Evaluation of online text-based information resources of gynaecological cancer symptoms.

BACKGROUND: Gynaecological cancer symptoms are often vague and non-specific. Quality health information is central to timely cancer diagnosis and treatment. The aim of this study was to identify and evaluate the quality of online text-based patient information resources regarding gynaecological cancer symptoms. METHODS: A targeted website search and Google search were conducted to identify health information resources published by the Australian government and non-government health organisations. Resources were classified by topic (gynaecological health, gynaecological cancers, cancer, general health); assessed for reading level (Simple Measure of Gobbledygook, SMOG) and difficulty (Flesch Reading Ease, FRE); understandability and actionability (Patient Education Materials Assessment Tool, PEMAT, 0-100), whereby higher scores indicate better understandability/actionability. Seven criteria were used to assess cultural inclusivity specific for Aboriginal and Torres Strait Islander people; resources which met 3-5 items were deemed to be moderately inclusive and 6+ items as inclusive. RESULTS: A total of 109 resources were identified and 76% provided information on symptoms in the context of gynaecological cancers. The average readability was equivalent to a grade 10 reading level on the SMOG and classified as 'difficult to read' on the FRE. The mean PEMAT scores were 95% (range 58-100) for understandability and 13% (range 0-80) for actionability. Five resources were evaluated as being moderately culturally inclusive. No resource met all the benchmarks. CONCLUSIONS: This study highlights the inadequate quality of online resources available on pre-diagnosis gynaecological cancer symptom information. Resources should be revised in line with the recommended standards for readability, understandability and actionability and to meet the needs of a culturally diverse population.

Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.

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.

Can evidence drive health equity in the COVID-19 pandemic and beyond?

Using scoping review methods, we systematically searched multiple online databases for publications in the first year of the pandemic that proposed pragmatic population or health system-level solutions to health inequities. We found 77 publications with proposed solutions to pandemic-related health inequities. Most were commentaries, letters, or editorials from the USA, offering untested solutions, and no robust evidence on effectiveness. Some of the proposed solutions could unintentionally exacerbate health inequities. We call on health policymakers to co-create, co-design, and co-produce equity-focussed, evidence-based interventions with communities, focussing on those most at risk to protect the population as a whole. Epidemiologists collaborating with people from other relevant disciplines may provide methodological expertise for these processes. As epidemiologists, we must interrogate our own methods to avoid propagating any unscientific biases we may hold. Epidemiology must be used to address, and never exacerbate, health inequities-in the pandemic and beyond.

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.

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.

Quantifying the hospital and emergency department costs for women diagnosed with breast cancer in Queensland.

PURPOSE: With increasing rates of cancer survival due to advances in screening and treatment options, the costs of breast cancer diagnoses are attracting interest. However, limited research has explored the costs to the Australian healthcare system associated with breast cancer. We aimed to describe the cost to hospital funders for hospital episodes and emergency department (ED) presentations for Queensland women with breast cancer, and whether costs varied by demographic characteristics. METHODS: We used a linked administrative dataset, CancerCostMod, limited to all breast cancer diagnoses aged 18 years or over in Queensland between July 2011 and June 2015 (n = 13,285). Each record was linked to Queensland Health Admitted Patient Data Collection and Emergency Department Information Systems records between July 2011 and June 2018. The cost of hospital episodes and ED presentations were determined, with mean costs per patient modelled using generalised linear models with a gamma distribution and log link function. RESULTS: The total cost to the Queensland healthcare system from hospital episodes for female breast cancer was AUD$309 million and AUD$12.6 million for ED presentations during the first 3 years following diagnosis. High levels of costs and service use were identified in the first 6 months following diagnosis. Some significant differences in cost of hospital and ED episodes were identified based on demographic characteristics, with Indigenous women and those from lower socioeconomic backgrounds having higher costs. CONCLUSION: Hospitalisation costs for breast cancer in Queensland exert a high burden on the healthcare system. Costs are higher for women during the first 6 months from diagnosis and for Indigenous women, as well as those with underlying comorbidities and lower socioeconomic position.

Self-reported wellbeing and health-related quality of life of Aboriginal and Torres Strait Islander people pre and post the first wave of the COVID-19 2020 pandemic.

OBJECTIVE: Quantify change in wellbeing and health-related quality-of-life (HRQoL) in Aboriginal and Torres Strait Islander adults pre and post Australia's initial COVID-19 lockdown. METHODS: Aboriginal and Torres Strait Islander adults completed an online survey at Time 1 (October-November 2019; before the initial Australian COVID-19 outbreak) and Time 2 (August-September 2020; after the first Australian lockdown). We assessed wellbeing using a visual analogue scale (VAS) and HRQoL using the Assessment of Quality of Life (AQoL-4D) instrument. Participants who completed both surveys (n=42) were included to quantify change in outcomes over time and by comorbidity and demographic factors. RESULTS: Mean reduction in wellbeing over time was 6.4 points (95%CI -14.2 to 1.4) and was associated with age (18-54yo), financial instability and mental health comorbidity. Mean reduction in HRQoL over time was 0.06 (95%CI -0.12 to 0.01) and was associated with financial instability, high physical comorbidity level and mental health comorbidity. CONCLUSIONS: Aboriginal and Torres Strait Islanders aged 18-54yo, who were financially unstable or had elevated comorbidity during COVID lockdowns experienced greater reductions in wellbeing and HRQoL. IMPLICATIONS FOR PUBLIC HEALTH: As the COVID-19 pandemic continues in Australia, both urgent and forward planning is needed, especially for the priority groups identified.

Cancer care disparities among Australian and Aotearoa New Zealand Indigenous peoples.

PURPOSE OF REVIEW: Persistent and significant inequalities for Indigenous people with cancer around the globe exist, arising from colonial settlement of Indigenous land with profound social, economic and cultural impacts. We summarize recent publications concerning cancer disparities affecting Australian Aboriginal and Torres Strait Islander Peoples and Aotearoa New Zealand Maori Peoples. RECENT FINDINGS: Cancer-free survival and overall survival statistics testify to the urgent need to 'close the gap'. For Indigenous peoples in Australia and New Zealand, disparity persists along the cancer care pathway, from increased risk factors to lower screening access, health resource utilization and survivorship care. Recent publications highlight multimorbidity as contributing to poor cancer outcomes in Indigenous populations. The implementation of tailored Optimal Care Pathways is described, as is the validation of tailored tools capturing the perspectives of Indigenous persons. Finally, the importance of Indigenous-led research is emphasized. SUMMARY: Cancer-specific outcomes in Indigenous people of Australia and New Zealand remain poor with many widening disparities compared to non-indigenous populations. A growing body of epidemiological, health service and clinical research is documenting both the problems and potential solutions. Further work is needed in both broad health policies and the workforce, in building cultural competence to optimize individual care encounters.

"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. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers' needs: managing multiple responsibilities; maintaining the carer's own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

Wellbeing of Indigenous Peoples in Canada, Aotearoa (New Zealand) and the United States: A Systematic Review.

Despite the health improvements afforded to non-Indigenous peoples in Canada, Aotearoa (New Zealand) and the United States, the Indigenous peoples in these countries continue to endure disproportionately high rates of mortality and morbidity. Indigenous peoples' concepts and understanding of health and wellbeing are holistic; however, due to their diverse social, political, cultural, environmental and economic contexts within and across countries, wellbeing is not experienced uniformly across all Indigenous populations. We aim to identify aspects of wellbeing important to the Indigenous people in Canada, Aotearoa and the United States. We searched CINAHL, Embase, PsycINFO and PubMed databases for papers that included key Indigenous and wellbeing search terms from database inception to April 2020. Papers that included a focus on Indigenous adults residing in Canada, Aotearoa and the United States, and that included empirical qualitative data that described at least one aspect of wellbeing were eligible. Data were analysed using the stages of thematic development recommended by Thomas and Harden for thematic synthesis of qualitative research. Our search resulted in 2669 papers being screened for eligibility. Following full-text screening, 100 papers were deemed eligible for inclusion (Aotearoa (New Zealand) n = 16, Canada n = 43, United States n = 41). Themes varied across countries; however, identity, connection, balance and self-determination were common aspects of wellbeing. Having this broader understanding of wellbeing across these cultures can inform decisions made about public health actions and resources.

A Systematic Review of Fear of Cancer Recurrence Among Indigenous and Minority Peoples.

While cancer survivors commonly experience fear and anxiety, a substantial minority experience an enduring and debilitating fear that their cancer will return; a condition commonly referred to as fear of cancer recurrence (FCR). Despite recent advances in this area, little is known about FCR among people from Indigenous or other ethnic and racial minority populations. Given the high prevalence and poor outcomes of cancer among people from these populations, a robust understanding of FCR among people from these groups is critical. The current review identified and aggregated existing literature on FCR amongst adult cancer survivors from Indigenous and minority populations. The protocol of this review was registered with PROSPERO in July 2020 (Registration number: CRD42020161655). A systematic search of bibliographic databases was conducted for relevant articles published from 1997 to November 2019. Data from eligible articles were extracted and appraised for quality by two independent reviewers. Nineteen articles from four countries (United States of America, Canada, Australia and the United Kingdom) met the inclusion criteria, including 14 quantitative, 4 qualitative and 1 mixed-methods study. Only one article reported on an Indigenous population. Few studies reported on FCR prevalence (n = 3) or severity (n = 9). While the variation in tools used to measure FCR hindered a robust estimate of severity, results suggested some differences in FCR severity between minority and dominant populations, although these may have been due to study metholodological differences. Few factors were reported as being associated with FCR in minorities across multiple studies. The qualitative synthesis found five themes associated with the lived experience of FCR: (i) variations in the lived experience of FCR; (ii) spirituality and worldview impacting on FCR; (iii) the importance of staying positive; (iv) complexities around support; and (v) increasing cancer knowledge. The findings of this review highlight differences in FCR across cultures and contexts, which reinforces the need for culturally-specific approaches to this condition. The dearth of research in this area is of concern given the significant burden of cancer in these populations. A deeper understanding of this condition among Indigenous and minority populations is critical to developing and delivering appropriate and effective psychosocial care for cancer survivors from these groups. Systematic Review Registration: identifier [CRD42020161655].

Investigating inequities in cardiovascular care and outcomes for Queensland Aboriginal and Torres Strait Islander people: protocol for a hospital-based retrospective cohort data linkage project.

INTRODUCTION: Cardiovascular disease (CVD) represents a significant burden of disease for Aboriginal and Torres Strait Islander people, a population that continues to experience a lower life expectancy than other Australians. The aim of the Better Cardiac Care Data Linkage project is to describe patient care pathways and to identify disparities in care and health outcomes between Aboriginal and Torres Strait Islander people and other Queensland residents diagnosed with CVD in the state of Queensland. METHODS: This is a population-based retrospective cohort study using linked regional, state and national health and administrative data collections to describe disparities in CVD healthcare in primary and secondary prevention settings and during hospitalisation. The CVD cohort will be identified from the Queensland Hospital Admitted Patient Data Collection for admissions that occurred between 1 July 2010 and 31 June 2016 and will include relevant International Classification of Disease codes for ischaemic heart disease, congestive heart failure, stroke, acute rheumatic fever and rheumatic heart disease. Person-level data will be linked by Data Linkage Queensland and the Australian Institute of Health and Welfare (AIHW) in accordance with ethical and public health approvals to describe the patient journey prior to, during and post the hospital admission. ANALYSIS: This project will focus largely on descriptive epidemiological measures and multivariate analysis of clinical care standards and outcomes for Aboriginal and Torres Strait Islander people compared with other Queenslanders, including identification of risk factors for suboptimal care and change over time. Variation in care pathways and patient outcomes will be compared by Indigenous status, sex, age group, remoteness of residence, year of index hospitalisation and socioeconomic status. Cox models for time-to-event data and mixed models or generalised estimating equations for longitudinal data will be used to measure change over time where temporal effects exist. ETHICS AND DISSEMINATION: Ethical approval has been granted by Human Research Ethics Committees of the Prince Charles Hospital (HREC/15/QPCH/289) and the AIHW (EO2016-1-233). The Northern Territory Department of Health and Menzies School of Health Research have also provided reciprocal ethical approval of the project (HREC 2019-3490). The deidentified results will be summarised in a report and shared with investigators, advisory groups, Queensland Health and key stakeholders. Findings will be disseminated through workshops, conferences and will be published in peer-reviewed journals.

Accessibility of cancer treatment services for Indigenous Australians in the Northern Territory: perspectives of patients and care providers.

BACKGROUND: Poorer cancer outcomes of Indigenous Australians in Australia's Northern Territory (NT) compared with their non-Indigenous counterparts are partially due to diminished access to cancer treatment services (CTS). Accessibility of health care is a multidimensional construct, including physical, logistical, psychosocial and cultural dimensions. While previous research has identified specific areas of reduced access to CTS for Indigenous Australians, the higher burden of cancer borne by Indigenous Australians warrants a more comprehensive understanding of access to CTS in the NT. The purpose of this study was to explore and map the accessibility of CTS for Indigenous Australians in the NT and to identify key access barriers. METHODS: This predominantly qualitative study, complemented by a descriptive quantitative component, explored and mapped the accessibility of one CTS (CTS-NT) that services a large number of Indigenous Australians in the NT. Patient perspectives were obtained via secondary analysis of data from 75 face-to-face interviews with Indigenous Australian adults attending the CTS-NT. Care provider perspectives were obtained via primary analysis of data from 29 face-to-face interviews with care providers and staff working at CTS-NT. Data were analysed to identify issues of accessibility informed by Leveque and colleagues' conceptual framework of access to health care, which comprises five dimensions of accessibility of the health service and the ability of Indigenous patients to interact with these dimensions to generate access. Applied thematic analysis was conducted on the qualitative data and descriptive analysis was conducted on the quantitative data. RESULTS: The analysis of the patient and care provider reports identified multiple access barriers across all dimensions including: inadequate preparation of Indigenous patients for treatment; delayed and complicated commencement of treatment; dislocation from home; competing priorities; scarcity of Indigenous care providers and staff; lack of culturally-relevant care; challenges associated with language, accommodation, transport and finance; and disjointed and fraught relationships with care providers. These barriers posed significant challenges to Indigenous patients maintaining their engagement with treatment. CONCLUSIONS: This study provides a valuable snapshot of the barriers facing this population across the dimensions of health care access. Urgent action in addressing these issues is required at individual, service and state levels.

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 [...].

Quality of Life in the First Year of Cancer Diagnosis among Aboriginal and Non-Aboriginal People Living in Regional and Remote Areas of Australia.

Little is known of the quality of life (QoL) of cancer patients in the Northern Territory (NT) of Australia, where healthcare delivery is geographically challenged. This exploratory study describes QoL among Aboriginal and non-Aboriginal cancer patients in the NT, in the first year of diagnosis. Participants were recruited from the only cancer care centre in the NT and completed the Assessment of Quality-of-Life questionnaire (AQoL-4D). The results were descriptively analysed. The participants' (n = 63; mean age 58.8 years) mean AQoL utility score was 0.72 (SD 0.26); patients scored lowest in the relationships and mental health dimensions of the questionnaire (mean 0.89, SD 0.19, and 0.89, SD 0.17, respectively). Participants living in remote and very remote areas (46%) reported higher QoL scores, compared with participants in the outer regional capital city of the NT in the overall (mean 0.76, SD 0.22 and 0.78, SD 0.20 vs. 0.67, SD 0.29, respectively), and mental health dimensions (mean 0.92, SD 0.09 and mean 0.94, SD 0.06 vs. 0.85, SD 0.22, respectively). The findings were suggestive of clinically meaningful differences across socioeconomic groups, cancer and treatment types, and comorbidity status. Mean QoL scores were consistent with previous reports in other Australian cancer cohorts. The findings suggest a need to support cancer patients' mental health and relationships during the diagnosis and treatment phase of their cancer journey.

The utilization of allied and community health services by cancer patients living in regional and remote geographical areas in Australia.

INTRODUCTION: Cancer patients in Australia's Northern Territory (NT) face unique challenges to accessing cancer-related community and allied health services (referred here as 'health services'). This is in part due to the NT's unique geographic, socioeconomic and demographic profile. This paper describes the use of health services by cancer patients in the NT. METHODS: Adult cancer patients attending appointments at a cancer centre in Darwin, NT and who were diagnosed within the past five years were invited to participate in face-to-face interviews about their use of allied and community health services. A descriptive analysis of health services utilization was conducted. RESULTS: Of the 76 participants interviewed, 63% identified as non-Indigenous, 53% female and 45% lived in very remote areas. Mean age at interview was 58.7 years (SD 13.2). Overall, 82% of participants utilized at least one health service since their cancer diagnosis. All Indigenous participants used at least one service, while 28% of non-Indigenous participants did not use any health service. The services most frequently used by participants were community services (42%) and information sources (40%). CONCLUSION: The findings from this study suggest there is variation in the type of community and allied health services used by NT cancer patients across clinical and demographic groups (including Indigenous status). Further qualitative enquiry is needed to better understand this variation, which may reflect differences in service preference, accessibility, health literacy of patients or patient engagement. Such knowledge may inform service delivery improvements to better support cancer patients through their cancer care pathway.

Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World.

PURPOSE: Worldwide, Indigenous people often have disproportionally worse health and lower life expectancy than their non-Indigenous counterparts. Despite the impact of cancer on life expectancy, little is known about the burden of cancer for Indigenous people primarily because of the paucity of data. We investigated the collection and reporting of Indigenous status information among a global sample of population-based cancer registries (PBCRs). PARTICIPANTS AND METHODS: An online survey was e-mailed to eligible registries using set inclusion criteria. Respondents were asked questions on the collection, reporting, and quality assessment of Indigenous status in their registers. RESULTS: Eighty-three PBCRs from 25 countries were included. Of these, 66% reported that their registry collected Indigenous status data, although the quality of this variable had been assessed in less than half in terms of completeness (38%) and accuracy (47%). Two thirds of PBCRs who collected Indigenous status data (67%), from nine of 25 countries responded that cancer statistics for Indigenous people were reported using registry data. Key barriers to the collection of Indigenous status information included the lack of data collection at the point of care (79%), lack of transfer of Indigenous status to the cancer registry (46%), inadequate information systems (43%), and legislative limitations (32%). Important variations existed among world regions, although the lack of Indigenous status data collection at the point of care was commonly reported across all regions. CONCLUSION: High-quality data collection is lacking for Indigenous peoples in many countries. To ensure the design and implementation of cancer control activities required to reduce disparities for Indigenous populations, health information systems, including cancer registries, need to be strengthened, and this must be done in dialogue with Indigenous leaders.