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Sickle Cell Disease Newborn Screening-An Audit of a Twin Island State Pilot Program
Shivon Belle Jarvis1, Edda Hadeed2, Ketty Lee3
1Paediatric Department, Sir Lester Bird Medical Centre, Michael's Mount, St. John's, Antigua and Barbuda.
Insights
Antigua and Barbuda
Area of Science:
- Public Health
- Genetics
- Pediatrics
Background:
- Sickle Cell Disease (SCD) prevalence is high in the Caribbean.
- Newborn Screening (NBS) programs are crucial for early intervention but face sustainability issues.
- Grant dependency challenges the long-term viability of NBS programs.
Purpose of the Study:
- To audit the pilot Sickle Cell Disease Newborn Screening (SCD NBS) Program in Antigua and Barbuda.
- To assess the program's initial outcomes and identify areas for improvement.
- To evaluate the program's effectiveness in identifying infants with SCD.
Main Methods:
- Retrospective audit of the SCD NBS program data.
- Data collection from September 2020 to December 2021.
- Analysis of screening results, including conclusive rates and specific hemoglobin variants.
Main Results:
- 99% of eligible infants received conclusive screening results.
- Sickle Cell Disease was detected in 0.5% of newborns (1 in 222 live births).
- Maternal awareness of sickle cell status (82%) significantly higher than paternal awareness (3%).
Conclusions:
- The SCD NBS program in Antigua and Barbuda shows promising initial results comparable to regional data.
- Sustainability challenges due to grant dependency require attention.
- Establishing a quality improvement team and robust public education are vital for program success.
Abstract:
The prevalence of Sickle Cell Disease (SCD) within the Caribbean region remains second only to that of West Africa. The Newborn Screening (NBS) Program in Antigua and Barbuda remains heavily dependent on grants, therefore ultimately facing sustainability challenges. Early intervention and implementation of preventative measures post-NBS result in significant improvements in morbidity, quality of life, and survival. This audit reviewed the pilot SCD NBS Program in Antigua and Barbuda from September 2020 to December 2021. A conclusive result was received by 99% of babies eligible for screening, 84.3% of which were HbFA, whilst 9.6% and 4.6% were HbFAS and HbFAC, respectively. This was comparable to other Caribbean countries. Sickle Cell Disease was noted in 0.5% of babies screened, which translates to 1 in 222 live births. Eighty-two percent of mothers were aware of their sickle cell status, compared to 3% of fathers. The importance of instituting a quality improvement team post the initiation of a screening program and the need for a robust public education program have been demonstrated by this audit.
