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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]

Objective: Using a vignette-style DCE in a sample of oncology patients, this study explored: (1) the relative influence of the patient's level of concern about their depression on preferences for care, (2) the relative influence of depression severity according to a mental health checklist on preferred treatment-seeking options, and (3) whether patient age and gender were associated with depression care preference.Methods: A discrete choice experiment (DCE) survey of cancer patients was conducted. Hypothetical vignettes to elicit care preferences were created using two attributes: the cancer patient's level of concern about depression (a little or a great deal) and results of a mental health checklist (not depressed or very depressed). Three response options for care preferences were presented, including a self-directed approach, shared care approach, and clinician-directed referral approach. Participants chose their most and least preferred options.Results: A total of 281 cancer patients completed the survey. There was a significant association between level of concern and the most preferred option. Those with a great deal of concern about depression preferred to receive referral from their clinician more than those with a little concern about depression. Males were significantly more likely to select a self-directed approach as their most preferred option.Conclusions: An oncology patient's level of concern about depression may influence the type of care they want to receive from their cancer doctor for depression. This finding has implications for depression screening in clinical practice. [ABSTRACT FROM AUTHOR]

Objective: To describe among radiation oncology patients: (1) the proportion likely to be experiencing symptoms of depression and anxiety as identified by (a) the Hospital Anxiety and Depression Scale (HADS; standardised tool), (b) patient-reported single items (ultrashort tool), and (c) radiation oncologist-reported single items (clinician judgement); (2) preferences for being offered psychological support; and (3) agreement between single-item measures and the HADS.Methods: Adult cancer patients (n = 152; consent rate 58%) receiving radiotherapy completed a touchscreen tablet survey assessing symptoms of anxiety and depression (HADS and a single-item tool) and support preferences. Each participant's treating radiation oncologist completed a survey assessing his or her perception of whether the patient was anxious or depressed.Results: Prevalence estimates for likely depression (6.9-18%) and anxiety (17-33%) overlapped across the 3 measures. Overall, only 9.9% of patients (95% CI, 5.6%-16%) wanted to be offered psychological support. For depression, agreement between the HADS and ultrashort tool was fair (κ = 0.37, P < 0.0001); agreement between the HADS and clinician judgement was slight (κ = 0.14, P < 0.05). For anxiety, agreement between the HADS and clinician judgement was not significantly greater than chance alone (κ = 0.04, P = 0.33), and agreement between the HADS and ultrashort tool was moderate (κ = 0.49, P < 0.0001).Conclusions: These findings highlight the important role that oncology consultations play in interpreting assessment tool results and responding to individual patient's history and preferences for psychological support. [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]

Anxiety and depression can be heightened among individuals living with chronic diseases. Identifying these individuals is necessary for ensuring they are provided with adequate support. Traditional tools such as clinical interviews or symptom checklists are not always feasible to implement in practice. Robust single-item questions may be a useful alternative. This study aimed to measure agreement, sensitivity, specificity, positive predictive value and negative predictive value of a single-item question about anxiety and depression compared to the widely used Hospital Anxiety and Depression Scale (HADS). A cross-sectional survey of 2,811 people with cancer attending 19 treatment centres in Australia. Patients were approached in the waiting room prior to an outpatient clinic appointment and invited to complete a pen and paper survey. Participants completed the HADS as well as 2 single-items asking if they have felt anxious or depressed in the last week. The single-items for anxiety and depression each demonstrated moderate levels of sensitivity (0.78 for anxiety; 0.63 for depression) and specificity (0.75 for anxiety; 0.84 for depression) against the relevant HADS subscale. Positive predictive values were moderate (0.53 for anxiety and 0.52 for depression) while negative predictive values were high for both single-item questions (0.90 for anxiety and 0.89 for depression). The single-item measures of anxiety and depression may be useful to rule out individuals who do not require further psychological assessment or intervention for anxiety and depression. Further research is needed to explore whether these findings generalise to other chronic diseases. [ABSTRACT FROM AUTHOR]

Objectives: To explore in a sample of medical oncology outpatients and their nominated support persons (SPs): (1) the relative influence of pain, consciousness and life extension on end-of-life choices using a discrete choice experiment (DCE); (2) the extent to which SPs can predict the choices of index patients and (3) whether having a previous end-of-life discussion was associated with dyad agreement.Methods: Adult medical oncology patients and their SPs were approached for consent to complete a survey containing a DCE. Participants chose between three unlabelled care scenarios characterised by three attributes: pain (mild, moderate or severe), consciousness (some, half or most of time) and extension of life (1, 2 or 3 weeks). Respondents selected (1) most-preferred and (2) least-preferred scenarios within each question. SPs answered the same questions but from patient's perspective.Results: A total of 110 patients and 64 SPs responded overall (42 matched patient-SP dyads). For patients, pain was the most influential predictor of most- and least-preferred scenarios (z = 12.5 and z = 12.9). For SPs, pain was the only significant predictor of most and least-preferred scenarios (z = 9.7 and z = 11.5). Dyad agreement was greater for choices about least- (69%) compared to most-preferred scenarios (55%). Agreement was slightly higher for dyads reporting a previous EOL discussion (68 versus 48%; p = 0.065).Conclusion: Patients and SPs place significant value on avoiding severe pain when making end-of-life choices, over and above level of consciousness or life extension. People's views about end-of-life scenarios they most as well as least prefer should be sought. [ABSTRACT FROM AUTHOR]

Purpose: To explore the actions cancer patients reported they would take in response to a range of common side effects of chemotherapy and whether these were considered appropriate based on current guidelines and evidence; and to explore the sociodemographic and cancer-related variables associated with patients selecting the appropriate action (immediate medical attention or reporting) for two potentially life-threatening side effects: fever, and unusual bleeding and bruising.Methods: Four hundred thirty-six medical oncology and haematology patients receiving chemotherapy completed two surveys to provide demographic, disease and treatment characteristics, and details on how they would respond if they experienced a range of specified side effects of chemotherapy (for example, nausea and vomiting, fatigue, and skin rash or nail changes). The proportion of patients reporting the appropriate action for each side effect was calculated. Multiple logistic regressions examined the patient demographic and cancer characteristics associated with selecting the appropriate action (seeking immediate medical attention) for two potentially life-threatening side effects of chemotherapy: high fever of 38 °C or more, and unusual bleeding or bruising.Results: Two thirds of patients indicated that they would seek immediate medical attention for high fever (67%), but only 41% would seek immediate attention for bleeding or bruising. Cancer type and time since diagnosis were significantly associated with patients indicating that they would seek immediate medical attention for high fever; while time since diagnosis was the only variable significantly associated with patients reporting that they would seek immediate medical attention for unusual bleeding or bruising. For chronic side effects, like skin rash or nail changes, and tingling or numbness, which usually do not require urgent reporting, only between 12 and 16% would report them immediately. A significant proportion of patients reported that they would "do nothing" about fatigue or tiredness (24%). By comparison, less than 10% patients reported that they would do nothing for the other side effects investigated.Conclusions: Tools need to be created so that patients better understand the side effects after being treated with chemotherapy and what action they should take. [ABSTRACT FROM AUTHOR]

Objective: To explore: (1) how haematological cancer survivors and their support persons perceive the overall performance of the support person; (2) disagreement between survivor and support person ratings; and (3) characteristics associated with support persons rating their performance poorly.Methods: This is a substudy of a larger project of Australian haematological cancer survivors and their support persons. For this substudy, haematological cancer survivors were recruited from 4 Australian population-based cancer registries and asked to pass on a questionnaire package to their support persons. Survivors who passed on a questionnaire package to their support person were asked to answer questions about the support person and how they perceived the support person's performance. Similarly, support persons answered questions on their own performance as a support person.Results: A total of 924 haematological cancer survivors and 821 support persons were eligible for this study. Most survivors rated their support person as performing very well (84%) while less than half (48%) of support persons rated their own performance as very well. There was significant disagreement between survivor and their support person (dyad) ratings of the support person's performance. Support persons with above normal levels of depression (vs those with normal levels) had significantly higher odds of rating their own performance as "not well/somewhat well."Conclusions: Health care providers should consider providing additional education and skills-based interventions to support persons who experience increased symptoms of depression. [ABSTRACT FROM AUTHOR]

Objective To compare the prevalence of anxiety, depression, and stress among rural and urban support persons of haematological cancer survivors and explore factors associated with having one or more of these outcomes. Methods Haematological cancer survivors were identified via 1 of 5 state-based cancer registries and invited to take part in a survey. Those who agreed were asked to pass on a questionnaire package to their support person. Measures included the Depression, Anxiety, and Stress Scale, Support Persons' Unmet Need Survey, and sociodemographic questions. Results Nine-hundred and eighty-nine (66%) participating survivors had a participating support person. There were no significant differences in the proportion of urban versus rural support persons who reported elevated levels of depression (21% vs 23%), anxiety (16% vs 17%), or stress (16% vs 20%), P > .05. Odds of reporting at least 1 indicator of psychological morbidity increased by 10% to 17% for each additional high or very high unmet need and by 2% for those who had relocated from their usual place of residence for the survivor to receive treatment and was decreased by 5% to 54% for those support persons who reported that they had no chronic health conditions. Conclusions Psychological outcomes for rural and urban support persons are similar. Those who have poor health, have had to relocate, and who have multiple unmet needs are particularly vulnerable to poor psychological outcomes. These factors should be assessed to enable early intervention for those at risk of poor outcomes. [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]

Objective: Although elevated psychological distress is commonly reported among cancer patients, our understanding of patients' preferences for, and perceived barriers to, accessing psychological support from key cancer care providers is limited. The aim of this study was to assess cancer patients' level of concern about, and willingness to discuss, their anxiety and depression.Methods: Radiation oncology outpatients completed a touchscreen computer survey with questions assessing their concern about and willingness to discuss anxiety and depression.Results: Among consenting respondents (n = 145), 51% (95% CI: 43%-59%) were concerned about their levels of anxiety, and 34% (95% CI: 26%-42%) about their levels of depression. If experiencing anxiety or depression, 92% (95% CI: 87%-96%) would want to discuss this with their general practitioner (GP), and 60% (95% CI: 52%-68%) with their cancer doctor. Almost half of the 58 respondents who would not want to discuss anxiety or depression with their cancer doctor indicated that this was because there were more important things to talk about during their appointment.Conclusions: The majority of cancer patients undergoing radiotherapy would be willing to discuss anxiety and depression with their cancer doctor and GP. These findings provide additional support for service delivery models in which GPs and oncologists play key roles in initiating and coordinating discussions about cancer patients' psychosocial concerns. [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: Translational biomedical research relies on the availability of human tissue to explore disease aetiology and prognostic factors, with the objective of developing better targeted treatments. The establishment of biobanks poses ongoing ethical considerations in relation to donors. This is a quantitative study exploring medical oncology patients' preferences for contributing to tissue biobanks. Methods: The objectives of this study were to explore oncology patients' preferences about tissue banking, including: 1) willingness to donate; 2) factors influencing donation decisions; 3) preferences about the use of donated tissue including permission systems, data linkage, and communication about research findings to donors. A cross-sectional survey was conducted in two tertiary oncology outpatient clinics. Eligible patients were approached by volunteers to complete a touchscreen survey in waiting rooms or while receiving intravenous therapy. Consenting participants completed demographic questions and received up to 12 previously validated items exploring preferences for donating tissue. Results: 224 oncology outpatients participated over a ten month period (69.1 % consent rate; 64.4 % completion rate). Most participants were female (54 %), were a mean age of 62 years, and diagnosed with breast (26 %) and bowel (20 %) cancer. Most participants indicated willingness to donate tissue (84 %) and for their sample to be stored for future use (96 %). Participants preferred a blanket consent approach (71 %), samples to be linked to medical records (62 %) and for general results of the research (79 %) to be provided to them. Factors influencing willingness to donate tissue included personal (85 %) or familial health benefits (88 %) and a sense of duty to future patients (82 %). Conclusions: The overwhelming majority of oncology patients are willing to participate in a tissue bank, providing some support to explore 'opt-out' models of consent. To enhance patient acceptability, tissue banking programs should: (i) consider allowing blanket informed consent as well as opt-in models of consent; (ii) develop protocols allowing feedback of information about samples in line with patient preferences; (iii) provide clear information to potential donors about the benefits arising from donation. [ABSTRACT FROM AUTHOR]

Background: This study aimed to identify the most prevalent unmet needs of haematological cancer survivors. Methods: Haematological cancer survivors aged 18-80 years at time of recruitment were selected from four Australian state cancer registries. Survivors completed the Survivor Unmet Needs Survey. The most frequently reported "high/very high" unmet needs items were identiied, as well as characteristics associated with the three most prevalent "high/very high" unmet needs reported by haematological cancer survivors. Results: A total of 715 eligible survivors returned a completed survey. "Dealing with feeling tired" (17%), was the most frequently endorsed "high/very high" unmet need. Seven out of the ten most frequently endorsed unmet needs related to emotional health. Higher levels of psychological distress (e.g., anxiety, depression and stress) and indicators of inancial burden as a result of cancer (e.g., having used up savings and trouble meeting day-to-day expenses due to cancer) were consistently identiied as characteristics associated with the three most prevalent "high/very high" unmet needs. Conclusions: A minority of haematological cancer survivors endorsed a "high/very high" unmet need on individual items. Additional emotional support may be needed by a minority of survivors. Survivors reporting high levels of psychological distress or those who experience increased inancial burden as a result of their cancer diagnosis may be at risk of experiencing the most prevalent "high/very high" unmet needs identiied by this study. [ABSTRACT FROM AUTHOR]

Objective A patient-centred approach to discussing life expectancy with cancer patients is recommended in Western countries. However, this approach to eliciting and meeting patient preferences can be challenging for clinicians. The aims of this study were the following: (i) to examine cancer patients' preferences for life expectancy disclosure; and (ii) to explore agreement between cancer patients' preferences for, and perceived experiences of, life expectancy disclosure. Methods Cancer patients undergoing radiotherapy treatment in metropolitan Australia completed a cross-sectional touchscreen computer survey including optional questions about their life expectancy disclosure preferences and experiences. Results Of the 208 respondents, 178 (86%) indicated that they would prefer their clinician to ask them before discussing life expectancy, and 30 (14%) indicated that they would prefer others (i.e. clinicians, family) to decide whether they were given life expectancy information. Of the 175 respondents who were classified as having a self- determined or other-determined disclosure experience, 105 (60%) reported an experience of life expectancy disclosure that was in accordance with their preferences. Cohen's κ was −0.04 (95% CI, −0.17, 0.08), indicating very poor agreement between patients' preferences for and perceived experiences of life expectancy disclosure ( p = 0.74). Conclusions In light of patient-centred prognosis disclosure guidelines, our findings of a majority preference for, and experience of, a self-determined approach to life expectancy disclosure amongst radiation oncology patients are encouraging. However, poor agreement between preferences and experiences highlights that additional effort from clinicians is required in order to achieve a truly patient-centred approach to life expectancy disclosure. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: The Needs Assessment for Advanced Cancer Patients (NA-ACP) is a 132-item self-report questionnaire designed to assess the seven needs domains of patients with advanced, incurable cancer. This study aimed to evaluate the short derivative form of that questionnaire with advanced lung cancer patients. Methods: Item factor loadings, item test-retest data and response distributions were used to retain or reject items from the original NA-ACP scale. This resulted in 38 items being maintained, preserving the original subscales. The response scale was simplified following feedback from patients. 108 people with advanced lung cancer completed the shortened NA-ALCP along with measures of psychological distress (HADS, DT) and quality of life (EORTC QLQ-C30). A-priori predictions were made for divergent and convergent validity. Results: Internal consistency coefficients were satisfactory for six of seven subscales, range 0.71-0.95. Correlations between NA-ALCP and HADS, DT and EORTC-QLQ-C30 provided support for 11 of the 22 divergent ( r = 0.13-0.27) and convergent predictions ( r = 0.45-0.71). Conclusions: Subscales of the NA-ALCP demonstrated internal reliability consistent with the original scale. Results provided supporting evidence for divergent and convergent validity. This study indicates that the NA-ALCP is psychometrically robust, easily understood and one-quarter the length of the original version. Copyright © 2011 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The article presents a study which examines the effectiveness of psychometric methodology in developing a measure of unmet needs for cancer survivors' principal support persons. Result shows that Support Person Unmet Needs Survey has high acceptability. They concluded that psychometric methodology will be useful in examining the impact of cancer and in identifying principal support persons.

Background: Studies examining quality of life (QoL) in cancer survivors have relied on instruments specific to the cancer patient population. Method: MEDLINE and PsycINFO were systematically searched to identify instruments and papers reporting the psychometric qualities of relevant instruments. Two reviewers undertook data extraction with respect to reliability, validity, predictive validity, responsiveness, acceptability, readability, cross cultural acceptability and feasibility. Results: Forty-two instruments were identified. Most were either measures of general health-related QoL or developed for individuals in active treatment. Nine were developed specifically for cancer survivors. None met the rigorous psychometric standards set by the review. All established acceptable levels of validity, however, only one instrument (Quality of Life-Cancer Survivors) demonstrated adequate test–retest reliability. Acceptability, feasibility and predictive validity remain unexamined. Readability was examined in only two (Cancer Survivors' Unmet needs and Quality of Life in Adult Cancer Survivors (QLACS)). Only two instruments (QLACS and Impact of Cancer) have been developed with a wide range of cancer survivors. Generally, shorter-term cancer survivors (1–5 years) are underrepresented. Conclusion: There is a need for a psychometrically credible QoL instrument for cancer survivors who are 1–5 years post diagnosis. Copyright © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Meeting the psychological, social and physical needs of people with cancer is a challenge for individual health practitioners, health administrators and health policy makers. However, there is a considerable gap between recommended best-evidence psychosocial and supportive care and actual practice. This paper provides a discussion of the reasons for this gap using the precede-proceed model as a theoretical framework. The model is a useful way of classifying potential barriers to the application of recommended best practice into three categories: predisposing factors which influence motivation to behave in a particular way, enabling factors which facilitate the enactment of the behaviour and reinforcing factors which increase the likelihood that the behaviour will be maintained over time. Ways of addressing these barriers are proposed and discussed. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Abstract: Objective: This study aimed to examine preferred and perceived roles of haematological cancer survivors in treatment decision making. Methods: Participants were within three years of diagnosis and registered with a cancer registry in one Australian state. 732 eligible survivors were invited to complete a paper and pencil survey. Results: 268 survivors completed the survey (37% response rate). The majority of participants (46%) preferred a passive role in decision making. Thirty percent of participants preferred to make the decision in collaboration with the doctor, whereas 26% preferred an active role in decision making. Just over half of respondents (56%) reported an exact match between their preferred and perceived roles. Where discordance between preferred and perceived roles were identified, survivors were more likely to report having been more passively than actively involved compared to their preferred roles. Conclusion: There is considerable variation in haematological cancer survivors’ preferred and perceived roles in treatment decision making. Practice implications: This study highlights the need to improve clinical communication to ensure that patient experiences align with their preferences for involvement in treatment decision making. [Copyright &y& Elsevier]