Abstract
BackgroundPre-existing maternal cardiac disease is a significant contributor to adverse maternal, fetal, and neonatal outcomes. In 2015–2017, our team conducted the first community-based study of maternal rheumatic heart disease (RHD) in sub-Saharan Africa and identified RHD in 88% of those with pre-existing heart disease.Here we conducted a follow up investigation of women previously identified with RHD, describing clinical and echocardiographic outcomes, identifying barriers to medical adherence and evaluating the personal impact of RHD.MethodsA 2 week prospective follow up was completed at sites in Central and Eastern Uganda. Participants underwent a three-step mixed methods study comprising of 1) direct structured interview targeting clinical history and medication adherence, 2) echocardiogram to evaluate left-sided heart valves, and 3) semi-structured guideline interview to elicit personal impacts of RHD.ResultsThe team evaluated 40 (80%) of the original 51 mothers with RHD at a median post-partum time of 2.5 years after delivery (IQR 0.5). Echocardiographic data showed improvement in nine women with the remaining 31 women showing stable echocardiographic findings. Adherence to Benzathine penicillin G (BPG) prophylaxis was poor, with 70% of patients either poorly adherent or non-adherent.Three major themes emerged from interviews: 1) social determinants of health (World Health Organization, Social determinants of health, 2019) negatively affecting healthcare, 2) RHD diagnosis negatively affecting female societal wellbeing, 3) central role of spouse in medical decision making.ConclusionsScreening echocardiography can identify women with pre-existing rheumatic heart disease during pregnancy, but long-term follow-up in Uganda reveals adherence to medical care following diagnosis, including BPG, is poor. Additionally, mothers diagnosed with RHD may experience unintended consequences such as social stigmatization. As identification of occult RHD is critical to prevent adverse pregnancy outcomes, further research is needed to determine how to best support women who face a new diagnosis of RHD, and to determine the role of screening echocardiography in high-risk settings.
Highlights
Pre-existing maternal cardiac disease is a significant contributor to adverse maternal, fetal, and neonatal outcomes
While the reach is global, the prevalence and impact of disease is highest in low- and middle-income countries (LMICs), where 88–90% of maternal heart disease is rheumatic heart disease (RHD) [1]
Consented participants underwent a three-step mixed methods study to include 1) directed structured interview to capture clinical history, Benzathine Penicillin G (BPG) adherence, and clinical follow-up 2) echocardiogram focused on assessment of the left-sided valves, 3) semi-structured guideline interview to elicit the personal impacts of RHD on participant life, including access to care and reproductive decision making
Summary
Pre-existing maternal cardiac disease is a significant contributor to adverse maternal, fetal, and neonatal outcomes. In 2015–2017, our team conducted the first community-based study of maternal rheumatic heart disease (RHD) in sub-Saharan Africa and identified RHD in 88% of those with pre-existing heart disease. We conducted a follow up investigation of women previously identified with RHD, describing clinical and echocardiographic outcomes, identifying barriers to medical adherence and evaluating the personal impact of RHD. Pre-existing maternal cardiac disease is a major contributor to adverse maternal, fetal, and neonatal outcomes. While the reach is global, the prevalence and impact of disease is highest in low- and middle-income countries (LMICs), where 88–90% of maternal heart disease is rheumatic heart disease (RHD) [1]. In 2015–2017, our team conducted the first community-based study of maternal RHD in subSaharan Africa. The percent attributable risk of heart disease to the maternal, fetal and neonatal mortality was high: 11, 1.1, and 6.0% respectively [5]
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