Implementing newborn screening for sickle cell disease in Korle Bu Teaching Hospital, Accra: Results and lessons learned

Abstract

Background Early diagnosis of sickle cell disease (SCD) through newborn screening (NBS) is a cost‐effective intervention, which reduces morbidity and mortality. In sub‐Saharan Africa (SSA) where disease burden is greatest, there are no universal NBS programs and few institutions have the capacity to conduct NBS. We determined the feasibility and challenges of implementing NBS for SCD in Ghana's largest public hospital. Procedure The SCD NBS program at Korle Bu Teaching Hospital (KBTH) is a multiyear partnership between the hospital and the SickKids Center for Global Child Health, Toronto, being implemented in phases. The 13‐month demonstration phase (June 2017–July 2018) and phase one (November 2018–December 2019) focused on staff training and the feasibility of universal screening of babies born in KBTH. Results During the demonstration phase, 115 public health nurses and midwives acquired competency in heel stick for dried blood spot sampling. Out of 9990 newborns, 4427 babies (44.3%) were screened, of which 79 (1.8%) were identified with presumptive SCD (P‐SCD). Major challenges identified included inadequate nursing staff to perform screening, shortage of screening supplies, and delays in receiving screening results. Strategies to overcome some of the challenges were incorporated into phase one, resulting in increased screening coverage to 83.7%. Conclusions Implementing NBS for SCD in KBTH presented challenges with implications on achieving and sustaining universal NBS in KBTH and other settings in SSA. Specific steps addressing these challenges comprehensively will help build on the modest initial gains, moving closer toward a sustainable national NBS program.

The Consortium on Newborn Screening in Africa for sickle cell disease: study rationale and methodology

“… 16 Clinical SCD standards for the consortium were established by the National Heart, Lung, and Blood Institute 2014 report and adapted for low-resource settings by public health care networks and pediatric guidelines (eg, the World Health Organization’s Expanded Programme on Immunization), consortium’s members, and other global SCD experts drawing on SCD care guidelines and the region’s newborn screening experience. 16 , 20 , 32 , 33…”

“…16 Clinical SCD standards for the consortium were established by the National Heart, Lung, and Blood Institute 2014 report and adapted for low-resource settings by public health care networks and pediatric guidelines (eg, the World Health Organization's Expanded Programme on Immunization), consortium's members, and other global SCD experts drawing on SCD care guidelines and the region's newborn screening experience. 16,20,32,33 The consortium's implementation trial components are to (1) register patient data and medical history of babies diagnosed with SCD within the first 3 months of life in a shared database, (2) initiate antibacterial and antimalarial prophylaxis within the first 3 months of life, (3) ensure immunization of each baby against Streptococcus pneumoniae and Haemophilus influenzae type b (Hib), (4) monitor each patient at required intervals and update the patient's record in the registry after each visit, and (5) estimate the incidence of specific SCD genotypes and identify other hemoglobin variants among populations in CONSA countries.…”

“…14 , 15 Similar programs have been introduced in some sub-Saharan African countries with high SCD burden. 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 However, many of these were pilot programs with limited scale and/or sustainability and did not demonstrate the impact of the program on U5M.…”

Potential for a large‐scale newborn screening strategy for sickle cell disease in Mali: A comparative diagnostic performance study of two rapid diagnostic tests (SickleScan® and HemotypeSC®) on cord blood

“…Several SCD screening programmes were launched in Africa for infants alongside immunization programmes using RDTs on dried blood spots from heel stick samples. [22][23][24] To our knowledge, no study has specifically assessed their diagnostic performances using cord blood.…”

Analysis of clinical presentation, hematological factors, self-reported bed net usage, and malaria burden in sickle cell disease patients

“…Africa is disproportionately affected by malaria (93%), and Ghana accounts for 4% of the global malaria burden [ 10 , 11 ]. In Ghana, 30% of people have SCT, and approximately 1·9% of births per year have SCD [ 12 , 13 ]. The hematological differences among individuals with various hemoglobinopathies mediating the severity of malaria have not been fully investigated.…”