'How Your Spirit Is Travelling'-Understanding First Nations Peoples' Experiences of Living Well with and after Cancer.

As the number of people living with cancer increases, it is important to understand how people can live well with and after cancer. First Nations people diagnosed with cancer in Australia experience survival disparities relating to health service accessibility and a lack of understanding of cultural needs and lived experiences. This study aimed to amplify the voices of First Nations individuals impacted by cancer and advance the development of a culturally informed care pathway. Indigenist research methodology guided the relational and transformative approach of this study. Participants included varied cancer experts, including First Nations people living well with and after cancer, health professionals, researchers, and policy makers. Data were collected through online Yarning circles and analysed according to an inductive thematic approach. The experience of First Nations people living well with and after cancer is inextricably connected with family. The overall themes encompass hope, family, and culture and the four priority areas included the following: strength-based understanding of cancer, cancer information, access to healthcare and support, and holistic cancer services. Respect for culture is interwoven throughout. Models of survivorship care need to integrate family-centred cancer care to holistically support First Nations people throughout and beyond their cancer journey.

Integrating Cardio-Oncology Across the Research Pipeline, Policy, and Practice in Australia-An Australian Cardiovascular Alliance Perspective.

Over 18 million people worldwide were diagnosed with cancer in 2020, including over 150,000 people in Australia. Although improved early detection and treatment have increased the survival rates, cardiotoxic treatment and inadequate management of cardiovascular risk factors have resulted in cardiovascular disease (CVD) being one of the leading causes of non-cancer-related death and disability among cancer survivors. International guidelines outline the standards of care for CVD risk surveillance and management. However, Australian cardio-oncology policies and clinical guidelines are limited. There is increasing growth of cardio-oncology research in Australia and support from leading Australian professional bodies and advocacy and research networks, including the Cardiac Society of Australia and New Zealand, the Clinical Oncology Society of Australia, the National Heart Foundation of Australia, and the Australian Cardiovascular Alliance (ACvA). Thus, opportunities to drive multidisciplinary cardio-oncology initiatives are growing, including grant funding, position statements, and novel research to inform new policies. The ACvA has a unique flagship structure that spans the translational research pipeline from drug discovery to implementation science. This article aims to highlight how multidisciplinary cardio-oncology innovations could intersect with the seven ACvA flagships, and to showcase Australian achievements in cardio-oncology thus far. We summarise eight key priority areas for future cardio-oncology research that emerged. These strategies will strengthen cardio-oncology research and care in Australia, and drive new guidelines, policies, and government initiatives to ensure equity in health outcomes for all cardio-oncology patients.

"A Huge Gap": Health Care Provider Perspectives on Cancer Screening for Aboriginal and Torres Strait Islander People in the Northern Territory.

Cancer is one of the leading causes of death for Aboriginal and Torres Strait Islander people in the Northern Territory (NT). Accessible and culturally appropriate cancer screening programs are a vital component in reducing the burden of cancer. Primary health care plays a pivotal role in facilitating the uptake of cancer screening in the NT, due to the significant challenges caused by large distances, limited resources, and cultural differences. This paper analyses health care provider perspectives and approaches to the provision of cancer screening to Aboriginal people in the NT that were collected as part of a larger study. Semi-structured interviews were conducted with 50 staff from 15 health services, including 8 regional, remote, and very remote primary health care (PHC) clinics, 3 hospitals, a cancer centre, and 3 cancer support services. Transcripts were thematically analysed. Cancer screening by remote and very remote PHC clinics in the NT is variable, with some staff seeing cancer screening as a "huge gap", while others see it as lower priority compared to other conditions due to a lack of resourcing and the overwhelming burden of acute and chronic disease. Conversely, some clinics see screening as an area where they are performing well, with systematic screening, targeted programs, and high screening rates. There was a large variation in perceptions of the breast screening and cervical screening programs. However, participants universally reported that the bowel screening kit was complicated and not culturally appropriate for their Aboriginal patients, which led to low uptake. System-level improvements are required, including increased funding and resourcing for screening programs, and for PHC clinics in the NT. Being appropriately resourced would assist PHC clinics to incorporate a greater emphasis on cancer screening into adult health checks and would support PHCs to work with local communities to co-design targeted cancer screening programs and culturally relevant education activities. Addressing these issues are vital for NT PHC clinics to address the existing cancer screening gaps and achieving the Australian Government pledge to be the first nation in the world to eliminate cervical cancer as a public health problem by 2035. The implementation of the National Lung Cancer Screening Program in 2025 also presents an opportunity to deliver greater benefits to Aboriginal communities and reduce the cancer burden.

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. METHODS: Semi-structured interviews were conducted with 30 health professionals who deliver care to Aboriginal people with cancer in primary care and hospital settings in New South Wales, Australia. Health professionals included Aboriginal Health Workers, nurses, general practitioners, and community workers. Interviews were conducted in 2019-2020 and explored participant perspectives of barriers and facilitators of optimal cancer care, particularly related to prevention, early detection, diagnosis, and treatment for Aboriginal people. Data were qualitatively analysed using framework analysis. RESULTS: In general, participants perceived Aboriginal patients to have good access to preventive care. In terms of early detection and diagnosis, access to primary care, pathology, radiology, and some specialists (e.g. respiratory physicians) was seen as optimal. However, access to hospital-based gastroenterologists for colonoscopy was perceived to be poor due to long wait times. Access to optimal care for cancer treatment was perceived to be hindered due to the lack of bulk-billing for bowel cancer, breast cancer, and cardiothoracic surgery. Other barriers to care identified by participants included unclear referral pathways, poor communication between patient and the treating team, and a lack of timely provision of discharge summaries. CONCLUSIONS: Facilitators of optimal care during treatment and survivorship included: the Integrated Team Care and Close the Gap programs, and presence of key health workers to help patients navigate the health system. The major barriers to quality cancer care for Aboriginal people appeared to be to specialist and procedural access, demonstrating that the 'Inverse Care' law applied in reducing access for populations at higher risk of cancer.

Gynaecological cancer resources for Aboriginal and Torres Strait Islander women: A resource audit.

ISSUE ADDRESSED: Aboriginal and Torres Strait Islander women experience considerable disparities in gynaecological cancer outcomes. Accessible and culturally appropriate health promotion resources about gynaecological cancers may support health literacy in this area. This study aimed to determine the understandability, actionability, readability, and cultural relevance of gynaecological cancer health literacy resources for Aboriginal and Torres Strait Islander consumers, families, and caregivers. METHODS: We conducted a general Google search and targeted searches of Australian gynaecological cancer organisation websites in January and February 2022. Resources were assessed for understandability, actionability and cultural relevance to Aboriginal and Torres Strait Islander audiences. RESULTS: We found 16 resources. The resources were generally understandable, actionable, readable, and culturally relevant, however, most resources were focused on cervical cancer prevention through vaccination and screening. Few resources focused other gynaecological cancer types or aspects of the cancer care continuum. While many resources contained elements that made them culturally relevant, areas for improvement were identified. These included: greater transparency relating to the Aboriginal and Torres Strait Islander leadership, governance, and involvement in the development of the resources as well as availability of different resource formats with an emphasis on visual aids. CONCLUSIONS: This study highlighted a need for the development of resources relating to a wider range of gynaecological cancer types and different stages of the cancer care continuum for Aboriginal and Torres Strait Islander women. SO WHAT?: The development of a broader range of culturally appropriate gynaecological cancer health literacy resources, ideally developed through co-design with Aboriginal and Torres Strait Islander peoples, may contribute to addressing the disparities in gynaecological cancer outcomes for Aboriginal and Torres Strait Islander women.

A qualitative exploration of the non-financial costs of cancer care for Aboriginal and Torres Strait Islander Australians.

OBJECTIVE: Knowledge is growing about cancer care and financial costs for Aboriginal and Torres Strait Islander people. However, much remains unknown about the true costs of cancer care, encompassing financial, emotional, and spiritual aspects. We aimed to explore and explain how non-financial costs affect the health-seeking behaviours of these clients. METHODS: Following Indigenous research protocols, this research was led by Aboriginal and Torres Strait Islander researchers and guided by Indigenous Hospital Liaison Officers. In-depth interviews and focus groups were conducted with 29 participants (Aboriginal and Torres Strait Islander cancer clients, their carers, and cancer-care professionals) at two Queensland public hospitals. RESULTS: Four interwoven themes encompass non-financial costs of healthcare: leaving home and family; loss of control during cancer treatment; health of the spirit; social costs. The Aboriginal relational concept of 'being held' is useful in considering client, family, and carer as central to care with the Indigenous Hospital Liaison Officer two-way interpreting between the care and client team. IMPLICATIONS FOR PUBLIC HEALTH: Framing the reasons that clients and carers have difficulty in engaging in treatment as 'costs' enables a focus on how the health system itself is implicated in the disengagement of Aboriginal and Torres Strait Islander clients from treatment.

Natural History of Oral HPV Infection among Indigenous South Australians.

This study aims to describe the natural history of and identify the risk factors associated with oral human papillomavirus (HPV) infections in an Australian Indigenous cohort. A longitudinal cohort study design, with baseline (2018), 12-month, and 24-month data obtained from Indigenous Australians aged 18+ years in South Australia, was performed. Face-to-face interviews were conducted, and saliva samples for HPV testing were collected at each time point. Basic descriptive analyses were conducted to calculate prevalence, incidence, persistence, clearance, and incidence proportions of any HPV infection. Multivariable logistic regression analyses with adjusted prevalence ratios (PRs) were conducted to identify risk factors associated with oral HPV infection. Among 993 participants with valid saliva samples, 44 HPV types were identified. The prevalence of infection with any oral HPV infection was 51.3%, high-risk HPV was 11%, and types implicated in Heck's disease (HPV 13 or 32) was 37.4%. The incidence, persistence, and clearance of any and high-risk HPV infections were 30.7%, 11.8% and 33.3% vs. 9.3%, 2.8%, and 9%, respectively. Our findings indicate that the prevalence, incidence, and persistence of oral HPV infection in a large sample of Indigenous Australians were high, and clearance was low. Oral sex behaviours and recreational drug use were risk factors associated with incident high-risk HPV infection.

Development and validation of an HPV infection knowledge assessment scale among Aboriginal and Torres Strait Islander Peoples.

Background: An increased incidence of Human Papillomavirus (HPV) infection and its related cancers has been observed in recent years. Correct knowledge about HPV infection can lead to a significant decrease in transmission and a subsequent increase in vaccine uptake. Awareness and behavioural perception towards HPV infections are critical for improving HPV vaccination rates among Aboriginal and/or Torres Strait Islander Peoples. However, to the best of our knowledge, there has been no instrument designed to measure knowledge about HPV infection that is culturally appropriate and validated among Aboriginal and/or Torres Strait Islander People. Aim: To address this research gap, this paper aims to examine the psychometric properties of the HPV Knowledge Tool (HPV-KT) in an Indigenous population sample from South Australia. Methodology: Data from 747 Indigenous Australian Adults who participated in the 12-month follow-up of the HPV and Oropharyngeal Carcinoma in Indigenous Australians Study was utilised for this study. The psychometric properties examined included1) dimensionality and item redundancy; (2) network loadings; (3) model fit; (4) criterion validity; and (5) reliability. The network model was estimated using the Graphical Least Absolute Shrinkage and Selector Operator (GLASSO). Evaluation of the HPV-KT (10 items) dimensionality and item redundancy was conducted within the framework of Exploratory Graph Analysis (EGA). Reliability was evaluated with the McDonald's Omega (ω) coefficient. Results: After the exclusion of two items, the HPV-KT exhibited good psychometric properties for Aboriginal and/or Torres Strait Islander Peoples. The two dimensions of "General HPV Knowledge" and "Commonness of HPV" were identified. The dimension of "Commonness of HPV" displayed poor reliability, so a sum score for this subscale is not recommended (i.e. the items can still be used individually) The network model of the 7-item HPV-KT was fitted in the validation sample and model fit was adequate (x2 (7) = 17.17, p < 0.016; CFI = 0.980; TLI = 0.94; RMSEA = 0.063, 90% CI = 0.025-0.010). Furthermore, the reliability of the "General HPV Knowledge" subscale (ω = 0.76, 95% CI: 0.72-0.79), while the reliability of the "Commonness of HPV" subscale (ω = 0.58, 95% CI0.58-0.88) was poor. Conclusion: The HPV-KT was adapted for an Aboriginal and/or Torres Strait Islander population and is readily available for future use in Australia. The addition of items assessing specifications of HPV infection, natural history and behaviour will improve the reliability and usability to assess the level of accurate knowledge about HPV infection. Future studies should investigate the possibility of developing new items for the dimension 'Commonness of HPV'.

The Indigenous Australian Human Papillomavirus (HPV) Cohort Study 2, Continuation for 5 to 10 Years: Protocol for a Longitudinal Study.

BACKGROUND: Human papillomavirus (HPV) infection, a common sexually transmitted disease, is associated with cancers of the cervix, vulva, vagina, penis, anus, and head and neck. Oropharyngeal squamous cell carcinoma (OPSCC; throat cancer) is a type of cancer involving the head and neck area that is rapidly increasing across the globe. There are higher rates of OPSCC among Indigenous populations relative to non-Indigenous Australian populations, although the HPV-attributable fraction remains unknown. For the first time at a global level, we plan to extend an Indigenous Australian adult cohort to monitor, screen, and ultimately prevent HPV-associated OPSCC and to undertake extensive cost-effectiveness modelling around HPV vaccination. OBJECTIVE: This study aims to (1) extend follow-up to a minimum of 7 years post recruitment to describe the prevalence, incidence, clearance, and persistence of oral HPV infection; and (2) conduct clinical examinations of the head and neck, oral cavity, and oropharynx and collect saliva samples for early-stage OPSCC testing. METHODS: We will continue to implement a longitudinal design for the next study phase, where we will ascertain the prevalence, incidence, clearance, and persistence of oral HPV infection at 48, 60, and 72 months; undertake clinical examinations/saliva assessments to detect early-stage OPSCC; and refer for treatment. The primary outcome measures are changes in oral HPV infection status, biomarker measures of early HPV-related cancer, and clinical evidence of early-stage OPSCC. RESULTS: Participant 48-month follow-up will commence in January 2023. The first results are expected to be submitted for publication 1 year after 48-month follow-up begins. CONCLUSIONS: Our findings have potential to change the way in which OPSCC among Australian Indigenous adults is managed, with desired impacts including cost-savings on expensive cancer treatments; improved nutritional, social, and emotional outcomes; and improved quality of life for both Indigenous adults and the Indigenous community more broadly. Continuing a large, representative Indigenous adult cohort to track oral HPV infection and monitor early OPSCC is essential to yield critical information to include in the management armamentarium of health and well-being recommendations for Australia's First Nations. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/44593.

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. METHODS: We conducted systematic Google and website searches to identify potentially relevant resources. Eligibility was assessed using predefined criteria. For each eligible resource, we summarized the content and assessed readability, understandability, actionability, and cultural relevance for Aboriginal and Torres Strait Islander people. RESULTS: Seventeen online resources addressing cardiovascular health after cancer were identified: three focused solely on cardiovascular health and the remaining 14 dedicated between <1% and 48% of the word count to this topic. On average, three of 12 predefined content areas were covered by the resources. Only one resource was considered comprehensive, covering eight of 12 content areas. Overall, 18% of the resources were deemed readable for the average Australian adult, 41% deemed understandable, and only 24% had moderate actionability. None of the resources were considered culturally relevant for Aboriginal and Torres Strait Islander people, with 41% addressing only one of the seven possible criteria and the remainder addressing none of the criteria. CONCLUSION: This audit confirms a gap in online information resources about cardiovascular health after cancer. New resources, especially for Aboriginal and Torres Strait Islander people, are needed. The development of such resources must be done through involvement and collaboration with Aboriginal and Torres Strait Islander patients, families, and carers, through a codesign process.

Fear of Cancer Recurrence among Aboriginal and Torres Strait Islander Women Diagnosed with Breast Cancer.

Little is known about the fear of cancer recurrence (FCR) severity, coping strategies, or quality of life impacts for Indigenous populations. This mixed-methods study aimed to (1) quantify FCR levels among Indigenous Australian (i.e., Aboriginal and Torres Strait Islander) breast cancer survivors and (2) qualitatively explore experiences of FCR and the coping strategies used. Nineteen participants completed the Fear of Cancer Recurrence Inventory (FCRI); ten also completed a semi-structured interview. Interview transcripts were thematically analysed. Average FCR levels (Mean FCRI Total Score = 71.0, SD = 29.8) were higher than in previous studies of Australian breast cancer survivors, and 79% of participants reported sub-clinical or greater FCR (FCRI-Short Form ≥ 13/36). Qualitative themes revealed the pervasiveness of FCR, its impact on family, and exacerbation by experience/family history of comorbid health issues. Cultural identity, family, and a resilient mindset aided coping skills. Greater communication with healthcare providers about FCR and culturally safe and appropriate FCR care were desired. This study is the first to assess FCR among Aboriginal and Torres Strait Islander breast cancer survivors, extending the limited literature on FCR in Indigenous populations. Results suggest FCR is a significant issue in this population and will inform the development of culturally appropriate interventions to aid coping and improve quality of life.

Bridging cultures in palliative care: A qualitative study of the care of Indigenous Australians with advanced illness.

BACKGROUND: Lack of access, late engagement and limited referral for palliative care remain critical issues in supporting Indigenous Australians with life limiting illness. AIM: To explore the experiences and perspectives of Indigenous and non-Indigenous health professionals regarding the provision of palliative care for Indigenous people with advanced disease. DESIGN: Qualitative study involving semi-structured focus groups/interviews with analysis following an inductive thematic approach. SETTING/PARTICIPANTS: A purposive sample (n = 54) of medical, nursing, allied health and Indigenous Hospital Liaison Officers engaged in caring for Indigenous patients at a metropolitan teaching hospital in Australia. RESULTS: Four overarching themes were identified regarding provision of palliative care for Indigenous patients. These were (1) the intersection of cultures - Indigenous peoples, health and palliative care, (2) bridging the cultural divide: the integral role of Indigenous Hospital Liaison Officers, (3) health professionals devolve their responsibility to provide culturally appropriate care and (4) building towards a more holistic, culturally aware provision of palliative care. CONCLUSIONS: For many Indigenous people, the health system may be experienced as inflexible, narrowly focused and even prejudiced and traumatising. For Indigenous patients at the end of life, these challenges are heightened. The Indigenous Hospital Liaison Officers, working at the intersections of these two cultures, are key to negotiating such challenges as they seek opportunities to facilitate communication and understanding between firmly held cultural needs.

A Comprehensive Review of Optimal Approaches to Co-Design in Health with First Nations Australians.

BACKGROUND: Australia's social, structural, and political context, together with the continuing impact of colonisation, perpetuates health care and outcome disparities for First Nations Australians. A new approach led by First Nations Australians is required to address these disparities. Co-design is emerging as a valued method for First Nations Australian communities to drive change in health policy and practice to better meet their needs and priorities. However, it is critical that co-design processes and outcomes are culturally safe and effective. Aims: This project aimed to identify the current evidence around optimal approaches to co-design in health with First Nations Australians. METHODS: First Nations Australian co-led team conducted a comprehensive review to identify peer-reviewed and grey literature reporting the application of co-design in health-related areas by and with First Nations Australians. A First Nations Co-Design Working Group (FNCDWG) was established to guide this work and team.A Collaborative Yarning Methodology (CYM) was used to conduct a thematic analysis of the included literature. RESULTS: After full-text screening, 99 studies were included. Thematic analysis elicited the following six key themes, which included 28 practical sub-themes, relevant to co-design in health with First Nations Australians: First Nations Australians leadership; Culturally grounded approach; Respect; Benefit to First Nations communities; Inclusive partnerships; and Evidence-based decision making. CONCLUSION: The findings of this review provide a valuable snapshot of the existing evidence to be used as a starting point to guide appropriate and effective applications of co-design in health with First Nations Australians.

Indigenous Australians' Experiences of Cancer Care: A Narrative Literature Review.

To provide the latest evidence for future research and practice, this study critically reviewed Indigenous peoples' cancer care experiences in the Australian healthcare system from the patient's point of view. After searching PubMed, CINAHL and Scopus databases, twenty-three qualitative studies were included in this review. The inductive approach was used for analysing qualitative data on cancer care experience in primary, tertiary and transitional care between systems. Three main themes were found in healthcare services from Indigenous cancer care experiences: communication, cultural safety, and access to services. Communication was an important theme for all healthcare systems, including language and literacy, understanding of cancer care pathways and hospital environment, and lack of information. Cultural safety was related to trust in the system, privacy, and racism. Access to health services was the main concern in transitional care between healthcare systems. While some challenges will need long-term and collective efforts, such as institutional racism as a downstream effect of colonisation, cultural training for healthcare providers and increasing the volume of the Indigenous workforce, such as Indigenous Liaison Officers or Indigenous Care Coordinators, could effectively address this inequity issue for Indigenous people with cancer in Australia in a timely manner.

Factors associated with cancer survival disparities among Aboriginal and Torres Strait Islander peoples compared with other Australians: A systematic review.

Background: While cancer survival among Aboriginal and Torres Strait Islander peoples has improved over time, they continue to experience poorer cancer survival than other Australians. Key drivers of these disparities are not well understood. This systematic review aimed to summarise existing evidence on Aboriginal and Torres Strait Islander cancer survival disparities and identify influential factors and potential solutions. Methods: In accordance with PRISMA guidelines, multiple databases were systematically searched for English language peer-reviewed articles on cancer survival by Aboriginal and Torres Strait Islander status published from 1/1/2008 to 4/05/2022. Observational studies presenting adjusted survival measures in relation to potential causal factors for disparities were included. Articles were screened independently by two authors. Included studies were critically assessed using Joanna Briggs Institute tools. Results: Thirty population-based and predominantly state-level studies were included. A consistent pattern of poorer unadjusted cancer survival for Aboriginal and Torres Strait Islander peoples was evident. Studies varied widely in the covariates adjusted for including a combination of socio-demographics, cancer stage, comorbidities, and treatment. Potential contributions of these factors varied by cancer type. For lung and female breast cancer, adjusting for treatment and comorbidities reduced the survival disparity, which, while still elevated was no longer statistically significant. This pattern was also evident for cervical cancer after adjustment for stage and treatment. However, most studies for all cancers combined, or colorectal cancer, reported that unexplained survival disparities remained after adjusting for various combinations of covariates. Conclusions: While some of the poorer survival faced by Aboriginal and Torres Strait Islander cancer patients can be explained, substantial disparities likely to be related to Aboriginal determinants, remain. It is imperative that future research consider innovative study designs and strength-based approaches to better understand cancer survival for Aboriginal and Torres Strait Islander peoples and to inform evidence-based action.

Quantifying the number of deaths among Aboriginal and Torres Strait Islander cancer patients that could be avoided by removing survival inequalities, Australia 2005-2016.

BACKGROUND: While Aboriginal and Torres Strait Islander peoples have poorer cancer survival than other Australians, absolute measures of survival disparities are lacking. This study quantified crude probabilities of deaths from cancer and other causes and estimated the number of avoidable deaths for Aboriginal and Torres Strait Islanders if these survival disparities were removed. METHODS: Flexible parametric relative survival models were used to estimate reported measures for a population-based cohort of 709,239 Australians (12,830 Aboriginal and Torres Strait Islander peoples), 2005-2016. RESULTS: Among Aboriginal and Torres Strait Islander peoples, the 5-year crude probability of cancer death was 0.44, while it was 0.07 for other causes of death. These probabilities were 0.07 and 0.03 higher than among other Australians, respectively. Magnitude of these disparities varied by cancer type and ranged for cancer deaths from <0.05 for pancreatic, prostate and uterine cancers to 0.20 for cervical and head and neck cancers. Values for disparity in other causes of death were generally lower. Among an average cohort of Aboriginal and Torres Strait Islander peoples diagnosed per year over the most recent five-year diagnosis period (2012-2016, n = 1,269), approximately 133 deaths within 5 years of diagnosis were potentially avoidable if they had the same overall survival as other Australians, with 94 of these deaths due to cancer. The total number of avoided deaths over the entire study period (2005-2016) was 1,348, with 947 of these deaths due to cancer. CONCLUSIONS: Study findings suggest the need to reduce the prevalence of risk factors prevalence, increase screening participation, and improve early detection, diagnosis and treatment rates to achieve more equitable outcomes for a range of cancer types. Reported measures provide unique insights into the impact of a cancer diagnosis among Aboriginal and Torres Strait Islander peoples from a different perspective to standard relative survival measures.

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. Participants were 29 under-screened (women who had either never screened, had not screened in the previous five years or had recently screened in the past three months after more than five years) Aboriginal and Torres Strait Islander women from five communities across three states/territories. Female Aboriginal and Torres Strait Islander researchers Yarned with women about why they did not participate in screening and how to improve screening. Yarning is an Indigenous qualitative research method in which relationships and trust facilitate culturally safe conversation. Transcripts were analysed thematically. The proportion of eligible women who screened within 30 days after the Yarn was calculated. We identified four themes describing how the harms outweighed the benefits of cervical screening for under-screened women. These were: 1) distress, discomfort, and trauma; 2) lack of privacy and control; 3) complicated relationships with health care providers (HCPs); and 4) pressured, insensitive, and/or culturally unsafe communication from HCPs. Under-screened women who had recently screened had maintained privacy and control through self-collection and had experienced trauma-informed and empathetic care from their HCPs. While we cannot unequivocally attribute women's subsequent participation in screening to their involvement in this study, it is notable that one third of eligible under-screened women were screened within 30 days after the Yarn. Enhancing privacy, implementing trauma-informed approaches to care and sensitivity to the clinician-client relationship dynamics could enhance women's sense of comfort in, and control over, the screening procedure. The opportunity to Yarn about cervical screening and self-collection may address these issues and support progress toward cervical cancer elimination in Australia.

Investigating disparity in access to Australian clinical genetic health services for Aboriginal and Torres Strait Islander people.

Globally, there is a recognised need that all populations should be able to access the benefits of genomics and precision medicine. However, achieving this remains constrained by a paucity of data that quantifies access to clinical genomics, particularly amongst Indigenous populations. Using administrative data from clinical genetic health services across three Australian jurisdictions (states/territories), we investigate disparities in the scheduling and attendance of appointments among Aboriginal and/or Torres Strait Islander people, compared to non-Indigenous people. For 14,870 appointments scheduled between 2014-2018, adjusted Multivariate Poisson Regression models revealed that Aboriginal and/or Torres Strait Islander people were scheduled fewer appointments (IRR 0.73 [0.68-0.80], <0.001) and attended at lower rates (IRR 0.85 [0.78-0.93], <0.001). Within this population, adults, females, remote residents, and those presenting in relation to cancer or prenatal indications experienced the greatest disparity in access. These results provide important baseline data related to disparities in access to clinical genomics in Australia.

Quantifying Differences in Remaining Life Expectancy after Cancer Diagnosis, Aboriginal and Torres Strait Islanders, and Other Australians, 2005-2016.

BACKGROUND: This study quantified differences in remaining life expectancy (RLE) among Aboriginal and Torres Strait Islander and other Australian patients with cancer. We assessed how much of this disparity was due to differences in cancer and noncancer mortality and calculated the population gain in life years for Aboriginal and Torres Strait Islanders cancer diagnoses if the cancer survival disparities were removed. METHODS: Flexible parametric relative survival models were used to estimate RLE by Aboriginal and Torres Strait Islander status for a population-based cohort of 709,239 persons (12,830 Aboriginal and Torres Strait Islanders), 2005 to 2016. RESULTS: For all cancers combined, the average disparity in RLE was 8.0 years between Aboriginal and Torres Strait Islanders (12.0 years) and other Australians (20.0 years). The magnitude of this disparity varied by cancer type, being >10 years for cervical cancer versus <2 years for lung and pancreatic cancers. For all cancers combined, around 26% of this disparity was due to differences in cancer mortality and 74% due to noncancer mortality. Among 1,342 Aboriginal and Torres Strait Islanders diagnosed with cancer in 2015 an estimated 2,818 life years would be gained if cancer survival disparities were removed. CONCLUSIONS: A cancer diagnosis exacerbates the existing disparities in RLE among Aboriginal and Torres Strait Islanders. Addressing them will require consideration of both cancer-related factors and those contributing to noncancer mortality. IMPACT: Reported survival-based measures provided additional insights into the overall impact of cancer over a lifetime horizon among Aboriginal and Torres Strait Islander peoples.