SAiNTSS South Australian and Northern Territory Stroke Study

Stroke in Aboriginal and Torres Strait Islander people; incidence, mortality and disease burden

Following a National Aboriginal and Torres Strait Islander Peoples Stroke Research Summit in March 2014, held at SAHMRI, led by Alex Brown, Tim Kleinig and Amanda Thrift, the SAiNTS Study was conceived. SAiNTSS will look more closely at stroke services for Aboriginal and Torres Strait Islander people, including asking Aboriginal and Torres Strait Islander people, their family and health workers about their experience.

Background:

A stroke occurs when an artery that provides blood to the brain becomes either blocked or it bleeds, which may cause parts of the brain to die or malfunction.

Two self-reported prevalence studies from 2003 and 2007-08 provide different estimates in the number of Australians who have had a stroke. The 2003 study included non-private dwelling and estimated around 346,700 people suffered a stroke, whereas the 2007-08 study (excluding non-private dwellings) reported 244,649 people living with stroke. 1

There is little information published about stroke in the Aboriginal and Torres Strait Islander population. Population-based studies (NEMESIS, SEARCH and ASCEND) to date have included few Aboriginal and/or Torres Strait Islander people. The most recent incidence study conducted for stroke was reported in 2013.2 Thrift and Hayman reported an almost doubling of stroke-related mortality rates for the Aboriginal population in 2007, noting that poor data quality possibly still underestimated the gap between Indigenous and non-Indigenous outcomes. 3

Evidence from the 2009 Acute Care National Stroke Audit showed the disparities continued; Aboriginal patients had more risk factors, were three times more likely to die or be dependent, had higher prevalence of intracerebral haemorrhage and were less likely to be treated on a stroke unit and receive allied health assessment. Calling for more research into difference in care for and outcomes of the Indigenous population. 4

A previous data linkage study from Western Australia5 provides the best Australian data on Indigenous stroke and mortality, however this study contains data that is more than 10 years old (1997-2002) and is therefore considerably outdated. It is thought that Indigenous age-adjusted stroke rates remain high. The proposed study will examine data from SA and NT for the last ten years (2004-2013) to obtain a more recent and better estimate for stroke incidence and mortality. SA and NT combined have 87,000 Indigenous Australians (2011 census data); the corresponding WA figure from 2006 was 59,000. Performing this study in SA and NT will give substantially more accurate data, as well as allow incidence estimations separately for intracerebral haemorrhage and ischaemic stroke. There is a suggstion6 that intracerebral haemorrhage may be disproportionately more common in Aboriginal and/or Torres Strait Islander people.

In 2008 the Council of Australian Governments (COAG) committed to ‘closing the gap in life expectancy within a generation (by 2031)’.7 This study will provide information and identify contributors to excess stroke risk and poor outcome, and hopefully contribute to closing the gap in life expectancy.

Outcomes:

This project aims to gain an understanding of factors identified by Aboriginal and Torres Strait Islander Peoples that contribute to better care. The culmination of this project will be the identification of areas of care and outcome that should be specifically addressed in a large study of incidence and outcome of stroke in Aboriginal and Torres Strait Islander people; ultimately informing an application to the National Health and Medical Research Council. The application will be developed with the involvment and consultation of Aboriginal and Torres Strait Islander Peoples to cover issues critical to the Aboriginal and Torres Strait Islander Peoples and therefore have relevance for addressing service gaps. Most importantly the information from this small study will be provided to the Aboriginal and Torres Strait Islander Peoples, recognising them as the owners of the information.

Significance/Contribution to the discipline:

Stroke is the leading cause of disability and the second biggest killer in Australia. The National Stroke Foundation report that an estimated 350,000 people in Australia live with the consequences of stroke and that it costs the Australian tax payers around $2.14 billion dollars a year. Even though stroke has been a National Health Priority area since 1996, there has never been funding provided on a national level for stroke.8

The burden of stroke disease for Aboriginal and Torres Strait Islander people is higher than that for the non-Aboriginal population. “Between 2002 and 2005, cardiovascular death rates in Indigenous Australians were 3 times as high as in non-Indigenous Australians”.9

This project is an investigator driven study, funded by a National Heart Foundation Vanguard award and Monash University grant. Principal Investigators include Alex Brown, Tim Kleinig and Amanda Thrift. SAiNTS study will be conducted in urban and regional settings in SA and the NT and aims to:

Understand the impact of stroke on Aboriginal and Torres Strait Islander people in South Australia and the Northern Territory, outlining barriers to care and identifying critical targets to influence health system enhancement and change that will ultimately result in best practice health care and improved health outcomes for Aboriginal and Torres Strait Islander people.

DurationVanguard Award and Monash grant – January – December 2015. Data will continue to be analyses over the next four years as part of the development of a NHMRC grant and a PhD component.

EthicsRelevant ethical approval will be sought for each part of the study and will be submitted to appropriate ethics committees including the appropriate Aboriginal Health Research Ethics Committee (AHREC).

Stakeholder Engagement
The investigators acknowledge the newly released South Australian Aboriginal Health Research Accord and will follow the direction outlined in the document “ensuring that research is done the right way” and acknowledge the support from Wardliparingga in making sure we get this right.

Study Design

There are four parts to the study

  • Data Linkage: to understand stroke risk in Aboriginal and Torres Strait Islander people as well as subsequent death and disability. Looking at the quality of identification and coding based stroke diagnosis in health databases, against ‘gold standard’ stroke ascertainment.
  • Alice Springs Hospital Look back: An in-depth look at the health case notes of people admitted to the Alice Springs Hospital with stroke, over a two year period.
  • Three-month prospective stroke incidence study: Looking at people admitted to some hospitals in SA and NT over a three-month period to see what tests are conducted and the risk factors and treatments.
  • Qualitative experience: targeted interviews of stroke survivors, their families and health workers, to understand their experiences, knowledge of stroke and barriers to care.

For further details please contact

Project Team

Vanguard Lead: Tim Kleinig timothy.kleinig@health.sa.gov.au

Monash Lead: Amanda Thrift amanda.thrift@monash.edu

PhD Candidate: Kendall Goldsmith kendall.goldsmith@health.sa.gov.au

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