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Evaluation of Implementation of Newborn Screening for Sickle Cell Disease Program in Selected Hospitals in Dar es
Tunganege Matipa1,2, Elia Nyangi1, Agnes Jonathan1,2
1Department of Development Studies, School of Public Health and Social Sciences, Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania.
Insights
Newborn screening for sickle cell disease (SCD) in Tanzania shows promise but faces challenges. Implementation requires addressing training, supply, and cultural barriers to improve early diagnosis and care for affected infants.
Area of Science:
- Public Health
- Genetics
- Healthcare Management
Background:
- Sickle cell disease (SCD) is a significant health issue in Tanzania, with 11,000 annual births affected.
- Newborn screening (NBS) is crucial for early SCD diagnosis and intervention, yet implementation is limited to pilot sites.
- This study evaluates the implementation of NBS for SCD at two regional referral hospitals in Dar-es-salaam.
Purpose of the Study:
- To evaluate the implementation process of NBS for SCD at Temeke and Amana Regional Referral Hospitals.
- To identify facilitators and barriers influencing the NBS program's operational effectiveness.
- To provide recommendations for improving NBS for SCD in Tanzania.
Main Methods:
- An explanatory mixed-methods process evaluation was conducted from January 2022 to December 2024.
- Quantitative data from hospital registries and REDCap were analyzed using SPSS v29.0.
- Qualitative data from 17 healthcare worker interviews were thematically analyzed using NVivo v15.
Main Results:
- 10,711 newborns were screened; 0.70% had homozygous SCD (HbS/S) and 12.53% had sickle cell trait (HbA/S).
- Enrollment of diagnosed infants into care significantly declined: 65.6% (2022) to 10.5% (2024) at Temeke RRH; Amana RRH had no enrollments after the first year.
- Facilitators included maternal awareness and staff collaboration; barriers were inadequate training, delayed incentives, supply shortages, and parental hesitancy.
Conclusions:
- Substantial decline in SCD care enrollment is linked to operational challenges.
- While initial implementation had facilitators like trained staff, sustainability was hampered by ongoing issues.
- Addressing gaps in training, supply chains, incentives, and culturally sensitive education is vital for national NBS scale-up.
Abstract:
Sickle cell disease (SCD) is a major public health concern in Tanzania where approximately 11,000 children are born with the condition annually. Newborn screening (NBS) enables early diagnosis and timely intervention. Despite the proven effectiveness of NBS in reducing early mortality from SCD, implementation in Tanzania remains limited to pilot programs at facilities such as Temeke and Amana Regional Referral Hospitals (RRHs) in the city of Dar-es-salaam. This study evaluated the implementation of NBS for the SCD Program at Temeke and Amana RRHs. An explanatory mixed-methods process evaluation was conducted between January 2022 and December 2024. Quantitative data were extracted from hospital registries and REDCap, while qualitative data were obtained from key informant interviews with 17 healthcare workers. Quantitative data were analyzed using SPSS v29.0, while qualitative transcripts were thematically analyzed using NVivo software version 15 to explore operational factors influencing implementation. A total of 10,711 newborns were screened across the two hospitals. Seventy-four (0.70%) newborns had homozygous SCD (HbS/S), whereas 1325 (12.53%) had sickle cell trait (HbA/S). Enrolment of infants diagnosed with SCD into comprehensive care declined substantially over time, from 65.6% in 2022 to 10.5% in 2024 at Temeke RRH, while Amana RRH recorded no enrolments beyond the first year of implementation. Qualitative findings highlighted facilitators for NBS such as maternal awareness, interdepartmental collaboration, and the availability of trained staff. However, implementation was hindered by inadequate refresher training, delayed staff incentives, supply shortages, and parental hesitancy influenced by cultural beliefs. This evaluation found a substantial decline in enrolment of newborns diagnosed with SCD into comprehensive care, driven by key operational challenges. Although early implementation benefited from trained, committed staff and interdepartmental collaboration, sustainability was limited by inadequate refresher training, delayed incentives, supply shortages, and parental hesitancy. Addressing these gaps through regular capacity building, strengthened supply chains, timely incentives, and culturally sensitive community education is critical to improving enrolment, continuity of care, and informing national scale-up of NBS for SCD in Tanzania.
