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Implementation of a Prospective Birth Cohort for Newborn Screening and Early Linkage to Comprehensive Sickle Cell
Umma A Ibrahim1, Aisha B Musa2, Oiza O Aliu-Isah1
1Department of Pediatrics, Bayero University/Aminu Kano Teaching Hospital, Kano 700233, Nigeria.
Insights
Implementing family-centered communication strategies significantly improved early linkage to comprehensive sickle cell disease (SCD) care following newborn screening in Nigeria. This approach is vital for reducing under-five mortality in low-resource settings.
Area of Science:
- Public Health
- Genetics
- Pediatrics
Background:
- Sub-Saharan Africa faces high under-five mortality, exacerbated by limited newborn screening (NBS) for sickle cell disease (SCD).
- Delayed diagnosis and care linkage contribute significantly to mortality among newborns with SCD in this region.
Purpose of the Study:
- To evaluate the feasibility of integrating NBS with early comprehensive SCD care.
- To identify barriers to early enrollment (before 3 months) in SCD care.
- To assess the impact of a family-centered communication strategy on early care linkage.
Main Methods:
- A prospective, quasi-experimental study conducted in two sequential newborn screening cohorts at Aminu Kano Teaching Hospital, Nigeria.
- Initial implementation followed by the introduction of a structured family-centered enrollment and communication strategy.
- Comparison of early enrollment rates (≤3 months) before and after intervention.
Main Results:
- Pre-intervention: 46.5% early enrollment overall (72.8% SCD, 43.0% non-SCD).
- Post-intervention: Early enrollment increased to 91.7%.
- Family-centered strategies substantially improved early linkage to comprehensive SCD care.
Conclusions:
- Low-cost, family-centered communication and tracking strategies are effective in improving early linkage to comprehensive SCD care post-NBS in low-resource settings.
- Early enrollment is crucial for reducing morbidity and mortality in children with SCD.
- Integrated NBS and care strategies are feasible and impactful in sub-Saharan Africa.
Abstract:
In sub-Saharan Africa, where approximately 75% of newborns with sickle cell disease (SCD) are born, under-five mortality remains high, partly due to the absence of newborn screening (NBS) and delayed linkage to comprehensive care. We conducted a prospective, quasi-experimental study involving two sequential newborn screening cohorts at Aminu Kano Teaching Hospital (AKTH), Kano, Nigeria (December 2022-December 2025), to evaluate the feasibility of integrating newborn screening (NBS) with early comprehensive SCD care and to identify barriers to enrollment before 3 months of age. Following an initial implementation period with suboptimal follow-up, a structured family-centered enrollment and communication strategy was introduced to improve early linkage to comprehensive care. During the pre-intervention period, 277 newborns were enrolled (33 with SCD and 244 without SCD [NSCD]), with early enrollment (≤3 months) occurring in 46.5% overall, higher among SCD than NSCD infants (72.8% vs. 43.0%). Delayed enrollment (>6 months) was more frequent among SCD infants. Following the implementation of family-centered communication strategies, 60 additional newborns were enrolled (16 SCD, 44 NSCD), and early enrollment increased to 91.7%. These findings demonstrate that low-cost, family-centered communication and tracking strategies can substantially improve early linkage to comprehensive SCD care following newborn screening in low-resource settings. Early enrollment is a critical step toward reducing morbidity and mortality among children with SCD in low-resource settings.