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Background: Indigenous peoples worldwide experience inequitable cancer outcomes, and it is unclear if this is underpinned by differences in or inadequate use of endocrine treatment (ET), often used in conjunction with other cancer treatments. Previous studies examining ET use in Indigenous peoples have predominately focused on the sub-national level, often resulting in small sample sizes with limited statistical power. This systematic review aimed to collate the findings ofarticles on ET utilisation for Indigenous cancer patients and describe relevant factors that may influence ET use., Methods: We conducted a systematic review and meta-analysis of studies reporting ET use for cancer among Indigenous populations worldwide. PubMed, Scopus, CINAHL, Web of Science, and Embase were searched for relevant articles. A random-effect meta-analysis was used to pool proportions of ET use. We also performed a subgroup analysis (such as with sample sizes) and a meta-regression to explore the potential sources of heterogeneity. A socio-ecological model was used to present relevant factors that could impact ET use., Results: Thirteen articles reported ET utilisation among Indigenous populations, yielding a pooled estimate of 67% (95% CI:54 - 80), which is comparable to that of Indigenous populations 67% (95% CI: 53 - 81). However, among studies with sufficiently sized study sample/cohorts (≥ 500), Indigenous populations had a 14% (62%; 95% CI:43 - 82) lower ET utilisation than non-Indigenous populations (76%; 95% CI: 60 - 92). The ET rate in Indigenous peoples of the USA (e.g., American Indian) and New Zealand (e.g., Māori) was 72% (95% CI:56-88) and 60% (95% CI:49-71), respectively. Compared to non-Indigenous populations, a higher proportion of Indigenous populations were diagnosed with advanced cancer, at younger age, had limited access to health services, lower socio-economic status, and a higher prevalence of comorbidities., Conclusions: Indigenous cancer patients have lower ET utilisation than non-Indigenous cancer patients, despite the higher rate of advanced cancer at diagnosis. While reasons for these disparities are unclear, they are likely reflecting, at least to some degree, inequitable access to cancer treatment services. Strengthening the provision of and access to culturally appropriate cancer care and treatment services may enhance ET utilisation in Indigenous population. This study protocol was registered on Prospero (CRD42023403562)., (© 2024. The Author(s).)

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.

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.

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., Competing Interests: Conflicts of interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Gail Garvey reports financial support was provided by National Health and Medical Research Council (NHMRC). Lorraine Bell reports financial support was provided by National Health and Medical Research Council (NHMRC). Brian Arley reports financial support was provided by National Health and Medical Research Council (NHMRC). Lorraine Bell reports was provided by Australian Research Council., (Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.)

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.

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.

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., Competing Interests: The authors have declared that no competing interests exist.

Objective: To identify points for improvements within the health system where Aboriginal and Torres Strait Islander cancer patients may experience a lack of continuity in their cancer care. The optimal care pathway for Aboriginal and Torres Strait Islander people with cancer (OCP) framework was utilised as a tool in this work., Methods: Semi-structured interviews were conducted with health professionals at the primary health care (PHC) and hospital setting. Data were categorised into six steps using the OCP framework., Results: This study identified multiple time-points in the cancer pathways that could be strengthened to increase the continuity of cancer care for these patients. In addition, the provision of person-centred care and adequate education tailored to patients' and health professionals' needs can help minimise the likelihood of patients experiencing a lack of continuity in their cancer care. Participants were recruited from an urban hospital (n = 9) and from six Aboriginal Community Controlled Health Services (n = 17) across geographical locations in Queensland. The provision of culturally competent care, effective communication, coordination and collaboration between services along the cancer pathway from prevention and early diagnosis through to end-of-life care were highlighted as important to enhance care continuity for Indigenous Australians., Conclusion: The implementation of recommendations outlined in the OCP framework may help with improving cancer care continuity for Indigenous patients with cancer., Summary: Aboriginal and Torres Strait Islander people can sometimes find cancer care pathways complex and difficult to navigate. This study identified points in the cancer pathways that could be strengthened to increase the continuity of cancer care for these patients which could potentially lead to improved outcomes., (© 2021 Australian Health Promotion Association.)

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., (©2022 American Association for Cancer Research.)

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.

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 Māori 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., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

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.

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., Methods: A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified., Results: No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics 'partially' captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable., Conclusions: Existing tools are likely to miss key aspects of Indigenous peoples' experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.

Background: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs., Purpose: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life., Method: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted., Results: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%)., Conclusions: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.

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. Seven cancer types accounted for 58% of cancers among Aboriginal and Torres Strait Islander people, but only 46% of trials addressed these cancers. Most trials specified exclusions relating to comorbidities/health status. A substantial minority of trials (38%) explicitly referred to investigator opinion/judgment as a relevant determinant of patient eligibility., Conclusion: Aboriginal and Torres Strait Islander patients appear to have a reduced opportunity to participate in trials because of where they live, their type of cancer and their general health status, as well as for less transparent reasons relating to investigator judgment. Implications for public health: Greater transparency and greater scrutiny of barriers to trial participation for Aboriginal and Torres Strait Islander Australians are needed to ensure equitable access., (© 2020 The Authors.)

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.

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. We highlight considerations in undertaking research in this field with indigenous people and the implications for clinical practice.

Purpose: In Canada, indigenous peoples' cancer rates have increased, but cancer screening rates tend to be lower. When coupled with poor cancer prognosis, treatment barriers, and inaccessible health care, indigenous patients with cancer experience many unmet needs. Further complicating their journey is a multijurisdictional system that complicates cancer control services, treatments, patient supports, and cancer surveillance. To address these issues, the Canadian Indigenous Research Network Against Cancer (CIRNAC) was developed. This article describes the forerunners and consultative process that created the network and the consensus model developed to ground this network with, by, and for indigenous peoples., Methods: A consultative workshop was held to (1) establish and increase network membership, (2) enhance partnerships with indigenous communities and other researchers, and (3) develop an indigenous-led research program, new funding, and related initiatives., Results: Participants viewed the CIRNAC as a reflective parallel network led by indigenous peoples that would identify research priorities within Canada, assess how these priorities align with indigenous patients' cancer care and research needs, and cross-check to see if these priorities align with each other. The network would also advocate for indigenous elders/knowledge holders and community grassroot processes to drive research and training, thus demonstrating the power of the community voice and lived experience in research. In addition, the network would foster research partnerships to investigate alternative indigenous models for cancer prevention, care, treatment, and support., Conclusion: The CIRNAC evolved as a viable vehicle to address cancer with, for, and by indigenous peoples. The network is guided by a preamble, a set of aims, and an inclusion engagement circle model. It is evolving through major world initiatives, with the aim of formally becoming an internationally linked national network.

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.

Purpose: The role of general practitioners in cancer care has expanded in recent years. However, little is known about utilization of primary health care (PHC) services by patients with cancer, particularly among socio-economically disadvantaged groups. We describe utilization of PHC services by patients with cancer, and the nature of the care provided. The study focuses on a disadvantaged group in Australia, namely Indigenous Australians., Methods: A retrospective audit of clinical records in ten PHC services in Queensland, Australia. Demographic and clinical data of Indigenous Australians diagnosed with cancer during 2010-2016 were abstracted from patient's medical records at the PHC services. The rates of cancer-related visits were calculated using person years at risk as a denominator., Results: A total of 138 patients' records were audited. During 12 months following the cancer diagnosis, patients visited the PHC service on average 5.95 times per year. Frequency of visits were relatively high in remote areas and among socioeconomic disadvantaged patients (IRR = 1.87, 95%CI 1.61-2.17; IRR = 1.79, 95%CI 1.45-2.21, respectively). Over 80% of visits were for seeking attention for symptoms, wound care, and emotional or social support. Patients who did not undergo surgery, had greater comorbidity, received chemotherapy and/or radiotherapy, and male gender had significantly greater rate of visits than their counterparts., Conclusion: The frequency of utilization of PHC services, especially by patients with comorbidities, and the range of reasons for attendance highlights the important role of PHC services in providing cancer care. The reliance on PHC services, particularly by patients in remote and disadvantaged communities, has important implications for appropriate resourcing and support for services in these locations.

Background: Cancer care involves many different healthcare providers. Delayed or inaccurate communication between specialists and general practitioners (GP) may negatively affect care., Aim: To describe the pattern and variation of communication between primary healthcare (PHC) services and hospitals and specialists in relation to the patient's cancer care., Methods: A retrospective audit of clinical records of Indigenous Australians diagnosed with cancer during 2010-2016 identified through 10 PHC services in Queensland is described. Poisson regression was used to model the dichotomous outcome availability of hospital discharge summary versus not., Results: A total of 138 patient records was audited; 115 of those patients visited the PHC service for cancer-related care after cancer diagnosis; 40.0% visited the service before a discharge summary was available, and 36.5% of the patients had no discharge summary in their medical notes. While most discharge summaries noted important information about the patient's cancer, 42.4% lacked details regarding the discharge medications regimen., Conclusions: Deficits in communication and information transfer between specialists and GP may adversely affect patient care. Indigenous Australians are a relatively disadvantaged group that experience poor health outcomes and relatively poor access to care. The low proportion of discharge summaries noting discharge medication regimen is of concern among Indigenous Australians with cancer who have high comorbidity burden and low health literacy. Our findings provide an insight into some of the factors associated with quality of cancer care, and may provide guidance for focus areas for further research and improvement efforts., (© 2019 Royal Australasian College of Physicians.)

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). Individual records were linked to corresponding Queensland Health Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule, and Pharmaceutical Benefits Scheme records between 1 July 2011 and 30 June 2015. Queensland data were weighted to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians)., Results: After adjusting for age, sex, rurality, area-based deprivation, and cancer group, Indigenous Australians accrued significantly less in postdiagnosis patient co-payments at 0-6 months (61% less) and 7-12 months (63% less). Indigenous Australians also had significantly fewer postdiagnosis hospitalizations at 0-6 months (21% fewer) and 7-12 months (27% fewer)., Conclusion: There is growing concern regarding the financial burden of cancer to the patient. The time spent away from family and their community may also have an important time opportunity cost, which may affect a person's decision to undertake or continue treatment. This is the first study in Australia to identify the financial cost of co-payments for Indigenous people with cancer, as well as the number and length of hospitalizations as drivers of time opportunity costs., (© 2019 John Wiley & Sons Australia, Ltd.)

Background: Traditional and complementary medicines (T&CM) are any form of medicine, practice, treatment, product, technology, knowledge system or ceremony outside of conventional medical practice that aims to prevent and/or treat illness and/or promote well-being. Alongside conventional cancer treatments, T&CM usage is increasing; with 19% of indigenous Australians with cancer reporting using T&CM. There is limited evidence surrounding T&CM use and disclosure by indigenous patients. Our aim was to explore healthcare providers' views about usage, disclosure/non-disclosure of T&CM by Indigenous cancer patients., Methods: Semi-structured, in-depth interviews with 18 healthcare providers, including three indigenous providers, at a large urban hospital providing care to Indigenous cancer patients were conducted to explore providers' experiences and attitudes towards T&CM use by Indigenous cancer patients. An interpretive phenomenological approach was used to thematically analyse the data., Results: Analysis revealed six themes: concern about risk; no 'real' benefits; perception of T&CM and conventional medicine as antithetical; barriers to disclosure; 'patients' choice' a double-edged sword; and providers' lack of knowledge about T&CM. Healthcare providers perceived discord between T&CM and conventional medicine. Most lacked knowledge of T&CM, and had concerns around negative-interactions with conventional treatments. They considered T&CM outside their role, citing this as reasoning for their lack of knowledge. Indigenous healthcare providers had greater understanding and openness towards T&CM., Conclusions: Given the potential usage of T&CM by Indigenous cancer patients, providers need a more comprehensive understanding of T&CM in order to inform discussion and facilitate effective disclosure on this topic. If indigenous Australians with cancer feel that cancer care providers are unreceptive to discussing T&CM, patient care risks being compromised; particularly given the potential for negative interactions between T&CM and conventional cancer treatments. Fostering health care interactions where indigenous patients feel comfortable to discuss T&CM usage should be a priority for all cancer care services.

Introduction: Indigenous Australians with cancer tend to be diagnosed with more aggressive and advanced-stage disease, receive less treatment, have poorer survival and lower quality of life than other Australians. Reducing these inequalities requires an understanding of the supportive care needs of this cancer group. This study aims to describe the type and extent of unmet supportive care needs of Indigenous Australian cancer patients., Method: A multicentre, cross-sectional study recruited 145 Indigenous adults diagnosed with cancer in the previous 5 years in four Australian states and territories. Using a culturally specific tool, unmet needs were assessed in four domains: 'physical and psychological', 'hospital care', 'information and communication' and 'practical and cultural'. Moderate to high unmet need is that which requires some or a lot more help to be addressed., Results: Two-thirds (65%) of patients reported at least one moderate to high unmet need and 20% of patients had moderate to high unmet needs with five or more items. Overall, patients most commonly reported moderate to high unmet needs in the physical/psychological (46%) and practical/cultural domains (34%), than the information/communication (23%) and hospital care domains (16%). More specifically, 'money worries' was the most frequently reported moderate to high unmet need (20%)., Conclusion: Most Indigenous Australians living with cancer experience unmet supportive care needs. Physical/psychological and practical/cultural concerns were identified as priority areas for Indigenous cancer patients. These findings may inform priority areas for intervention towards optimal care pathways for Indigenous Australians diagnosed and living with cancer.

Objectives: This study describes and compares the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer., Methods: Data from two cross-sectional supportive care needs studies were matched in a 1:1 ratio for Indigenous (n = 125) and Non-Indigenous (n = 125) Australian adults diagnosed with cancer. Descriptive statistics were used to compare type and prevalence of 24 need items measured by the SCNS-SF34 and SCNAT-IP., Results: A higher proportion of Non-Indigenous participants compared to Indigenous participants reported having any moderate-to-high level of unmet needs (70% vs. 54%, p = 0.013) and the difference was consistently observed across non-matched characteristics. While concerns for caregivers, fear of recurrence and pain were central needs for both Indigenous participants and Non-Indigenous participants, there were some key differences in the specific unmet needs between groups. Physical issues including doing usual daily activities and dealing with fatigue were the top priorities for Non-Indigenous people, while money worries, dealing with psychological issues such as how to keep their spirit strong or hope about their future appeared to be priorities for Indigenous people., Conclusions: Variations in the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer may guide health professionals to target specific needs when preparing care plans., (© 2019 John Wiley & Sons Ltd.)

Background: Indigenous Australians diagnosed with cancer have poorer survival compared to non-Indigenous Australians. We aim to: 1) identify differences by Indigenous status in out-of-pocket expenditure for the first three-years post-diagnosis; 2) identify differences in the quantity and cost of healthcare services accessed; and 3) estimate the number of additional services required if access was equal between Indigenous and non-Indigenous people with cancer., Methods: We used CancerCostMod, a model using linked administrative data. The base population was all persons diagnosed with cancer in Queensland, Australia (01JUL2011 to 30JUN2012) (n = 25,553). Each individual record was then linked to their Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Scheme (PBS) records (01JUL2011 to 30JUN2015). We then weighted the population to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians). The patient co-payment charged for each MBS service and PBS prescription was summed for each month from date of diagnosis to 36-months post-diagnosis. We then limited our model to MBS items to identify the quantity and type of healthcare services accessed during the first three-years., Results: On average Indigenous people with cancer had less than half the out-of-pocket expenditure for each 12-month period (0-12 months: mean $401 Indigenous vs $1074 non-Indigenous; 13-24 months: mean $200 vs $484; and 25-36 months: mean $181 vs $441). A stepwise generalised linear model of out-of-pocket expenditure found that Indigenous status was a significant predictor of out of pocket expenditure. We found that Indigenous people with cancer on average accessed 236 services per person, however, this would increase to 309 services per person if Indigenous people had the same rate of service use as non-Indigenous people., Conclusions: Indigenous people with cancer had lower out-of-pocket expenditure, but also accessed fewer Medicare services compared to their non-Indigenous counterparts. Indigenous people with cancer were less likely to access specialist attendances, pathology tests, and diagnostic imaging through MBS, and more likely to access primary health care, such as services provided by general practitioners.

Background: Disparities in cancer outcomes amongst Indigenous Australians reflect a pattern of reduced access to and engagement with health services. A growing emphasis on patient-centred care has increased efforts to measure patient experiences, but it is unclear whether existing approaches: a) assess the most critical aspects of care that shape the experiences of Indigenous people with cancer; and b) facilitate the engagement and participation of Indigenous people with the measurement of care experiences., Methods: Two rounds of semi-structured interviews and focus groups were used to elicit stakeholders' views on priorities for measuring the cancer care experiences of Indigenous cancer patients and on the acceptability of various methods for capturing such information. Participants included Indigenous people affected by cancer (n = 17), health professionals (n = 28) and individuals in both groups (n = 7). Recruitment occurred through a national web-based network and through four cancer services in urban and regional areas in three jurisdictions across Australia., Results: Several aspects of cancer care were identified as critical in shaping Indigenous patients' experiences. Key themes included: feeling safe in the system; importance of Indigenous staff; barriers to care; the role of family and friends; effective communication and education; and coordination of care and transition between services. Those participants affected by carers' wellbeing and palliative care strongly advocated for the importance of these topics. Participants expressed support for a face-to-face interview with a trusted person as the most appropriate means of collecting cancer care experience information., Conclusions: While existing experience measurement tools would partially capture some important aspects of care, other critical areas would likely be missed. Appropriate tools and approaches, developed by and with Indigenous people, are urgently needed to determine the extent to which health services are meeting the needs of Indigenous people with cancer, and to identify areas for action to improve these services.

Objective: To examine where Indigenous Australians undergo cancer treatment and learn about specific service initiatives that have been implemented to meet their needs., Methods: Public cancer treatment centres across Australia were invited to participate in an online survey about various characteristics of their centre, including the type of service provided, Indigenous patient numbers and policy, and implementation of Indigenous-specific initiatives., Results: Surveys were completed for 58 of 125 public cancer treatment centres. Almost half (47%) of the services saw more than 10 Indigenous patients per year, although Indigenous patients generally represented a small minority of patients. The most commonly reported initiatives were "having links with Indigenous health organisations in the community" (74% of services), "making a dedicated effort to address the needs of Indigenous patients" (69%) and proactively "creating partnerships with Indigenous communities and health organisations" (69%)., Conclusions: The majority of respondents indicated that they were working to meet the needs of Indigenous patients and were interested in learning strategies from others to improve their services. More work is needed to describe and evaluate the specific initiatives that have been implemented. Implications for public health: Information from this study can assist cancer service providers to identify gaps in current services, plan new service delivery initiatives and ultimately improve Indigenous cancer outcomes., (© 2018 The Authors.)

Indigenous Australians diagnosed with cancer experience higher mortality and lower survival rates compared to non-Indigenous Australians. Reasons are multifaceted and complex. Knowledge about Indigenous cancer survivors' perspectives of positive cancer survivorship is a gap in research evidence. The study explored cancer survivorship perspectives of Indigenous cancer survivors, their support people and healthcare workers with a view to developing recommendations for cancer survivorship. Indigenous Australians who completed cancer treatment in the previous 6 months to 5 years, their support people and primary healthcare workers were recruited from primary healthcare centres and a large tertiary Queensland hospital. Semi-structured interviews and focus groups were conducted with written and informed consent obtained prior. Participants emphasised key action areas and recommendations to enhance cancer survivorship, namely: establishing a community cancer advocate and peer support program, availability and use of a cancer-specific Indigenous primary healthcare worker and hospital-based Indigenous patient navigator, as well as adoption of question prompt lists and cancer survivorship care plans. Existing research suggests significant benefits from implementing the key recommendations identified in this study. Greater support and commitment across health sectors and funding bodies is needed to promote institutional change and health system development.

Purpose: The purpose of this study is to identify the level of and factors associated with distress in 155 Indigenous Australian cancer survivors approximately 6 months post-diagnosis., Methods: The distress thermometer (DT) was used to assess clinically significant distress (defined as having a DT score ≥ 4). Logistic regression was used to identify sociodemographic and clinical factors associated with clinically significant distress., Results: The mean distress score was 2.7 (SD 2.9), with about one in three Indigenous cancer survivors reporting clinically significant distress (35%; n = 54). After adjusting for age and sex, clinically significant distress was more likely among those who were separated/divorced/widowed than those who were married (odds ratio (OR) = 2.99, 95% confidence intervals (95% CI) 1.21-7.35, p = 0.017) and less likely among those residing in remote areas than those in major cities (OR = 0.23, 95% CI 0.08-0.71, p = 0.001) and in those receiving non-surgical treatment only compared with surgery only (OR = 0.24, 95% CI 0.08-0.68, p = 0.008)., Conclusions: Despite increased screening for distress in cancer care, this is, to our knowledge, the first published assessment of distress among Indigenous Australian cancer survivors. The characteristics of Indigenous cancer survivors associated with greater likelihood of clinically significant distress indicate at-risk subgroups who would benefit from screening and early intervention. Further research is required to identify the specific aetiologies of distress. Our findings indicate a need to identify psychological distress and for survivorship care to include culturally sensitive and tailored psychological support for Indigenous cancer survivors.

Indigenous Australians experience a substantially higher cancer mortality rate than non-Indigenous Australians. While cancer outcomes are improving for non-Indigenous Australians, they are worsening for Indigenous Australians. Reducing this disparity requires evidence-based and culturally-appropriate guidance. The purpose of this paper is to describe an initiative by Cancer Australia and Menzies School of Health Research (Menzies) to develop Australia&rsquo;s first National Aboriginal and Torres Strait Islander Cancer Framework using a process of co-design with relevant stakeholders. The initiative was guided by three core principles: achieving policy-relevant evidence-based outcomes; engaging and maintaining trust with Indigenous Australians at every phase; and employing best-practice and appropriate research methods. Four components of research comprised the Framework development: evidence review; multifaceted stakeholder consultation and input; triangulation of findings; and direct stakeholder input in drafting and refining the Framework. The evidence review confirmed the increasing burden of cancer on Indigenous Australians, while stakeholder consultations facilitated comprehensive input from those with lived experience. The consultations revealed issues not identified in existing literature, and gave different emphases of priority, thus reinforcing the value of including stakeholder perspectives. This paper focuses primarily on documenting the methods used; findings are presented only in order to illustrate the results of the process. The published Framework is available at www.canceraustralia.gov.au; further description and analyses of findings from the consultations will be published elsewhere. The logistics inherent in large-scale consultation are considerable. However, the quality of data and the foundation for sustained partnership with stakeholders and knowledge translation vastly outweighed the challenges. The process of wide-ranging stakeholder consultation described in this paper offers a model for other areas of national and international Indigenous priority setting and policy and practice development that meets the needs of those most affected. The Framework, through the establishment of an agreed, shared and evidence-based agenda, provides guidance for jurisdictional cancer plans, optimal care pathways, and program and service planning for the multiple players across all levels of the health system.

It is estimated that there are 370 million indigenous peoples in 90 countries globally. Indigenous peoples generally face substantial disadvantage and poorer health status compared with nonindigenous peoples. Population-level cancer surveillance provides data to set priorities, inform policies, and monitor progress over time. Measuring the cancer burden of vulnerable subpopulations, particularly indigenous peoples, is problematic. There are a number of practical and methodological issues potentially resulting in substantial underestimation of cancer incidence and mortality rates, and biased survival rates, among indigenous peoples. This, in turn, may result in a deprioritization of cancer-related programs and policies among these populations. This commentary describes key issues relating to cancer surveillance among indigenous populations including 1) suboptimal identification of indigenous populations, 2) numerator-denominator bias, 3) problems with data linkage in survival analysis, and 4) statistical analytic considerations. We suggest solutions that can be implemented to strengthen the visibility of indigenous peoples around the world. These include acknowledgment of the central importance of full engagement of indigenous peoples with all data-related processes, encouraging the use of indigenous identifiers in national and regional data sets and mitigation and/or careful assessment of biases inherent in cancer surveillance methods for indigenous peoples., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: Indigenous people experience poorer cancer survival outcomes compared with non-Indigenous people. Currently, there is growing awareness of poor health literacy as a determinant of cancer outcomes. However, little attention has been given to researching cancer-related health literacy amongst Indigenous people., Objectives: To systematically review empirical studies of cancer health literacy amongst Indigenous people worldwide., Methods: Articles were identified in Medline (1946-2013); Pre-Medline; CINAHL; PsycINFO (1967-2013); PubMed; Current Contents/All Editions (1993-2013); Allied Health and Complimentary Medicine (1985-2013), and in the reference lists of retrieved articles and by expert consultation. 64 abstracts were screened for inclusion and 16 articles were retained., Results: There is a paucity of high-quality research concerning of health literacy amongst Indigenous cancer patients. No articles used formal measures of health literacy and data on the prevalence of health literacy was not reported. Of the 7 articles describing interventions only one included a control group and the remainder employed quasi-experimental methods., Conclusions: Research is needed to explore the cultural relevance of existing measures of health literacy and to document the prevalence of health literacy amongst Indigenous people with cancer. A better understanding of Indigenous cancer patients' health literacy is required before health literacy interventions can be designed to improve Indigenous cancer outcomes.

Amongst Indigenous Australians, "cancer" has negative connotations that detrimentally impact upon access to cancer care services. Barriers to accessing cancer services amongst Indigenous Australians are widely reported. In contrast, factors that facilitate this cohort to successfully navigate cancer care services ("enablers") are scarcely reported in the literature. Through qualitative interviews, this article examines factors that assist Indigenous Australians to have positive cancer experiences. Semi-structured interviews were conducted with twelve adult Indigenous oncology patients recruited from a tertiary hospital in Queensland, Australia during 2012-2014. Data generated from the interviews were independently reviewed by two researchers via inductive thematic analytical processes. Discussions followed by consensus on the major categories allowed conclusions to be drawn on potential enablers. Two major categories of enablers were identified by the researchers: resilience and communication. Individual's intrinsic strength, their coping strategies, and receipt of support improved participant's resilience and consequently supported a positive experience. Communication methods and an effective patient-provider relationship facilitated positive experiences for participants. Despite potential barriers to access of care for Indigenous cancer patients, participants in the study demonstrated that it was still possible to focus on the positive aspects of their cancer experiences. Many participants explained how cancer changed their outlook on life, often for the better, with many feeling empowered as they progressed through their cancer diagnosis and treatment processes., Competing Interests: The authors declare no conflict of interest.

Indigenous patient navigator (IPN) programmes show promise in addressing barriers to cancer care and facilitation of patient self-efficacy. The purpose of this paper is to describe and reflect upon the experience of training an IPN and implementation of the intervention in the Australian context with Indigenous cancer patients. Randomised clinical trial might provide the best available evaluation measure of an intervention but caution should be taken in the implementation process. Socio-cultural aspects and training can affect the conduct of this type of intervention. We report here five issues needing consideration prior to implementing such intervention. Specifically: (1) recognition of the collective bonds within Indigenous community and understanding by IPN of the degree of personal assistance perceived as not intrusive by the patient; (2) conduct ongoing evaluation of the different role of an IPN involved in this intervention care provider vs. researcher. (3) meaningful engagement develops from a trusting/collaborative relationship between research team and study site staff which may not occur in the study time frame; (4) existing skills as well as training provided may not translate in the IPN understanding and aligning with the study objectives/research values; (5) recruitment of participants requires innovative and highly flexible strategies to be successful., (© 2017 John Wiley & Sons Ltd.)

Objectives: The cancer burden is high among Australia's Indigenous population. Following a period of increasing attention by researchers, policy makers and consumers, this study aimed to identify emerging research priorities in Indigenous cancer control., Methods: A survey was administered to a network of individuals with an interest in cancer and Indigenous Australians. Respondents (N = 255) described what they thought was the most significant research priority for cancer control for Indigenous Australians and ranked prespecified research areas relating to components of the cancer continuum., Results: Identified research priorities included cancer prevention and early detection; health literacy; and culturally appropriate care for Indigenous patients, survivors and families. Community engagement, Indigenous ownership, and partnership and collaboration were highlighted as critical elements underpinning research., Conclusions: The identified research priorities, along with seminal documents such as the National Aboriginal and Torres Strait Islander Cancer Framework, provide a roadmap for developing, funding, implementing and translating research to reduce the burden of cancer for Indigenous Australians., Competing Interests: None declared

Purpose: The purpose of this study was to explore Indigenous Australian cancer survivors' perspectives of follow-up cancer care and management.., Methods: This is a qualitative study employing individual interviews with 21 Indigenous cancer survivors (13 females, 8 males) recruited from a rural primary health service and large tertiary hospital in Brisbane, Queensland. Yarning methods were used to conduct semi-structured interviews. Yarning is a culturally appropriate, informal conversational process emphasising the importance of storytelling., Results: Findings describe a range of ways in which follow-up cancer care is experienced with four major categories elucidated, namely: links to tertiary health services, links to primary health services, communication between tertiary and primary health services, and lost in transition. Both positive and negative experiences were described; however, the importance of timely and informative discharge information, continuity of care, good communication between tertiary and primary health services, and strong therapeutic relationships were salient issues raised by participants., Conclusions: These findings highlight the importance of establishing strong therapeutic relationships between patients and tertiary and primary health professionals. Also important for survivorship is provision of discharge summaries or care plans at discharge for survivors and general practitioners as well as access to a range of allied health services. Alternative means for follow-up could be investigated for regional and rural survivors to facilitate convenient and cost-effective follow-up care. Finally, provision of responsive and flexible follow-up care to cater for the diverse range of needs and preferences of cancer survivors is required. A patient navigator available across the cancer continuum could go some way to addressing this.

Indigenous Australians experience a greater burden of cancer than other Australians, but there is little systematic information about their experiences of cancer care. Patient-centred care is increasingly recognised as one of the core domains of quality care, alongside clinical effectiveness and patient safety. Qualitative studies have identified significant issues relating to Indigenous patients' experiences of cancer care, but these data are often insufficient to inform and evaluate health service improvement. We need to establish appropriate methods that will lead to systematic, routinely collected, accurate, population-based data on the experiences of care of Indigenous people with cancer, and determine how best to translate these data into improvements in the delivery of care to this population. Genuine Indigenous leadership and involvement will be necessary, with the whole approach underpinned by the primary aim of improving health outcomes for this population.

Purpose: The purposes of the present study are to describe changes over time in the prevalence of unmet supportive care needs of Indigenous Australians newly diagnosed with cancer and to identify factors associated with greater needs at diagnosis., Methods: Unmet needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) within 3 months and at 6 months post-diagnosis. Overall needs and specific need domains were modelled using generalized estimating equations. Associations between risk factors and moderate-high unmet needs at diagnosis were assessed using multivariable logistic regression analyses., Results: Over half (54%) of the participants (n = 82) experienced at least one moderate-high unmet need at diagnosis which reduced to 34% at 6 months post-diagnosis. This improvement mainly reflected the decrease in needs from the physical/psychological domain (p = 0.042). The median overall unmet need score and most domain scores were significantly lower at 6 months. Eighteen percent experienced multiple (5+) moderate-high unmet needs at diagnosis (60% continued to report needs at 6 months). The top unmet needs at diagnosis were money worries (27%), concerns about the worries of those close to you (16%) and worry about your illness spreading/getting worse (15%). Having a higher education and having received cancer treatment in the last 30 days were significantly associated with greater needs at diagnosis., Conclusions: While unmet needs decreased over time, some patients continued to experience moderate-high unmet needs. This study indicates that needs should be monitored throughout the patient's journey. Coordination of support, particularly for those with multiple needs, may be important for this group.

Purpose: The purpose of the present study is to explore the role of the general practitioners, family physicians and primary care physicians (GP) in the provision of follow-up cancer care., Methods: PubMed, MEDLINE and CINAHL were systematically searched for primary research focussing on the role of the GP from the perspective of GPs and patients. Data were extracted using a standardised form and synthesised using a qualitative descriptive approach., Results: The initial search generated 6487 articles: 25 quantitative and 33 qualitative articles were included. Articles focused on patients' and GPs' perspectives of the GP role in follow-up cancer care. Some studies reported on the current role of the GP, barriers and enablers to GP involvement from the perspective of the GP and suggestions for future GP roles. Variations in guidelines and practice of follow-up cancer care in the primary health care sector exist. However, GPs and patients across the included studies supported a greater GP role in follow-up cancer care. This included greater support for care coordination, screening, diagnosis and management of physical and psychological effects of cancer and its treatment, symptom and pain relief, health promotion, palliative care and continuing normal general health care provision., Conclusion: While there are variations in guidelines and practice of follow-up cancer care in the primary health care sector, GPs and patients across the reviewed studies supported a greater role by the GP., Implications for Cancer Survivors: Greater GP role in cancer care could improve the quality of patient care for cancer survivors. Better communication between the tertiary sector and GP across the cancer phases would enable clear delineation of roles.

The survival inequality faced by Indigenous Australians after a cancer diagnosis is well documented; what is less understood is whether this inequality has changed over time and what this means in terms of the impact a cancer diagnosis has on Indigenous people. Survival information for all patients identified as either Indigenous (n=3168) or non-Indigenous (n=211,615) and diagnosed in Queensland between 1997 and 2012 were obtained from the Queensland Cancer Registry, with mortality followed up to 31st December, 2013. Flexible parametric survival models were used to quantify changes in the cause-specific survival inequalities and the number of lives that might be saved if these inequalities were removed. Among Indigenous cancer patients, the 5-year cause-specific survival (adjusted by age, sex and broad cancer type) increased from 52.9% in 1997-2006 to 58.6% in 2007-2012, while it improved from 61.0% to 64.9% among non-Indigenous patients. This meant that the adjusted 5-year comparative survival ratio (Indigenous: non-Indigenous) increased from 0.87 [0.83-0.88] to 0.89 [0.87-0.93], with similar improvements in the 1-year comparative survival. Using a simulated cohort corresponding to the number and age-distribution of Indigenous people diagnosed with cancer in Queensland each year (n=300), based on the 1997-2006 cohort mortality rates, 35 of the 170 deaths due to cancer (21%) expected within five years of diagnosis were due to the Indigenous: non-Indigenous survival inequality. This percentage was similar when applying 2007-2012 cohort mortality rates (19%; 27 out of 140 deaths). Indigenous people diagnosed with cancer still face a poorer survival outlook than their non-Indigenous counterparts, particularly in the first year after diagnosis. The improving survival outcomes among both Indigenous and non-Indigenous cancer patients, and the decreasing absolute impact of the Indigenous survival disadvantage, should provide increased motivation to continue and enhance current strategies to further reduce the impact of the survival inequalities faced by Indigenous people diagnosed with cancer., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Background: Indigenous Australians have poorer cancer outcomes in terms of incidence mortality and survival compared with non-Indigenous Australians. The factors contributing to this disparity are complex. Identifying and addressing the psychosocial factors and support needs of Indigenous cancer patients may help reduce this disparity. The Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) is a validated 26-item questionnaire developed to assess their unmet supportive care needs. This qualitative study reports on patient and clinician attitudes towards feasibility and acceptability of SCNAT-IP in routine care., Methods: Forty-four in-depth semi-structured interviews were conducted with 10 clinical staff and 34 Indigenous cancer patients with heterogeneous tumours. Participants were recruited from four geographically diverse Australian cancer clinics. Transcripts were imported into qualitative analysis software (NVivo 10 Software), coded and thematic analysis performed., Results: Indigenous patients (mean age 54.4 years) found the SCNAT-IP beneficial and easy to understand and they felt valued and heard. Clinical staff reported multiple benefits of using the SCNAT-IP. They particularly appreciated its comprehensive and systematic nature as well as the associated opportunities for early intervention. Some staff described improvements in team communication, while both staff and patients reported that new referrals to support services were directly triggered by completion of the SCNAT-IP. There were also inter-cultural benefits, with a positive and bi-directional exchange of information and cultural knowledge reported when using the SCNAT-IP. Although staff identified some potential barriers to using the SCNAT-IP, including the time required, the response format and comprehension difficulties amongst some participants with low English fluency, these were outweighed by the benefits. Some areas for scaled improvement were also identified by staff., Conclusions: Staff and patients found the SCNAT-IP to be an acceptable tool and supported universal screening for Indigenous cancer patients. The SCNAT-IP has the potential to help reduce the inequalities in cancer care experienced by Indigenous Australians by identifying and subsequently addressing their unmet support needs. Further research is needed to explore the validity of the SCNAT-IP for Indigenous people from other nations.

Objective: There are few support programs with evidence-based practices which address the needs of cancer survivors from indigenous populations. This systematic review analysed the experiences and current support services for cancer survivors from indigenous populations following the cessation of cancer treatment., Methods: The data sourced for this article was identified from a systematic search of five databases (MEDLINE, MEDLINE In-Process, PyscINFO, CINAHL, and EMBASE). Studies were selected if they described the experiences of indigenous cancer survivors, their families, and/or clinicians primarily responsible for their care. In total 208 unique abstracts were screened, from which 17 studies were identified as having fulfilled all selection criteria., Results: Of the 17 articles reviewed, 12 described qualitative data and 5 provided quantitative data. Common themes identified included the importance of family support throughout the survivorship period, the negative effect of community stigmatization, fatalistic attitudes towards cancer, and the importance of spirituality in coping with, and understanding, the cancer experience. Potential barriers to accessing care included distance and difficulties revisiting the survivor's cancer experience due to an associated fear of cancer recurrence., Conclusions: Indigenous cancer survivors would benefit from survivorship programs more specifically tailored to their individual circumstances, such as personalized spiritual care, facilitation of increased involvement of family members, and connection to other indigenous cancer survivors., Implications for Cancer Survivors: The results from this review indicate that there is a need for survivorship care to be shaped specifically for the needs of indigenous cancer survivors.

Little is known about the supportive care needs (SCN) of Australian Indigenous cancer patients. This cross-sectional study investigated the association between comorbidity and SCN among newly diagnosed Indigenous cancer patients in Queensland. Comorbidity was ascertained from medical chart review using the Charlson Comorbidity Index (CCI) and SCN were measured using the Supportive Care Needs Assessment Tool for Indigenous Peoples (SCNAT-IP). Of 183 participants, 76 (42%) had no comorbidity (CCI = 0), 60 (33%) had had a CCI score of 1 and 47 (26%) had a CCI of two or more, with the most common condition being diabetes (30%). The most common moderate-high unmet need items varied between comorbidity groups, although all patients most frequently reported moderate-high unmet need in the Physical and Psychological and the Practical and Cultural needs domains. Patients with the greatest comorbidity (CCI ≥ 2) had significantly more reduced odds of practical and cultural needs than patients without comorbidity (OR 0.28, 95% CI 0.11-0.75). This appeared to be partially explained by time since diagnosis, age, whether they were receiving current treatment and residential remoteness. Patients' experience of chronic disease, hospitals and the healthcare system may better prepare them for the practical and cultural aspects of their cancer journey., (© 2016 John Wiley & Sons Ltd.)

To investigate health professionals' perspectives about factors that impede or facilitate cancer care for Indigenous people. Semi-structured interviews with 22 health professionals involved in Indigenous cancer care. Data were interpreted using an inductive thematic analysis approach. Participants presented their perspectives on a number of barriers and enablers to Indigenous cancer care. Barriers were related to challenges with communication, the health system and coordination of care, issues around individual and community priorities and views of cancer treatment and health professional judgement. Enablers to cancer care were related to the importance of trust and rapport as well as health care system and support factors. The findings highlighted the need for recording of Indigenous status in medical records and a coordinated approach to the provision of evidence-based and culturally appropriate cancer care. This could go some way to improving Indigenous patient's engagement with tertiary cancer care services., (© 2016 John Wiley & Sons Ltd.)

Introduction: Indigenous Australians have a higher cancer incidence, worse mortality and are less likely to receive optimal cancer treatment compared with non-Indigenous Australians. Culturally appropriate supportive care helps ensure that Indigenous patients engage in and receive optimal care. However, many existing supportive care needs tools lack cultural relevance for Indigenous people, and their feasibility with Indigenous people has not been demonstrated. The Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) assesses the unmet supportive care needs of Indigenous cancer patients., Purpose: This descriptive study evaluates the clinical implementation of the SCNAT-IP in routine care., Methods: Two large tertiary cancer treatment centres and two regional oncology clinics participated. Participants included 10 clinical staff and 36 adult Indigenous cancer patients (mean age 54 years). Patients and clinicians completed brief, purpose-designed questionnaires and interviews., Results: Patients reported high ratings (means >8/10) for acceptability, helpfulness and timing items. The majority (≥80%) of staff agreed that the SCNAT-IP was useful to clinical practice, should be used in routine care and was acceptable to their patients., Conclusions: The study provides empirical support for the feasibility and acceptability of the SCNAT-IP in routine cancer care with Indigenous Australians. Routine screening with the SCNAT-IP has the potential to improve cancer care for Indigenous people with cancer.