2024. Available at: https://sickle.nhm.gov.in. Accessed on 7 April 2024.
New Indian Express. 20 Odisha districts in sickle cell disease elimination mission, 3 July 2023. Available at: https://www.newindianexpress.com/ cities/bhubaneswar/2023/Jul/03/20-odisha-districts-in-sickle-cell-disease-elimination-mission-2590947.html. Accessed on 21 September 2023.
Pati S, Singh KJ, Nayak M, Mansingh A, Bhoi T, Mishra D, et al. Mapping of sickle cell anemia in the tribal sub-plan area among the tribal communities of the state and a compendium of empirical studies and their findings on sickle cell anaemia among the tribal communities of Odisha. Trib Affairs. 2022;427.
Rani S, Vamshidhar SS, Bangaru IS, John NA, John J. A study of spectrum of sickle cell anemia and thalassemia in a teaching institute of South India. Niger J Clin Pract. 2022;25(4):490-5. DOI: https://doi.org/10.4103/njcp.njcp_1742_21
Ministry of Health and Family Affairs. Significant milestone crossed- more than 1 crore screened for Sickle Cell Disease under the National Sickle Cell Anaemia Elimination Mission, 2 Jan 2024. Available at https://pib.gov.in/PressReleasePage. aspx?PRID=1992340. Accessed on 21 April 2024.
Mujumdar A, Mujumdar V. Study of sickle cell anemia in tribal area of Dahod region of Gujarat. Int Arch Biomed Clin Res. 2020;6(1):A17-9.
Frommel C. Newborn screening for sickle cell disease and other hemoglobinopathies: a short review on classical laboratory methods-isoelectric focusing, HPLC, and capillary electrophoresis. Int J Neonat Screen. 2018;4(4):39. DOI: https://doi.org/10.3390/ijns4040039
Satam N, Patil VW, Garg D, Marar T. Prevalence of Sickle cell: a study from tribal rural western Maharashtra, India. DY Patil J Health Sci. 2021;9(1):5. DOI: https://doi.org/10.4103/dypj.DYPJ_10_20
Paramedics World. Red cell indices- mean cell volume (MCV), mean cell hemoglobin (MCH) and mean cell hemoglobin concentration (MCHC), 2018. Available at: https://paramedicsworld.com/ red-cell-indices-mean-cell-volume-mcv-mean-cell-hemoglobin-mch-mean-cell-hemoglobin-concentration-mchc/#google_vignette. Accessed on 12 January 2024.
Shah HB, Darji BP, Patel DB, Bhalodia JN. Evaluation of HPLC patterns and red cell parameters in sickle cell anemia cases. Int J Clin Diagn Pathol. 2022;5(4):39-42. DOI: https://doi.org/10.33545/pathol.2024.v7.i2a.567
Daniel WW. Biostatistics: a foundation for analysis in the health sciences. 10th edn. Nashville, TN: John Wiley and Sons; 2013.
Pourhoseingholi MA, Vahedi M, Rahimzadeh M. Sample size calculation in medical studies. Gastroenterol Hepatol Bed Bench. 2013;6(1):14-7.
Steinberg MH. Genetic etiologies for phenotypic diversity in sickle cell anemia. Sci World J. 2009;9:46-67. DOI: https://doi.org/10.1100/tsw.2009.10
John N. A review of clinical profile in sickle cell traits. Oman Med J. 2010;25(1):3-8. DOI: https://doi.org/10.5001/omj.2010.2
Bainbridge R, Higgs DR, Maude GH, Serjeant GR. Clinical presentation of homozygous sickle cell disease. J Pediatr. 1985;106(6):881-5. DOI: https://doi.org/10.1016/S0022-3476(85)80230-4
Patra PK, Khodiar PK, Hambleton IR, Serjeant GR. The Chhattisgarh state screening programme for the sickle cell gene: a cost-effective approach to a public health problem. J Community Genet. 2015;6(4):361-8. DOI: https://doi.org/10.1007/s12687-015-0222-8
Nanda AK, Pradhan SK, Supakar S, Pradhan PC. Prevalence of sickle cell disease among children in India: a systematic review and meta-analysis. Int J Health Sci. 2022;6(S2):13083-99. DOI: https://doi.org/10.53730/ijhs.v6nS2.8454
Panigrahi S, Patra PK, Khodiar PK. The screening and morbidity pattern of sickle cell anemia in Chhattisgarh. Indian J Hematol Blood Transfus. 2015;31(1):104-9. DOI: https://doi.org/10.1007/s12288-014-0407-z
Majhi C, Das BC. Development education and status of tribal development in Odisha. Int J Res Publ Rev. 2025;6(7):1222-6. DOI: https://doi.org/10.36948/ijfmr.2025.v07i05.55748
Mohamed SPK. Working Paper 477- Public healthcare infrastructure in tribal India: a critical review. The Institute for Social and Economic Change. 2023.
Babu BV, Sridevi P, Surti S, Ranjit M, Bhat D, Sarmah J, et al. Inadequate community knowledge about sickle cell disease among the Indian tribal population: a formative assessment in a multicentric intervention study. Trans R Soc Trop Med Hyg. 2021;115(12):1434-44. DOI: https://doi.org/10.1093/trstmh/trab075
Das A, Dixit S, Kumar Barik M, Ghosal J, Babu B, Bal M, et al. Knowledge and perception related to sickle cell disease among tribal community, India: A mixed-method study. J Nat Med Assoc. 2023;115(4):441-53. DOI: https://doi.org/10.1016/j.jnma.2023.06.007
Nagisetty S, Thatoju PK. Sickle cell disease burden among tribal population of India: a narrative review. Int J Community Med Public Health. 2024;11(11):4537-45. DOI: https://doi.org/10.18203/2394-6040.ijcmph20243320
Babu BV, Sridevi P, Surti SB, Bhat D, Sarmah J, Sudhakar G, et al. Sickle cell disease-related knowledge and perceptions of traditional healers in tribal communities in India: implications on sickle cell disease programme. J Community Genet. 2022;13(6):597-603. DOI: https://doi.org/10.1007/s12687-022-00614-y
Takri MR, Jaiswal A. Knowledge, attitude, and health care practices of sickle cell patients. J Emerg Technol Innov Res. 2014;10(1).
Downloads
Published
How to Cite
Issue
Section
