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.