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Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast Nigeria

Journal of Community Genetics volume 6, pages 369–374 (2015)Cite this article

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 (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.

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Acknowledgments

The study was partially supported by the HealthySunrise Foundation. The funding agency played no role in the study conception, design, data collection, data analysis, data interpretation, or writing of the report. The corresponding author, Dr. Ezeanolue, had full access to all the data in the study and had final responsibility for the decision to submit for publication. The authors are grateful to staff members at the Pediatrics Clinic, University of Nigeria College of Medicine, who assisted with the identification of potential participants.

Compliance with ethics guidelines

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Conflict of interest

Osita Ezenwosu, Bartholomew Chukwu, Anthony Ikefuna, Aaron Hunt, Justin Keane, Ifeoma Emodi, and Echezona Ezeanolue declare that they have no conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Authors and Affiliations

  1. Department of Pediatrics, University of Nigeria Teaching Hospital, Enugu, Nigeria

    O. U. Ezenwosu, B. F. Chukwu, A. N. Ikefuna & I. J. Emodi

  2. Department of Pediatrics, University of Nevada School of Medicine, 2040 W. Charleston Blvd. Suite 402, Las Vegas, NV, 89102, USA

    A. T. Hunt & E. E. Ezeanolue

  3. School of Community Health Sciences, University of Nevada, Las Vegas, NV, USA

    J. Keane

Authors
  1. O. U. Ezenwosu
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  2. B. F. Chukwu
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  3. A. N. Ikefuna
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  4. A. T. Hunt
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  5. J. Keane
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  6. I. J. Emodi
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  7. E. E. Ezeanolue
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Corresponding author

Correspondence to E. E. Ezeanolue.

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Ezenwosu, O.U., Chukwu, B.F., Ikefuna, A.N. et al. Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast Nigeria. J Community Genet 6, 369–374 (2015). https://doi.org/10.1007/s12687-015-0225-5

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  • DOI: https://doi.org/10.1007/s12687-015-0225-5

Keywords

  • Sickle cell genotype
  • Sickle cell awareness
  • Sickle cell knowledge
  • Nigeria
  • Cross-sectional survey
  • Healthy People 2020

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