Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast
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ORIGINAL ARTICLE
Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast Nigeria O. U. Ezenwosu 1 & B. F. Chukwu 1 & A. N. Ikefuna 1 & A. T. Hunt 2 & J. Keane 3 & I. J. Emodi 1 & E. E. Ezeanolue 2
Received: 23 October 2014 / Accepted: 2 April 2015 # Springer-Verlag Berlin Heidelberg 2015
Abstract Sickle cell trait (SCT; HbAS), the heterozygous state for the sickle cell allele of the beta globin gene, is carried by as many as 100 million individuals worldwide. Nigeria has the highest prevalence of SCT, impacting an estimated 25 % of adult population. This study was designed to assess timing of awareness, knowledge of SCT status and preferred method of education among parents of children with sickle cell disease (SCD). We conducted a cross-sectional survey of parents of children with SCD from June 2013–March 2014. Participants completed a 20-item questionnaire to assess (1) awareness of personal sickle cell genotype, (2) timing of awareness of personal sickle cell genotype, and (3) knowledge of SCT. One hundred and fifty-five participants completed the survey. Seventy-eight percent were females, and 87 % (135/155) were aware of their own sickle cell genotype. Timing of awareness varied as follows: following birth of a child with sickle cell disease (45 %); during marriage (21.5 %); school admission (9.6 %); during pregnancy (9.6 %); and other times (14 %). Approximately 35.5 % of participants thought that sickle cell trait was a mild form of sickle cell disease. Radio (43.9 %), informational community meetings (27.7 %), and television Electronic supplementary material The online version of this article (doi:10.1007/s12687-015-0225-5) contains supplementary material, which is available to authorized users. * E. E. Ezeanolue [email protected] 1
Department of Pediatrics, University of Nigeria Teaching Hospital, Enugu, Nigeria
2
Department of Pediatrics, University of Nevada School of Medicine, 2040 W. Charleston Blvd. Suite 402, Las Vegas, NV 89102, USA
3
School of Community Health Sciences, University of Nevada, Las Vegas, NV, USA
(21.9 %) were identified by participants as the most effective method of increasing sickle cell trait awareness. Innovative approaches are needed to increase the proportion of individuals who are aware of their own sickle cell genotype prior to having a child with sickle cell anemia in line with the Healthy People 2020 objective. Keywords Sickle cell genotype . Sickle cell awareness . Sickle cell knowledge . Nigeria . Cross-sectional survey . Healthy People 2020
Introduction Sickle cell disease includes a variety of pathologic conditions resulting from inheritance of sickle hemoglobin (Hb) either in a homozygous state (SS) or in a heterozygous state with another abnormal hemoglobin such as SC, Sβthal, SOArab, SD, and SG (Aken’ova 2013). The most common and most severe type is the homozygous state (SS) known as sickle cell anemia (SCA) associated with chronic severe hemolytic anemia and vaso-occlusion (Adek
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