A pair of researchers are calling for a national register for rheumatic heart disease, saying such a register will improve treatment of Aboriginal and Torres Strait Islander people.
First Nations people accounted for 95% of acute rheumatic fever (ARF) cases in Australia from 2015-2019. Cases rose by 20% from 2017-2021.
ARF is caused by the immune response to a bacterial infection: A streptococcus. It is simple to treat if done promptly, but left untreated, it can progress to rheumatic heart disease (RHD), a serious chronic condition. Nearly a quarter of people with RHD have heart failure, stroke, or need surgery within 8 years of diagnosis.
A review published in the Journal of Transcultural Nursing by two Flinders University researchers has highlighted key problems with management of ARF and RHD in Australia.
The researchers have analysed published studies on ARF and RHD and drawn out six key themes.
“One of the main themes was the importance of streamlining databases and recall systems, leading to better efficiency,” the researchers write.
“This in turn means that patients can spend more time with their clinicians, receive more education, build the patient–clinician relationship, and thus increase the use of secondary prophylaxis.”
A national register would, according to the researchers, allow for more up-to-date information and help continuity care for patients who move across regions. This would, in turn, build patient trust in the system.
Other issues outlined by the researchers include: patient characteristics and family support, service delivery, the pain of injection for antibiotics, lack of education among both patients and healthcare providers, and patient-clinician relationships.
“Steps to improve continuity of care for patients would be helpful in building trust. This means reducing current high staff turnover rates so that a patient-clinician relationship can be better developed,” write the researchers.
“There is also the need for flexibility in offering community-based or home-based prophylactic administration. It is also highlighted in the literature that better management of pain of injection is needed.
“Finally, emphasis must be made within undergraduate and graduate education, and for continuing professional development, on the importance of culturally appropriate and linguistically aligned care to First Nations communities.”
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Originally published by Cosmos as A national register may help rheumatic heart disease
Ellen Phiddian
Ellen Phiddian is a science journalist at Cosmos. She has a BSc (Honours) in chemistry and science communication, and an MSc in science communication, both from the Australian National University.
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