This was a cross-sectional study, with the aim of estimating the hospital prevalence of SCD in children and adolescents consulting or hospitalized in the paediatric department of the CHU SO in Togo in 2022. The prevalence of SCD was 6.0% (n = 19/317) and 3 times higher in subjects whose parents' hemoglobin status was known (17.1% vs 5.1%) even though this difference was not statistically significant.
In 1999, Segbena et al reported a prevalence of SCD ranging from 1.1% (SS) to 2.3% (SC) in newborns recruited in three maternity hospitals in the city of Lomé (Togo) (3, 8). According to the available literature, the prevalence of SCD ranges from 0.5–2.26% in West Africa. For instance, In Mali and Senegal in 2005 respectively 0.8% and 0.5% prevalence was reported (9). In the Democratic Republic of Congo, Batina et al and Tchilolo et al reported in 2009 a prevalence of SCD of 0.96% and 1.4% respectively (10, 11). This prevalence was 2.26% in Côte d'Ivoire in 2020 (12) and 1.67% in Burkina Faso in 2014 (13).
In view of these various results, on one hand the prevalence of SCD has doubled since the first studies in Togo, and on the other hand the prevalence of SCD remains very high in Togo compared with other African countries. This increase in prevalence can be explained by a lack of information about the disease and the absence of a national mass screening program and specifically neonatal screening. However, we cannot exclude the fact that the prevalence we estimated in hospital settings could be overestimated.
As found in our study, more than eight in ten parents were unaware of their hemoglobin status, which prevented them from receiving appropriate genetic counseling. Similarly, Mombo et al in Gabon in 2021, reported that only 6% of pregnant women knew their hemoglobin status (14). These data first reveal the need of community awareness concerning SCD in order to improve adult’s knowledge of their hemoglobin status and thus their ability to take objective decision concerning the reproduction life. It secondly shows that updated population-based data is needed in order to assess the current burden of the disease and refine control policies. Finally it lead us to question the need of genetic counseling and neonatal screening, which are the two main prevention strategies for SCD, in our context (15).
Indeed, genetic counseling is a communication process by which the counselor ensures clients gain a detailed understanding of genetic diseases while carefully considering their emotional state (16). During counseling, genetic counselors analyze information on personal and family health history and determines the chances of a person or his/her family member inheriting SCD. The counselor can then help individuals decide which genetic test to undergo for a confirmed diagnosis (17).
Newborn screening pilot initiatives for hemoglobinopathies were being implemented in Angola, Nigeria, Ghana, the Democratic Republic of Congo, and the Republic of Benin (18). The cost of testing, lack of sufficient and accessible medical records, and inadequacy in healthcare infrastructure pose significant challenges in bridging the gaps in newborn screening (18). In the absence of neonatal screening, we propose early systematic screening of children during pediatric consultations starting from 6 months of age as an alternative method to facilitate prompt management of sickle cell children and raise awareness among parents. In both these options, the use of accurate point-of-care diagnostic tests that demonstrated high performance even on newborn cord blood (19, 20), should be seriously considered.
Our study provides updated data on the prevalence SCD in Togo, the last study dating back to 2002 (3). Moreover, the study is based on data from screening in patients who were a priori unaware of their hemoglobin status. The main limitation is that it is a hospital survey, and the data cannot be extrapolated to the national level. It then seems urgent to carry out a national study to confirm the trend reported in this study.