Discharge intervention to improve outcomes and web-based portal engagement after stroke and transient ischaemic attack: A randomised controlled trial.

OBJECTIVES: Web-based interventions may assist in post-discharge stroke care. However, strategies for maximising uptake and engagement are needed. AIMS: To determine the: (1) effectiveness of a discharge support intervention (EnableMe web-based portal and strategies to encourage use) in improving quality of life and reducing depression (primary outcome); anxiety and unmet needs of survivors of stroke and transient ischemic attack (TIA); and (2) EnableMe use and acceptability. MATERIALS AND METHODS: An open, parallel-group, multi-centre randomised controlled trial (RCT) of the intervention compared to usual care for survivors of stroke/TIA and their support persons. Participants recruited from eight hospitals completed questionnaires at baseline, 3 and 6 months. Outcomes included quality of life, depression, anxiety and unmet needs. RESULTS: 98 survivors (n=52 intervention, n=47 control) and 30 support persons (n=11 intervention, n=19 control) enrolled in the RCT. Bayesian analyses showed substantial evidence of an intervention effect on survivors' quality of life scores at 3 months. There was moderate-to-strong evidence of a treatment effect on depression scores and strong evidence that intervention participants had fewer unmet needs at 3 and 6 months. 45 % of intervention group survivors and 63 % of support persons self-reported using EnableMe. 64 % of survivors and 84 % of support persons found it helpful. CONCLUSION: Substantial evidence for the discharge support intervention was found, with a difference between groups in survivor quality of life, depression, and unmet needs. Acceptability was demonstrated with largely positive attitudes towards EnableMe. Future research should explore different engagement strategies to improve uptake of online stroke resources.

Barriers and enablers to providing evidence-based in-hospital urinary continence care: A cross-sectional survey informed by the Theoretical Domains Framework.

AIMS: To identify the barriers and enablers perceived by hospital-based clinicians to providing evidence-based continence care to inpatients. DESIGN: This was a cross-sectional study of inpatient clinicians using a questionnaire. METHODS: Acute care and rehabilitation clinicians from 15 wards that admit patients after stroke at 12 hospitals (NSW = 11, Queensland =1, metropolitan = 4, regional = 8) were invited to complete an online questionnaire. The 58 questions (answered on a 5-point Likert scale) were aligned to 13 of the 14 domains of the Theoretical Domains Framework. Results were dichotomized into 'strongly agree/agree' and 'unsure/disagree/strongly disagree' and proportions were calculated. Data collection occurred between January 2019 and March 2019. RESULTS: The questionnaire was completed by 291 participants with 88% being nurses. Barriers were found in nine domains including knowledge; skills; memory attention and decision making; emotion; environmental context and resources; behavioural regulation; social professional role; intensions, social influences; and beliefs about capabilities. Enablers were found in seven domains including goals; social influences; knowledge; skills; social, professional role and identity; reinforcement and beliefs about consequences. CONCLUSION: This multi-site, multi-professional study that included predominantly nurses highlights the barriers and enablers to inpatient continence care. Future implementation studies in inpatient continence management should address these identified barriers and enablers to improve effectiveness of implementation of evidence-based care. IMPLICATIONS FOR THE PROFESSION: This study highlights that although there are many barriers to ward nurses providing evidence-based continence care, there are also several enablers. Both should be addressed to improve practice. REPORTING METHOD: We adhered to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) (Supplementary File 1). RELEVANCE TO CLINICAL PRACTICE: Establishing barriers to practice gives a broader understanding of why practice does not occur and establishes areas where researchers and clinicians need to address in order to change behaviour.

Key Informant Perspectives on Barriers to Advance Personal Planning: Results from a Qualitative Interview Study.

Advance Care Planning (ACP) relates to the process of thinking about, discussing, and potentially documenting future wishes and preferences relating to personal and health matters. Existing literature has explored ACP from the perspective of health care professionals and older people. However, data exploring the broader process of Advance Personal Planning (APP), which also accounts for plans relating to legal and financial matters, are limited. This article reports on an interview study that explored barriers to APP engagement, factors influencing the quality and future use of instruments, and opportunities for improving APP processes for older adults from the perspectives of key informants working in the fields of law, health, and aged care. Data were coded in NVivo and analysed thematically. Opportunities for improvement include education, normalising conversations, integration into usual practice, and reform. Recommendations are made at professional, community, and structural levels, with the aim of improving APP outcomes for all involved.

Junior medical doctors' decision making when using advance care directives to guide treatment for people with dementia: a cross-sectional vignette study.

BACKGROUND: Junior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors' decision-making processes when treating people with dementia who have advance care directives (ACDs), or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: (1) their legal compliance and decision-making process related to treatment decisions; (2) the factors influencing their clinical decision-making; and (3) the factors associated with accurate responses to one hypothetical vignette. METHOD: A cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: (1) bacterial pneumonia; or (2) suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette. RESULTS: Overall, 116 junior doctors responded (35% consent rate). In Vignette 1, 58% of respondents (n = 67/116) selected the legally compliant option (i.e. not commence treatment). Participants who chose the legally compliant option perceived 'following patient wishes' (n = 32/67; 48%) and 'legal requirements to follow ACDs' (n = 32/67; 48%) as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the 'ACD is relevant in my decision-making process, but other factors are more relevant' (n = 14/37; 38%). In Vignette 2, 72% of respondents (n = 83/116) indicated they would commence treatment (i.e. not follow the ACD) and 18% (n = 21/116) selected they would not commence treatment. (i.e. follow the ACD). Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario. CONCLUSIONS: There are critical gaps in junior doctors' compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors' clinical decision-making and ensure compliance with the law is required.

Junior Medical Officers' knowledge of advance care directives and substitute decision making for people without decision making capacity: a cross sectional survey.

BACKGROUND: For the benefits of advance care planning to be realised during a hospital admission, the treating team must have accurate knowledge of the law pertaining to implementation of advance care directives (ACDs) and substitute decision making. AIMS: To determine in a sample of Junior Medical Officers (JMOs): (1) knowledge of the correct order to approach people as substitute decision makers if a patient does not have capacity to consent to treatment; (2) knowledge of the legal validity of ACDs when making healthcare decisions for persons without capacity to consent to treatment, including the characteristics associated with higher knowledge; and (3) barriers to enacting ACDs. METHODS: A cross-sectional survey was conducted at five public hospitals in New South Wales, Australia. Interns, residents, registrars, and trainees on clinical rotation during the recruitment period were eligible to participate. Consenting participants completed an anonymous pen-and-paper survey. RESULTS: A total of 118 JMOs completed a survey (36% return rate). Fifty-five percent of participants were female and 56.8% were aged 20-29 years. Seventy-five percent of JMOs correctly identified a Guardian as the first person to approach if a patient did not have decision-making capacity, and 74% correctly identified a person's spouse or partner as the next person to approach. Only 16.5% identified all four persons in the correct order, and 13.5% did not identify any in the correct order. The mean number of correct responses to the questions assessing knowledge of the legal validity of ACDs was 2.6 (SD = 1.1) out of a possible score of 6. Only 28 participants (23.7%) correctly answered four or more knowledge statements correctly. None of the explored variables were significantly associated with higher knowledge of the legal validity of ACDs. Uncertainty about the currency of ACDs and uncertainty about the legal implications of relying on an ACD when a patient's family or substitute decision maker disagree with it were the main barriers to enacting ACDs. CONCLUSION: JMOs knowledge of the legal validity of ACDs for persons without decision making capacity and the substitute decision making hierarchy is limited. There is a clear need for targeted education and training to improve knowledge in this area for this cohort.

Brain cancer patient and support persons' experiences of psychosocial care: a mapping of research outputs.

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.

Preferences for life expectancy discussions following diagnosis with a life-threatening illness: a discrete choice experiment.

PURPOSE: To explore in a sample of adult cancer patients: (1) the relative influence of initiation source, information format and consultation format on preferred approach to life expectancy disclosure using a discrete choice experiment (DCE); and (2) whether patient age, cancer type and perceived prognosis were associated with preferences within the three attributes. METHODS: A DCE survey of adult solid tumour and haematological cancer patients. Participants chose between three hypothetical scenarios about life expectancy disclosure consisting of three attributes: initiation source (i.e. doctor versus patient-initiated discussion), information content (i.e. estimate presented as best-worst-typical length of life case scenario versus median survival time) and consultation format (i.e. two 20-min versus one 40-min consultation). Respondents selected their most preferred scenario within each question. RESULTS: Three hundred and two patients completed the DCE (78% consent rate). Initiation source was the most influential predictor of patient choice. More preferred a doctor deliver life expectancy information as soon as it is available rather than waiting for the patient to ask (59% vs 41% z = - 7.396, p < 0.01). More patients preferred the two 20-min rather than the one 40-min consultation format (55% vs 45%, z = 4.284, p < 0.01). Information content did not influence choice. Age, cancer type, and patient-perceived prognosis were not associated with preferences. CONCLUSION: Healthcare professionals should assess cancer patients' preferences for engaging in life expectancy discussions as soon as they have this information, and ensure patients have adequate time to consider the information they receive, seek additional information and involve others if they wish.

Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study.

PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.

Knowledge and confidence of junior medical doctors in discussing and documenting resuscitation plans: a cross-sectional survey.

BACKGROUND: A resuscitation plan is a medically authorised order to use or withhold resuscitation interventions. Absence of appropriate resuscitation orders exposes patients to the risk of invasive medical interventions that may be of questionable benefit depending on individual circumstances. AIMS: To describe among junior doctors: (i) self-reported confidence discussing and completing resuscitation plans; (ii) knowledge of resuscitation policy including whether resuscitation plans are legally enforceable and key triggers for completion; and (iii) the factors associated with higher knowledge of triggers for completing resuscitation plans. METHODS: A cross-sectional survey was conducted at five hospitals. Junior doctors on clinical rotation were approached at scheduled training sessions, before or after ward rounds or at change of rotation orientation days and provided with a pen-and-paper survey. RESULTS: A total of 118 junior doctors participated. Most felt confident discussing (79%; n = 92) and documenting (87%; n = 102) resuscitation plans with patients. However, only 45% (n = 52) of doctors correctly identified that resuscitation plans are legally enforceable medical orders. On average, doctors correctly identified 6.8 (standard deviation = 1.8) out of 10 triggers for completing a resuscitation plan. Doctors aged >30 years were four times more likely to have high knowledge of triggers for completing resuscitation plans (odds ratio 4.28 (95% confidence interval 1.54-11.89); P = 0.0053). CONCLUSION: Most junior doctors feel confident discussing and documenting resuscitation plans. There is a need to improve knowledge about legal obligations to follow completed resuscitation plans, and about when resuscitation plans should be completed to ensure they are completed with patients who are most at risk.

Psychosocial well-being of brain cancer patients and support persons: A mapping review of study types over time.

INTRODUCTION: This review examined the: (1) number of publications exploring psychosocial outcomes of adults with brain cancer and/or support persons between 1999 and 2019 and whether there has been a change in the type of research over time; and (2) proportion of intervention studies meeting Cochrane Effective Practice and Organisation of Care (EPOC) research design criteria. METHODS: Embase, The Cochrane Library, Medline and PsycINFO databases were electronically searched January 1999 to December 2019. Articles were examined against inclusion/exclusion criteria and coded into measurement, descriptive or intervention categories. Intervention studies were assessed against the EPOC design criteria. RESULTS: 220 eligible publications were identified. The number of total publications significantly increased by an average of 1 each year (95%CI = 0.7-1.3; p < 0.001). There was no significant change in the proportion of publications by study type across three time periods. Descriptive research represented the majority within each time period. Of the 17 intervention studies, only 7(41%) met EPOC design criteria. CONCLUSIONS: Published literature on brain cancer psychosocial outcomes has increased significantly. However, descriptive research dominates research output. To increase high-level knowledge that can guide psychosocial care of people with brain cancer, there is a need to undertake methodologically rigorous intervention trials.

Gaps in patient-centered follow-up cancer care: a cross sectional study.

Objective There are published guidelines on the care that should be provided to cancer patients upon finishing treatment (i.e. follow-up care). Gaps in care may arise where patients' reported experiences of care do not align with guideline recommendations. The aim of this study was to explore whether oncology patients report gaps in patient-centered follow-up care. Methods This study was a cross-sectional survey of adult cancer patients receiving follow-up care within four outpatient oncology clinics. Patients were approached in clinic waiting rooms and asked to complete an electronic survey. The survey examined patients' self-report of receiving six aspects of follow-up care. Results A total of 239 participants completed the survey (study consent rate = 83%). Only 49% of participants received all six items of care. Patients reported high rates of being told who to contact if they have any questions or concerns (95%); who to contact if signs or symptoms occur (91%); and what to expect in their follow-up care (90%). A lower proportion of patients indicated they were informed about the role of their GP after treatment has finished (79%); what symptoms or signs might suggest the cancer had returned (74%); or were given a written care plan (71%). Conclusions: The study highlights that there is a gap between some aspects of optimal patient-centered care, and the actual care received by patients. Health care providers and researchers should consider how to improve follow-up care experiences to ensure best practice cancer care delivery during this important stage in cancer survivorship.

Oncology nurses' perceptions of advance directives for patients with cancer.

This study examined oncology nurses' perceptions of the impact of advance directives on oncology patients' end-of-life care. Nurses (n = 104), who were members of an oncology nursing society or worked in a large metropolitan cancer center, completed a cross-sectional survey assessing perceptions of advance directives. There was high agreement that advance directives (i) make decisions easier for family (87%) and providers (82%); (ii) are doctors' responsibility to implement (80%); (iii) reduce unwanted aggressive treatment in the last weeks of life (80%); (iv) protect patient autonomy (77%); and (v) increase the likelihood of dying in a preferred location (76%). There was moderate or low agreement that advance directives (i) are accessible when needed (60%); (ii) are oncology nurses' responsibility to implement (46%); (iii) are always followed (41%); (iv) reduce the likelihood of pain in the last weeks of life (31%); (v) contain difficult to follow statements (30%); and (vi) have no impact on comfort in the last weeks of life (15%). Most nurses perceive benefits for advance directives, however, there remains uncertainty around accessibility and implementation. Guidelines and education about advance directive processes in oncology could improve person-centered end-of-life care.

The System for Patient Assessment of Cancer Experiences (SPACE): a cross-sectional study examining feasibility and acceptability.

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.

Perceptions of optimal end-of-life care in hospitals: A cross-sectional study of nurses in three locations.

AIM: To examine whether nurses' location of employment, demographics, or training influences their perceptions of what constitutes optimal care for dying patients in hospital. DESIGN: Questionnaire-based, cross-sectional study. METHODS: Between December 2016-June 2018, 582 registered or enrolled nurses from Australia (N = 153), South Korea (N = 241), and Hong Kong (N = 188) employed in a variety of hospital care units rated the extent to which they agreed with 29 indicators of optimal end-of-life care across four domains: patient, family, healthcare team, and healthcare system. Latent class analysis identified classes of respondents with similar responses. RESULTS: Top five indicators rated by participants included: 'physical symptoms managed well'; 'private rooms and unlimited visiting hours'; 'spend as much time with the patient as families wish'; 'end-of-life care documents stored well and easily accessed' and 'families know and follow patient's wishes'. Four latent classes were generated: 'Whole system/holistic' (Class 1); 'Patient/provider-dominated' (Class 2); 'Family-dominated' (Class 3) and 'System-dominated' (Class 4). Class 1 had the highest proportion of nurses responding positively for all indicators. Location was an important correlate of perceptions, even after controlling for individual characteristics. CONCLUSION: Nurses' perceptions of optimal end-of-life care are associated with location, but perhaps not in the direction that stereotypes would suggest. Findings highlight the importance of developing and implementing location-specific approaches to optimize end-of-life care in hospitals. IMPACT: The findings may be useful to guide education and policy initiatives in Asian and Western countries that stress that end-of-life care is more than symptom management. Indicators can be used to collect data that help quantify differences between optimal care and the care actually being delivered, thereby determining where improvements might be made.

Nurses' perceptions of and barriers to the optimal end-of-life care in hospitals: A cross-sectional study.

AIMS AND OBJECTIVES: To assess nurses' perceptions of what constitutes optimal end-of-life (EOL) care in hospital and evaluate nurses' perceived barriers to EOL care delivery. BACKGROUND: Care of dying patients is common in hospitals. However, little is known about the important elements of and barriers to optimal EOL care from key service providers' perspective, which is crucial for quality EOL care in hospital settings. METHOD: This is a cross-sectional survey. Nurses practising in hospitals recruited by convenience sampling completed self-report survey questionnaires. STROBE checklist was used in study reporting. RESULTS: One hundred and-seventy-five nurses participated in the survey. The majority (70%) had experience in caring for dying patients. The five most highly perceived factors constituting optimal EOL care included the following: "families know and follow patient's EOL wishes"; "patients emotional concerns identified and managed well"; "patients participating in decision-making"; "EOL care documents stored well and easily accessed"; and "provide private rooms and unlimited visiting hours for families of dying patients". Top five barriers were "doctors are too busy"; "nurses are too busy"; "insufficient private room/space"; "nurses have limited training in EOL care"; and "families have unrealistic expectations of patient's prognosis." Multivariate regression analysis identified that nurses without experience in caring for dying patients reported a significantly higher number of perceived barriers towards EOL care (p = .012). Those with postgraduate degree training reported significantly fewer perceived barriers (p = .007). CONCLUSION: Findings identified essential elements for optimal hospital EOL care not only involving patients and families in EOL decision and care, but also documentation and environmental issues in the healthcare system level and the needs for strengthening manpower and expertise at palliative care policy level. RELEVANCE TO CLINICAL PRACTICE: This study revealed quantitative data to inform health service managers and policy makers in terms of training and service development/ re-design for EOL care in hospital settings.

Medical oncology outpatients' preferences and experiences with advanced care planning: a cross-sectional study.

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.

"It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers.

PURPOSE: Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qualitative study aimed to explore the experiences of patients suffering from mesothelioma and their carers and their perceptions of how their needs may be addressed. METHODS: Eligible patients and carers were identified by a lung cancer care coordinator at each participating site, and invited to participate in one-on-one semi-structured telephone interviews (n = 5 patients, n = 3 carers), or in one of two focus groups (n = 3 patients, n = 3 carers). Discussions focusing on participants' experiences relating to physical, psychological, social, information and carer domains were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: The five major themes identified were (1) time of diagnosis is a particularly difficult period; (2) the timeliness, accuracy and balance of mesothelioma information is problematic; (3) coping strategies ranged from antagonism to acceptance; (4) the emotional and physical load of caring for the patient is significant and (5) carers need one-on-one support. CONCLUSION: Mesothelioma patients and their carers face significant challenges, particularly around the time of diagnosis and in the physical, psychological and social/practical domains. There is a clear need for additional information, delivered in a timely and psychologically sensitive manner, as well as for practical and emotional support. Quantitative research may shed greater light on the prevalence and severity of challenges and needs reported by participants, and determine the usefulness of resources such as case workers and dyadic coping interventions in addressing these.

Assessing patients' experiences of cancer care across the treatment pathway: a mapping review of recent psychosocial cancer care publications.

PURPOSE: Patients are a critical source of information about the quality of the components of cancer care that contributes to optimal psychosocial outcomes. Recently published research was examined to determine the: (1) proportion of studies that examined at least one of 14 components of cancer care, (2) the proportion of studies that included multiple components of care, and (3) the phase of the cancer care pathway in which data collection occurred (i.e. pre-, during and post-treatment). METHODS: MEDLINE was searched to retrieve all data-based publications indexed for two international psychosocial cancer care journals (Supportive Care in Cancer and Psycho-Oncology) over a 2-year period. A total of 333 publications yielded 214 eligible publications that were assessed against the 14 components of care for which measurement by healthcare providers at multiple phases during cancer care is recommended. Publications were coded based on the: (1) specific component/s of care focused upon in the research, (2) number of components examined and (3) timing of data collection. RESULTS: The most frequently assessed component of care was physical and psychosocial screening (n = 198, 93%). Most studies (n = 187, 87%) examined a single component of care. No studies assessed all 14 components. Only seven studies (2.1%) examined components of care across multiple phases of the care pathway. CONCLUSIONS: Recently published studies have examined limited segments of patients' experiences of cancer care. To improve psychosocial outcomes among people living with and beyond cancer, there should be a greater focus on patients' experiences across multiple components and the whole care pathway.

Are older and seriously ill inpatients planning ahead for future medical care?

BACKGROUND: Despite the perceived ethical, personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain. This study aimed to determine in a sample of older and seriously ill inpatients, the proportion who had: 1) engaged in four advance care planning (ACP) activities; 2) not engaged in ACP activities but wanted to; and 3) reasons why they had not engaged. METHODS: Cross-sectional face-to-face standardised interview survey with inpatients in a tertiary referral centre who were either: aged 80+ years; aged 55+ years with progressive chronic disease(s); or judged by treating clinicians as having a life expectancy of less than 12 months. Patients indicated whether they had engaged in four ACP activities: (1) appointed medical substitute-decision-maker(s), (2) recorded end-of-life wishes in an advance directive or care plan; and talked about their end-of-life wishes with their: (3) support persons and/or (4) doctors. Patients who had not engaged in activities were asked whether they wished this to occur and reasons why. RESULTS: One hundred eighty-six inpatients consented to the study (80% of approached). Of these, 9% (n = 16) had engaged in four ACP activities; 27% (n = 50) had not engaged in any. Half (n = 94, 52%) had appointed a medical substitute-decision-maker, 27% (n = 50) had recorded wishes in an advance directive or care plan, 51% (n = 90) had talked about their end-of-life wishes with support persons and 27% (n = 48) had talked with their doctor. Patients who wanted to, but had not, engaged in the four ACP activities were unaware they could record wishes or appoint decision-makers, or indicated providers had not initiated conversations. CONCLUSION: Relatively few inpatients had engaged in all four ACP activities. More inpatients had discussed end of life issues with family and appointed substitute decision makers, than completed written documents or talked with doctors. Community education and a more active role for community and hospital-based providers in supporting patients and families to collaboratively resolve end-of-life decisions may increase the probability wishes are known and followed.

Radiation oncology outpatients' patterns of life expectancy discussions.

OBJECTIVES: To describe the (a) number and type of cancer care providers that radiation oncology outpatients report discussing life expectancy with, and (b) perceptions of the acceptability and utility of life expectancy information. METHODS: A cross-sectional survey of patients receiving radiotherapy was undertaken in four treatment centres. Patients indicated whether they had discussed life expectancy with a cancer doctor (i.e., medical oncologists, radiation oncologists, surgeon, haematologists) and/or other cancer care provider (i.e., general practitioner, radiation therapist, nurse); and acceptability and utility of information. RESULTS: Of 207 respondents, 133 (64%) had discussed life expectancy with at least one provider. General practitioners (GPs) were the most frequent source of information. Of those who had discussed life expectancy, half (n = 110/207) perceived cancer would not impact life expectancy. Information was easy to understand (91%), discussed sensitively (90%), helped plan for future (83%) and gave them certainty (86%). The information made 11% feel overloaded and 34% feel anxious. CONCLUSION: Two-thirds of respondents had discussed life expectancy with at least one cancer care provider. Providers from the range of disciplines involved in cancer care need to be skilled at communicating life expectancy information and recognising the adverse impact this may have on some patients.