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.

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.

Preventive interventions to reduce the burden of rheumatic heart disease in populations at risk: a systematic review protocol.

BACKGROUND: Rheumatic heart disease is preventable, yet associated with significant health burden, mostly in low-resourced settings. It is prevalent among children and young adults living in impoverished areas. Primordial, primary, and secondary preventive measures have been recommended through health interventions and comprehensive programmes, although most implemented interventions are the high-resourced settings. The proposed review aims to synthesise the evidence of prevention effectiveness of implemented health interventions for the prevention of rheumatic heart disease. METHODS AND DESIGN: This article describes a protocol for a systematic review. A predefined search strategy will be used to search for relevant literature published from the year 2000 to present. Electronic databases Medline, Web of Science, Scopus, and Cochrane Central Register of Controlled Trials will be searched for the studies, as well as reference lists of relevant studies included. Risk of bias and quality appraisal will be done for the included studies using ROBINS-I tool and Cochrane tool for assessing risk of bias in randomised control trials. Findings will be analysed in subgroups based on the level of intervention and prevention strategy implemented. We will present the findings in descriptive formats with tables and flow diagrams. DISCUSSION: This review will provide evidence on the prevention effectiveness of interventions or strategies implemented for the prevention of RHD. The findings of this will be significant for policy, practice, and research in countries planning to implement interventions. REGISTRATION: PROSPERO ID: CRD42020170503.