Evaluation of the performance of the newborn sickle cell screening program and associated facilitators and challenges in Uganda

Abstract

Introduction In Africa, scaling up of national screening programs has been shown to be difficult. This could be attributed to the various challenges facing these programs in Africa. Therefore, is important to monitor progress of screening programs in order to identify areas for improvement. In Uganda, currently there has not been any study to establish the performance in implementation of the new born sickle cell screening program. Therefore, there is a gap in evidence as regards the performance in implementation of the program. This study aims to assess the performance of implementation of the program based on the number of children screened within the age of 3months and explore the challenges and facilitators associated with implementation of the program in Uganda. Objective: This study aimed to evaluate the performance of the newborn sickle cell screening program and explore the associated facilitators and challenges in Uganda. Methods A mixed methods study based on secondary data from the HMIS 105 and key informant interviews of program staff based in different health facilities to determine the extent of performance of the sickle cell program and associated challenges and facilitators. Performance was determined by the standards set by the Consortium on Newborn Screening in Africa for sickle cell disease. Secondary data for the period July 2021 to Jun 2023 was obtained from the national HMIS 105 database and analyzed using STATA. A pretested modified questionnaire was used to collect data on the challenges and facilitators. The qualitative data was collected from hospitals including Mengo Hospital, Lira Regional Referral Hospital, Mulago National Referral Hospital and Entebbe Hospital. This data was then analyzed using thematic analysis using NVivo. Results: The findings indicate that for the periods Jul 2021 to Jun 2022 and Jul 2022 to Jun 2023, only 1440 and 1900 children were screened within three months’ age respectively. These were below the CONSA target of 10,000 children per annum. There was variation in the proportions of children screened within 3 months’ age across regions with the South western region (9%) having the highest percentage followed by central 2 region with 7.4%, central 1 region with 3.8% then Kampala with 3.5%. The lowest proportion observed in West Nile and East Central each at 0.4% each. Statistical analysis using chi square test revealed a p value of <0.005. Of all the children screened within the age of 3 months across the periods Jul 2021 to Jun 2022 and Jul 2022 to Jun 2023, 71.9% were male compared to 28.1% who were female. Statistical analysis using chi square test revealed a p value of 0.0026. This indicates a statistically significant difference between the male and female children screened within 3 months’ age. The major challenges of the program were centered on input issues such as shortage of supplies which in turn lead to process issues such as inadequate motivation and mobilization of health workers to participate in the program and poorly filled and incomplete forms. The major facilitators included government support such as supply of hydroxyurea and effective transportation of samples and dissemination of results coordinated by CPHL. Discussion and recommendations: Screening of children within the age of three months is still a challenge due to input issues evidenced by the lack of resources and process issues such as incomplete forms and poor sample handling. These can be addressed by adjusting the age at which screening is done to from within 3months’ age to within age of 1 year and integration of the screening program into existing antenatal and post-natal care health services such as immunization could ensure that training, mobilization and other process activities run seamlessly. Conclusion: The numbers of children screened within three months’ age are below the CONSA target. The proportions of children screened within three months’ age vary with regard to region which indicates inconsistency in the implementation of the program in the various parts of the country. This is because of input issues and the fact that the neonatal screening was warranted in districts with the highest burden. According to this study, there are also more male children within the age of three months being screened compared to the female children within the same age. There is a need for more research to investigate the reason this observation given that this study did not involve the beneficiaries of this program.