A new Rheumatic Heart Disease Registry will provide important information to improve care for the mostly Māori and Pacific patients living with rheumatic heart disease (RHD), caused by rheumatic fever.
The project was unveiled recently as part of the Heart Foundation’s new funding announcement of $1.8 million for heart research and specialist training for cardiologists, bringing its total awarded since 1970 to almost $60 million.
Led by Associate Professor Nigel Wilson at Starship Hospital, the registry has received a $130,000 grant from the charity.
“RHD is the most common ‘acquired’ heart disease in young people in NZ, affecting them when they should be at the prime of their life, but instead they are dealing with a chronic heart disease of inequity,” says Wilson.
“In many ways New Zealand leads the world in understanding acute rheumatic fever but when it comes to the heart disease it is responsible for – which can lead to premature death, heart failure, heart surgery, strokes or heart valve infections – we have very little NZ data.
“We are looking for improvements for both the patients and health services, it’s back to the basics of can we get ourselves better organised?”
During the project’s first phase, researchers will establish the numbers of Kiwis living with RHD and how they are affected by it, gathering information from existing databases and hospital admissions. The second phase will determine the quality of RHD medical and surgical care and investigate any inequalities of care.
“There are inequalities because currently Māori and Pacific are the groups that are getting rheumatic fever and therefore severe RHD, we want to understand the extent of these and how we can minimise them. We don’t have hard data for RHD like we do for acute rheumatic fever.
“We also know that because a lot of people with RHD tend to be more socially disadvantaged they are more likely to fall through the cracks and not attend health clinics. That is our impression but again, we need better data.”
Qualitative studies are also part of the whole picture as Wilson says they are learning that families see their RHD in very different ways than health professionals do. He wants to get input into how health services can evolve to meet the needs of families and patients.
Heart Foundation Medical Director Gerry Devlin says the organisation is very pleased to support Associate Professor Wilson’s project.
“The establishment of this registry strongly aligns with our mission to stop New Zealander’s dying prematurely of heart disease and to provide help and support to Kiwis currently living with the disease,” says Devlin.
The charity’s 2017 funding round includes two Senior Fellowships, three Research Fellowships, three Overseas Training and Research Fellowships, two postgraduate scholarships, six project grants, one grant-in-aid, six small project grants, ten travel grants and five summer studentships awarded throughout New Zealand.
The registry project is also globally significant with The World Heart Organisation (WHO) recently recommending a resolution to make rheumatic heart disease a global priority, due to be adopted at the World Health Assembly in May 2018.