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Objective: People with pancreatic cancer have poor survival and management is challenging. Pancreatic cancer patients’ perceptions of their care coordination and its association with their outcomes have not been studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival. Methods: People with pancreatic cancer who were 1-8 months post-diagnosis (52 with completed resection; 58 with no resection) completed a patient-reported questionnaire which assessed their perception of care coordination, quality of life, anxiety and depression using validated instruments. Mean scores for 15 care coordination items were calculated and then ranked from highest mean score (best experience) to lowest (worst experience). Associations between care coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumour had been resected. Results: In both groups the highest-ranked care coordination items were: knowing who was responsible for coordinating care; health professionals being informed about their history; and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping; knowing symptoms they should monitor; having sufficient emotional help from staff; and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group. Significance: Our results suggest that while many core clinical aspects of care are

Objective We aimed to describe management of biliary obstruction (BO) in the context of pancreatic cancer within a population-based cohort. Methods We examined management of BO in 1863 patients diagnosed as having pancreatic cancer in 2010/2011. We used descriptive statistics and logistic regression to describe patterns of biliary stent usage, complications and duration of patency, associations between preoperative stenting and surgical outcomes, and between patient factors and management of jaundice. Results Almost half of the people in the cohort (n = 909) were jaundiced within 12 months of diagnosis. Two-thirds of these had at least 1 stent inserted. Preoperative stenting, mostly with plastic stents, occurred for 72% of patients who experienced jaundice prior to an attempted resection but was not associated with surgical outcomes. Seventy percent of the jaundiced patients who did not have an attempted resection were stented. Metal stents were less frequently replaced within 30 days than plastic (9% vs 42%). Living in a rural area was associated with reduced likelihood of having jaundice managed. Conclusions Plastic stents were still used frequently, despite guidelines recommending metal in most contexts. Patients living in rural areas were less likely to have BO managed. This work highlights the need to monitor current practice.

Aim: Palliative chemotherapy improves symptom control and prolongs survival in patients with unresectable pancreatic cancer, but there is a paucity of data describing its use and effectiveness in everyday practice. We explored patterns of chemotherapy use in patients with unresected pancreatic cancer in Australia and the impact of use on survival. Methods: We reviewed the medical records of residents of New South Wales or Queensland, Australia, diagnosed with unresectable pancreatic adenocarcinoma between July 2009 and June 2011. Associations between receipt of chemotherapy and sociodemographic, clinical and health service factors were evaluated using logistic regression. We used Cox proportional hazards models to analyze associations between chemotherapy use and survival. Results: Data were collected for 1173 eligible patients. Chemotherapy was received by 44% (n = 184/414) of patients with localized pancreatic cancer and 53% (n = 406/759) of patients with metastases. Chemotherapy receipt depended on clinical factors, such as performance status and comorbidity burden, and nonclinical factors, such as age, place of residence, multidisciplinary team review and the type of specialist first encountered. Consultation with an oncologist mitigated most of the sociodemographic and service-related disparities in chemotherapy use. The receipt of chemotherapy was associated with prolonged survival in patients with inoperable pancreatic cancer, including after adjusting for common prognostic factors. Conclusions: These findings highlight the need to establish referral pathways to ensure that all patients have the opportunity to discuss treatment options with a medical oncologist. This is particularly relevant for health care systems covering areas with a geographically dispersed population.

Background/objectives People with pancreatic cancer have high levels of anxiety and depression and reduced quality of life (QoL), but few studies have assessed these outcomes for patient-carer dyads. We therefore investigated these issues in an Australian population-based study. Methods Patients with pancreatic cancer (n=136) and many of their carers (n=84) completed the Hospital Anxiety and Depression Scale (HADS) and Functional Assessment of Cancer Therapy QoL questionnaire at a median of three months after diagnosis. Overall QoL and well-being subscales (physical, social, emotional, functional) were compared with general population norms. Intraclass correlation coefficients were used to compare anxiety, depression and QoL scores of patients and their respective carers. Results Fifteen percent of patients and 39% of carers had HADS scores indicative of anxiety and 15% of patients and 14% of carers of depression, respectively. Overall, 70% of patients and 58% of carers had QoL scores below the Queensland population average. Patients’ anxiety, depression, overall QoL, social, emotional and functional wellbeing scores were significantly related to those scores in their carers. Among patients and carers, accessing psychological help was associated with elevated anxiety. Not receiving chemotherapy was associated with elevated depression among patients and younger age was associated with poorer outcomes in carers. Conclusions More carers had symptoms of anxiety than patients with pancreatic cancer, but symptoms of depression were similarly common in patients and carers. Further research is needed to assess whether interventions to reduce patients’ distress could also improve QoL among carers, or whether carer-focussed interventions are required.

BACKGROUND: Patient and health system determinants of outcomes following pancreatic cancer resection, particularly the relative importance of hospital and surgeon volume, are unclear. Our objective was to identify patient, tumour and health service factors related to mortality and survival amongst a cohort of patients who underwent completed resection for pancreatic cancer. METHODS: Eligible patients were diagnosed with pancreatic adenocarcinoma between July 2009 and June 2011 and had a completed resection performed in Queensland or New South Wales, Australia, with either tumour-free (R0) or microscopically involved margins (R1) (n = 270). Associations were examined using logistic regression (for binary outcomes) and Cox proportional hazards or stratified Cox models (for time-to-event outcomes). RESULTS: Patients treated by surgeons who performed <4 resections/year were more likely to die from a surgical complication (versus ≥4 resections/year, P = 0.04), had higher 1-year mortality (P = 0.03), and worse overall survival up to 1.5 years after surgery (adjusted hazard ratio 1.58, 95 % confidence interval 1.07-2.34). Amongst patients who had ≥1 complication within 30 days of surgery, those aged ≥70 years had higher 1-year mortality compared to patients aged <60 years. Adjuvant chemotherapy treatment improved recurrence-free survival (P = 0.01). There were no significant associations between hospital volume and mortality or survival. CONCLUSIONS: Systems should be implemented to ensure that surgeons are completing a sufficient number of resections to optimize patient outcomes. These findings may be particularly relevant for countries with a relatively small and geographically dispersed population.

PURPOSE - This study aims to determine if the supportive care needs of people with pancreatic cancer change over time and identify the factors associated with current and future unmet needs. METHODS - Australian pancreatic cancer patients completed a self-administered survey at 0-6 months post-diagnosis (n = 116) then follow-up surveys 2 (n = 82) and 4 months (n = 50) later. The validated survey measured 34 needs across five domains. Weighted generalised estimating equations were used to identify factors associated with having ≥1 current or future moderate-to-high unmet need. RESULTS - The overall proportion of patients reporting ≥1 moderate-or-high-level need did not significantly change over time (baseline = 70 % to 4 months = 75 %), although there was a non-significant reduction in needs for patients who had a complete resection (71 to 63 %) and an increase in patients with locally advanced (73 to 85 %) or metastatic (66 to 88 %) disease. Higher levels of pain (OR 6.1, CI 2.4-15.3), anxiety (OR 3.3, CI 1.5-7.3) and depression (OR 3.2, CI 1.7-6.0) were significantly associated with current needs. People with pain (OR 4.9, CI 1.5-15.4), metastatic disease (OR 2.7, CI 0.7-10.0) or anxiety (OR 2.5, CI 0.7-8.6) had substantially higher odds of reporting needs at their next survey. The prevalence of needs was highest in the physical/daily living and psychological domains (both 53 % at baseline). Pain and anxiety had respectively the strongest associations with these domains. CONCLUSIONS - Careful and continued attention to pain control and psychological morbidity is paramount in addressing significant unmet needs, particularly for people with metastatic disease. Research on how best to coordinate this is crucial.

BACKGROUND - There are indications that pancreatic cancer survival may differ according to sociodemographic factors, such as residential location. This may be due to differential access to curative resection. Understanding factors associated with the decision to offer a resection might enable strategies to increase the proportion of patients undergoing potentially curative surgery. METHODS - Data were extracted from medical records and cancer registries for patients diagnosed with pancreatic cancer between July 2009 and June 2011, living in one of two Australian states. Among patients clinically staged with non-metastatic disease we examined factors associated with survival using Cox proportional hazards models. To investigate survival differences we examined determinants of: 1) attempted surgical resection overall; 2) whether patients with locally advanced disease were classified as having resectable disease, and; 3) attempted resection among those considered resectable. RESULTS - Data were collected for 786 eligible patients. Disease was considered locally advanced for 561 (71%) patients, 510 (65%) were classified as having potentially resectable disease and 365 (72%) of these had an attempted resection. Along with age, comorbidities and tumour stage, increasing remoteness of residence was associated with poorer survival. Remoteness of residence and review by a hepatobiliary surgeon were factors influencing the decision to offer surgery. CONCLUSIONS - This study indicated disparity in survival dependent on patients' residential location and access to a specialist hepatobiliary surgeon. Accurate clinical staging is a critical element in assessing surgical resectability and it is therefore crucial that all patients have access to specialised clinical services.

Aim Overall 5-year survival for pancreatic cancer is ~5%. Optimising the care that pancreatic cancer patients receive may be one way of improving outcomes. The objective of this study was to establish components of care which Australian health professionals believe important to optimally manage patients with pancreatic cancer. Methods Using a Delphi process, a multi-disciplinary panel of 250 health professionals were invited to provide a list of factors they considered important for optimal care of pancreatic cancer patients. They were then asked to score and then rescore (from one (no importance/disagree) to 10 (very important/agree) the factors. The mean and coefficient of variation scores were calculated and categorised into three levels of importance. Results Overall 63 (66% of those sent the final questionnaire; 25% of those initially invited) health professionals from 9 disciplines completed the final scoring of 55 statements/factors encompassing themes of presentation/staging, surgery and biliary obstruction, multi-disciplinary team details and oncology. Mean scores ranged from 3.7 to 9.7 with the highest related to communication and patient assessment. There was substantial intra- and inter- disciplinary variation in views about MDT membership and roles. Conclusion Overall the opinions of Australian health professionals reflect international guideline recommended care; however they identified a number of additional factors focusing on where patients should be treated, the importance of clear communication and the need for multi-disciplinary care which were not included in current clinical practice guidelines. Differences in priorities between specialty groups were also identified.

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

Introduction: Pancreatic cancer (PC) is the sixth leading cause of cancer death in Australia and the fourth in the United States, yet research in PC is lagging behind that in other cancers associated with a high disease burden. In the absence of agreed processes to reliably identify research areas which can deliver significant advances in PC research, the Cancer Council NSW established a strategic partnership with the NSW Pancreatic Cancer Network to define critical research issues and opportunities that could accelerate progress in this field in Australia. Materials and methods: The process consisted of five distinct stages: a literature review on recent progress in PC research, semi-structured expert interviews, a Delphi process, consumer focus groups, and a nominal group process. Information collected at each step informed the development of subsequent stages. Results: The results from these steps were refined by the nominal group into a set of seven specific pancreatic cancer research goals. The goals were disseminated and led to a new funding scheme for key PC research priorities. Discussion: This prioritisation exercise provided a much needed ‘‘road map’’ for research prioritisation in PC and served as a checklist to researchers applying for PC research grants to confirm how their research can contribute towards accelerating progress in PC research in Australia.