Knowledge, awareness, and attitude of premarital screening with special focus on sickle cell disease: a study from Odish
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ORIGINAL ARTICLE
Knowledge, awareness, and attitude of premarital screening with special focus on sickle cell disease: a study from Odisha Basanta Kumar Bindhani 1 & Naorem Kiranmala Devi 1 & Jayanta Kumar Nayak 2 Received: 29 January 2019 / Accepted: 10 June 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Sickle cell disease (SCD) is a genetic disorder with an estimated 5200 live births each year indicating towards a major public health issue in India. Although SCD has been described in India in numerous ethnic groups, it is most prevalent in tribal community. Prevalence of sickle cell gene is 5 to 34% in tribal communities, who have a high prevalence of socioeconomic disadvantage and are frequently medically underserved. The objective of the present study is to explore the knowledge, awareness, and attitude of premarital genetic counseling and screening for sickle cell hemoglobin among individuals of Koraput district. A cross-sectional study design was employed and a total of 152 individuals were recruited using multistage sampling technique, including 43 individuals with sickle cell hemoglobinopathy. Data was collected using a pre-tested, self-administered questionnaire and analyzed using SPSS-20. Though people are aware of SCD and SCT, majority believe that sickle cell carriers transmit the disease and they do not know that marriage between sickle cell carriers need to be avoided. Keywords Premarital counseling . Sickle cell disease . Knowledge . Attitude . Awareness
Introduction Sickle cell disease (SCD) is one of the most common monogenic disorders globally with an autosomal recessive inheritance (Serjeant and Serjeant 1992). Homozygous sickle cell (SS) disease occurs in an estimated 312,000 births annually (McGann 2014), and all forms of sickle cell disease are likely to exceed 400,000 births annually in the world (Serjeant et al. 2017). SCD has a high prevalence in India, especially in the tribal populations, and poses a considerable health burden (Rao 1988; Jain et al. 2012). Although it is now well established that Orissa is at higher risk for sickle cell and thalassemia hemoglobinopathies, there is a lack of appropriate approach to initiate a large-scale population-based study with a dedicated genetic counseling aim (Mohanty and Das 2011). Koraput district is one of the underdeveloped districts of Odisha and predominantly inhabited by tribal people. * Basanta Kumar Bindhani [email protected] 1
Department of Anthropology, University of Delhi, New Delhi 110007, India
2
Department of Anthropology, Central University of Orissa, Koraput 763004, India
Moreover, earlier studies suggested a high prevalence of SCD in this district (Bindhani and Nayak 2018). Therefore, Koraput district was considered for the present study. The objective of the present study is to explore the knowledge, awareness, and attitude of premarital genetic counseling and screening for sickle cell hemoglobin among individuals of Koraput district.
Materials and methods A pilot survey was carried out in 2
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