Search

After treatment for ovarian cancer, women want to know when they will feel 'normal' again. Our objective was to document the proportions of women with high levels of physical and emotional symptoms at the end of treatment, determine if/when they return to normal and identify groups at risk of persistent symptoms/delayed recovery.Women in the OPAL (Ovarian cancer Prognosis And Lifestyle) study who received ≥3 cycles of first-line chemotherapy and completed patient-reported outcome (PRO) questionnaires on or 6 weeks after completing chemotherapy (baseline) were included in this analysis (n = 527). PRO measures included anxiety, depression, insomnia, fatigue and wellbeing (quality-of-life) at baseline, 3, 6, 9 and 18 months post-baseline. Group-based trajectory models identified clusters of individuals who followed similar patterns. Logistic and Cox regression identified factors associated with persistent symptoms and delayed recovery, respectively.At baseline, 57% of women reported moderate-to-severe fatigue, 22% anxiety, 20% depression, 14% clinical insomnia and 45% had quality-of-life scores significantly lower than the general population. Between 50 and 75% of individual PRO scores normalised within six months, with the exception of emotional wellbeing (42%), but approximately two-in-five women still had at least one persistently poor PRO at 18 months. Women with more severe symptoms at baseline, who were younger, or had a history of anxiety/depression were more likely to have persistent symptoms or delayed recovery.Two-in-five women might never fully return to 'normal' after completing primary treatment for ovarian cancer. Those with risk factors should be triaged for early supportive interventions.

Objectives Insomnia is common in women with ovarian cancer but there are limited prospective data on the frequency and degree of impact on patients. Our objective was to determine the prevalence of insomnia over the first three years after a diagnosis of ovarian cancer; and the relationship between insomnia and quality of life. Methods OPAL (Ovarian cancer, Prognosis And Lifestyle) is a prospective study of Australian women with epithelial ovarian cancer; 894 provided information on insomnia symptoms, medications and quality of life at three, six, nine, 12, 24 and 36 months after diagnosis. Generalised linear mixed models were used to determine the relationship between insomnia and quality of life measured at the same time and three months later. Results One-quarter of women reported symptoms consistent with clinical insomnia within three years after diagnosis and an additional 13% regularly used sleep medication (total 36% affected). Excluding 7% who reported insomnia symptoms before diagnosis, 22% reported new insomnia, which reduced to 17% when also excluding women on chemotherapy. The proportion of women with clinical (14%) or subclinical (28%) insomnia symptoms was highest at three months after diagnosis. Compared to women with no insomnia, those with clinical insomnia had significantly lower quality of life measured at the same time (8.4 points lower, 95% CI: 7.2–9.5), and three months later (5.5 points lower, 95% CI: 3.4–7.6). Conclusions Over a third of women with ovarian cancer likely experience insomnia after diagnosis; this may persist and is associated with poorer quality of life.

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. To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life. 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. 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%). 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.

To quantify the prevalence of anxiety or depression (overall; melanoma-related) among people with high-risk primary melanoma, their related use of mental health services and medications, and factors associated with persistent new-onset symptoms across 4 years post-diagnosis. A longitudinal study of 675 patients newly diagnosed with tumor-stage 1b–4b melanoma. Participants completed the Hospital Anxiety and Depression Scale and answered questions about fear of cancer recurrence, use of medication, and support, serially over 4 years. We identified anxiety and depression trajectories with group-based trajectories models and factors associated with persistent symptoms with logistic regression. At diagnosis, 93 participants (14%) had melanoma-related anxiety or depression, and 136 (20%) were affected by anxiety and/or depression unrelated to melanoma. After 6 months, no more than 27 (5%) reported melanoma-related anxiety or depression at any time, while the point prevalence of anxiety and depression unrelated to melanoma was unchanged (16–21%) among the disease-free. Of 272 participants reporting clinical symptoms of any cause, 34% were taking medication and/or seeing a psychologist or psychiatrist. Of the participants, 11% (n = 59) had new-onset symptoms that persisted; these participants were more likely aged

Knowledge on the course of symptoms patients with ovarian cancer experience is limited. We documented the prevalence and trajectories of symptoms after first-line chemotherapy using the Measure of Ovarian Symptoms and Treatment concerns (MOST).A total of 726 patients who received platinum-based chemotherapy for ovarian cancer were asked to complete the MOST every 3 months, beginning 6 months post-diagnosis and continuing for up to 4 years. We used descriptive statistics to examine temporal changes in MOST-S26 index scores for disease or treatment-related (MOST-DorT), neurotoxicity (MOST-NTx), abdominal (MOST-Abdo), and psychological (MOST-Psych) symptoms, and wellbeing (MOST-Wellbeing) and selected individual symptoms. We used group-based trajectory models to identify groups with persistently poor symptoms.The median MOST-Abdo, MOST-DorT and MOST-Wellbeing score were worst at chemotherapy-end but improved and stabilised by 1, 3 and 12 months after treatment, respectively. The median MOST-NTx score peaked at 1 month after treatment before improving, while the median MOST-Psych score did not change substantially over time. Long-term moderate-to-severe fatigue (32%), trouble sleeping (31%), sore hands and feet (21%), pins and needles (20%) and anxiety (18%) were common. Trajectory models revealed groups of patients with persistent symptoms had MOST-DorT scores above 30 and MOST-NTx scores above 40 at treatment-end.Although many patients report improvements in symptoms by 3 months after first-line chemotherapy for ovarian cancer, patients who score 30/100 on MOST-S26-DorT or 40/100 on MOST-S26-NTx at the end of chemotherapy are likely to have persistent symptoms. The MOST could triage this at-risk subset for early intervention.

Melanoma is more aggressive with poorer outcomes in older than younger patients. Older age has been associated with greater tumour thickness, higher rates of ulceration, and high mitotic rates, but it is not clear whether poorer outcomes in the elderly are solely due to these tumour-specific features or to additional effects of age-related decline in in immune surveillance, greater comorbidity, and age-related behaviours such as delayed diagnosis.

We aimed to examine how women construct their experiences of chemotherapy treatment for ovarian cancer. Through semistructured interviews, we explored the accounts of 18 Australian women about their experiences within a broader cultural imperative—or discourse—to “think positively.” By applying a critical realist lens to the analysis, we identified two discursive themes that shaped women’s accounts. The “feeling different and managing support” theme highlights the identity challenges women faced because of the lack of formal support for ovarian cancer. Conversely, the theme “women’s reconstructions of difficult experiences” illustrates the imperative for women to present a positive story as a way of restoring their position of a lucky and stoic survivor. Such speaking served to mask some of the underlying difficulties that were part of these women’s experiences. Health care professionals need to consider looking for the hidden stories of vulnerability that lie beneath the triumphant ones.

Neuroendocrine tumours (NETs) are rare, and when metastatic NETs are incurable, the tumours are frequently slowly growing. Patients may be confronted with disease-specific problems and distinct issues when accessing health-care. We aimed to assess perceptions of care coordination, identify unmet needs, and examine if these varied by whether patients received specialist oncology care in a single hospital or shared between that and another hospital. We also quantified anxiety, depression, and NET-related physical symptoms. We conducted a cross-sectional survey of 111 NET patients managed at Royal Brisbane and Women’s Hospital. Validated surveys measured care coordination (CCCQ), unmet needs (SCNS-SF34), anxiety and depression (HADS), and quality of life and symptoms (FACT). Participants were between 2 months and 27 years after diagnosis. The worst-ranked items on the CCCQ related to health professionals having a full case history, providing information about financial entitlements and asking about how well patients and their families were coping. People with shared care were significantly less satisfied with some aspects of care. One in three participants reported a moderate-to-high unmet need for help with fatigue and one in four with psychological concerns about their cancer spreading, uncertainty about their future, and about the worries of those close to them. Overall, 30% of participants had anxiety and 20% had depression and they had significantly lower physical and emotional well-being compared to the general population. NETs are experienced as a chronic illness. In addition to ongoing psychological and physical symptom management, improvements to case history documentation and discussions about coping and finance are recommended.

We aimed to describe management of biliary obstruction (BO) in the context of pancreatic cancer within a population-based cohort.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.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.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.

This review aimed to determine the prevalence of met and unmet needs, and the risk factors for unmet needs among people affected by gynaecological cancer. The review was undertaken using the PRISMA guidelines. Eligible studies were identified though a range of electronic databases in October and November 2016. Study quality was independently appraised by two people. Thirty-seven studies were included (1 review, 24 quantitative and 12 qualitative). The evidence was of mixed quality. The total burden of needs affecting women with gynaecological cancer and also their caregivers predominately related to comprehensive care and psychological concerns. The major moderate-to-high-level unmet needs of women with gynaecological cancer were for help explicitly with fear of recurrence, worries of caregivers and fatigue, and for women who developed lymphoedema were with pain and associated costs. Qualitative studies identified disease-specific needs related to sexuality issues (including fertility, sexual functioning, relationship concerns, managing vaginal changes, pregnancy care, premature menopause), genetic testing and disease-specific peer support. Women at risk of having unmet needs include those who are younger, with advanced disease, with lymphoedema or a high symptom burden, are unable to work, have mental health issues, have poor social support or live in rural or remote locations. Understanding the needs of women with gynaecological cancer and their caregivers is essential to improving care and outcomes. Current data are limited thus there is a need for qualitative studies of patient-caregiver dyad and vulnerable subgroups and well-designed quantitative studies of women with each type of gynaecological and their caregivers.

Objective: To characterise use of support services in patients diagnosed with high-risk primary melanoma by their location of residence. Methods: In a cross-sectional study of 787 patients with histologically-confirmed clinical stage 1B-2 melanoma, we estimated odds ratios (ORs) using regression models to assess the association of support service use with residence in rural, regional or urban areas. We also evaluated demographic and clinical correlates of support service use. Results: Among 113 rural patients, 33 (29%) used support services around time of diagnosis compared to 88 (39%) of 224 regional participants and 164 of 448 (37%) urban participants. Regional participants more commonly used support services compared to rural participants (OR 1.84; CI 1.09-3.10), but there was no association with urban versus rural residence (OR 1.32; CI 0.82-2.13). As well, females (OR 1.58; CI 1.15-2.18), those

Background: Colorectal cancer affects a wide range of working-age people. Little is known about the consequent work limitations. Objective: The aim of this study was to understand the extent and changing nature of work-related limitations of middle-aged (45-64 years) people over the first 12 months of colorectal cancer. Methods: Surveys were administered to participants recruited via the Queensland Cancer Registry, at 6 and 12 months after diagnosis. Among those who returned to work, the Work Limitations Questionnaire measured 4 job performance domains (time management, physical, mental-interpersonal, and output demands) and an overall productivity score. Open-ended questions supplemented the Work Limitations Questionnaire, and responses were thematically analyzed. Results: Of 239 participants, 8% did not continue in the study, and 20% left employment by 12 months, leaving 171 participants eligible for this analysis. Open-ended responses for why participants stopped work included bowel problems and stoma, loss of strength, and medication adverse effects. At 12 months, 22% to 39% of participants reported work limitations, but there was no overall significant change in work limitations between 6 and 12 months. Qualitative data highlighted the key work-related issues were changes in work functioning, attitudes of employers and colleagues, financial pressures, and emotional responses. Conclusions: While a significant proportion left work because of treatment-related problems, and the majority of participants did not experience workplace limitations, some reported considerable work-related challenges.Implications for Practice: Discussions with health professionals about the possible impact of treatment adverse effects on employment, good communication with employers, and workplace flexibility may facilitate return to work for this population.

PURPOSE: ECHO is a phase III, randomised, controlled trial (ACTRN12614001311640) evaluating the effect of exercise during first-line chemotherapy for women with ovarian cancer on progression-free survival (target sample, n=500). We report here preliminary findings on exercise safety and dose undertaken for the consenting women randomised to the exercise intervention. METHODS: Exercise-related adverse events (EAEs) were classified as grades 1-5 according to CTC-AE, and were assessed for exercise causality (not related, unlikely, possible, likely, certain) and whether modification to exercise prescription was required. Weekly exercise dose undertaken was recorded as minutes, intensity, mode and frequency. Data were collected by an Exercise Physiologist during weekly contact with participants over the intervention duration (duration is based on length of neo- and/or adjuvant chemotherapy; ~18 weeks). Exercise was considered safe if there were no grade 3 or higher EAEs, and in line with the new ACSM guidelines, the intervention was considered feasible for a participant if they completed ≥150 minutes of weekly, mixed-mode exercise ≥75% of intervention weeks. RESULTS: To date, we have recruited 225 women, 113 of whom have been randomised to the exercise intervention. One or more EAEs was reported by 42% of participants in the exercise intervention. Typical grade 1 (85% of EAEs reported) and 2 EAEs included delayed onset muscle soreness or adverse fluctuations in treatment-related symptoms (e.g., pain at surgical site, fatigue) that may have been caused by exercise. While no grade 3 or higher EAEs were reported, 58% required exercise intervention modification (i.e., change in minutes, intensity, mode or frequency). The median weekly minutes of exercise reported was 186.5 (range: 0-610), yet only 34% of participants completed ≥150min/week of mixed-mode exercise for ≥75% of the intervention duration. CONCLUSION: Exercise is proving safe during chemotherapy for ovarian cancer. Further, while an average of 150 minutes of mixed-mode exercise each week is feasible, flexibility in prescription is needed to accommodate individual circumstances (such as EAEs or typical treatment-related fluctuations in side effects) that inevitably present throughout the course of chemotherapy for ovarian cancer.

Objective This study aimed to examine the association between change in employment participation for a 12-month period and quality of life among individuals with colorectal cancer compared with general population controls. Methods This was a prospective, registry-based study that enrolled middle-aged (45-64 years) residents of Queensland, Australia, who were in the paid workforce, and newly diagnosed with colorectal cancer. Participants completed structured telephone interviews at 6 and 12 months after diagnosis assessing quality of life and employment status ("retired/ceased work," "increased work," "decreased work," and "maintained work"). Survivors were matched on demographic and occupation characteristics in a 1:2 ratio with individuals from the general population who had participated in both Wave 10 (2010) and 11 (2011) of the Household, Income and Labour Dynamics in Australia survey. Results Almost half (66/148, 45%) of colorectal cancer survivors ceased or decreased work during the study period, compared with 27% in the control group (79/295, P = .001). Physical and mental well-being did not fluctuate over time in the general population. However, there were significant improvements in physical well-being, functional well-being, and overall quality of life during the study period for participants with colorectal cancer. At 12 months postdiagnosis, participants with colorectal cancer who maintained or increased work had significantly better functional well-being and overall quality of life compared with those who decreased work or retired. Conclusions A diagnosis of colorectal cancer often impairs the ability of a person to maintain work. The impairments are predominantly physical and functional. Interventions to assist with occupational rehabilitation should be trialed.

ObjectivesTo document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision.MethodsA total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care.ResultsMostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients’ medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees’ comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols.Significance of resultsThere is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.

Importance: With emerging new systemic treatments for metastatic melanoma, early detection of disease recurrence is increasingly important.Objective: To investigate the risk of melanoma recurrence in patients with a localized melanoma at a high risk of metastasis.Design, Setting, and Participants: A total of 1254 patients with newly diagnosed, histologically confirmed tumor category T1b to T4b melanoma in Queensland, Australia, were recruited prospectively between October 1, 2010, and October 1, 2014, for participation in a cohort study. Data analysis was conducted from February 8, 2018, to February 20, 2019. We used Cox proportional hazards regression analysis to examine associations between patient and tumor factors and melanoma recurrence.Exposures: Disease-free survival (DFS) by melanoma tumor category defined by the 7th vs 8th editions of the AJCC Cancer Staging Manual (AJCC 7 vs AJCC 8).Main Outcomes and Measures: Melanoma recurrences were self-reported through follow-up questionnaires administered every 6 months and confirmed by histologic or imaging findings.Results: Of 1254 patients recruited, 825 individuals (65.8%) agreed to participate. Thirty-six were found to be ineligible after providing consent and a further 89 patients were excluded after reclassifying tumors using AJCC 8, leaving 700 participants with high-risk primary melanoma (mean [SD] age, 62.2 [13.5] years; 410 [58.6%] men). Independent predictors of recurrence were head or neck site of primary tumor, ulceration, thickness, and mitotic rate greater than 3/mm2 (hazard ratio, 2.36; 95% CI, 1.19-4.71). Ninety-four patients (13.4%) developed a recurrence within 2 years of diagnosis: 66 tumors (70.2%) were locoregional, and 28 tumors (29.8%) developed at distant sites. After surgery for locoregional disease, 37 of 64 patients (57.8%) remained disease free at 2 years, 7 patients (10.9%) developed new locoregional recurrence, and 20 patients (31.3%), developed distant disease. Two-year DFS was similar when comparing AJCC 7 and AJCC 8, for T1b (AJCC 7, 253 [93.3% DFS]; AJCC 8, 242 [93.0% DFS]) and T4b (AJCC 7 and AJCC 8, 50 [68.0% DFS] category tumors in both editions. Patients with T2a to T4a tumors who did not have a sentinel lymph node biopsy (SLNB) at diagnosis had lower DFS than patients with the same tumor category and a negative SLNB (T2a: 136 [91.1%; 95% CI, 86.4-95.9] vs 96 [96.9%; 95 % CI, 93.4-100.0]; T4a: 33 [78.8%; 95% CI, 64.8-92.7] vs 6 [83.3; 95% CI, 53.5-100.0]).Conclusions and Relevance: These findings suggest that 13.4% of patients with a high-risk primary melanoma will experience disease recurrence within 2 years. Head or neck location of initial tumor, SLNB positivity, and signs of rapid tumor growth may be associated with primary melanoma recurrence.

We explored how people negotiate, and respond to, identity transitions following a diagnosis of pancreatic cancer. Interviews with 19 people with pancreatic cancer were analysed using thematic discourse analysis. While discursively negotiating two transitions, ‘moving from healthy to ill’ and ‘moving from active treatment to end-of-life care’, participants positioned themselves as ‘in control’, ‘optimistic’ and managing their health and illness. In the absence of other discourses or models of life post-cancer, many people draw on the promise of survival. Moving away from ‘survivorship’ may assist people with advanced cancer to make sense of their lives in a short timeframe.

Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants completed semi-structured interviews at the end of the intervention about acceptability. These were analysed using thematic analysis. Results: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was highly acceptable. Participants unanimously preferred the telephone over video-conferencing and to receive counselling separately from their carer/patient. The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. Suggested improvements included a welcome pack about their nurse-counsellor and that sessions should continue beyond nine sessions if required. Conclusions: The PREPARES intervention was feasible and highly acceptable. This low-cost intervention provided much-needed support to people affected by this devastating disease.

Core components of survivorship care include treatment of late and long-term effects, care coordination, promotion of psychological well-being, health and addressing special populations' needs. Women affected by gynaecological cancer and their caregivers can experience disease-specific issues. This review presents an overview of survivorship interventions that have been trialled among this population. Databases were searched in October/November 2016 to identify eligible studies. Titles, abstracts then full-text were assessed for inclusion by two reviewers until consensus was reached. Data were abstracted using standard tables. Study quality was independently appraised. Twenty-eight articles were included (five reviews; 23 trials). In regards to late and long-term treatment effects, our review found mounting high-level evidence for the effectiveness of psycho-educational programmes to improve physical aspects of sexual function and for exercise interventions for reducing fatigue. We also found emerging evidence for nurse-led follow-up care to improve care coordination and cognitive behavioural therapy to improve psychological wellbeing. There were gaps in the evidence for interventions to effectively address psychosexual issues specific to gynaecological cancer and needs of caregivers. Further research is required to explore strategies to improving psychosexual concerns after gynaecological cancer and the dynamics and supportive care needs of the patient-partner dyad.

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.

Many women with ovarian cancer experience significant chemotherapy-related adverse effects during treatment and thus cannot complete it without dose reductions and/or delays. There is some indication that chemotherapy completion is associated with improved survival, although currently little is known about what helps women get through chemotherapy. The aim of this study was to explore women's accounts of the factors they believed were helpful during their ovarian cancer treatment. Using a qualitative approach within a critical realist framework, we conducted interviews with 18 women who had received chemotherapy for ovarian cancer and analyzed the data thematically. We identified 3 main themes related to women's experiences of dealing with chemotherapy: "optimistic tenacity," which illustrates a specific stoic identity that women assumed during treatment; "self-care," which reflects the health behaviors and activities women engaged in and lifestyle adjustments they made; and "support systems," which emphasizes the importance of social, emotional, and medical support and the specific needs shared by women undergoing treatment for ovarian cancer. Our findings contribute to a deeper understanding of women's unique experiences of treatment that may influence whether they complete chemotherapy for ovarian cancer. This study highlights the central role of women's optimistic determination within a wider self-caring and well-supported context of treatment; we aim to provide feedback and guidance to health professionals caring for women with ovarian cancer.

1 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. 2 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. 3 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. 4 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: Knowledge of variation in diagnosis and surgery in high-risk primary melanoma patients is limited. We assessed frequency and determinants of diagnostic procedures, wide local excision (WLE) and sentinel lymph node biopsy (SLNB).

Engaging in positive health behaviours can improve quality of life amongst cancer survivors, whether this facilitates return to work is unknown. We examined associations of health behaviours with return to work outcomes following a diagnosis of colorectal cancer in middle-aged men and women (45–64 years). We recruited 239 participants through the Queensland Cancer Registry between January 2010 and September 2011. Data were collected through telephone-administered interviews and postal questionnaires at 6 and 12 months post-diagnosis. Logistic regression examined likelihood of ceasing or reducing work, and Cox regression examined factors associated with time to return to work. No significant associations were observed between health behaviours (fruit and vegetables consumption, alcohol consumption, smoking status, physical activity or sitting time) at 6 months and ceasing or reducing work at 12 months post-diagnosis. Participants who reported excessive sleep (≥9 h/day) were 2.69 times more likely to reduce work time or retire (relative to those sleeping the recommended 7 to

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 five domains (Supportive Care Needs Survey-Short Form) 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.

BACKGROUND: There are significant disparities in cancer outcomes between Indigenous and non-Indigenous Australians. Identifying the unmet supportive care needs of Indigenous Australians with cancer is imperative to improve their cancer care. The purpose of the current study was to test the psychometric properties of a supportive cancer care needs assessment tool for Indigenous people (SCNAT-IP) with cancer. METHODS: The SCNAT-IP was administered to 248 Indigenous Australians diagnosed with a range of cancer types and stages, and who received treatment in 1 of 4 Queensland hospitals. All 39 items were assessed for ceiling and floor effects and were analyzed using exploratory factor analysis to determine construct validity. Identified factors were assessed for internal consistency and convergent validity to validated psychosocial tools. RESULTS: Exploratory factor analysis revealed a 4-factor structure (physical and psychological, hospital care, information and communication, and practical and cultural needs) explaining 51% of the variance. Internal consistency of the 4 subscales was good, with Cronbach alpha reliability coefficients ranging from.70 to.89. Convergent validity was supported by significant correlations between the SCNAT-IP with the National Comprehensive Cancer Network Distress Thermometer (correlation coefficient [r] = 0.60; P

Most women with ovarian cancer present with advanced stage disease and face aggressive treatments, recurrence, and possible death, yet little is known about how they cope. Our objective was to identify coping strategies used by women with ovarian cancer and their trajectories of use after diagnosis and to assess if coping trajectories are associated with subsequent anxiety, depression, or quality of life. Women with ovarian cancer completed questionnaires including the Brief-COPE, HADS, and FACT at 3, 6, and 9 months after diagnosis and the HADS and FACT at 12 months. Using data from 634 women who completed the 3-month questionnaire, factor analysis was conducted to identify coping strategy clusters. Trajectory modeling was used to assess patterns of coping over time. Associations between coping trajectory from 3 to 9 months and patient-reported outcomes at 12 months were investigated using general linear models. Three coping strategy clusters were identified. Use of “taking action/positive framing” followed four distinct trajectories over time: low-stable (44%), medium-stable (32%), medium-decreasing (11%), high-stable (12%). Use of “social/emotional support” had four trajectories: low-increasing (7%), low-decreasing (44%), medium-decreasing (40%), and high-stable (8%). Women either “accepted their reality” (26%) or “used some denial” (74%). Women who accepted reality reported significantly less anxiety and depression and better quality of life at 12 months. Women with high-stable use of taking action/positive framing reported less depression. Women with high-stable use of social/emotional support reported better quality of life. Strategies to assist women with acceptance, action-planning, positive-framing, and maintaining psychosocial support should be considered.

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 well-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 postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions 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 (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 tumor 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 the 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 of results:Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancer patients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.

Financial hardship may affect up to 30% of cancer survivors, however, little research has addressed the effect of employment change on financial hardship. This study compared the self-reported financial hardship of middle-aged (45–64 years) colorectal cancer survivors (n = 187) at 6 and 12 months following diagnosis with that of a matched general population group (n = 355). Colorectal cancer survivors were recruited through the Queensland Cancer Registry, Australia; data from the Household Income and Labour Dynamics in Australia (HILDA) Survey were used for the general population group. Pearson chi-square tests were used to assess the differences in proportions between the two groups and McNemar tests to assess differences across time among the same group. Generalised linear modelling was performed to produce prevalence ratios. A higher proportion of workers with colorectal cancer reported financial strain (money shortage for living essentials) at 6 months (15%) but eased and was comparable to the comparison group at 12 months (7%). Middle-aged working cancer survivors who ceased or reduced work were more likely to report not being financially comfortable, compared with those who had continued work (adjusted prevalence ratio 1.66, 95%CI: 1.12, 2.44) at 12 months. Health professionals, employers and government services should address the impact of impaired employment on financial hardship among cancer survivors.

ObjectiveThe aim of this paper is to determine levels of supportive care needs, anxiety, depression and symptoms amongst patients newly diagnosed with localised invasive primary melanoma and if these varied amongst patients who had a sentinel lymph node biopsy (SLNB). We also considered quality of life compared with general population norms.

The purpose of this study is to examine the prevalence, sociodemographic and clinical predictors, and physical and psychosocial correlates of unmet needs among women 3–5 years following treatment for endometrial cancer. Women with endometrial cancer completed a survey around the time of diagnosis and again 3–5 years later. The follow-up survey asked women about their physical and psychosocial functioning and supportive care needs (CaSUN). Multivariable-adjusted logistic regression identified the predictors and correlates of women’s unmet needs 3–5 years after diagnosis. Of the 629 women who completed the cancer survivors’ unmet needs measure (CaSUN), 24 % (n = 153) women reported one or more unmet supportive care needs in the last month. Unmet needs at 3–5 years post-diagnosis were predicted by younger age (OR = 4.47; 95 % CI: 2.09–9.56) and advanced disease stage at diagnosis (OR = 2.47; 95 % CI: 1.38–4.45) and correlated with greater cancer symptoms (OR = 1.78; 95 % CI: 1.05–3.02), lower limb swelling (OR = 2.50; 95 % CI: 1.51–4.15), symptoms of anxiety (OR = 2.21; 95 % CI: 1.31–3.72), and less availability of social support (OR = 3.42; 95 % CI: 1.92–6.11). Women with a history of comorbidities (OR = 0.47; 95 % CI: 0.27–0.82) and those living in a rural area at the time of diagnosis (OR = 0.56; 95 % CI: 0.34–0.92) were less likely to report unmet needs. Sociodemographic, health, and psychosocial factors seem important for identifying women who will or will not have unmet needs several years following endometrial cancer. Longitudinal assessments of people’s needs over the course of their cancer trajectory may be an effective way to identify areas that should receive further attention by health providers.

BACKGROUND: Knowledge about supportive care needs in patients with cutaneous invasive melanoma is scarce. We examined the unmet needs of melanoma patients treated with surgery and factors associated with these needs to assist health professionals identify areas needing clinical attention. PATIENTS AND METHODS: Cross-sectional multisite survey of UK patients ascertained 3 months to 5 years after complete resection of stage I-III cutaneous melanoma. Participants completed the following validated questionnaires: Supportive Care Needs Survey (SCNS-SF34 with melanoma module), Hospital Anxiety and Depression Scale and 51-item Functional Assessment of Cancer Therapy-Melanoma quality-of-life scale. RESULTS: A total of 472 participants were recruited [319 (67%) clinical stage I-II). Mean age was 60 years (standard deviation = 14) and 255 (54%) were female. One hundred and twenty-three (27%) participants reported at least one unmet need (mostly 'low' level). The most frequently reported unmet needs were fears of cancer returning (n = 138, 29%), uncertainty about the future (n = 119, 25%), lack of information about risk of recurrence (n = 112, 24%) and about possible outcomes if melanoma were to spread (n = 91, 20%). One hundred and thirty-eight (29%) participants reported anxiety and 51 (11%) depression at clinical or subclinical levels. Patients with nodal disease had a significantly higher level of unmet supportive care needs (P < 0.001) as did patients with anxiety or depression (P < 0.001). Key correlates of the total SCNS-SF34 score for unmet supportive care needs were younger age (odds ratio, OR = 2.23, P < 0.001) and leaving school early (OR = 4.85, P < 0.001), while better emotional (OR = 0.89, P < 0.001) and social well-being (OR = 0.91, P < 0.001) were linked with fewer unmet needs. Neither patients' sex nor tumour thickness was associated with unmet needs. CONCLUSIONS: Around a quarter of melanoma patients may have unmet support needs in the mid to long term after primary treatment. In particular, patients who are younger, less educated, distressed or socially isolated could benefit from more support.

We examined whether sociodemographic, physical, reproductive, psychological and clinical factors at the time of diagnosis were related to women’s sexual well-being 3–5 years following treatment for endometrial cancer. Of the 1,399 women in the Australian National Endometrial Cancer Study, 644 completed a follow-up questionnaire 3–5 years after diagnosis. Of these, 395 women completed the Sexual-Function Vaginal Changes Questionnaire, which was used to assess sexual well-being. Based on two questions assessing worry and satisfaction with their sexuality, women were classified into lower and higher sexual well-being. Multivariable-adjusted logistic regression models were used to examine sexual well-being 3–5 years following cancer treatment and the factors associated with this at diagnosis and at follow-up. Of the 395 women, 46 % (n = 181) were categorized into the “higher” sexual well-being group. Women who were older (odds ratio [OR] = 1.97; 95 % confidence limit [CI], 1.23–3.17), high school educated (OR = 1.75; 95 % CI, 1.12–2.73), who reported good mental health at the time of diagnosis (OR = 2.29; 95 % CI, 1.32–3.95) and whose cancer was treated with surgery alone (OR = 1.93; 95 % CI, 1.22–3.07) were most likely to report positive sexual well-being. At 3–5 years post-diagnosis, women with few symptoms of anxiety (OR = 2.28; 95 % CI, 1.21–4.29) were also most likely to report positive sexual well-being. Psychological, sociodemographic and treatment factors are important to positive sexual well-being post-cancer. Care that focuses on maintaining physical and psychosocial aspects of women’s lives will be more effective in promoting positive sexual well-being than care that focuses solely on physical function.

Objective To quantitatively assess and compare the quality of life (QoL) of women with a self-reported diagnosis of lower limb lymphedema (LLL), to women with lower limb swelling (LLS), and to women without LLL or LLS following treatment for endometrial cancer. Methods 1399 participants in the Australian National Endometrial Cancer Study were sent a follow-up questionnaire 3–5years after diagnosis. Women were asked if they had experienced swelling in the lower limbs and, if so, whether they had received a diagnosis of lymphedema by a health professional. The 639 women who responded were categorized as: Women with LLL (n=68), women with LLS (n=177) and women without LLL or LLS (n=394). Multivariable-adjusted generalized linear models were used to compare women's physical and mental QoL by LLL status. Results On average, women were 65years of age and 4years after diagnosis. Women with LLL had clinically lower physical QoL ( M =41.8, SE =1.4) than women without LLL or LLS ( M =45.1, SE =0.8, p =.07), however, their mental QoL was within the normative range ( M =49.6; SE =1.1 p =1.0). Women with LLS had significantly lower physical ( M =41.0, SE =1.0, p =.003) and mental QoL ( M =46.8; SE =0.8, p M =50.6, SE =0.8). Conclusion Although LLL was associated with reductions in physical QoL, LLS was related to reductions in both physical and mental QoL 3–5years after cancer treatment. Early referral to evidence-based lymphedema programs may prevent long-term impairments to women's QoL.

Although most women diagnosed with ovarian cancer initially respond to first-line chemotherapy, the vast majority eventually relapses and requires retreatment with second-line chemotherapy. Patient response is classified as either platinum sensitive or platinum resistant on the basis of the time of relapse after first-line treatment. A cancer with a progression-free interval of more than 6 months after completion of first-line chemotherapy is classified as “platinum-sensitive disease” and responds well to retreatment. A cancer with a progression-free interval of less than 6 months after completion of first-line chemotherapy is classified as “platinum-resistant disease” and responds poorly to second-line retreatment. Cure is not possible in patients with platinum-resistant recurrent ovarian cancer, and long-term progression-free survival is rare. The goal of care in these patients should be to maximize their quality of life. The aim of this population-based longitudinal study was to determine whether quality of life improves after second-line chemotherapy among women with platinum-resistant recurrent ovarian cancer. A secondary aim was to evaluate treatment response. Data for 172 women from 2 studies were combined. All participants were treated with chemotherapy for recurrent ovarian cancer and completed a validated quality of life questionnaire every 3 months. Change in quality of life during the first 6 months after second-line chemotherapy was analyzed using mixed effect models. A comparison group was composed of women with platinum-sensitive disease. Among the 172 patients, 44 (25%) were classified as having platinum-resistant disease. After the start of second-line chemotherapy, there was no significant increase or decrease in quality of life of women with platinum-resistant disease (least square mean scores at chemotherapy start, 3 months later, and 6 months later: 107, 105, and 103, respectively), although 26% reported a meaningful increase and 31% reported a meaningful decline. One third of the women with platinum-resistant cancer responded (11% complete and 21% partial response) to second-line chemotherapy; the response rate increased to 54% among the subset retreated with platinum-based agents with or without other agents. Preliminary subgroup analysis suggested that quality of life in women whose disease responded may be higher at the start of chemotherapy (median score, 121 vs 110). These findings show that the overall quality of life is maintained among women with recurrent platinum-resistant disease after retreatment with chemotherapy; however, some patients showed a meaningful increase whereas some showed a decline.

BACKGROUND: Connections to people and place are particularly important for Indigenous Australians. It is currently unknown what role social support plays in helping this population cope with a diagnosis of cancer. AIMS: This study describes components of social support available for Indigenous Australians with cancer and investigates its association with distress and/or worry. METHODS AND RESULTS: Secondary data of a cross‐sectional study involving 248 Aboriginal and Torres Strait Islander cancer patients was used to map out social support dimensions (structural, functional, and appraisal) using Cheng et al's(27) social support framework. Distress was measured by the distress thermometer and worry by the worry chart. Overall, 67% of participants reported significant distress, and 49% worry about their cancer. In the functional dimension of social support, participants who had someone caring for them during diagnosis and treatment had increased odds of reporting worry. In the appraisal dimension, participants with unmet social support needs had significantly increased odds of reporting distress and worry compared with participants who were satisfied with the support received. Components in the structural dimension were not associated with distress or worry. CONCLUSION: While many aspects of social support did not appear to affect cancer distress or worry, having a carer or having unmet social support needs had a negative impact on these outcomes. Health professionals should consider the worries of the bonded relationship and monitor patients' needs and their satisfaction with the support provided as an integral part of cancer care.

Background: Melanoma survivors are at high risk of further primary melanomas. Objective: To assess sun behavior after melanoma diagnosis and in relation to further primary melanomas. Methods: We applied repeated measures latent class analysis to reported primary prevention behavior at time of diagnosis and every 6 months for 2 years after diagnosis in patients with clinical stage IB or II melanoma. Correlates of behavior trajectories and risk of subsequent primaries were determined by using multivariable logistic and Cox regression analyses, respectively. Results: Among the 448 male and 341 female patients, sunscreen use fell into 3 trajectories: stable never-use (26% of males and 12% of females), stable sometimes-use (35% of males and 29% of females), and increased to often-use (39% of males and 59% of females). Most reduced their weekend sun exposure, but in 82% of males and 69% of females it remained increased. Males, smokers, the less educated, those who tanned, and those not self-checking their skin were more likely to have trajectories of inadequate protection. Patients with a history of melanoma before the study doubled their risk of another primary melanoma in the next 2 years if sunscreen use in that time was inadequate (hazard ratio, 2.45; 95% confidence interval, 1.00-6.06). Limitations: Patient-reported data are susceptible to recall bias. Conclusion: Our results may assist clinicians in identifying patients not using adequate sun protection and providing information for patient counseling.

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.

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. 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. 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. 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.

We aimed to describe variations in unmet supportive care needs of patients diagnosed with localised melanoma at high risk of recurrence and factors associated with initial and persisting moderate-to-high needs. We ascertained 386 patients diagnosed with clinical stage IB-II melanoma and administered surveys every 6 months for 2 years. The proportion experiencing at least one moderate-to-high need was assessed among salient subgroups: 306 patients with no previous melanoma and 80 with previous melanoma at enrolment, 30 who experienced disease recurrence during follow-up and 31 who developed another primary. Baseline factors associated with (a) needs at enrolment and (b) persistent needs over 2 years (or as long as disease-free) were identified by logistic regression analyses. The proportion of patients with needs substantially declined over the first 6 months (if no previous melanoma, from 48 to 22 %, p

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.

OBJECTIVES: To develop a composite score for the quality of care for patients with pancreatic cancer in Australia; to determine whether it was affected by patient and health service-related factors; to assess whether the score and survival were correlated. DESIGN, PARTICIPANTS AND SETTING: We reviewed medical records of patients diagnosed with pancreatic cancer during July 2009 - June 2011 and notified to the Queensland and New South Wales cancer registries. DESIGN AND MAIN OUTCOME MEASURES: Participants were allocated proportional quality of care scores based on indicators derived from a Delphi process, ranging from 0 (lowest) to 1 (highest quality care). Associations between patient and health service-related factors and the score were tested by linear regression, and associations between the score and survival with Kaplan-Meier and Cox proportional hazards methods. RESULTS: Proportional quality of care scores were assigned to 1571 patients. Scores for patients living in rural areas were significantly lower than for those in major cities (adjusted difference, 11%; 95% CI, 8-13%); they were higher for patients in the least socio-economically disadvantaged areas (v most disadvantaged areas: 8% higher; 95% CI, 6-11%), who were younger, had better Eastern Cooperative Oncology Group performance status, or who first presented to a hospital with a high pancreatic case volume. Higher scores were associated with improved survival; after adjusting for patient-related factors, each 10 percentage point increase in the score reduced the risk of dying by 6% (hazard ratio, 0.94; 95% CI, 0.91-0.97). CONCLUSION: Geographic category of residence may influence the quality of care received by patients with pancreatic cancer, and survival could be improved if they received optimal care.

Objective: The objective of this paper is to determine changes in supportive care needs after first-line treatment for ovarian cancer and identify risk factors for future unmet needs. Methods: Two hundred and nineteen women with ovarian cancer were asked to complete a baseline survey 6-12 months after diagnosis then follow-up surveys every 6 months for up to 2 years. The validated Supportive Care Needs Survey-Short Form measured 34 needs across five domains. Logistic regression identified baseline variables associated with future needs. Results: At baseline, standardized median scores (possible range 0-100, least-to-greatest need) within the psychological, system/information, physical, patient care and sexuality need domains were 25, 20, 15, 15 and 8, respectively. The most frequently reported moderate-to-high unmet needs at baseline were needing help with fear about cancer spreading (25%), concerns about worries of those close (20%), being informed about things to help get well (20%), uncertainty about future (19%) and lack of energy (18%). All except the item about being informed were still reported as unmet needs by ≥15% of women 2 years later. Median health system/information, patient care and sexuality need scores decreased over 2 years (p < 0.05), whereas psychological and physical scores remained constant. Risk factors for having ≥1 moderate-to-high unmet overall, psychological or physical need 1-2 years after baseline included older age, advanced disease, unmet need, anxiety, depression, insomnia and less social support at baseline. Conclusion: Women with ovarian cancer report needing ongoing assistance to deal with psychological and physical needs over the first 2 years after first-line treatment. Targeting individuals at risk of future unmet needs should be prioritized.

Patient navigator programs have evolved to facilitate access to care and improve outcomes for Indigenous cancer patients. We reviewed the scientific literature on patient navigator programs in Indigenous people with cancer. We conducted a review of the published literature up to 13 April 2011. PubMed, MEDLINE and CINAHL databases were searched for original articles on Indigenous patient navigation programs. The review produced eight relevant articles covering two specific programs, the Native Sisters Program and the Walking Forward Program. Program descriptions, patient navigator's roles, cultural aspects and the impact of the programs were described. Patient navigators' roles in the programs varied, as did their qualifications, but importantly, all were Indigenous. Both programs aimed to increase participation in screening, remove barriers to treatment and decrease mortality. The Native Sisters Program documented an increase in adherence to breast screening among navigated American Indian participants, although there were substantial differences in the baseline screening adherence between navigated and non-navigated participants. The Walking Forward Program yielded on average 3 fewer days of treatment delays for navigated American Indians than for non-navigated American Indians. However, adjustments for socioeconomic characteristics and disease characteristics were not described. Although preliminary outcomes are seemingly positive, further rigorous evaluation of quantitative impacts are needed.

Aim: With cancer cases expected to rise in the coming decades, increased demands will be placed on our health system to address the psychosocial care of patients affected by cancer. The objective of this study was to review the evidence on the cost effectiveness of psychological interventions for individuals with cancer. Methods: A systematic review was undertaken to assess the cost effectiveness of psychosocial approaches specifically treating depression or anxiety, or both, in patients with cancer. Major medical databases were searched together with reference lists from eligible articles. A narrative approach was used to synthesise the findings and quality assessment was guided by recommendations by Drummond’s 10-point checklist for reporting health economic evaluations. Results: The review yielded five cost-effectiveness studies. Most interventions showed improvements in some psychological outcomes. Three studies reported slightly but not significantly higher health-care costs for their intervention than their comparison groups. Costs of the interventions ranged from US$47 to $629 per patient. One study of patients with mixed cancer diagnoses used the preferred outcome “quality-adjusted life years” (QALY) and found a cost-effective investment for an intensive nurse-led program with reported incremental costs of £5278 per QALY gained. No study undertook a comprehensive sensitivity analysis although two studies performed simple one-way sensitivity analyses. Conclusion: Current results are inconclusive due to study heterogeneity and inadequate analyses but suggest that psychosocial interventions are inexpensive on a per patient basis. Future studies should routinely include preference-based utility instruments to capture psychological distress in economic evaluation.