The personal and clinical impact of screen-detected maternal rheumatic heart disease in Uganda: a prospective follow up study

• Published in: BMC pregnancy and childbirth Vol. 20; no. 1; p. 611
• Main Authors: Voleti, Sonia, Okello, Emmy, Murali, Meghna, Sarnacki, Rachel, Majwala, Albert, Ssembatya, Renny, Bakka, Olivia, Namisanvu, Henriator, Njeri, Angela, Matovu, Alphonsus, DeStigter, Kristen, Sable, Craig, Beaton, Andrea
• Format: Journal Article
• Language: English
• Published: England BioMed Central 09.10.2020; BMC
• Subjects: Adolescent; Adult; Antibiotic Prophylaxis - statistics & numerical data; Cardiovascular disease; Clinical outcomes; Decision Making, Shared; Echocardiography; Echocardiography - statistics & numerical data; Female; Follow-Up Studies; Health care; Health disparities; Health Services Accessibility - statistics & numerical data; Heart; Hospitals; Humans; Interviews; Male; Mass Screening - methods; Mass Screening - statistics & numerical data; Maternal Age; Maternal health; Medication Adherence - psychology; Medication Adherence - statistics & numerical data; Middle Aged; Mixed methods research; Mothers; Mothers - psychology; Mothers - statistics & numerical data; Penicillin; Penicillin G Benzathine - therapeutic use; Postpartum Period; Pregnancy; Pregnancy Complications, Cardiovascular - diagnosis; Pregnancy Complications, Cardiovascular - epidemiology; Pregnancy Complications, Cardiovascular - prevention & control; Pregnancy Complications, Cardiovascular - psychology; Prospective Studies; Rheumatic heart disease; Rheumatic Heart Disease - diagnosis; Rheumatic Heart Disease - drug therapy; Rheumatic Heart Disease - epidemiology; Rheumatic Heart Disease - psychology; Risk Assessment - statistics & numerical data; Risk Factors; Screening; Severity of Illness Index; Social Stigma; Spouses - psychology; Uganda; Uganda - epidemiology; Ultrasonic imaging; Womens health; Workers; Young Adult; Uganda; Screening; Uganda; Echocardiography; Rheumatic heart disease; Maternal health; Health disparities
• ISSN: 1471-2393; 1471-2393
• DOI: 10.1186/s12884-020-03189-z

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. 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. A 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. The 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. Screening 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.