Lucy Marks – A new study has found children in East Timor have among the highest rates of rheumatic heart disease in the world, with researchers estimating up to 10,000 young people could have the preventable, deadly disease.
Work is underway to train local Timorese health workers in picking up undiagnosed rheumatic heart disease, in order to get as many children as possible on lifesaving penicillin treatment.
A group of cardiologists and paediatricians from around Australia began the study in 2016, screening 1,400 children and young people in schools in Dili and Emera.
The results, published in the Medical Journal of Australia, show 3.5 per cent had definite or borderline rheumatic heart disease, with girls over-represented in the numbers.
Project lead Dr Josh Francis from the Menzies School of Health Research, supported by the East Timor Hearts Fund, said one in 20 girls had the illness, compared to one in 50 boys.
"If that prevalence of 3.5 per cent represents the whole country... there's half-a-million children in Timor Leste, so the burden of rheumatic heart disease is enormous," Dr Francis said. "There could be between 5,000 and 10,000 kids with rheumatic heart disease."
The patients identified with mild or moderate conditions were treated with monthly penicillin injections to stop the progression of the disease, giving the heart a chance to recover.
If the disease progresses to severe and the need for heart surgery goes unmet, the preventable disease can be fatal.
Timorese paediatric registrar Dr Mario Noronha said many children who come to hospital in East Timor already have late stages of the disease. "Because most of them still believe in traditional healers so this is a trouble for us to get the early stage," he said.
Dr Noronha is among several Timorese doctors on a six-month rotation in Darwin to learn how to detect the early stages of the disease and to educate Timorese people on how to identify symptoms.
"Through this rotation that I'm doing in this hospital [Royal Darwin Hospital] it will be very worthwhile in the future to prevent our children from this catastrophe," he said.
His colleague, Dr Sonia Lopes Belo, said the training in Darwin was vital to find solutions back home. "If we don't do the screening in a couple of months or a couple of years, they will come with the severe disease and even death," she said.
Dr Francis said the study's figures were the tip of the iceberg, and may be conservative, because only children who attended school were screened.
"There is a massive burden of undetected rheumatic heart disease [in East Timor] and it won't present to the clinics until it's too late," he said.
'V-scanners' increasing chance of diagnosis
Work is now underway to find more undetected cases by mobilising a local workforce of Timorese doctors, nurses and community workers, trained by Australian doctors.
The Timorese staff monitor those children identified as having rheumatic heart disease and administer monthly penicillin. From today, Dr Francis and a team of 40 health workers will set out to screen up to a further 3,000 school children over the next two weeks.
It is now hoped they will continue screening for undiagnosed disease into the future by using a hand-held echocardiography devices, with the ultimate aim of revolutionising access to screening services.
Several of the devices, known as v-scanners, were donated to the project by the Humpty Dumpty Foundation. They enable health workers to make a diagnosis that previously would have only been done by a specialist cardiologist.
East Timor currently has one cardiologist and one echocardiography machine in the national hospital for a population of 1.3 million people.
"The portability of this machine is extraordinary," Dr Francis said. "You can stick it in your pocket and head out to a remote community in the Northern Territory or somewhere in a district of Timor Leste without the problems that come with carrying big machinery."
For the first time, Aboriginal health workers from Arnhem Land in the Northern Territory will join the team in East Timor, after being trained in how to use the v-scanners.
Chelsea Ryan, 20, is a receptionist at an Arnhem Land health centre, but has been trained by cardiologists to use the device.
"I'm looking forward to it and I can't wait to come back and tell everyone what I've done in East Timor," Ms Ryan said. "I want to be a role model to the younger ones. I want to show them an example for the kids back at home."
The Arnhem Land community workers had been part of a pilot screening project during which 500 school children were screened and members of the community were trained in techniques for early detection of rheumatic heart disease.
"The v-scan is pretty useful... I'll be able to go out to the outstations and scan hearts, like many of the children," Ms Ryan said. "It'll help a lot of people, I want everyone in the community to get better, I don't want them to have heart problems."