Impact of disease recurrence on the supportive care needs of patients with ovarian cancer and their caregivers.

OBJECTIVE: We aimed to explore the supportive care needs of ovarian cancer patients and their caregivers before and after the first cancer recurrence, the top unmet needs after recurrence, and the relationship between patient and caregiver needs at recurrence. METHODS: Participants were 288 patients and 140 caregivers from the Australian Ovarian Cancer Study-Quality of Life (AOCS-QoL) cohort. They completed Supportive Care Needs Surveys (patients: SCNS-SF34, caregivers: SCNS-P&C44) every three-to-six months for up to two years. Linear mixed models tracked changes in needs over time. We calculated the percentage reporting moderate-to-high needs after recurrence. LASSO regression analysed patient-caregiver need relationships. RESULTS: Both patients' and caregivers' psychological, health system/service and information needs increased with recurrence along with patients' support and physical needs. These remained stable at nine months after recurrence. Dominant patient needs post-recurrence included 'fear of recurrence' (38%) and 'concerns about the worries of those close' (34%), while caregivers expressed 'concerns about recurrence' (41%) and 'recovery of the patient not turning out as expected' (31%). Among dyads, when patients had 'fears about the cancer spreading' this was associated with caregivers having a need for help with 'reducing stress in the patients' life'; when caregivers had concerns about 'recurrence' this was associated with patients needing help with 'uncertainty about the future' and 'information about things they can do to help themselves'. CONCLUSIONS: Recurrent ovarian cancer intensifies disease-related fears and concerns for patients and loved ones. Addressing dyadic concerns through supportive care interventions may enhance cohesion during the challenging journey of recurrent disease.

Are exercise and sitting time during chemotherapy for ovarian cancer associated with treatment-related side-effects, chemotherapy completion and survival?

OBJECTIVE: To evaluate if exercise and sitting time during chemotherapy were associated with chemotherapy side-effects, completion of planned chemotherapy and survival. METHODS: We used data from the Ovarian cancer Prognosis And Lifestyle (OPAL) Study, a national prospective cohort of adults with newly-diagnosed epithelial ovarian cancer. At 3-monthly questionnaires we asked about exercise and sitting time in the past week, and treatment-related side-effects. Details about treatment, toxicities, progression and death were abstracted from medical records. We used linear, logistic and Cox regression, respectively, to assess associations between both exercise and sitting time, and chemotherapy side-effects and completion (≥85% relative dose intensity) and survival. RESULTS: 503 eligible participants were included in one or more analyses. Patients participating in higher-intensity exercise (≥30 min of moderate-vigorous exercise/week; 24%) reported significantly better Functional Assessment of Chronic Illness/Cancer Therapy (FACIT)-Fatigue (32.2 vs. 26.7) and FACT-Trial Outcome Index (69.4 vs. 61.7) scores, and were less likely to have clinician-reported moderate-severe neurotoxicity (odds ratio [OR]:0.50; 95% confidence interval [95%CI]:0.29-0.88), than minimal exercisers (<30 min moderate-vigorous exercise/week & <120 min walking/week; 52%). Participating in higher-intensity exercise was also possibly associated with greater chemotherapy completion (OR:1.70; 95%CI:0.90-3.20), particularly for paclitaxel. Sitting time was not associated with chemotherapy completion. For patients with advanced disease who underwent cytoreduction and received first-line carboplatin and paclitaxel, there was a suggestion higher-intensity exercise during chemotherapy may improve survival (HR:0.68; 95%CI:0.47-1.01). CONCLUSIONS: Patients with ovarian cancer who carry out moderate-vigorous exercise during chemotherapy have fewer side-effects and potentially better completion of planned chemotherapy and overall survival.

Evaluating patient-reported symptoms and late adverse effects following completion of first-line chemotherapy for ovarian cancer using the MOST (Measure of Ovarian Symptoms and Treatment concerns).

OBJECTIVES: 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). METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Insomnia and its association with quality of life in women with ovarian cancer.

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.

When will I feel normal again? Trajectories and predictors of persistent symptoms and poor wellbeing after primary chemotherapy for ovarian cancer.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Patterns of, and barriers to supportive care needs assessment and provision for Australian women with gynecological cancer and their caregivers: a mixed-methods study of clinical practice.

OBJECTIVES: To 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. METHODS: A 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. RESULTS: Mostly, 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 RESULTS: There 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.

Sun protection behavior after diagnosis of high-risk primary melanoma and risk of a subsequent primary.

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.

A systematic literature review of trials of survivorship interventions for women with gynaecological cancer and their caregivers.

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.

A systematic literature review of the prevalence of and risk factors for supportive care needs among women with gynaecological cancer and their caregivers.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Perceptions of care and patient-reported outcomes in people living with neuroendocrine tumours.

BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.

Coping strategies, trajectories, and their associations with patient-reported outcomes among women with ovarian cancer.

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Strategies to assist women with acceptance, action-planning, positive-framing, and maintaining psychosocial support should be considered.

The Imperative for a Triumph-Over-Tragedy Story in Women's Accounts of Undergoing Chemotherapy for Ovarian Cancer.

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.

Association between pancreatic cancer patients' perception of their care coordination and patient-reported and survival outcomes.

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.

Anxiety, depression and quality of life in people with pancreatic cancer and their carers.

BACKGROUND: 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.

Association between change in employment participation and quality of life in middle-aged colorectal cancer survivors compared with general population controls.

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.

Variations in supportive care needs of patients after diagnosis of localised cutaneous melanoma: a 2-year follow-up study.

PURPOSE: 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. METHODS: 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. RESULTS: The proportion of patients with needs substantially declined over the first 6 months (if no previous melanoma, from 48 to 22 %, p < 0.001; previous melanoma, 35 to 17 %, p = 0.007), and in those remaining disease-free, needs declined further by 24 months (to 14 and 6 % respectively). By contrast, 50 % of those experiencing recurrence, and 39 % of those who developed another primary, reported needs. Stressful life events and anxiety were associated with needs at enrolment. At least one need, mainly fear of recurrence, persisted in 22 % of disease-free participants. Persistent needs were predicted by age, depression, anxiety and other stressful life events. CONCLUSIONS: Melanoma patients' needs peak when first diagnosed and if disease recurs. Younger people or those experiencing additional stressful events, anxiety or depression are more likely to experience persistent needs and may benefit from tailored support.

Reduced employment and financial hardship among middle-aged individuals with colorectal cancer.

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.

A tsunami of unmet needs: pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services.

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.

Factors associated with quality of care for patients with pancreatic cancer in Australia.

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.