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Background: People with brain cancer and their support persons (SPs) are critical sources of information on the components of care that contribute to psychosocial outcomes. Aims: To determine the proportion of studies that examined (1) at least one of 14 nominated components of psychosocial cancer care and (2) more than one component of care. Methods: Medline, The Cochrane Library, PsycINFO and Embase were electronically searched for publications from January 1999 to December 2019. Publications that met the inclusion criteria were coded according to the number and type of psychosocial care components assessed from 14 listed components, and whether patient and/or SPs' views about care were elicited. Results: Of the 113 included publications, 61 publications included patient-reported data only (54%), 27 included both patient and SP-reported data (24%) and 25 included SP-reported data only (22%). Most assessed a single component of care (77% of patient-reported and 71% of SP-reported). No publications assessed all 14 components. The "Psychosocial" component was the most frequently assessed component of care for patient-reported (n = 80/88, 91%) and SP-reported publications (n = 46/52, 88%). Conclusions: Publications reporting on psychosocial care in brain cancer present a relatively narrow view of patient and support person experiences. The inclusion of both patient and support person perspectives and the assessment of multiple components of care are required in future research to optimize psychosocial outcomes in brain cancer. [ABSTRACT FROM AUTHOR]

Background: Continuous quality improvement in cancer care relies on the collection of accurate data on the quality of care provided. It is suggested that such an approach should: (i) measure the patient's care experience throughout the cancer trajectory; (ii) use items and response scales that measure concrete and specific aspects of care; (iii) minimise recall bias; (iv) minimise the burden placed on patients for providing data; (v) minimise administrative burden; and (vi) collect actionable data. The System for Patient Assessment of Cancer Experiences (SPACE) was developed to meet these objectives. This study describes the feasibility and acceptability of the SPACE in a sample of oncology outpatients.Methods: The SPACE was examined in four medical oncology centres. Adult patients were approached by a research assistant prior to their scheduled consultation. Consenting participants completed the SPACE on a computer tablet. Items were tailored to the patient's cancer treatment phase.Results: Of the eligible participants, 1143 consented (83%) and 1056 completed the survey (92%). The average time taken to complete the survey was 6 min 28 s. A large proportion of the sample indicated that the survey was acceptable (88-93% across three acceptability items).Conclusion: This study demonstrates that the SPACE can be feasibly administered each time a patient comes to the oncology unit and is acceptable to patients. The SPACE could be used to quantify the care experiences which patients receive during their cancer care. The resulting data could be used to set benchmarks and improve the performance of cancer clinics. [ABSTRACT FROM AUTHOR]

Purpose: To explore outcomes of psychological distress, including anxiety, depression and stress, amongst adult haematological cancer survivors, with a specific focus on potential differences between rural and urban survivors.Methods: One thousand four hundred fourteen urban and rural survivors were recruited from five Australian population-based cancer registries and completed a self-report pen-and-paper survey on their well-being, including the Depression Anxiety and Stress Scale 21-item version.Results: A quarter of survivors were identified as reporting above normal levels of anxiety and depression, respectively, and almost one fifth (17 %) reported above normal levels of stress. There were no statistically significant differences in the percentage of rural and urban survivors reporting above normal levels of anxiety, depression, or stress. Survivors who had experienced financial burden due to their cancer or were of middle age had higher odds of reporting multiple domains of psychological distress, compared to their counterparts.Conclusions: Haematological cancer survivors diagnosed during middle age or who experience increased financial burden as a result of their diagnosis may require additional support and care with regards to psychological distress. [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]