Rheumatic Heart Disease (RHD) is a life-threatening heart condition which results from damage to heart valves caused by one or several episodes of rheumatic fever. Rheumatic fever can occur at any age, but usually occurs in children ages 5 to 15 years old.
RHD is a preventable yet serious public health problem. School based screening studies show a high prevalence in Timor-Leste and though the incidence is unknown there are frequent presentations to health services with both Acute Rheumatic Fever (ARF) and RHD, and kids often present late with advanced disease.
In less resourced countries like Timor-Leste, RHD has a greater impact: there are less opportunities for early diagnosis; less treatment and surgery meaning that more people will die from the disease and will die at a younger age; and many will people may also live with serious disability and reduced quality of life.
In 2019, Maluk Timor in collaboration with Menzies School of Health Research, East Timor Hearts Fund and the Timor-Leste Ministry of Health launched in to a research project – RECARDINA (Rapid Echocardiography for Congenital And Rheumatic heart Disease – Investigating a New Approach). The aim of the research was to use an echo scan on children to find signs of RHD, with the view of early detection and intervention.
This project recently came to an end – but the results were startling to say the least.
Two Districts were part of this study – Ermera and Dili – and two schools from each of these Districts were the main focus. Over 2,500 students were screened and 63 children were diagnosed with definite or borderline RHD. Of these 63 cases, 23 children had definite RHD. In total, 26 children required regular prophylactic treatment with penicillin, which was started immediately.
There are currently only a few Cardiologists in Timor-Leste, and no paediatric cardiologists. There is also a very limited capacity to perform echo’s with very few machines in the country. Therefore, increasing capacity for early detection of RHD in the country is clearly of high importance This project trained 15 “non-experts” (such as doctors, nurses, and healthcare workers) to perform an Echocardiogram (Echo’s) using a specific simplified RHD screening protocol and completed a minimum of 100 Echo’s, before they commenced the research.
A number of meetings were held with local leaders, including head of the villages, church and government people – to educate and highlight the disease and how early invention can save lives.
Despite the recent challenges to provision of primary health care posed by COVID-19 and the recent flooding disaster earlier in the year, of 26 patients, 25 have maintained ongoing engagement with the program. There was one known episode of recurrent ARF in this group, in a patient who had disengaged in the program, but the positive result is he has since reengaged with the program and had no further recurrences.
Mana Juliana is our RHD nurse who was employed through the HOT NORTH funding. She follows up ARF and RHD patients, including those diagnosed in the RECARDINA study and has personally completed over 44 visits to Health Centres in Dili and over 40 trips to the Districts.
Mana Juliana’s visits provide mentoring to healthcare workers and to ensure penicillin is administered to patients diagnosed in the RECARDINA study and the RECARDINA echo training. This continuation of the program has allowed for ongoing follow-up care for patients but importantly also for long term engagement with patients, families, and health services; factors that are vital to support the development of a national RHD program. Ministry of Health staff trained in delivery of benzathine penicillin and routine care of penicillin patients have continued to deliver this care with ongoing but varied levels of support at different facilities due to local challenges.
Through initiative of the Ermera community including clinics, schools and the church, Maluk Timor received a request to support a community meeting in order to explain RHD to all community members. This meeting was well attended by community representatives, patients, and family. The community members also requested if a portable echo machine could be placed locally to support the diagnosis of additional patients; this project is currently being followed up.
Preliminary data, advocacy and engagement from the RECARDINA study have contributed to the recent approval and publication of a National RHD guideline for Timor-Leste. Care for existing and new RHD and ARF patients and ongoing provision of penicillin will be strengthened by the release of this guideline.
Maluk Timor would like to thank Menzies School of Health Research, East Timor Hearts Fund and the Timor-Leste Ministry of Health for their support not only on the RECARDINA project, but also their ongoing support of RHD activities in Timor-Leste.
We would also like to thank all the children and families who participated in this important project.