Accuracy of Self-Reported Haemoglobin Genotype in a Rural Nigerian Community: Implications for Sickle Cell Disease Prevention

Background: In high-burden settings for sickle cell disease (SCD), many prevention strategies implicitly assume that adults who report “knowing their haemoglobin genotype” can accurately recall it. However, in rural Nigerian communities, where testing is often sporadic and post-test counselling inconsistent, the reliability of self-reported genotype remains poorly documented. Objective: To assess the accuracy of self-reported haemoglobin genotype among adults in Benue South Senatorial District and to describe patterns of misclassification compared with laboratory-confirmed results. Methods: A community-based cross-sectional study was conducted among 372 adults in three Local Government Areas of Benue South, Nigeria. Participants were asked whether they knew their haemoglobin genotype and, if yes, to state it (AA, AS, or SS). All participants provided venous blood for alkaline cellulose acetate haemoglobin electrophoresis, which served as the reference standard. Accuracy was defined as concordance between self-reported and laboratory-confirmed genotype among those who claimed awareness. Agreement was assessed using cross-tabulation and Fisher’s exact test. Results: Only 32 of 372 respondents (8.6%) reported knowing their haemoglobin genotype. Among these, 26/32 (81.3%) correctly stated their laboratory-confirmed genotype, while 6/32 (18.7%) were incorrect (Fisher’s exact p = 0.008). Accuracy was highest among those reporting AA (22/25; 88.0%), moderate among those reporting AS (4/6; 66.7%), and absent in the single respondent who reported SS (0/1). Misclassification occurred in both directions, with some individuals with AS misreporting as AA and vice versa. Conclusion: Although most individuals who claimed awareness correctly identified their genotype, nearly one in five were wrong. Reliance on self-report alone is therefore unsafe for premarital or antenatal counselling and community screening decisions. SCD prevention programmes should prioritise confirmatory testing, clearer post-test counselling, and written documentation of results rather than verbal self-declaration.