DAta Linkage to Enhance Cancer Care (DaLECC): Protocol of a Large Australian Data Linkage Study.

Cancer is a leading cause of global morbidity and mortality, accounting for 250 Disability-Adjusted Life Years and 10 million deaths in 2019. Minimising unwarranted variation and ensuring appropriate cost-effective treatment across primary and tertiary care to improve health outcomes is a key health priority. There are few studies that have used linked data to explore healthcare utilisation prior to diagnosis in addition to post-diagnosis patterns of care. This protocol outlines the aims of the DaLECC project and key methodological features of the linked dataset. The primary aim of this project is to explore predictors of variations in pre- and post-cancer diagnosis care, and to explore the economic and health impact of any variation. The cohort of patients includes all South Australian residents diagnosed with cancer between 2011 and 2020, who were recorded on the South Australian Cancer Registry. These cancer registry records are being linked with state and national healthcare databases to capture health service utilisation and costs for a minimum of one-year prior to diagnosis and to a maximum of 10 years post-diagnosis. Healthcare utilisation includes state databases for inpatient separations and emergency department presentations and national databases for Medicare services and pharmaceuticals. Our results will identify barriers to timely receipt of care, estimate the impact of variations in the use of health care, and provide evidence to support interventions to improve health outcomes to inform national and local decisions to enhance the access and uptake of health care services.

Challenges and solutions to sharing a cancer follow-up e-care plan between a cancer service and general practice.

OBJECTIVE: This paper describes the process of developing a shared cancer care approach in follow-up, and identifies the e-health options that support an interactive e-care plan shared between a public cancer service, general practitioners (GPs) and cancer survivors. Type of program/service: The cancer service improvement initiative for shared care in follow-up targets colorectal cancer patients who have completed active treatment and who agree to shared care between specialists, GPs and other care team members. The intiative is supported by an agreed shared care pathway and an interactive e-care plan that is dynamic, can be shared and has functionalities that support collaboration. Design and development: A consultative process with stakeholders (local and state health services, a Primary Health Network, GPs and a consumer) was undertaken. Responses from individual consultations (25 stakeholders) were collated and commonalities identified to inform a workshop with 13 stakeholders to obtain consensus on the care pathway and e-health solution. Implications for policy and practice were identified throughout the process. OUTCOMES: The stakeholders agreed to a shared care pathway, which included assessment and consent, GP engagement, tailoring the care plan and communicating results and information as tasks are completed. The nurse coordinator monitored care. No interactive e-care plans were available at national, state or local health service levels. A web-based GP interactive e-care plan was selected. The main concerns raised were uncertainty about the security of e-health systems not controlled by the local health service and sharing clinical information with external health providers, engaging GPs, and patient anxiety about the capacity of general practice to provide care. The e-care plan provided a low-risk solution to sharing patient information and supported collaborative care. Challenges to share e-care plans have implications for policy and practice. LESSONS LEARNT: Stakeholders and the project team agreed that finding an e-health system that supported shared cancer care in follow-up and addressed the security and information sharing concerns could not all be adequately addressed at the local level. A GP interactive e-care plan provides a promising solution to a number of the barriers.

A survey of Australian public attitudes towards funding of high cost cancer medicines.

BACKGROUND: In the past decade many novel, and in some cases transformative, cancer medicines have entered the market. Their prices and the amount spent on them by governments have increased rapidly, bringing to the forefront trade-offs that must be made. In this paper we explore the Australian public's attitude towards the funding of high cost cancer medicines (HCCM) to inform reimbursement and health technology assessment (HTA) policy. METHODS: A survey consisting of 49 questions about the funding of HCCMs was developed by the investigators. Recruitment was conducted via Qualtrics. 1039 Australian adults completed the survey. RESULTS: The Australian public overwhelmingly supports funding of HCCMs (95.5 %) to enhance equity of access (97.8 %), and to respond to patients' needs (98 %). When respondents were challenged to balance equity versus access in different contexts inconsistencies emerged. Different demographic factors were important in predicting support for various strategies. CONCLUSION: Our results suggest that the Australian public strongly supports government funding of HCCMs and values both equity and access. Equally, however, the public is uncertain about how equity and access are to be balanced and achieved, and such ambivalence needs to be both further explored and accommodated in policy processes. Our results may be used by policymakers in Australia, and countries with similar systems and values, to further develop policies and processes for funding HCCMs.

What is multidisciplinary cancer care like in practice? a protocol for a mixed-method study to characterise ambulatory oncology services in the Australian public sector.

INTRODUCTION: An understanding of the real-world provision of oncology outpatient services can help maintain service quality in the face of escalating demand and tight budgets, by informing the design of interventions that improve the effectiveness or efficiency of provision. The aims of this study are threefold. First, to develop an understanding of cancer services in outpatient clinics by characterising the organisation and practice of multidisciplinary care (MDC). Second, to explore the key areas of: (a) clinical decision-making and (b) engagement with patients' supportive needs. Third, to identify barriers to, and facilitators of, the delivery of quality care in these settings. METHODS AND ANALYSIS: A suite of mixed-methods studies will be implemented at six hospitals providing cancer outpatient clinics, with a staged roll-out. In Stage One, we will examine policies, use unstructured observations and undertake interviews with key health professionals to characterise the organisation and delivery of MDC. In Stage Two, observations of practice will continue, to deepen our understanding, and to inform two focused studies. The first will explore decision-making practices and the second will examine how staff engage with patients' needs; both studies involve interviews, to complement observation. As part of the study of supportive care, we will examine the implications of an introduction of patient-reported measures (PRMs) into care, adding surveys to interviews before and after PRMs roll-out. Data analysis will account for site-specific and cross-site issues using an adapted Qualitative Rapid Appraisal, Rigorous Analysis approach. Quantitative data from clinician surveys will be statistically analysed and triangulated with the related qualitative study findings. ETHICS AND DISSEMINATION: Ethical approval was granted by South Eastern Sydney Local Health District Human Research Ethics Committee (no. 18/207). Findings will be shared with participating hospitals and widely disseminated through publications and presentations.

Enterocutaneous fistula in patients with peritoneal malignancy following cytoreductive surgery and hyperthermic intraperitoneal chemotherapy: Incidence, management and outcomes.

BACKGROUND: Cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS/HIPEC) is an effective treatment for peritoneal carcinomatosis (PC) from multiple origins, however is associated with increased complications compared to conventional gastrointestinal surgery. The aetiology of enterocutaneous fistulas (ECF) in most cases is a result of various contributing factors and therefore remains a major clinical problem, occurring in 4-34% of patients post-CRS. The aim of this study was to analyze the incidence and outcome of ECF following CRS/HIPEC. METHOD: From April 1999 to September 2015, 53 patients of 918 CRS/HIPEC procedures developed an ECF. Patient, operative and postoperative data were retrospectively analyzed to determine aetiology, classification outcome and possible contributing factors were reviewed on univariate and multivariate analysis. RESULTS: We report a 5.8% ECF rate, diagnosed at a median of 13 days. The mortality rate was 5.7% and other morbidity was significantly increased (p = 0.0001). Twenty-five (47.2%), 8 (15.1%) and 20 patients (37.7%) had low, moderate and high output ECF respectively. Patients that had a CC2 cytoreduction, abdominal VAC or smoked had a higher risk of fistula (p = 0.004, p < 0.0001, p = 0.008). Spontaneous closure was achieved in 49.2% with conservative treatment (median 29 days) and 33.9% underwent surgical intervention. Preoperative serum albumin <35 g/L (p = 0.04), PCI>17 (p = 0.025) and operation >8.6 h s (p = 0.001) were independent risk factors on multivariate analysis. Overall and 5-year survival was significantly reduced (p < 0.0001,p = 0.016). CONCLUSION: CRS/HIPEC remains an effective treatment modality for PC in selected patients with a comparable ECF incidence to reported elective gastrointestinal surgery rates. This study identifies multiple risk factors that should be considered in patients undergoing CRS/HIPEC.

It's all good on the surface: care coordination experiences of migrant cancer patients in Australia.

PURPOSE: Migrants diagnosed with cancer in Australia have high unmet need and poorer psychosocial outcomes than comparable Australian-born patients. It is possible that migrants also experience worse coordination of their cancer care. The purpose of this study was to describe migrant patients' experience of care coordination to inform the development of items for inclusion in a cancer care coordination questionnaire sensitive to the specific cultural needs of these patients. METHODS: Eighteen Chinese (Mandarin and Cantonese), Arabic and Macedonian patients and carers from two metropolitan cancer centres in Sydney, Australia, were recruited. Two focus groups and 11 telephone interviews were conducted in the participants' own language. A semi-structured interview format was utilised to qualitatively explore participants' experiences of cancer care coordination during treatment. Themes were identified using a thematic analysis. RESULTS: Cancer care was generally perceived to be well coordinated. Four themes were identified that impacted on the quality of care coordination as a direct result of a patient's migrant status: (1) the impact of language on understanding and information access, (2) the role of interpreters and (3) access to services and (4) understanding the roles and responsibilities of the team. CONCLUSIONS: Despite their care generally being well coordinated, migrants require additional assistance such as information in a form appropriate to their language proficiency and understanding of the new health system. Development of a culturally specific measure of cancer care coordination will enable evaluation of future strategies to improve care.

Australian survey of current practice and guideline use in adult cancer pain assessment and management: perspectives of oncologists.

AIMS: Cancer pain continues to be undertreated in up to half of cases, despite the availability of evidence-based guidelines. This study aimed to: (i) identify barriers and facilitators to adult cancer pain assessment and management, as perceived by Australian health professionals; (ii) establish the perceived need for new Australian guidelines and implementation strategy; (iii) identify which guidelines are used; (iv) identify barriers and facilitators to guideline use. This article focuses on the perceptions of responding oncologists. METHODS: A cross-sectional survey was administered online. Invitations were circulated via peak bodies and clinical leaders. Comments were coded independently by two researchers. RESULTS: In all 76 oncologists self-reported high concordance with evidence-based recommendations, except validated pain scales. Perceived barriers to pain management included insufficient non-pharmacological interventions, access to /coordination between services, and time. Only 22 percent of respondents reported using pain guidelines. Perceived barriers to guideline use included lack of access, awareness and any single standard. Respondents were generally supportive of new Australian guidelines and especially an implementation strategy. CONCLUSION: Barriers to evidence-based practice and guideline use identified by our survey might be addressed via a clinical pathway that gives step-by-step guidance on evidence-based practice along with a framework for evaluation. Particular attention should be paid to promoting use of validated scales, patient education and non-pharmacological interventions, training of an appropriately skilled workforce and improving care coordination. Challenges are discussed.

Should culture affect practice? A comparison of prognostic discussions in consultations with immigrant versus native-born cancer patients.

OBJECTIVE: Poor prognosis is difficult to impart, particularly across a cultural divide. This study compared prognostic communication with immigrants (with and without interpreters) versus native-born patients in audio-taped oncology consultations. METHODS: Ten oncologists, 78 patients (31 Australian-born, 47 immigrants) and 115 family members participated. The first two consultations after diagnosis of incurable disease were audiotaped, transcribed and coded. 142 consultations were included in the analysis. RESULTS: Fifty percent of doctor and 59% of patient prognostic speech units were not interpreted or interpreted non-equivalently when an interpreter was present. Immigrant status predicted few prognostic facts, and oncologist characteristics no prognostic facts, disclosed. Oncologists were significantly less likely to convey hope to immigrants (p=0.0004), and more likely to use medical jargon (p=0.009) than with Australian-born patients. Incurable disease status and a limited life span were commonly acknowledged, generally with no timeframe provided. Physical issues were discussed more commonly than emotional aspects. CONCLUSIONS: While culture did not appear to influence doctor speech, interpreters filtered or blocked much prognostic communication. PRACTICE IMPLICATIONS: Initiatives to empower all patients to attain needed information, optimise communication when an interpreter is present and train cancer health professionals in culturally appropriate care, are urgently required.

Improving outcomes for people with progressive cancer: interrupted time series trial of a needs assessment intervention.

CONTEXT: Improving the effectiveness of cancer care delivery has become a major focus of research. OBJECTIVES: This study assessed the uptake and impact of the Palliative Care Needs Assessment Guidelines and Needs Assessment Tool: Progressive Disease--Cancer (NAT: PD-C) on the outcomes of people with advanced cancer. METHODS: Given widely varying survival in people with advanced cancer, an interrupted time series design was used, with data on unmet needs, depression, anxiety, and quality of life collected from 195 patients using telephone interviews every two months, for up to 18 months. Patients completed at least two baseline interviews before health professionals were academically detailed in the use of the Palliative Care Needs Assessment Guidelines and NAT: PD-C. Health professionals completed the NAT: PD-C with patients approximately monthly for the remainder of the study. Changes in patients' outcomes were compared prior to and following the introduction of the NAT: PD-C using general estimating equations. RESULTS: Moderate to high needs across all domains were frequently seen in the preintervention phase. The use of the NAT: PD-C was associated with a significant reduction in health system and information and patient care and support needs. CONCLUSION: These resources have the potential as an efficient and acceptable strategy for supporting needs-based cancer care. Further work is required to determine their unique contribution to improvements in patient outcomes.

Evaluation of the cost-effectiveness of cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (peritonectomy) at the St George Hospital peritoneal surface malignancy program.

BACKGROUND: Cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC) are treatment approaches for peritoneal carcinomatosis that has demonstrated improved survival outcomes with acceptable complication rates. This report aims to measure and describe the survival outcomes and health care cost associated with CRS and HIPEC for peritoneal surface malignancies at a centralized tertiary institution in Australia. METHODS: The expenditure of treatment for 136 consecutive patients who underwent 159 CRS and HIPEC from June 2002 to June 2008 were obtained. Together with their survival outcomes from treatment, a cost-effectiveness analysis was performed. RESULTS: The average cost of CRS and HIPEC per patient and per life year for appendix cancer is AUD $88,423 (range, AUD $23,933-AUD $299,145) and AUD $37,737/LY; for colorectal cancer is AUD $66,148 (range, AUD $26,079-AUD $409,666) and AUD $29,757/LY; for pseudomyxoma peritonei is AUD $92,308 (range, AUD $11,562-AUD $501,144) and AUD $29,559/LY; for peritoneal mesothelioma is AUD $55,062 (range, AUD $23,261-AUD $94,104) and AUD $20,521/LY; and for other peritoneal surface malignancies is AUD $44,668 (range, AUD $31,592-AUD $70,026) and AUD $22,091/LY. CONCLUSIONS: This complex surgical treatment results in significant increases in medical costs with a parallel increase in survival for a disease that has been poorly treated, and hence may be considered as cost-effective given the observed life years gained.

Tailoring access to high cost, genetically targeted drugs.

Assessment of real cost effectiveness, with data linked to individual health outcomes while protecting patient privacy, is an essential challenge we need to meet.

Adverse event reporting in clinical trials: room for improvement.

Regulatory and ethical guidelines require clinical trial sponsors to disseminate clinical trial adverse event reports to involved investigators and human research ethics committees. Compliance with these guidelines has resulted in a major administrative burden for ethics committees. This burden does not necessarily contribute to the protection of clinical trial participants. Rationalisation of the adverse event reporting might allow better use of the data and might benefit human research ethics committees.