What Matters to Aboriginal and Torres Strait Islander Youth (WM2Y): a study protocol to develop a national youth well-being measure.

Introduction: Adolescents face challenges associated with unprecedented environmental, social and technological changes. The impacts of colonisation, intergenerational trauma, racism and socioeconomic disadvantage intensify these challenges for many Aboriginal and Torres Strait Islander adolescents. However, Aboriginal and Torres Strait Islander adolescents also have cultural, spiritual, family and community capital that fosters their well-being.

Barriers and facilitators to adherence to Optimal Care Pathways for diagnosis and treatment of cancer for Aboriginal and Torres Strait Islander people.

Background: The Optimal Care Pathways (OCP) are a framework to promote high-quality and integrated cancer care for all Australians, from prevention through to end-of-life-care. Aboriginal and Torres Strait Islander people experience disproportionate cancer incidence and mortality, but little research has addressed whether cancer care for Aboriginal people meets the standards prescribed by the OCPs. This study aims to consider barriers and facilitators to quality cancer care for Aboriginal people.

Patient Information Resources on Cardiovascular Health After Cancer Treatment: An Audit of Australian Resources.

Purpose: Up to one third of patients with cancer are thought to experience adverse cardiovascular events after their cancer diagnosis and treatment. High-quality information about cancer treatment-related cardiovascular disease can prepare patients and reduce anxiety. The aim of this project was to systematically identify Australian online information resources about cardiovascular health after cancer and assess the readability, understandability, actionability, and cultural relevance for Aboriginal and Torres Strait Islander patients.

Under-screened Aboriginal and Torres Strait Islander women's perspectives on cervical screening.

Aboriginal and Torres Strait Islander women have lower participation in Australia's National Cervical Screening Program than other Australian women. Under-screened (including never screened) women's voices are rarely heard in research evidence, despite being a priority group for interventions to increase cervical screening participation. This study aimed to describe under-screened Aboriginal and Torres Strait Islander women's perspectives on cervical screening.

Dialysis attendance patterns and health care utilisation of Aboriginal patients attending dialysis services in urban, rural and remote locations.

Background: Aboriginal people in the Northern Territory (NT) suffer the heaviest burden of kidney failure in Australia with most living in remote areas at time of dialysis commencement. As there are few dialysis services in remote areas, many Aboriginal people are required to relocate often permanently, to access treatment. Missing dialysis treatments is not uncommon amongst Aboriginal patients but the relationship between location of dialysis service and dialysis attendance (and subsequent hospital use) has not been explored to date.

Aboriginal and Torres Strait Islander women's views of cervical screening by self-collection: a qualitative study.

Objective: This study aimed to describe Aboriginal and Torres Strait Islander women's views of self-collection introduced in the renewed National Cervical Screening Program.

Methods: A total of 79 Aboriginal and/or Torres Strait Islander women (50 screened in previous five years, 29 under-screened) from five clinics across three Australian states/territories participated. Topics discussed were perceptions of self-collection, the instruction card and suggestions for implementing self-collection.

The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research.

Indigenous and Tribal peoples account for approximately 6 [...

The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model.

Wellbeing is culturally bound and is shaped by many aspects of life, including experiences, beliefs and values. As such, in order to accurately measure wellbeing for a specific cultural group, it is necessary to understand the experiences, beliefs and values that influence the conception and experience of wellbeing of that group. This paper presents a conceptual model of wellbeing for Aboriginal and Torres Strait Islander people, which was developed from a large national qualitative study that explored the views of 359 Aboriginal and Torres Strait Islander adults.

Study protocol: : a qualitative study of factors influencing HPV vaccination among Aboriginal and Torres Strait Islander adolescents in Australia.

Introduction: Aboriginal and Torres Strait Islander women experience a higher burden of cervical cancer than non-Indigenous women in Australia. Cervical cancer is preventable partly through human papillomavirus (HPV) vaccination; in Australia, this is delivered through the national school-based immunisation programme. While HPV vaccination uptake is high among Australian adolescents, there remain gaps in uptake and completion among Aboriginal and Torres Strait Islander adolescents.

Communicating cancer and its treatment to Australian Aboriginal and Torres Strait Islander patients with cancer: a qualitative study.

Purpose: To investigate the successful strategies of health workers who support and regularly communicate with Aboriginal and Torres Strait Islander people about cancer and its treatment.

Methods: Semi-structured interviews were conducted face-to face or via telephone and audio-recorded with twenty-three health professionals (medical and radiation oncologists, oncology nurses and Aboriginal Health Workers), 5 identifying as Aboriginal or Torres Strait Islander in the Northern Territory and South Australia. When data saturation was reached, thematic analysis using a bottom up, essentialist/realist approach was used.

"We Have to Be Strong Ourselves": Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer.

Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer.

What Matters 2 Adults (WM2Adults): Understanding the Foundations of Aboriginal and Torres Strait Islander Wellbeing.

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of wellbeing for this population is critical in achieving health equity.

Do remote dialysis services really cost more? An economic analysis of hospital and dialysis modality costs associated with dialysis services in urban, rural and remote settings.

Background: Rates of end-stage kidney disease in Australia are highest in the Northern Territory (NT), with the burden of disease heaviest in remote areas. However, the high cost of delivering dialysis services in remote areas has resulted in centralisation, requiring many people to relocate for treatment. Patients argue that treatment closer to home improves health outcomes and reduces downstream healthcare use.

Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools.

Background: Measurement of patients' healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers.

Health care provider perspectives on cervical screening for Aboriginal and Torres Strait Islander women: a qualitative study.

Objective: To investigate perspectives of primary health care providers (HCPs) on providing cervical screening for Aboriginal and Torres Strait Islander women, who experience a higher burden of cervical cancer than other Australian women.

Methods: Semi-structured interviews with 13 HCPs from four Australian Indigenous primary health care centres (PHCCs). Transcripts were thematically analysed.

Are there systematic barriers to participation in cancer treatment trials by Aboriginal and Torres Strait Islander cancer patients in Australia?

Objective: To identify factors that may systematically reduce opportunities for Aboriginal and Torres Strait Islander Australians to participate in cancer clinical trials.

Methods: Analysis of online documents from the Australia and New Zealand Clinical Trials Registry for cancer treatment trials (Phase 3, 4 or Not Applicable) with at least one Australian site, registered in 2014-2018.

Results: Among 365 eligible trials, most (89%) had sites only in major cities/inner regional areas, but 39% of Aboriginal and Torres Strait Islander Australians live outside these areas.

What Matters 2 Adults: a study protocol to develop a new preference-based wellbeing measure with Aboriginal and Torres Strait Islander adults (WM2Adults).

Background: Understandings of health and wellbeing are culturally bound. Many Aboriginal and Torres Strait Islander people perceive wellbeing and quality of life (QOL) differently from the Western biomedical models of health underpinning existing QOL instruments. Any instrument to measure the wellbeing of Aboriginal and Torres Strait Islander people should be culturally appropriate and safe, include relevant dimensions, and be informed by their own values and preferences.

Indigenous Australian women's experiences of participation in cervical screening.

Aboriginal and Torres Strait Islander (collectively, Indigenous Australian) women experience a higher burden of cervical cancer than other women. The National Cervical Screening Program (NCSP) is failing to meet the needs of Indigenous Australian women, resulting in many women not regularly participating in cervical screening. However, one third of Indigenous Australian women do participate in cervical screening.

BMI, physical activity, and breast cancer subtype in white, black, and Sea Island breast cancer survivors.

Higher BMI, lower rates of physical activity (PA), and hormone receptor-negative breast cancer (BC) subtype are associated with poorer BC treatment outcomes. We evaluated the prevalence of high BMI, low PA level, and BC subtype among survivors with white/European American (EA) and African American (AA) ancestry, as well as a distinct subset of AAs with Sea Island/Gullah ancestry (SI). We used the South Carolina Central Cancer Registry to identify 137 (42 EAs, 66 AAs, and 29 SIs) women diagnosed with BC and who were within 6-21 months of diagnosis.

Psychosocial Aspects of Delivering Cancer Care to Indigenous People: An Overview.

Globally, a growing body of evidence has reported significant disparities in cancer outcomes between indigenous and nonindigenous people. Although some effort is being made to address these disparities, relatively little attention has been directed toward identifying and focusing on the psychosocial aspects of cancer care for indigenous patients, which are critical components in improving cancer care and outcomes. The purpose of this article is to describe the results of a scoping review of the psychosocial aspects of cancer care for indigenous people.

Performance of cardiovascular risk prediction equations in Indigenous Australians.

Objective: To assess the performance of cardiovascular disease (CVD) risk equations in Indigenous Australians.

Methods: We conducted an individual participant meta-analysis using longitudinal data of 3618 Indigenous Australians (55% women) aged 30-74 years without CVD from population-based cohorts of the Cardiovascular Risk in IndigenouS People(CRISP) consortium. Predicted risk was calculated using: 1991 and 2008 Framingham Heart Study (FHS), the Pooled Cohorts (PC), GloboRisk and the Central Australian Rural Practitioners Association (CARPA) modification of the FHS equation.

The patient co-payment and opportunity costs of accessing healthcare for Indigenous Australians with cancer: A whole of population data linkage study.

Aim: To quantify the direct out-of-pocket patient co-payments and time opportunity costs (length of hospital stay) incurred by Indigenous and non-Indigenous persons diagnosed with cancer during the first year postdiagnosis.

Methods: CancerCostMod was used, which is a model of cancer costs based upon a whole-of-population data linkage. The base population was a census of all persons diagnosed with cancer in Queensland, Australia between 1 July 2011 and 30 June 2012 (n = 25,553).

Aboriginal and Torres Strait Islander people's domains of wellbeing: A comprehensive literature review.

There are significant health and social disparities between the world's Indigenous and non-Indigenous people on factors likely to influence quality of life (QOL) and wellbeing. However, these disparities in wellbeing are not captured in conventional QOL instruments, as they often do not include dimensions that are likely to be relevant to Indigenous people. The objective of this comprehensive literature review was to identify these wellbeing domains for Aboriginal and Torres Strait Islander people in Australia (hereafter, respectfully referred to collectively as Indigenous Australians).