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Updated: Mar 24, 2026

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Sickle-Cell Disease in Nigerian Children: Parental Knowledge and Laboratory Results
Stephen K Obaro1, Yvonne Daniel, Juliana O Lawson
1Division of Pediatric Infectious Diseases, University of Nebraska Medical Center, Omaha, Nebr., USA.
Insights
Many parents lack knowledge of their child's sickle cell disease (SCD) status, even after testing. Early diagnosis and public awareness are crucial for managing this common genetic disorder.
Area of Science:
- Genetics
- Pediatrics
- Public Health
Background:
- Sickle-cell disease (SCD) is a prevalent inherited disorder in sub-Saharan Africa, causing significant mortality and morbidity.
- Early diagnosis of SCD is critical for effective management and preventive interventions.
Purpose of the Study:
- To evaluate parental awareness of their children's hemoglobin phenotype before laboratory testing.
- To compare parental perceptions with validated laboratory results for hemoglobin phenotypes.
Main Methods:
- A prospective community-based survey was conducted.
- Parental knowledge of children's hemoglobin phenotype was assessed and compared with high-performance liquid chromatography (HPLC) test results.
- 10,126 children under 5 years were screened.
Main Results:
- Of 163 parents who reported prior testing, 51 (31.2%) were unaware of the results, and 18 (35.3%) of these children had SCD.
- Incorrect results were reported by 25 (15.3%) of parents claiming prior knowledge.
- 272 new SCD cases (2.76%) were identified in 9,963 previously untested children.
Conclusions:
- There is a critical need to enhance public awareness regarding SCD and the importance of early diagnosis.
- Ensuring quality assurance in laboratory diagnostics for SCD is essential.
- Establishing sustainable patient care pathways is vital for managing SCD.
Background:
Sickle-cell disease (SCD) is the most common inherited genetic disorder in sub-Saharan Africa, and it is associated with early mortality and lifelong morbidity. Early diagnosis is essential for instituting appropriate care and preventive therapy.
Objective:
To compare parental knowledge or perception of their offspring's hemoglobin phenotype prior to testing and actual validated laboratory test results.
Methods:
In a prospective community-based survey, we assessed parental knowledge of their children's hemoglobin phenotype and corroborated this with the results from a laboratory confirmatory test determined by high-performance liquid chromatography.
Results:
We screened 10,126 children aged less than 5 years. A total of 163 (1.6%) parents indicated that their offspring had been previously tested and had knowledge of the child's hemoglobin genotype. However, 51 (31.2%) of 163 parents of children who had been previously tested did not know the result of their offspring's test, and 18 (35.3%) of these 51 children were found to have SCD. Of those who claimed previous knowledge, 25 (15.3%) of 163 reported incorrect results. Overall, we identified 272 (2.76%) new cases from 9,963 children who had not been previously tested.
Conclusion:
There is the need to promote public awareness about SCD and the benefit of early diagnosis, quality assurance in laboratory diagnosis and institution of sustainable patient care pathways.
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