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ObjectiveTo investigate and compare the receipt of patient-centred care amongst rural and urban outpatients undergoing cancer treatment. Methods Cross sectional survey of 444 (331 urban and 113 rural residing) adult cancer patients of heterogeneous cancer types receiving cancer treatment in four outpatient cancer clinics in New South Wales, Australia. Results Patients received a mean of 15.70 out of 21 patient-centred care elements. Only 5% (n=21) of patients received all 21 patientcentred care elements. Information about actual treatment delivery and physical side effects were most frequently received (96%). Practical and psychosocial care were least frequently received (21-31%). Patients' rural or urban residential location was not significantly associated with the receipt of patient-centred care (p=0.963). Conclusion Gaps in practical and psychosocial care occurred in both rural and urban cancer patients. Greater involvement of other healthcare professionals, such as general practitioners, could be considered to meet gaps in patient-centred cancer care. [ABSTRACT FROM AUTHOR]

Background: There is poor uptake of psychosocial interventions offered to people with cancer who record high scores on distress screening scales. Intervention uptake may be influenced by a mismatch between consumer (bottom-up) and professional (top-down) paradigms of wellbeing. The current research aims to compare cancer survivors’ ‘self-judgements’ about their levels of anxiety, depression and stress, to classifications derived via a professional-driven measure, the Depression, Anxiety and Stress Scale (DASS-21). Methods: A cross-sectional study was undertaken with haematological cancer survivors recruited from three population-based cancer registries in Australia. Consenting participants were mailed a questionnaire package; and non-responders received a second questionnaire package after 3-weeks and a reminder call after 6-weeks. The consumer-driven perspective was assessed via three separate single items asking survivors to self-classify their levels of anxiety, depression and stress over the past week on a scale from ‘normal’ to ‘extremely severe’. The professional-driven classification was assessed via the DASS-21. Kappa statistics were used to assess agreement between consumer- and professional-driven measures. Results: Of 2,971 eligible haematological cancer survivors, 1,239 (42%) provided written consent and were mailed a questionnaire package. Of these, 984 (79%) returned a completed questionnaire. The simple kappa for agreement between the DASS-21 and self-classified measures for anxiety was 0.47 (95% CI: 0.39 to 0.54, p<0.0001). The weighted kappa for agreement between the DASS-21 and self-classified measures of depression was 0.60 (95% CI: 0.53 to 0.67, p<0.0001) and for measures of stress was 0.51 (95% CI: 0.44 to 0.59, p<0.0001). Conclusions: Moderate agreement between self-classification and professional-driven assessments was found. The value of screening is predicated on the assumption that those with identified needs will be offered and take up services that will benefit them. Our results suggest that to improve the utility of distress screening it may be important to include assessment of survivor views about their symptoms. [ABSTRACT FROM AUTHOR]

Background: Medical oncology outpatients are a group for whom advance care planning (ACP) activities are particularly relevant. Patient views can help prioritise areas for improving end of life communication. The study aimed to determine in a sample of medical oncology outpatients: (1) the perceived importance of participating in ACP activities; (2) the proportion of patients who have ever participated in ACP activities; and (3) the proportion of patients who had not yet participated in ACP activities who were willing to do so in next month.Methods: Adult medical oncology outpatients in two Australian cancer treatment centres were consecutively approached to complete a pen-and-paper survey. Items explored perceived importance, previous participation, and willingness to participate across key ACP activities including: discussing wishes with their family or doctor; recording wishes in a written document; appointing a substitute decision maker (SDM); and discussing life-expectancy.Results: 185 participants completed the survey (51% consent rate). Most patients agreed it was important to: discuss end of life wishes with family (85%) and doctors (70%) and formally record wishes (73%). Few had discussed end of life wishes with a doctor (11%), recorded their wishes (15%); chosen a SDM (28%); discussed life expectancy (30%); or discussed end of life wishes with family (30%). Among those who had not participated in ACP, most were willing to discuss life expectancy (66%); discuss end of life wishes with family (57%) and a doctor (55%); and formally record wishes (56%) in the next month. Fewer wanted to appoint a SDM (40%).Conclusion: Although medical oncology outpatients perceive ACP activities are important, rates of uptake are relatively low. The willingness of many patients to engage in ACP activities suggests a gap in current ACP practice. Efforts should focus on ensuring patients and families have clarity about the legal and other ramifications of ACP activities, and better education and training of health care providers in initiating conversations about end of life issues. [ABSTRACT FROM AUTHOR]

Objective: Our aim is to examine whether provider screening for physical and emotional symptoms, as reported by medical oncology outpatients, varies across medical oncology treatment centres.Methods: A cross-sectional sample of 716 patients attending the outpatient medical oncology department of six public cancer treatment centres across five Australian states participated. Four patient-report survey items explored how often patients were specifically asked by clinical staff at the treatment centre about their (i) emotional distress (anxiety, distress and depression), (ii) pain, (iii) fatigue and (iv) other physical symptoms (e.g. nausea and constipation). Asking at less than half of all appointments was classified as infrequent screening.Results: No significant associations were found between treatment centre and symptom screening for emotional distress (p = 0.65), pain (p = 0.21), fatigue (p = 0.95) and other physical symptoms (p = 0.40). The proportion of patients who were regularly screened versus infrequently screened was significantly higher for physical symptoms than emotional symptoms (p < 0.001): 36% infrequently screened for emotional distress (range: 33-45%), 15% infrequently screened for pain (range: 9-21%), 16% infrequently screened for fatigue (range: 15-19%) and 11% infrequently screened for other physical symptoms (range: 5-17%).Conclusions: No significant variation in symptom screening was found across treatment centres. While the majority of patients received recommended care, treatment centres must continue to improve symptom screening rates, particularly for emotional distress. However, screening is only the first step and must be accompanied by the offer of help and provision of help to relieve patient suffering. [ABSTRACT FROM AUTHOR]

Context: Identifying modifiable gaps in the symptom management pathway, as perceived by patients, is the first step to relieving patient suffering.Objectives: The objective is to describe the proportion of patients experiencing treatable cancer-related symptoms who reported 1) a health care provider at the treatment center offered assistance for their symptom, 2) they accepted the assistance offered, and 3) the assistance relieved suffering. Variation in symptom management among treatment centers also was examined.Methods: A survey was done with 528 medical oncology outpatients recruited from six treatment centers. Eight items explored management of prevalent, burdensome, and treatable cancer-related symptoms: pain, fatigue, other physical side effects, and emotional distress. Participants were asked about symptom management provided at the clinic from where they were recruited. Questions referred to the last occasion the patient experienced the symptom.Results: Fewer patients were offered help to relieve fatigue (44%) and emotional distress (57%), than pain (90%) and other physical side effects (84%). In most cases, help was not offered as clinic staff were not aware of the patient's symptom. Although the vast majority of patients accepted the help that was offered, more patients accepted help for physical symptoms (pain, 97%; fatigue, 95%; and other side effects, 98%) than emotional symptoms (87%). When care was provided, most patients experienced at least a little relief from pain (99%), fatigue (94%), and emotional distress (96%). Symptom management did not vary significantly by treatment center (P = 0.073).Conclusion: Quality improvement initiatives must focus primarily on improving providers' awareness of their patients' symptoms and ensuring that patients are subsequently offered help. [ABSTRACT FROM AUTHOR]

Background: The mini-Mental Adjustment to Cancer Scale (mini-MAC) is a well-recognised, popular measure of coping in psycho-oncology and assesses five cancer-specific coping strategies. It has been suggested that these five subscales could be grouped to form the over-arching adaptive and maladptive coping subscales to facilitate the interpretation and clinical application of the scale. Despite the popularity of the mini-MAC, few studies have examined its psychometric properties among long-term cancer survivors, and further validation of the mini-MAC is needed to substantiate its use with the growing population of survivors. Therefore, this study examined the psychometric properties and dimensionality of the mini-MAC in a sample of long-term cancer survivors using Rasch analysis. Methods: RUMM 2030 was used to analyse the mini-MAC data (n=851). Separate Rasch analyses were conducted for each of the original mini-MAC subscales as well as the over-arching adaptive and maladaptive coping subscales to examine summary and individual model fit statistics, person separation index (PSI), response format, local dependency, targeting, item bias (or differential item functioning -DIF), and dimensionality. Results: For the fighting spirit, fatalism, and helplessness-hopelessness subscales, a revised three-point response format seemed more optimal than the original four-point response. To achieve model fit, items were deleted from four of the five subscales - Anxious Preoccupation items 7, 25, and 29; Cognitive Avoidance items 11 and 17; Fighting Spirit item 18; and Helplessness-Hopelessness items 16 and 20. For those subscales with sufficient items, analyses supported unidimensionality. Combining items to form the adaptive and maladaptive subscales was partially supported. Conclusions: The original five subscales required item deletion and/or rescaling to improve goodness of fit to the Rasch model. While evidence was found for overarching subscales of adaptive and maladaptive coping, extensive modifications were necessary to achieve this result. Further exploration and validation of over-arching subscales assessing adaptive and maladaptive coping is necessary with cancer survivors. [ABSTRACT FROM AUTHOR]

Objective: To describe travel burden and travel-related financial burden experienced by cancer patients over the first year after diagnosis. Design, setting, participants: Population-based longitudinal cohort of recent adult cancer patients diagnosed with the eight most incident cancers recruited from New South Wales and Victorian Cancer Registries. Self-report survey data were collected at 6 and 12 months after diagnosis from 1410 participants (city: n = 890; regional/remote: n = 520). Main outcome measures: Travel time to cancer treatment, living away from home for treatment, travel-related treatment decisions, extent of financial issues, unmet need for financial help. Results: During the first 12 months after diagnosis, outer regional/remote residents had the greatest travel burden; 61% (n = 79) travelled at least 2 hours one way to receive treatment, and 49% (n = 66) lived away from home to receive treatment. Strongest associates of travel burden were living in regional/remote areas (odds ratio (OR) = 18.9-135.7), having received surgery (OR = 6.7) or radiotherapy (OR = 3.6). Between 6 and 12 months after diagnosis, 2% (n = 24) of patients declined cancer treatment because of the time it would take to get to treatment. Patients who travelled more than 2 hours or lived away for treatment reported significantly greater financial difficulties (38%; 40%) than those who did not (12%; 14%), even after adjusting for covariates. Conclusions: Travel burden is greatest for rural patients, and is associated with greater financial burden. Appropriate and adequate provision of travel and accommodation assistance schemes remains paramount to achieving equitable delivery of cancer services. [ABSTRACT FROM AUTHOR]

Objective: Coping strategies mediate the relationship between challenging situations and their impact on psychosocial outcomes. Many long-term cancer survivors continue to face a range of challenges in their daily lives, yet little is known about how this population copes. The study explored the prevalence and predictors of cancer-specific coping strategies among a heterogeneous sample of long-term cancer survivors. Methods: A population-based cross-sectional sample of 863 adult cancer survivors 5-6 years post-diagnosis completed a pen-and-paper survey. Cancer-specific coping was assessed via the Mini-Mental Adjustment to Cancer (mini-MAC) Scale. Potential predictor variables included patient, disease and treatment characteristics and social support. Results: The most commonly used coping strategies were fatalism and fighting spirit. Of those survivors that used any of the coping strategies assessed, 53% used at least two strategies. Maladaptive coping was commonly predicted by low social support (OR=1.77 to 2.49) and being a disability pensioner, whereas having ever received chemotherapy widely predicted greater use of all types of coping. A weekly household income of over $1000 a week uniquely predicted not using any mini-MAC coping strategies. Conclusions: Survivors continue to engage in cancer-specific coping strategies many years after diagnosis, albeit to a lesser extent than recent survivor populations. A number of predictors were identified that can alert health workers to long-term survivors at increased risk of maladaptive coping. Given that low social support consistently predicted maladaptive coping responses, interventions aimed at promoting positive coping responses should include strategies to increase access to social support. Copyright © 2010 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]