Dataset Information

Prevalence of Sickle Cell Trait and Reliability of Self-Reported Status among Expectant Parents in Nigeria: Implications for Targeted Newborn Screening.

ABSTRACT: BACKGROUND/AIMS:Sickle cell disease (SCD) is a life-threatening, autosomal recessive blood disorder prevalent in sub-Saharan Africa. We identified the prevalence of sickle cell trait (SCT) among pregnant women and their male partners in Enugu State, Nigeria, and determined the accuracy of self-reported sickle cell status and its reliability for identifying high-risk newborns for targeted screening. METHODS:We conducted a nested cohort study of expectant parents enrolled in the Healthy Beginning Initiative (HBI). The HBI is a cluster-randomized trial of a congregation-based approach designed to increase HIV testing. Participants completed a survey regarding self-awareness of their sickle cell genotype and consented to genotype screening by cellulose acetate electrophoresis. RESULTS:SCT prevalence (HbAS) was 22% (746/3,371). Only 50% of participants provided an accurate self-report. Self-report accuracy was significantly different (p < 0.0001) between individuals who reported having SCT or SCD (61% accuracy) versus those who reported not having SCT or SCD (86% accuracy). Demographic variables including gender, age, household size, employment, education, and home location were significantly associated with providing an accurate self-report. CONCLUSIONS:Low numbers of accurate parental self-reports, coupled with a high SCT prevalence in Nigeria, could limit the efficacy of targeted newborn screening. However, our data indicate that it is feasible to integrate sickle cell screening for pregnant women with existing, community-based health care programs developed by the President's Emergency Plan for AIDS Relief (PEPFAR), such as the HBI. Expanding screening programs could enable the development of targeted newborn screening based on maternal genotype that could identify all newborns with SCD in resource-limited settings.

SUBMITTER: Burnham-Marusich AR

PROVIDER: S-EPMC5052321 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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Prevalence of Sickle Cell Trait and Reliability of Self-Reported Status among Expectant Parents in Nigeria: Implications for Targeted Newborn Screening.

Burnham-Marusich Amanda R AR Ezeanolue Chinenye O CO Obiefune Michael C MC Yang Wei W Osuji Alice A Ogidi Amaka G AG Hunt Aaron T AT Patel Dina D Ezeanolue Echezona E EE

Public health genomics 20160910 5

<h4>Background/aims</h4>Sickle cell disease (SCD) is a life-threatening, autosomal recessive blood disorder prevalent in sub-Saharan Africa. We identified the prevalence of sickle cell trait (SCT) among pregnant women and their male partners in Enugu State, Nigeria, and determined the accuracy of self-reported sickle cell status and its reliability for identifying high-risk newborns for targeted screening.<h4>Methods</h4>We conducted a nested cohort study of expectant parents enrolled in the Hea ...[more]

PMID: 27614873

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Project description:BackgroundSickle cell disease is highly prevalent in sub-Saharan Africa, where it accounts for substantial morbidity and mortality. Newborn screening is paramount for early diagnosis and enrolment of affected children into a comprehensive care programme. Up to now, this strategy has been greatly impaired in resource-poor countries, because screening methods are technologically and financially intensive; affordable, reliable, and accurate methods are needed. We aimed to test the feasibility of implementing a sickle cell disease screening programme using innovative point-of-care test devices into existing immunisation programmes in primary health-care settings.MethodsBuilding on a routine immunisation programme and using existing facilities and staff, we did a prospective feasibility study at five primary health-care centres within Gwagwalada Area Council, Abuja, Nigeria. We systematically screened for sickle cell disease consecutive newborn babies and infants younger than 9 months who presented to immunisation clinics at these five centres, using an ELISA-based point-of care test (HemoTypeSC). A subgroup of consecutive babies who presented to immunisation clinics at the primary health-care centres, whose mothers gave consent, were tested by the HemoTypeSC point-of-care test alongside a different immunoassay-based point-of-care test (SickleSCAN) and the gold standard test, high-performance liquid chromatography (HPLC).FindingsBetween July 14, 2017, and Sept 3, 2019, 3603 newborn babies and infants who presented for immunisation were screened for sickle cell disease at five primary health-care centres using the ELISA-based point-of-care test. We identified 51 (1%) children with sickle cell anaemia (HbSS), four (<1%) heterozygous for HbS and HbC (HbSC), 740 (21%) with sickle cell trait (HbAS), 34 (1%) heterozygous for HbA and HbC (HbAC), and 2774 (77%) with normal haemoglobin (HbAA). Of the 55 babies and infants with confirmed sickle cell disease, 41 (75%) were enrolled into a programme for free folic acid and penicillin, of whom 36 (88%) completed three visits over 9 months (median follow-up 226 days [IQR 198-357]). The head-to-head comparison between the two point-of-care tests and HPLC showed concordance between the three testing methods in screening 313 newborn babies, with a specificity of 100% with HemoTypeSC, 100% with SickleSCAN, and 100% by HPLC, and a sensitivity of 100% with HemoTypeSC, 100% with SickleSCAN, and 100% by HPLC.InterpretationOur pilot study shows that the integration of newborn screening into existing primary health-care immunisation programmes is feasible and can rapidly be implemented with limited resources. Point-of-care tests are reliable and accurate in newborn screening for sickle cell disease. This feasibility study bodes well for the care of patients with sickle cell disease in resource-poor countries.FundingDoris Duke Charitable Foundation, Imperial College London Wellcome Trust Centre for Global Health Research, and Richard and Susan Kiphart Family Foundation.

Project description:BackgroundPrenatal education encourages healthy behavioral choices and reduces rates of adverse birth outcomes. The use of mobile health (mHealth) technologies during pregnancy is increasing and changing how pregnant people acquire prenatal education. SmartMom is an evidence-based prenatal education SMS text messaging program that overcomes barriers to prenatal class attendance, including rural or remote location, cost, stigma among participants, lack of instructors, and cessation of classes during the COVID-19 pandemic.ObjectiveWe sought to explore perceived information needs and preferences for the content and structure of prenatal education mHealth programs among persons enrolled in or eligible to enroll in SmartMom.MethodsThis was a qualitative focus group study conducted as part of a development and usability study of the SmartMom program. Participants were older than 19 years of age, Canadian residents, fluent in English, and either currently pregnant or pregnant within the last year. We asked open-ended questions about information-seeking behaviors during pregnancy, the nature of the information that participants were seeking, how they wanted to receive information, and if SmartMom was meeting these needs. Focus groups took place via videoconference technology (Zoom) between August and December 2020. We used reflexive thematic analysis to identify themes that emerged from the data and the constant comparison method to compare initial coding to emerging themes.ResultsWe conducted 6 semistructured focus groups with 16 participants. All participants reported living with a partner and owning a cell phone. The majority (n=13, 81%) used at least 1 app for prenatal education. Our analysis revealed that "having reliable information is the most important thing" (theme 1); pregnant people value inclusive, local, and strength-based information (theme 2); and SMS text messages are a simple, easy, and timely modality ("It was nice to have that [information] fed to you"; theme 3). Participants perceived that SmartMom SMS text messages met their needs for prenatal education and were more convenient than using apps. SmartMom's opt-in supplemental message streams, which allowed users to tailor the program to their needs, were viewed favorably. Participants also identified that prenatal education programs were not meeting the needs of diverse populations, such as Indigenous people and LGBTQIA2S+ (lesbian, gay, bisexual, transgender, queer and/or questioning, intersex, asexual, Two-Spirit plus) communities.ConclusionsThe shift toward digital prenatal education, accelerated by the COVID-19 pandemic, has resulted in a plethora of web- or mobile technology-based programs, but few of these have been evaluated. Participants in our focus groups revealed concerns about the reliability and comprehensiveness of digital resources for prenatal education. The SmartMom SMS text messaging program was viewed as being evidence-based, providing comprehensive content without searching, and permitting tailoring to individual needs through opt-in message streams. Prenatal education must also meet the needs of diverse populations.

Dataset Information

Prevalence of Sickle Cell Trait and Reliability of Self-Reported Status among Expectant Parents in Nigeria: Implications for Targeted Newborn Screening.

Publications

Prevalence of Sickle Cell Trait and Reliability of Self-Reported Status among Expectant Parents in Nigeria: Implications for Targeted Newborn Screening.

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