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Background: The 75+ health assessment has been identified as a suitable trigger to introduce advance care planning (ACP) to general practice patients. Australian general practitioners (GPs) were surveyed to explore their perceptions, attitudes and practices in introducing ACP during 75+ health assessments. Methods: A cross-sectional postal survey of Australian GPs covering their personal, professional and workplace characteristics, their current practice regarding ACP within a 75+ health assessment, and their attitude towards ACP. Multivariate logistic regression was used to analyse the factors associated with routinely discussing ACP as part of the 75+ health assessment. Results: A total of 185 (19.2%) out of 964 eligible GPs returned a completed survey. Most GPs reported that patients interested in ACP were supported by the GPs or the practice nurse. Two factors, (1) attitude that ACP is an essential component of the 75+ health assessment, and (2) regional or rural location of the practice, had a statistically and clinically significant association with the GP's self-reported discussion of ACP during 75+ health assessments. Conclusions: GPs showed a high level of support and involvement in discussing ACP during 75+ health assessments. ACP support during 75+ health assessments was often provided directly by the GP or via the practice nurse. Given the international evidence that ACP training programs improve skills and knowledge, and foster positive attitudes towards ACP, there is an important need to continue funding ACP training programs for GPs and practice nurses. The 75+ health assessment has been identified as a suitable trigger to introduce advance care planning (ACP) to general practice patients. Our cross-sectional survey of 185 Australian GPs showed that (1) most patients interested in ACP were supported by general practices, and (2) the attitude that ACP is an essential component of the 75+ health assessment and regional/rural location were associated with GPs' discussion of ACP during 75+ health assessments. More support and funding may be required to follow up on these important discussions. [ABSTRACT FROM AUTHOR]

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]

Background: Population-based registries are increasingly used to recruit patient samples for research, however, they have several limitations including low consent and participation rates, and potential selection bias. To improve access to samples for research, the utility of a new model of recruitment termed the 'Consumer Register', that allows for direct patient recruitment from hospitals, was examined. This paper reports: (i) consent rates onto the register; (ii) preferred methods and frequency of contact; and (iii) the feasibility of establishing the register, including: (a) cost per person recruited to the register; (b) the differential cost and consent rates of volunteer versus paid data collectors; and (c) participant completion rates. Methods: A cross-sectional survey was conducted in five outpatient clinics in Australia. Patients were approached by volunteers or paid data collectors and asked to complete a touch-screen electronic survey. Consenting individuals were asked to indicate their willingness and preferences for enrolment onto a research register. Descriptive statistics were used to examine patient preferences and linear regression used to model the success of volunteer versus paid data collectors. The opportunity and financial costs of establishing the register were calculated. Results: A total of 1947 patients (80.6 %) consented to complete the survey, of which, 1486 (76.3 %) completed the questionnaire. Of the completers, the majority (69.4 %, or 1032 participants) were willing to be listed on the register and preferred to be contacted by email (50.3 %). Almost 39 % of completers were willing to be contacted three or more times in a 12 month period. The annual opportunity cost of resources consumed by the register was valued at $37,187, giving an opportunity cost per person recruited to the register of $36. After amortising fixed costs, the annual financial outlay was $23,004 or $22 per person recruited to the register. Use of volunteer data collectors contributed to an annual saving of $14,183, however paid data collectors achieved significantly higher consent rates. Successful enrolment onto the register was completed for 42 % of the sample. Conclusions: A Consumer Register is a promising and feasible alternative to population-based registries, with the majority of participants willing to be contacted multiple times via low-resource methods such as email. There is an effectiveness/cost trade off in the use of paid versus volunteer data collectors. [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]

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]

Objectives: The study examined: 1) the proportion of patients who received their preferred level of information about life expectancy; and 2) sociodemographic, clinical and psychological factors associated with patients' perceptions of whether they received too little, too much, or the right amount of information about life expectancy.Design: Cross-sectional survey.Setting: Eleven large Australian medical oncology treatment centres.Participants: A total of 1431 medical oncology outpatients participated (81% consent rate). Eligible patients were approached between September 2012 and May 2014.Main Outcome Measures: Patients indicated whether the information about life expectancy they received aligned with their preferences.Results: Almost one in four patients (24%) received too little information, 4% received too much, and 50% received all the information they wanted; 22% of patients neither wanted nor received information about life expectancy. Patients were more likely to receive too little information if they were not in remission (odds ratio [OR], 1.77), did not know their cancer stage at diagnosis (OR, 3.64), or were anxious (OR, 1.48) or depressed (OR, 1.48). Patients had greater odds of receiving too much information if they were younger (OR, 1.45), had more advanced cancer (OR, 2.01) or did not know their cancer stage at diagnosis (OR, 4.42).Conclusions: That fact that 28% of cancer patients did not receive their desired level of information about life expectancy highlights the difficulties associated with discussing this sensitive topic. To ensure that life expectancy discussions correspond with patient preferences, clinicians should routinely ask patients whether they want to know this information, in what format, and at which level of detail. [ABSTRACT FROM AUTHOR]