Young, female and very ill: new research profiles our patients

Volunteer medical team member and cardiology registrar Dr Elizabeth Paratz (along with our honorary medical adviser Dr Noel Bayley) has just published some new research looking into prevalence and patterns of cardiac disease in our patients. Liz looked at almost 500 patients going back to 2003.

Here, she explains what she found, and what motivated her to do the research.

 

When I first travelled to Timor-Leste (East Timor), the variety and severity of heart disease we encountered in the clinics was overwhelming for an Australian-trained doctor. In the first morning, I listened to more murmurs of mitral stenosis (a heart valve that has become stiff in opening, usually from rheumatic fever) in three hours than I had encountered in my entire medical career.

Two things really struck me – firstly how young the patients were. The majority of my patients in Australian cardiology are 60 years old and over. We often call our 60 year olds on the ward 'young'. However, in Timor-Leste, the average life expectancy is only about 60.

The other thing that really struck me was how female the clinics were – the majority of our patients in Australian cardiac wards are male. However, in Timor-Leste we were constantly seeing young women – women my age – with severe heart disease, most commonly from rheumatic fever or holes in the heart that had never been repaired. This created lots more issues in their care as we had to plan around their need for pregnancy and childbirth in terms of medications and surgeries.

At the end of each day, we would debrief about the cases we had seen, and we agreed that this was a unique group of patients. We were keen to objectively put together data: were the types of heart disease and patients in East Timor really so different to Australia? Did they resemble other islands like Fiji more? Fortunately, East Timor Hearts Fund honorary medical adviser Dr Noel Bayley and the amazing administrators had been keeping detailed data since the first clinics in 2003, so we had 13 years of data and almost 500 unique patients to examine in our study.

Our data analysis confirmed lots of our anecdotal impressions from the clinics. The patients in the ETHF clinics are young – the typical age is 29 years old. There are many more females compared to Australian practice. And unfortunately, many of them present with very advanced heart disease. One fifth of all the patients seen in the ETHF clinic presented with heart disease so severe they either required immediate referral for surgery or palliative care. In such a young group of people, this is tragic.

Data collection in Timor-Leste has its own unique challenges. For example, our interpreters and clinic coordinators are invaluable in trying to get accurate demographic data from patients. Our very few elderly (over 60 years old) patients would often all insist they were 100 years old. It seems that as soon as you turn 61, you gain the right to call yourself 100! Our interpreters would carefully go through events in Timorese history with them, and fix their age to within about five years.

Our database includes data from Dili, and also several mobile outreach clinics that have been conducted in the districts of Timor-Leste. However, some parts of the country still remain extremely inaccessible due to destroyed roads and bridges etc. In these poorer, inaccessible areas, rates of heart disease may be even higher than what we found in our data collection.

We hope that publication of our research in a major Australian medical journal will help create awareness of the clear importance and severity of heart disease in East Timor. ETHF has also been involved in bigger prospective screening studies set to be published soon, which will also help add to our research knowledge. Ultimately, by publishing and education, we hope to reduce the number of East Timorese turning up to ETHF clinics with inoperable heart disease at very young ages.

 

Read the research abstract.

Read Liz's profile.

 

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