The efficacy of maternal health education and maternal screening on knowledge and the uptake of infant screening for sickle cell disease in Dar-Es-Salaam, Tanzania; a quasi experimental study.

BACKGROUND: Globally, Sickle cell disease (SCD) is one of the most common genetic disease with high childhood mortality. Early identification of babies with SCD through newborn screening (NBS) and linking them to care are among the recommended interventions. The purpose of this study was to assess the efficacy of maternal health education and maternal screening for SCD on knowledge and the uptake of infant screening for SCD among mother-infant pairs attending antenatal clinics at Government health facilities in Dar-es-salaam, Tanzania.  METHODS: This study was a pre-test post-test, quasi-experimental which involved pregnant women attending antenatal clinics at three hospitals; Mbagala hospital, Sinza hospital and Buguruni health center in Dar Es Salaam. A structured questionnaire was used in data collection. Knowledge on SCD was assessed for all participants before and after two sessions of health education. Participants in Mbagala and Buguruni were also screened for SCD using Sickle SCAN point-of-care test (BioMedomics Inc, USA). The efficacy for health education intervention was computed as the post-intervention minus baseline knowledge score. For proportions, a two-sample z-test was used. Univariate and multivariate logistic regression were used to analyze the efficacy of health education intervention and also predictors of infant diagnosis.  RESULTS: For two sessions of health education intervention, a total of 467 pregnant women completed the sessions. During antenatal visits, a total of 218 were screened for SCD. The proportion of participants with good knowledge of SCD had significantly increased to 85.9% from 12.4% at baseline following the education intervention. In multivariate analysis, sharing the received education on SCD was an independent predictor of the efficacy of health education intervention. Maternal occupation, maternal SCD status as well as sharing the received education on SCD were independent predictors of the uptake of SCD infant diagnosis. CONCLUSION: This study has demonstrated that maternal health education and maternal screening for SCD are feasible and efficacious interventions in raising knowledge and improving the uptake of infant diagnosis for SCD. These interventions are strongly recommended to be included in the comprehensive care package for pregnant women attending antenatal clinics, particularly in areas with a high burden of SCD.

Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease.

Background: Sickle cell disease (SCD) is a severe hereditary form of anemia that contributes between 50% and 80% of under-five mortality in Africa. Eleven thousand babies are born with SCD annually in Tanzania, ranking 4th after Nigeria, the Democratic Republic of Congo and India. The absence of well-described SCD cohorts is a major barrier to health research in SCD in Africa. Objective: This paper describes the Sickle Pan African Consortium (SPARCO) database in Tanzania, from the development, design of the study instruments, data collection, analysis of data and management of data quality issues. Methods: The SPARCO registry used existing Muhimbili Sickle Cell Cohort (MSC) study case report forms (CRF) and later harmonized data elements from the SickleInAfrica consortium to develop Research Electronic Data Capture (REDCap) instruments. Patients were enrolled through various strategies, including mass screening following media sensitization and health education events during World Sickle Cell Day each June and the SCD awareness month in September. Additional patients were identified through active surveillance of previously participating patients in the MSC. Results: Three thousand eight hundred patients were enrolled between October 2017 and May 2021. Of these, 1,946 (51.21%) were males and 1,864 (48.79%) were females. The hemoglobin phenotype distribution was 3,762 (99%) HbSS, 3 (0.08%) HbSC and 35 (0.92%) HbSb +thalassemia. Hemoglobin levels, admission history, blood transfusion and painful events were recorded from December 2017 to May 2021. Conclusion: The Tanzania SPARCO registry will improve healthcare for SCD in Africa through the facilitation of collaborative data-driven research for SCD.

Prevalence of Hemoglobin-S and Baseline Level of Knowledge on Sickle Cell Disease Among Pregnant Women Attending Antenatal Clinics in Dar-Es-Salaam, Tanzania.

Background: Sickle cell disease (SCD) is the single most important genetic cause of childhood mortality globally. Newborn screening (NBS) is the recommended intervention aimed at early identification of babies with SCD and their linkage to care. To ensure success of NBS, pregnant women need to have the required knowledge on SCD and therefore motivation to screen their babies. Objective: The aim of this study was to determine the prevalence of hemoglobin-S and assess the baseline level of knowledge on SCD among pregnant women attending antenatal clinics in urban settings in Dar-es-Salaam, Tanzania. Methods: This cross-sectional study was conducted between August 2020 and February 2021, involving 600 pregnant women at 20-28 weeks of gestation attending antenatal clinics at Buguruni Health Center, Mbagala Hospital, and Sinza Hospital in Dar-es-Salaam, Tanzania. We administered a structured questionnaire to all participants to assess socio-demographic characteristics and baseline level of knowledge on SCD, where those scoring 7 or higher out of 10 questions were considered to have good knowledge. We screened for SCD a total of 300 participants from two centers (Buguruni Health Center and Mbagala Hospital) by using Sickle SCAN point-of-care test (BioMedomics Inc., United States). We used SPSS version 23 to analyze the data. On determining the association between level of knowledge and socio-demographic factors, we used Pearson's Chi-square and multivariate logistic regression in ascertaining the strength of associations. Results: Of the 600 participants, the majority were of the age between 26 and 35 years (51%), with the parity of 1-3 children (55.8%) and secondary level of education (43%), while 56% were self-employed. Only 14.7% had good knowledge on SCD. The majority of the participants had ever heard of SCD (81.3%), most of them heard from the streets (42.4%), and only 2.4% heard from hospitals. Of all 600 study participants, only 2 (0.3%) knew their SCD status while 7.7% declared having a family history of SCD. A proficient level of knowledge on SCD is associated with a high level of education, occupation, and knowing personal status of SCD. Among 300 participants who were screened for SCD, 252 were Hb-AA (84%), 47 were Hb-AS (15.7%), and 1 (0.3%) was Hb-SS. Conclusion: Despite the high prevalence of hemoglobin-S among pregnant women attending antenatal clinics in urban settings in Tanzania, there is a poor level of knowledge on SCD and personal knowledge of SCD status. Maternal screening and health education on SCD should be included as part of the comprehensive package for health promotion at antenatal clinics.