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.

Patterns and patient factors associated with loss to follow-up in the Muhimbili sickle cell cohort, Tanzania.

BACKGROUND: Monitoring patient's clinical attendance is a crucial means of improving retention in care and treatment programmes. Sickle cell patients' outcomes are improved by participation in comprehensive care programmes, but these benefits cannot be achieved when patients are lost from clinical care. In this study, patients are defined as loss to follow-up when they did not attend clinic for more than 9 months. Precise information on the retention rate and characteristics of those who are not following their clinic appointments is needed to enable the implementation of interventions that will be effective in increasing the retention to care. METHOD: This was a retrospective study involving sickle cell patients registered in the Muhimbili Sickle Cohort in Tanzania. Descriptive and survival analysis techniques both non-parametric methods (Kaplan-Meier estimator and Log-rank test) and semi-parametric method (Cox's proportional hazard model), were used. A p-value of 0.05 was considered significant to make an inference from the analysis. RESULTS: A total of 5476 patients were registered in the cohort from 2004 to 2016. Of these, 3350 (58.13%) were actively participating in clinics, while 2126 (41.87%) were inactive, of which 1927 (35.19%) were loss to follow-up. We used data from 2004 to 2014 because between 2015 and 2016, patients were referred to other government hospitals. From the survival analysis results, pediatric (HR: 14.29,95% CI: 11.0071-18.5768, p <  0.001) and children between 5 and 17 years [HR:2.61,95% CI:2.2324-3.0705, p <  0.001] patients were more likely to be loss to follow-up than the adult (18 and above years) patients. It was found that patients with above averages for hematocrit (HR: 2.38, 95% CI: 1.0076-1.0404, p = 0.0039) or mean cell volume (HR: 4.28, (95% CI: 1.0260-1.0598, p < 0.001) were more likely to be loss to follow-up than their counterparts. CONCLUSION: Loss to follow-up is evident in the cohort of patients in long term comprehensive care. It is, therefore, necessary to design interventions that improve patients' retention. Suggested solutions include refresher training for health care workers and those responsible for patient follow-up on techniques for retaining patients and comprehensive transition programs to prepare patients who are moving from pediatric to adult clinics.