Health-related quality of life and healthcare consultations among adult patients before and after diagnosis with rheumatic heart disease in Namibia.

BACKGROUND: Rheumatic Heart Disease (RHD) causes high morbidity and mortality rates among children and young adults, impacting negatively on their health-related quality of life (HRQoL). This study aimed to evaluate the HRQoL and healthcare consultations of adult patients with RHD in Namibia. METHODS: From June 2019 to March 2020, a questionnaire was administered to 83 RHD patients during routine follow-ups. The EQ-5D-5L instrument was used to assess the health-related quality of life before diagnosis and at the time of the survey. The Ethiopian value set for EQ-5D-5L was used to calculate Quality-Adjusted Life Years (QALY). RESULTS: Most respondents were women (77%), young adults below the age of 30 years (42%), and individuals who grew up in rural areas (87%). The mean QALY statistically significantly improved from 0.773 pre-diagnosis to 0.942 in the last 12 months (p < 0.001). Sixty-six patients who had surgery reported a better QALY. Healthcare visits statistically significantly increased from on average 1.6 pre-diagnosis to 2.7 days in the last 12 months (p < 0.001). The mean distance to the nearest facility was 55 km, mean cost of transport was N$65, and mean time spent at the clinic was 3.6 h. The median time from diagnosis to the survey was 7 years (quartiles 4 and 14 years). CONCLUSION: Treatment and surgery can improve HRQoL substantially among RHD patients. Being diagnosed with RHD affects patients living in socioeconomically disadvantaged rural areas through cost and time for healthcare visits. It would be valuable with further research to understand differences between disease severities.

Recommendations for developing effective and safe paediatric and congenital heart disease services in low-income and middle-income countries: a public health framework.

The global burden of paediatric and congenital heart disease (PCHD) is substantial. We propose a novel public health framework with recommendations for developing effective and safe PCHD services in low-income and middle-income countries (LMICs). This framework was created by the Global Initiative for Children's Surgery Cardiac Surgery working group in collaboration with a group of international rexperts in providing paediatric and congenital cardiac care to patients with CHD and rheumatic heart disease (RHD) in LMICs. Effective and safe PCHD care is inaccessible to many, and there is no consensus on the best approaches to provide meaningful access in resource-limited settings, where it is often needed the most. Considering the high inequity in access to care for CHD and RHD, we aimed to create an actionable framework for health practitioners, policy makers and patients that supports treatment and prevention. It was formulated based on rigorous evaluation of available guidelines and standards of care and builds on a consensus process about the competencies needed at each step of the care continuum. We recommend a tier-based framework for PCHD care integrated within existing health systems. Each level of care is expected to meet minimum benchmarks and ensure high-quality and family centred care. We propose that cardiac surgery capabilities should only be developed at the more advanced levels on hospitals that have an established foundation of cardiology and cardiac surgery services, including screening, diagnostics, inpatient and outpatient care, postoperative care and cardiac catheterisation. This approach requires a quality control system and close collaboration between the different levels of care to facilitate the journey and care of every child with heart disease. This effort was designed to guide readers and leaders in taking action, strengthening capacity, evaluating impact, advancing policy and engaging in partnerships to guide facilities providing PCHD care in LMICs.

Effects of COVID-19 on paediatric cardiac centres in low-income and middle-income countries: a mixed-methods study.

OBJECTIVES: The aim of this study was to understand the effects of the COVID-19 pandemic on paediatric cardiac services in critical access centres in low-income and middle-income countries. DESIGN: A mixed-methods approach was used. SETTING: Critical access sites that participate in the International Quality Improvement Collaborative (IQIC) for congenital heart disease (CHD) were identified. PARTICIPANTS: Eight IQIC sites in low-income and middle-income countries agreed to participate. OUTCOME MEASURES: Differences in volume and casemix before and during the pandemic were identified, and semistructured interviews were conducted with programme representatives and analysed by two individuals using NVivo software. The qualitative component of this study contributed to a better understanding of the centres' experiences and to identify themes that were common across centres. RESULTS: In aggregate, among the seven critical access sites that reported data in both 2019 and 2020, there was a 20% reduction in case volume, though the reduction varied among programmes. Qualitative analysis identified a universal impact for all programmes related to Access to Care/Clinical Services, Financial Stability and Professional/Personal Issues for healthcare providers. CONCLUSIONS: Our study identified and quantified a significant impact of the COVID-19 pandemic on critical access to CHD surgery in low-income and middle-income countries, as well as a significant adverse impact on both the skilled workforce needed to treat CHD and on the institutions in which care is delivered. These findings suggest that the COVID-19 pandemic has been a major threat to access to care for children with CHD in resource-constrained environments and that this effect may be long-lasting beyond the global emergency. Efforts are needed to preserve vulnerable CHD programmes even during unprecedented pandemic situations.

Rheumatic heart disease prevalence in Namibia: a retrospective review of surveillance registers.

BACKGROUND: Rheumatic heart disease (RHD) is the most commonly acquired heart disease in children and young people in low and middle-income settings. Fragile health systems and scarcity of data persist to limit the understanding of the relative burden of this disease. The aims of this study were to estimate the prevalence of RHD and to assess the RHD-related health care systems in Namibia. METHODS: Data was retrieved from outpatient and inpatient registers for all patients diagnosed and treated for RHD between January 2010 to December 2020. We used descriptive statistics to estimate the prevalence of RHD. Key observations and engagement with local cardiac clinicians and patients helped to identify key areas of improvement in the systems. RESULTS: The outpatient register covered 0.032% of the adult Namibian population and combined with the cumulative incidence from the inpatient register we predict the prevalence of clinically diagnosed RHD to be between 0.05% and 0.10% in Namibia. Young people (< 18 years old) are most affected (72%), and most cases are from the north-eastern regions. Mitral heart valve impairment (58%) was the most common among patients. We identified weaknesses in care systems i.e., lack of patient unique identifiers, missing data, and clinic-based prevention activities. CONCLUSION: The prevalence of RHD is expected to be lower than previously reported. It will be valuable to investigate latent RHD and patient follow-ups for better estimates of the true burden of disease. Surveillance systems needs improvements to enhance data quality. Plans for expansions of the clinic-based interventions must adopt the "Awareness Surveillance Advocacy Prevention" framework supported by relevant resolutions by the WHO.

The Namibian Children's Heart Project: a South-South partnership to provide cardiac care.

IntroductionCongenital and acquired heart diseases are highly prevalent in developing countries despite limited specialised care. Namibia established a paediatric cardiac service in 2009 with significant human resource and infrastructural constraints. Therefore, patients are referred for cardiac interventions to South Africa. OBJECTIVES: To describe the diagnoses, clinical characteristics, interventions, post-operative morbidity and mortality, and follow-up of patients referred for care. METHODS: Demographics, diagnoses, interventions, intra- and post-operative morbidity and mortality, as well as longitudinal follow-up data of all patients referred to South Africa, were recorded and analysed. RESULTS: The total cohort constituted 193 patients of which 179 (93%) had CHD and 7% acquired heart disease. The majority of patients (78.8%) travelled more than 400 km to Windhoek before transfer. There were 28 percutaneous interventions. Palliative and definitive surgery was performed in 27 and 129 patients, respectively. Out of 156 patients, 80 (51.3%) had post-operative complications, of which 15 (9.6%) were a direct complication of surgery. Surgical mortality was 8/156 (5.1%, 95% confidence interval 2.2-9.8), with a 30-day mortality of 3.2%. Prolonged ICU stay was associated with a 5% increased risk of death with hazard ratio 1.05, 95% confidence interval 1.02-1.08, p=0.001. Follow-up was complete in 151 (78%) patients for more than 7 years. CONCLUSIONS: Despite the challenges associated with a cardiac programme for referring patients seeking intervention in a neighbouring country and the adverse characteristics of multiple lesions and complexity associated with late presentation, we report good surgical and interventional outcomes. Our goal remains to develop a comprehensive sustainable cardiac service in Namibia.