Community based screening for sickle haemoglobin among pregnant women in Benue State, Nigeria: I-Care-to-Know, a Healthy Beginning Initiative

Background: Haemoglobin genotype screening at prenatal care offers women an opportunity to be aware of their genotype, receive education on sickle cell disease (SCD) and may increase maternal demand for SCD newborn screening. In developed countries, most pregnant women who access prenatal care and deliver at the hospital receive haemoglobin genotype screening. In settings with low prenatal care attendance and low hospital deliveries, community-based screening may provide similar opportunity for pregnant women. We assessed the feasibility and acceptability of integrating haemoglobin genotype screening into an existing community-based HIV program. Methods: Onsite community-based integrated testing for HIV, hepatitis B virus and haemoglobin electrophoresis, were conducted for pregnant women and their male partners. Community Health Advisors implementing the NIH and PEPFAR-supported Healthy Beginning Initiative (HBI) program provided education on SCD, collected blood sample for haemoglobin electrophoresis and provided test results to participants enrolled into the HBI program. We concurrently conducted a cross-sectional study using a pretested, semi-structured, interviewer administered questionnaire to collect demographic data and assess awareness of individual haemoglobin “genotype” among HBI pregnant women participants. Results: In this study, 99.9% (10,167/10,168) of pregnant women who received education on SCD accepted and completed the survey, had blood drawn for haemoglobin electrophoresis and received their results. A majority of participating pregnant women (97.0%) were not aware of their haemoglobin “genotype”. Among the participants who were incorrect about their haemoglobin “genotype”, 41.1% (23/56) of women who reported their haemoglobin “genotype” as AA were actually AS. The odds of haemoglobin “genotype” awareness was higher among participants who were in younger age group, completed tertiary education, had less number of pregnancies, and attended antenatal care. Overall prevalence of sickle cell trait (AS) was 18.7%. Conclusions: It is feasible to integrate haemoglobin “genotype” testing into an existing community-based maternal-child program. Most pregnant women who were unaware of their haemoglobin “genotype” accepted and had haemoglobin genotype testing, and received their test results. Increasing parental awareness of their own haemoglobin “genotype” could increase their likelihood of accepting newborn screening for SCD. From June 2016 through October 2018, our study team sought to integrate screening for haemoglobin genotype into a community-based HBI program in Benue State, Nigeria supported by the United States National Institute of Health and Centers for Disease Control and Prevention. Benue State, north-central Nigeria has an estimated population of five million, most of the population live in rural areas and majority (70%) are peasant farmers [33]. The state has the second highest prevalence of HIV in Nigeria, at 4.9% [34]. A total of eighty churches in mostly rural communities across twelve LGAs in Benue State participated in the HBI. The HBI platform was utilized to consecutively recruit the pregnant women for assessment of the feasibility and acceptability of integrating haemoglobin genotype screening into the existing program. A full description and effectiveness of the HBI, a community-based framework for maternal child health interventions has previously been described [5, 31, 32, 35]. In summary, HBI consists of three strategic components. 1) Prayer sessions: Each Sunday, the clergy leader announces for pregnant women and their male partners to come out for prayers. The clergy leader prays for a healthy pregnancy, safe delivery and encourages pregnant women to seek antenatal care at a health facility. The priest introduces the concept of the HBI and the study team. 2) Group Baby showers are organized as an integrated community reception and health fair in religious centers during which health education on early antenatal care (ANC), SCD, importance of the integrated screening tests for pregnant women, good nutrition, skilled birth attendance, and immunizations are provided by trained community health advisors. In addition to physical measurements (weight, height and blood pressure) taken, an onsite integrated laboratory testing for HIV, hepatitis B virus (HBV) and haemoglobin electrophoresis, are conducted for pregnant women and their partners. Male partners received a “mama pack” to present to their female partners as an expression of love and support during the pregnancy. Pregnant women and their male partners who wish to participate in a study are enrolled by the team after signing an informed consent and completing a baseline questionnaire. 3) Baby receptions are organized six to eight weeks after delivery, for women who participated in the baby shower. Participating women complete post-delivery questionnaire which provide an opportunity to ascertain place of delivery, pregnancy outcome and other related information. Enhanced nutrition and immunization education were provided. This also offered an opportunity for post-delivery linkage to care for women who needed care. After reviewing and confirming informed consent, trained phlebotomists collected 2 ml of whole blood from participants using sterile procedures. HIV and HBV rapid tests were performed onsite in an enclosed private location. The remaining blood sample was transported in cold boxes with ice packs to a central laboratory where haemoglobin electrophoresis was performed. This test identifies different haemoglobins by their migration within an electric field [7]. Haemoglobins variants move at different rates depending on their net negative charge which in turn is controlled by the composition (amino acids) of their hemoglobin molecule. Red blood cells were first lysed to release haemoglobin using water. The lysed samples were carefully applied on cellulose acetate paper alongside control samples and the test performed as per protocol in the National Guidelines [36]. The results were then read in comparison with control haemoglobin samples to identify the haemoglobin variants as AA, AS, AC, SS or SC. We conducted a cross-sectional survey of HBI participants using questionnaires (Supplementary File) administered by trained research assistants who had a minimum of a Bachelor’s degree. The research assistants administered pretested semi-structured questionnaires during the baby showers individually to each pregnant woman and her male partner in a private location within the church premises. There were separate male and female questionnaires but only data from the female questionnaires are presented in this paper. Data was collected on sociodemographic characteristics and genotype awareness. Sociodemographic characteristics included age, sex, marital status, highest level of education, occupation, monthly income, languages spoken, distance to health facility, and number of people living in the household. This study was approved by the Health Research Ethics Committee of the University of Nigeria Teaching Hospital, Enugu, Nigeria. Baby shower was a health fair for celebration of pregnancy and delivery of health education to pregnant women and their male partners. As such, consent was not needed to participate in the baby showers but written informed consent was obtained from the participants for laboratory tests and questionnaire data collection. Statistical analysis was performed using SPSS statistical program version 22 (IBM Corp Released 2013). The median and interquartile range were calculated for continuous variables while frequencies and proportions were generated for categorical variables. Chi-square test was used to test the association between variables in the study and genotype awareness. Bivariable and multivariable logistic regression analyses were used to determine the predictors of awareness of genotype status by estimating odds ratios and their 95% confidence intervals (CI) at a significance level of p < 0.05. Only variables which showed significant association in the bivariable analysis were included in the multivariable analysis.