Systematic review of Aboriginal and Torres Strait Islander peoples' experiences and supportive care needs associated with cancer.

BACKGROUND: Persistent disparities exist between Aboriginal and Torres Strait Islander peoples (the Indigenous peoples of Australia) and non-Indigenous Australians associated with cancer, with Aboriginal and Torres Strait Islander peoples experiencing a longer time to treatment, higher morbidity rates, and higher mortality rates. This systematic review aimed to investigate findings and recommendations in the literature about the experiences and supportive care needs of Aboriginal and Torres Strait Islander peoples with cancer in Australia. METHODS: A qualitative systematic review was conducted using thematic analysis. Database searches were conducted in CINAHL, Informit, MEDLINE, ProQuest, Scopus, and Web of Science for articles published between January 2000 and December 2021. There were 91 included studies which were appraised using the Mixed Methods Appraisal Tool. The included studies reported on the experiences of cancer and supportive care needs in Aboriginal and Torres Strait Islander populations. RESULTS: Six key themes were determined: Culture, family, and community; cancer outcomes; psychological distress; access to health care; cancer education and awareness; and lack of appropriate data. Culture was seen as a potential facilitator to achieving optimal cancer care, with included studies highlighting the need for culturally safe cancer services and the routine collection of Aboriginal and Torres Strait Islander status in healthcare settings. CONCLUSION: Future work should capitalize on these findings by encouraging the integration of culture in healthcare settings to increase treatment completion and provide a positive experience for Aboriginal and Torres Strait Islander peoples with cancer.

Does breast cancer policy meet the needs of Aboriginal and Torres Strait Islander women in Australia? a review.

OBJECTIVE: To evaluate if existing Australian public policy related to screening, diagnosis, treatment and follow up care for breast cancer addresses the needs of and outcomes for Indigenous1 women? METHODS: This review of policy employed a modified Delphi method via an online panel of experts (n = 13), who were purposively recruited according to experience and expertise. A series of online meetings and online surveys were used for data collection. The aims of the study were to: Identify all existing and current breast cancer policy in Australia;  Analyse the extent to which consideration of Indigenous peoples is included in the development, design and implementation of the policy; and Identify policy gaps and make recommendations as to how they could be addressed. The policies were evaluated using 'A Guide to Evaluation under the Indigenous Evaluation Strategy, 2020'. RESULTS: A list of current breast cancer policies (n = 7) was agreed and analysed. Five draft recommendations to improve breast cancer outcomes for Indigenous women were developed and refined by the panel. CONCLUSIONS: Current breast cancer policy in Australia does not address the needs of Indigenous women and requires change to improve outcomes.

Challenges and solutions to cancer-related financial toxicity according to Australian health professionals: qualitative results from a national survey.

PURPOSE: To qualitatively explore Australian healthcare professionals' perspectives on how to improve the care and management of cancer-related financial toxicity, including relevant practices, services, and unmet needs. METHODS: We invited healthcare professionals (HCP) who currently provide care to people with cancer within their role to complete an online survey, which was distributed via the networks of Australian clinical oncology professional associations/organisations. The survey was developed by the Clinical Oncology Society of Australia's Financial Toxicity Working Group and contained 12 open-ended items which we analysed using descriptive content analysis and NVivo software. RESULTS: HCPs (n = 277) believed that identifying and addressing financial concerns within routine cancer care was important and most believed this to be the responsibility of all HCP involved in the patient's care. However, financial toxicity was viewed as a "blind spot" within a medical model of healthcare, with a lack of services, resources, and training identified as barriers to care. Social workers reported assessment and advocacy were part of their role, but many reported lacking formal training and understanding of financial complexities/laws. HCPs reported positive attitudes towards transparent discussions of costs and actioning cost-reduction strategies within their control, but feelings of helplessness when they perceived no solution was available. CONCLUSION: Identifying financial needs and providing transparent information about cancer-related costs was viewed as a cross-disciplinary responsibility, however, a lack of training and services limited the provision of support. Increased cancer-specific financial counselling and advocacy, via dedicated roles or developing HCPs' skills, is urgently needed within the healthcare system.

Strengthening cancer control in the South Pacific through coalition-building: a co-design framework.

Background: Cancer is a significant problem for the South Pacific region due to a range of complex health challenges. Currently gaps in diagnosis, treatment and palliative care are significant, and while governmental commitment is strong, economic constrains limit health system strengthening. Alliances have been successful in strengthening non-communicable disease and cancer control policy and services in resource constrained settings. A regional coalition approach has therefore been recommended as an effective solution to addressing many of the challenges for cancer control in the South Pacific. However, evidence regarding the effective mechanisms for development of alliances or coalitions is scarce. This study aimed to 1) create a Coalition Development Framework; 2) assess the use of the Framework in practice to co-design a South Pacific Coalition. Methods: Creation of the Coalition Development Framework commenced with a scoping review and content analysis of existing literature. Synthesis of key elements formed an evidence-informed step-by-step guide for coalition-building. Application of the Framework comprised consultation and iterative discussions with key South Pacific cancer control stakeholders in Fiji, New Caledonia, Papua New Guinea, Samoa and Tonga. Concurrent evaluation of the Framework utilising Theory of Change (ToC) and qualitative analysis of stakeholder consultations was undertaken. Findings: The finalised Coalition Development Framework comprised four phases with associated actions and deliverables: engagement, discovery, unification, action and monitoring. Application of the Framework in the South Pacific identified overwhelming support for a Cancer Control Coalition through 35 stakeholder consultations. Framework phases enabled stakeholders to confirm coalition design and purpose, strategic imperatives, structure, local foundations, barriers and facilitators, and priorities for action. ToC and thematic consultation analysis confirmed the Framework to be an effective mechanism to drive engagement, unification and action in alliance-building. Interpretation: A Coalition to drive cancer control has significant support among key Pacific stakeholders, and establishment can now be commenced. Importantly results confirm the effective application of the Coalition Development Framework in an applied setting. If momentum is continued, and a regional South Pacific Coalition established, the benefits in reducing the burden of cancer within the region will be substantial. Funding: This work was completed for a Masters of Public Health project. Cancer Council Australia provided project funding.

Opinions and strategies of Australian health professionals on tackling cancer-related financial toxicity: A nationwide survey.

AIM: To understand the opinions and current practices of health professionals on the topic of addressing cancer-related financial toxicity among patients. METHODS: A cross-sectional online survey was distributed through Australian clinical oncology professional organizations/networks. The multidisciplinary Clinical Oncology Society of Australia Financial Toxicity Working Group developed 25 questions relating to the frequency and comfort levels of patient-clinician discussions, opinions about their role, strategies used, and barriers to providing solutions for patients. Descriptive statistics were used and subgroup analyses were undertaken by occupational groups. RESULTS: Two hundred and seventy-seven health professionals completed the survey. The majority were female (n = 213, 77%), worked in public facilities (200, 72%), and treated patients with varied cancer types across all of Australia. Most participants agreed that it was appropriate in their clinical role to discuss financial concerns and 231 (88%) believed that these discussions were an important part of high-quality care. However, 73 (28%) stated that they did not have the appropriate information on support services or resources to facilitate such conversations, differing by occupation group; 7 (11%) social workers, 34 (44%) medical specialists, 18 (25%) nurses, and 14 (27%) of other occupations. Hindrances to discussing financial concerns were insufficient resources or support systems to refer to, followed by lack of time in a typical consultation. CONCLUSION: Health professionals in cancer care commonly address the financial concerns of their patients but attitudes differed across occupations about their role, and frustrations were raised about available solutions. Resources supporting financial-related discussions for all health professionals are urgently needed to advance action in this field.

How can we improve information for people affected by cancer? A national survey exploring gaps in current information provision, and challenges with accessing cancer information online.

OBJECTIVE: Despite improved recognition regarding the importance and association between provision of high quality information for people affected by cancer and improved outcomes and experiences; gaps and unmet needs are still reported. As oncology health information provision increasingly moves online, understanding how service users experience and manage misinformation is important. Determining patient and carer preferences regarding cancer provision is needed to address outstanding gaps. METHODS: This study utilised a purpose-built national cross-sectional survey distributed via social media to assess perspectives regarding cancer information in Australia. Quantitative and qualitative (open text) items assessed respondents' perspectives regarding current inforation preferences and gaps, and experiences with accessing information online. RESULTS: A total of 491 people affected by cancer completed the survey. Respondents highlighted a preference for information that better addresses the diversity of cancer experience, and is more timely and responsive to personal situation and care context. Despite increasing attention to health literacy standards, complex medical jargon and terminology remains prevalent. Many respondents have concerns about misinformation, and seek improved mechanisms or skills to assist with determining the trustworthiness and relevance of information found online. CONCLUSIONS: Survey responses identified current gaps in information provision for people affected by cancer. Personalised information in formats which are more flexible, accessible, and responsive to user needs are required. PRACTICE IMPLICATIONS: Education and resources to target and improve digital health literacy and combat health misinformation are needed. Novel solutions co-designed by people affected by cancer will ensure that information is provided in a manner that is relevant, timely, and personalised.

Australian Experiences of Out-of-Pocket Costs and Financial Burden Following a Cancer Diagnosis: A Systematic Review.

(1) Background: This systematic review was conducted to identify cancer patient experiences, and the impact of out-of-pocket costs and financial burden in Australia. (2) Methods: A systematic review, following the Preferring Reporting Items for Systematic Reviews and Meta-Analyses, was conducted. Cumulative Index of Nursing and Allied Health Literature and PubMed were searched. The primary outcome was financial burden among cancer patients and their families in Australia. The secondary outcome was out-of-pocket costs associated with cancer care and treatment within the population sample, and the impact of financial burden. (3) Results: Nineteen studies were included, covering more than 70,000 Australians affected by cancer. Out-of-pocket costs varied by cancer type and ranged from an average of AUD 977 for breast cancer and lymphoedema patients to AUD 11,077 for prostate cancer patients. Younger aged patients (≤65 years), Aboriginal and Torres Strait Islander people, people in rural and/or remote areas, households with low income, those who were unemployed and people with private health insurance were at increased risk of experiencing out-of-pocket costs, financial burden or a combination of both. (4) Conclusions: Australians diagnosed with cancer frequently experience financial burden, and the health and financial consequences are significant. Focusing efforts on the costs of care and options about where to have care within the context of informed decisions about cancer care is necessary.

Oncologist provision of smoking cessation support: A national survey of Australian medical and radiation oncologists.

AIM: Continued smoking in patients diagnosed with cancer affects treatment outcomes and overall survival. With national surveys of Australian medical oncologists (MO) and radiation oncologists (RO) we sought to determine current clinical practices, preferences and barriers in providing patient smoking cessation support. METHODS: Oncologist members of the Medical Oncology Group of Australia (n = 452) and Trans-Tasman Radiation Oncology Group (n = 230) were invited to participate in a multiple choice survey exploring smoking cessation practices and beliefs. RESULTS: The survey response rate was 43%. At first consultations more than 90% of MO and RO regularly asked patients if they smoke or use tobacco products, closely followed by documentation of duration of smoking history and current level of consumption. Less common was asking the patient if they intended to quit (MO 63%, RO 53%) and advising cessation (MO 70%, RO 72%). Less than 50% of oncologists regularly asked about current smoking in follow-up consultations. Although a range of referral options for smoking cessation care were used by oncologists, only 2% of MO and 3% of RO actively managed the patients' smoking cessation themselves and this was the least preferred option. The majority believed they require more training in cessation interventions (67% MO, 57% RO) and cited multiple additional barriers to providing cessation care. CONCLUSIONS: Oncologists strongly prefer smoking cessation interventions to be managed by other health workers. A collaborative approach with other health professionals is needed to aid the provision of comprehensive smoking cessation care tailored to patients with cancer.

Knowledge of the signs and symptoms and risk factors of lung cancer in Australia: mixed methods study.

BACKGROUND: Lung cancer is the leading cause of cancer death in Australia. There is potential that health promotion about the risks and warning signs of lung cancer could be used to reduce delays in symptom presentation when symptoms are first detected. This study investigated knowledge, attitudes and beliefs which might impact help-seeking behaviour and could provide insight into possible public health interventions in New South Wales (NSW). METHODS: A convergent mixed method study design was used wherein data from 16 qualitative focus groups of residents (40+ years), purposefully recruited and stratified by smoking status, age and geography (metropolitan/regional), were compared with a CATI administered population-wide telephone survey (n = 1,000) using the Cancer Research UK cancer awareness measure (LungCAM). Qualitative findings were analysed thematically using NVIVO. Logistic regression analysis was used to investigate predictors of symptom knowledge in STATA. Findings were integrated using triangulation techniques. RESULTS: Across focus groups, haemoptysis was the only symptom creating a sense of medical urgency. Life experiences evoked a 'wait and see' attitude to any health deterioration. Perceived risk was low amongst those at risk with current smokers preferring to deny their risk while former smokers were generally unaware of any ongoing risk. The quantitative sample consisted of females (62 %), 40-65 years (53 %), low SES (53 %), former (46 %) and current smokers (14 %). In quantitative findings, haemoptysis and dyspnoea were the most recognised symptoms across the sample population. Age (<65 years), sex (female) and high socio-economic status contributed to a higher recognition of symptoms. Smoking was recognised as a cause of lung cancer, yet ever-smokers were less likely to recognise the risk of lung cancer due to second-hand smoke (OR 0.7 95 % CI 0.5-0.9). CONCLUSION: While there was some recognition of risk factors and symptoms indicative of lung cancer, there was disparity across the sample population. The qualitative findings also suggest that knowledge may not lead to earlier presentation; a lack of urgency about symptoms considered trivial, and smoking-related barriers such as stigma may also contribute to time delays in presentation. Public health interventions may be required to increase awareness of risk and emphasise the importance of seeking medical attention for ongoing symptoms.

The development and implementation of a pilot CBT for early psychosis service: achievements and challenges.

AIM: Cognitive behaviour therapy (CBT) is a clinically indicated treatment for first-episode psychosis. Despite this, CBT for early psychosis is not routinely available as part of standard mental health services in Australia. The aim of this pilot project was to develop a CBT for early psychosis service to be provided as an adjunct to existing community mental health services. This study examined the feasibility of this service model, delivered in a real-world setting. A secondary aim was to explore the effectiveness of this service, as measured by clinical and functional outcomes. METHODS: Participants living in northern Sydney, Australia, and who had recently experienced a first episode of psychosis, were offered up to 20 sessions of individual CBT. Service feasibility was measured via attrition rates, therapy attendance and referrer feedback. Measures of psychosis, depression, anxiety and psychosocial functioning, were assessed pretreatment, after six and 12 sessions, and at 3 months post-treatment. RESULTS: Nineteen clients attended treatment to completion. Survey feedback from referrers affirmed the positive impact of the service on clients' recovery. Additionally, clients showed improvements in symptoms of psychosis over the first three time points. Psychosocial functioning also shifted from the moderately to mildly impaired range by the end of treatment. CONCLUSIONS: The CBT for early psychosis service has been successfully integrated into the mental health landscape of northern Sydney. Outcomes of this pilot project are discussed with reference to the achievements of the service, as well as the obstacles encountered, and how they were overcome.

Self-reported participation and beliefs about bowel cancer screening in New South Wales, Australia.

ISSUE ADDRESSED: To describe self-reported bowel cancer screening participation, beliefs and attitudes in a sample of New South Wales (NSW) adults, and to identify beliefs and demographic factors associated with self-reported bowel cancer screening participation. METHODS: This study used data from the International Cancer Benchmarking Partnership Module 2, a representative population-based telephone survey. Self-reported participation in and beliefs about bowel cancer screening were measured using the Awareness and Beliefs about Cancer survey of people aged 50 years and over living in NSW, Australia (n=2001). Logistic regression modelling was used to identify explanatory variables associated with bowel cancer screening participation. RESULTS: Half of all women (54.1%, 95% CI: 50.8-57.4%) and two-thirds of men (65.7%, 95% CI: 61.5-69.9%) reported screening for bowel cancer within the previous 5 years. Believing that screening was only necessary when experiencing symptoms was more likely to be endorsed by people aged 65 years and over (25.5%, 95% CI: 22.2-28.7%) rather than younger (50-64 years; 16.7%, 95% CI: 13.8-19.7%), non-English-speaking migrants (35.4%, 95% CI: 26.7-44.1%) versus others (18.6%, 95% CI: 16.4-20.7%), and people in metropolitan (23.3%, 95% CI: 20.4-26.1%) versus non-metropolitan areas (16.4%, 95% CI: 12.8-20%). People who disagreed that screening was only necessary when experiencing symptoms were four times more likely to report screening participation (OR 3.96, 95% CI: 3.11-5.03). CONCLUSIONS: Community education about bowel cancer screening is needed to correct misperceptions regarding screening in the absence of symptoms. Tailored strategies for older, migrant and urban communities may be beneficial. SO WHAT? Education strategies that promote the need for screening in the absence of symptoms and correct misconceptions about bowel cancer screening amongst subgroups of the NSW population may improve screening rates and decrease the burden of bowel cancer in NSW.

Knowledge, attitudes and beliefs about lung cancer in three culturally and linguistically diverse communities living in Australia: a qualitative study.

ISSUE ADDRESSED: Knowledge, attitudes and beliefs about lung cancer among Chinese, Vietnamese and Arabic-speaking communities in Sydney, New South Wales (NSW) are explored. METHODS: Seven focus groups were completed with a total of 51 participants (smokers and non-smokers) from three culturally and linguistically diverse communities (CALD). Five topics were discussed and translated summaries from focus groups were thematically analysed. RESULTS: There were variations in perceived susceptibility to lung cancer between the CALD groups and between smokers and non-smokers. Fatalistic views towards lung cancer were apparent across all three CALD communities. There were low levels of awareness of lung cancer signs and symptoms, with the exception of haemoptysis. Differences in help-seeking behaviour and levels of trust of general practitioners (GP) were apparent. CONCLUSION: Limited awareness of the signs and symptoms of lung cancer, combined with cultural perceptions about cancer, impacted on attitudes towards help-seeking behaviour in these three CALD communities. So what? The prevalence of smoking among Chinese men, Vietnamese men and Arabic-speaking communities in NSW puts them at increased risk of lung cancer. Health promotion initiatives for lung cancer should be tailored for CALD communities and could focus on increasing knowledge of key symptoms, awareness that ex-smokers are at risk and awareness of the diagnostic pathway including the importance of avoiding delays in help-seeking.

The role of primary care in early detection and follow-up of cancer.

Primary care providers have important roles across the cancer continuum, from encouraging screening and accurate diagnosis to providing care during and after treatment for both the cancer and any comorbid conditions. Evidence shows that higher cancer screening participation rates are associated with greater involvement of primary care. Primary care providers are pivotal in reducing diagnostic delay, particularly in health systems that have long waiting times for outpatient diagnostic services. However, so-called fast-track systems designed to speed up hospital referrals are weakened by significant variation in their use by general practitioners (GPs), and affect the associated conversion and detection rates. Several randomized controlled trials have shown primary care-led follow-up care to be equivalent to hospital-led care in terms of patient wellbeing, recurrence rates and survival, and might be less costly. For primary care-led follow-up to be successful, appropriate guidelines must be incorporated, clear communication must be provided and specialist care must be accessible if required. Finally, models of long-term cancer follow-up are needed that provide holistic care and incorporate management of co-morbid conditions. We discuss all these aspects of primary care, focusing on the most common cancers managed at the GP office-breast, colorectal, prostate, lung and cervical cancers.