Browsing by Author "Ndagire, Emma"

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    Household Economic Consequences of Rheumatic Heart Disease in Uganda
    (Frontiers in Cardiovascular Medicine, 2021) Opara, Chinonso C.; Atala, Jenifer; Kansiime, Rosemary; Nakitto, Miriam; Ndagire, Emma; Nalubwama, Haddy; Okello, Emmy; Watkins, David A.; Su, Yanfang
    Rheumatic heart disease (RHD) has declined dramatically in wealthier countries in the past three decades, but it remains endemic in many lower-resourced regions and can have significant costs to households. The objective of this study was to quantify the economic burden of RHD among Ugandans affected by RHD.
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    Incidence of acute rheumatic fever in northern and western Uganda: a prospective, population-based study
    (The Lancet Global Health, 2021) Okello, Emmy; Ndagire, Emma; Muhamed, Babu; Sarnacki, Rachel; Nakitto, M.G.; Kansiime, Rosemary; Longenecker, Chris T.; Lwabi, Peter; Agaba, Collins; Omara, Isaac Otim; Oyella, Linda Mary; Rwebembera, Joselyn; Watkins, David; Carapetis, Jonathan R.
    Acute rheumatic fever is infrequently diagnosed in sub-Saharan African countries despite the high prevalence of rheumatic heart disease. We aimed to determine the incidence of acute rheumatic fever in northern and western Uganda. For our prospective epidemiological study, we established acute rheumatic fever clinics at two regional hospitals in the north (Lira district) and west (Mbarara district) of Uganda and instituted a comprehensive acute rheumatic fever health messaging campaign. Communities and health-care workers were encouraged to refer children aged 3–17 years, with suspected acute rheumatic fever, for a definitive diagnosis using the Jones Criteria. Children were referred if they presented with any of the following: (1) history of fever within the past 48 h in combination with any joint complaint, (2) suspicion of acute rheumatic carditis, or (3) suspicion of chorea. We excluded children with a confirmed alternative diagnosis. We estimated incidence rates among children aged 5–14 years and characterised clinical features of definite and possible acute rheumatic fever cases. Data were collected between Jan 17, 2018, and Dec 30, 2018, in Lira district and between June 5, 2019, and Feb 28, 2020, in Mbarara district. Of 1075 children referred for evaluation, 410 (38%) met the inclusion criteria; of these, 90 (22%) had definite acute rheumatic fever, 82 (20·0%) had possible acute rheumatic fever, and 24 (6%) had rheumatic heart disease without evidence of acute rheumatic fever. Additionally, 108 (26%) children had confirmed alternative diagnoses and 106 (26%) had an unknown alternative diagnosis. We estimated the incidence of definite acute rheumatic fever among children aged 5–14 years as 25 cases (95% CI 13·7–30·3) per 100 000 person-years in Lira district (north) and 13 cases (7·1–21·0) per 100 000 person-years in Mbarara district (west).
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    Outcomes of rheumatic fever in Uganda: a prospective cohort study
    (Elsevier Ltd, 2024-03) Wirth, Scott H; Pulle, Jafesi; Seo, JangDong; Ollberding, Nicholas J; Nakagaayi, Doreen; Sable, Craig; Bowen, Asha C; Parks, Tom; Carapetis, Jonathan; Okello, Emmy; Beaton, Andrea; Ndagire, Emma
    Abstract Rheumatic heart disease is the largest contributor to cardiac-related mortality in children worldwide. Outcomes in endemic settings after its antecedent illness, acute rheumatic fever, are not well understood. We aimed to describe 3-5 year mortality, acute rheumatic fever recurrence, changes in carditis, and correlates of mortality after acute rheumatic fever. We conducted a prospective cohort study of Ugandan patients aged 4-23 years who were diagnosed with definite acute rheumatic fever using the modified 2015 Jones criteria from July 1, 2017, to March 31, 2020, enrolled at three rheumatic heart disease registry sites in Uganda (in Mbarara, Mulago, or Lira), and followed up for at least 1 year after diagnosis. Patients with congenital heart disease were excluded. Patients underwent annual review, most recently in August, 2022. We calculated rates of mortality and acute rheumatic fever recurrence, tabulated changes in carditis, performed Kaplan-Meier survival analyses, and used Cox regression models to identify correlates of mortality. Data were collected between Sept 1 and Sept 30, 2022. Of 182 patients diagnosed with definite acute rheumatic fever, 156 patients were included in the analysis. Of these 156 patients (77 [49%] male and 79 (51%) female; data on ethnicity not collected), 25 (16%) died, 21 (13%) had a cardiac-related death, and 17 (11%) had recurrent acute rheumatic fever over a median of 4·3 (IQR 3·0-4·8) years. 16 (24%) of the 25 deaths occurred within 1 year. Among 131 (84%) of 156 survivors, one had carditis progression by echo. Moderate-to-severe carditis (hazard ratio 12·7 [95% CI 3·9-40·9]) and prolonged PR interval (hazard ratio 4·4 [95% CI 1·7-11·2]) at acute rheumatic fever diagnosis were associated with increased cardiac-related mortality. These are the first contemporary data from sub-Saharan Africa on medium-term acute rheumatic fever outcomes. Mortality rates exceeded those reported elsewhere. Most decedents already had chronic carditis at initial acute rheumatic fever diagnosis, suggesting previous undiagnosed episodes that had already compounded into rheumatic heart disease. Our data highlight the large burden of undetected acute rheumatic fever in these settings and the need for improved awareness of and diagnostics for acute rheumatic fever to allow earlier detection. Strauss Award at Cincinnati Children's Hospital, American Heart Association, and Wellcome Trust.
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    A Qualitative Study of Patients’ Experiences, Enablers and Barriers of Rheumatic Heart Disease Care in Uganda
    (Global Heart, 2023) Nalubwama, Hadija; Pulle, Jafesi; Atala, Jenifer; Nakitto, Miriam; Namara, Rebecca; Beaton, Andrea; Kansiime, Rosemary; Mwima, Rachel; Ndagire, Emma; Okello, Emmy; Watkins, David
    Rheumatic heart disease (RHD) remains a significant public health problem in countries with limited health resources. People living with RHD face numerous social challenges and have difficulty navigating ill-equipped health systems. This study sought to understand the impact of RHD on PLWRHD and their households and families in Uganda. In this qualitative study, we conducted in-depth interviews with 36 people living with RHD sampled purposively from Uganda’s national RHD research registry, stratifying the sample by geography and severity of disease. Our interview guides and data analysis used a combination of inductive and deductive methods, with the latter informed by the socio-ecological model. We ran thematic content analysis to identify codes that were then collapsed into themes. Coding was done independently by three analysts, who compared their results and iteratively updated the codebook. The inductive portion of our analysis, which focused on the patient experience, revealed a significant impact of RHD on work and school. Participants often lived in fear of the future, faced limited childbirth choices, experienced domestic conflict, and suffered stigmatization and low self-esteem. The deductive portion of our analysis focused on barriers and enablers to care. Major barriers included the high out-of-pocket cost of medicines and travel to health facilities, as well as poor access to RHD diagnostics and medications. Major enablers included family and social support, financial support within the community, and good relationships with health workers, though this varied considerably by location. Despite several personal and community factors that support resilience, PLWRHD in Uganda experience a range of negative physical, emotional, and social consequences from their condition. Greater investment is needed in primary healthcare systems to support decentralized, patient-centered care for RHD. Implementing evidence-based interventions that prevent RHD at district level could greatly reduce the scale of human suffering. There is need to increase investment in primary prevention and tackling social determinants, to reduce the incidence of RHD in communities where the condition remains endemic.
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    Secondary Antibiotic Prophylaxis for Latent Rheumatic Heart Disease
    (New England Journal of Medicine, 2022) Beaton, Andrea; Okello, Emmy; Rwebembera, Joselyn; Alepere, Juliet; Lwabi, Peter; Nakitto, Miriam; Ndagire, Emma; Omara, Isaac O.; Karthikeyan, Ganesan; Steer, Andrew C.
    Rheumatic heart disease affects more than 40.5 million people worldwide and results in 306,000 deaths annually. Echocardiographic screening detects rheumatic heart disease at an early, latent stage. Whether secondary antibiotic prophylaxis is effective in preventing progression of latent rheumatic heart disease is unknown.