Cross-cultural adaptation and psychometric validation of point-of-care outcome assessment tools in Chinese palliative care clinical practice.

BACKGROUND: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase. METHODS: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments. RESULTS: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53). CONCLUSIONS: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.

Patient-reported outcome measurement of symptom distress is feasible in most clinical scenarios in palliative care: an observational study involving routinely collected data.

BACKGROUND: Implementation of routinely collected patient-reported outcome measures (PROMs) ensures patients' priorities are at the forefront of care planning and helps to standardize approaches to quality improvement. In palliative care, barriers to PROMs are widely known but what are not understood are the clinical and care settings in which patients are more likely to report and when proxy reporting is needed. OBJECTIVE: To examine the incidence of patient-reported symptom distress compared to the incidence of proxy reporting in palliative care and influencing factors. METHODS: A national observational study using routinely collected PROMs data with influencing factors investigated by logistic regression modelling. Participants were patients with an advanced life-limiting illness receiving palliative care in an inpatient or a community healthcare setting in Australia. RESULTS: Sixteen thousand one hundred and fifty-eight reports of symptom distress were collected from 1117 patients seen by 21 palliative care services. The majority of respondents were diagnosed with cancer (76%), were older (≥65 years, 72%) and had nominated English as their first language (88%). The majority of symptom distress reports were completed by patients (61%). The odds of a patient providing a self-report where grater when they were receiving community versus inpatient palliative care (odds ratio (OR): 3.0; 95% confidence interval (CI): 2.25-4.01), for patients diagnosed with malignant versus non-malignant disease (OR 1.7; 95% CI: 1.26-2.31), and for those who required an urgent change in their care plan versus those whose symptoms and problems were adequately managed (OR: 1.38; 95% CI: 1.04-1.83). CONCLUSION: Three factors are associated with an increased likelihood of patient versus proxy reporting in palliative care: healthcare setting, diagnosis, and the acuity and urgency of the patient's clinical needs. PROMs are feasible in most clinical scenarios in palliative care, including when an urgent clinical response is required.

The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs.

BACKGROUND: Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). METHODS: A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS's internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC. RESULTS: Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity. CONCLUSION: PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BACKGROUND: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. METHODS: Mortality follow-back postal survey. SETTING: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). PARTICIPANTS: Informal carers (ICrs) of decedents who had received palliative care. DATA: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). ANALYSIS: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. RESULTS: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. CONCLUSIONS: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

BACKGROUND: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. AIM: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. DESIGN: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. SETTING: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). PARTICIPANTS: Informal carers of decedents who had received palliative care participated in the study. RESULTS: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. CONCLUSION: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

Optimal Cancer Care for Aboriginal and Torres Strait Islander People: A Shared Approach to System Level Change.

PURPOSE: To improve cancer outcomes for Aboriginal and Torres Strait Islander people through the development and national endorsement of the first population-specific optimal care pathway (OCP) to guide the delivery of high-quality, culturally appropriate, and evidence-based cancer care. METHODS: An iterative methodology was undertaken over a 2-year period, and more than 70 organizations and individuals from diverse cultural, geographic, and sectorial backgrounds provided input. Cancer Australia reviewed experiences of care and the evidence base and undertook national public consultation with the indigenous health sector and community, health professionals, and professional colleges. Critical to the OCP development was the leadership of Aboriginal and Torres Strait Islander health experts and consumers. RESULTS: The OCP received unanimous endorsement by all federal, state, and territory health ministers. Key elements of the OCP include attention to the cultural appropriateness of the health care environment; improvement in cross-cultural communication; relationship building with local community; optimization of health literacy; recognition of men's and women's business; and the need to use culturally appropriate resources. The OCP can be used as a tool for health services and health professionals to identify gaps in current cancer services and to inform quality improvement initiatives across all aspects of the care pathway. CONCLUSION: The development of the OCP identified a number of areas that require prioritization. Ensuring culturally safe and accessible health services is essential to support early presentation and diagnosis. Multidisciplinary treatment planning and patient-centered care are required for all Aboriginal and Torres Strait Islander people, irrespective of location. Health planners and governments acknowledge the imperative for change and have expressed strong commitment to work with indigenous Australians to improve the accessibility, cultural appropriateness, and quality of cancer care.

How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem.

BACKGROUND: Assessment of people with dementia is challenging; with undetected and under treated symptoms and concerns resulting in avoidable distress, and few evidence-based interventions to support this. We aimed to understand the mechanisms of action of a measure to support comprehensive assessment of people with dementia in care homes; and its acceptability, feasibility, and implementation requirements. METHODS: A qualitative study with an embedded quantitative component in three residential care homes, underpinned by an initial theoretical model of mechanisms of action. The measure, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), was introduced into the care of residents with dementia for 12 weeks. Qualitative data comprised focus groups and semi-structured interviews with family, care home staff, general practitioners and district nurses; and non-participant observations. Quantitative data comprised IPOS-Dem data. Directed content analysis for qualitative data, and descriptive statistics were used for quantitative data. FINDINGS: Key mechanisms of action were: improved observation and awareness of residents, collaborative assessment, comprehensive 'picture of the person', systematic record keeping, improved review and monitoring, care planning and changes to care provision, and facilitated multi-agency communication. Potential benefit included improved symptom management, improved comprehensive care, and increased family empowerment and engagement. IPOS-Dem was found to be acceptable and feasible. It was perceived as quick and easy to use, with proportion of overall missing data decreasing from 2.1% to 1.1% from baseline to final time points. 'Trust' in the measure was important; and leadership essential to ensure integration into care processes. CONCLUSIONS: In a population with complex care needs, with challenges to assessment and barriers to multi-agency working, a measure introduced into routine care is feasible and acceptable, and supports assessment and management of symptoms and concerns. A refined theoretical model demonstrating the likely mechanisms of action was developed. Further evaluation is required to test its effectiveness.

Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study.

BACKGROUND: Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients. AIM: To describe the challenges and outline strategies of recruiting advanced chronic heart failure patients. DESIGN: A feasibility study using a pre-post uncontrolled design. SETTING: Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in Ireland Results: Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients. CONCLUSION: Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population.

Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study.

BACKGROUND: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. AIM: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. DESIGN: Semi-structured in-depth qualitative interviews analysed using thematic analysis. SETTING/PARTICIPANTS: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). RESULTS: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. CONCLUSION: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study.

BACKGROUND: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients' needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. AIM: To explore whether and how a palliative care-specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients' experience of patient-centred care in nurse-led chronic heart failure disease management clinics. DESIGN: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. SETTING/PARTICIPANTS: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II-IV. Nurses who led these clinics were eligible for inclusion. RESULTS: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients' symptoms and concerns, facilitating patient-nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. CONCLUSION: This Integrated Palliative care Outcome Scale-based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries.

BACKGROUND: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death. METHODS: We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors. RESULTS: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a mismatch between preferences and achievements - of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference. CONCLUSION: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'.

Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure.

Patients with chronic heart failure (CHF) have symptoms and concerns which are inadequately addressed. Patient-reported outcome measures (PROMs) can potentially improve the identification and management of advanced symptoms and palliative concerns. However, these have not been used in CHF. OBJECTIVES: To examine the feasibility and acceptability of using a PROM-the Integrated Palliative care Outcome Scale (IPOS)-together with heart failure nurse education and training to improve the identification and management of symptoms and concerns among patients with CHF. METHODS: A parallel, mixed methods design with an embedded qualitative component was used to examine the feasibility of recruitment, retention, intervention adherence/compliance and follow-up assessment completion (symptom burden, quality of life, psychological well-being). Patient and nurse qualitative semistructured interviews explored intervention and study design feasibility and its acceptability. RESULTS: Conversion to consent was 46.9% (372 screened, 81 approached, 38 recruited). 66% of patient participants completed the IPOS; 6% of IPOS questionnaire items were missing (non-response). Over two-thirds (65.6%) of these missing items related to three patients. No item was consistently missing; appetite was the most frequent missing item (1.4%). 92% of participants who completed the IPOS completed all follow-up assessments (1-2 days, 1-2 weeks and 4-6 weeks post-IPOS completion) with no missing data. The a priori feasibility objectives were met. Patients and nurses reported the intervention and study design feasible and acceptable. CONCLUSIONS: A palliative-specific PROM-based intervention is feasible and acceptable to both patients with CHF and nurses in nurse-led disease management clinics for the purposes of both clinical care and research.

Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia.

BACKGROUND: Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale-Symptom and Integrated Palliative care Outcome Scale. AIM: To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia. DESIGN: A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews. SETTING/PARTICIPANTS: Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews. RESULTS: A total of 26 respondents participated in the focus groups ( n = 21) or semi-structured interviews ( n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents. CONCLUSION: Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for further psychometric testing.

Professional Supervision as Storied Experience: Narrative Analysis Findings for Australian-Based Registered Music Therapists.

BACKGROUND: Limited research exists to inform a music therapist's supervision story from their pre-professional training to their practice as a professional. Evidence is needed to understand the complex nature of supervision experiences and their impact on professional practice. OBJECTIVE: This qualitative study explored the supervisory experiences of Australian-based Registered Music Therapists, according to the: 1) themes that characterize their experiences, 2) influences of the supervisor's professional background, 3) outcomes of supervision, and 4) roles of the employer, the professional music therapy association, and the university in supervision standards and practice. METHODS: Seven professionals were interviewed for this study. Five stages of narrative analysis were used to create their supervision stories: a life course graph, narrative psychological analysis, component story framework and narrative analysis, analysis of narratives, and final integration of the seven narrative summaries. RESULTS: Findings revealed that supervision practice is influenced by a supervisee's personal and professional needs. A range of supervision models or approaches is recommended, including the access of supervisors from different professional backgrounds to support each stage of learning and development. A quality supervisory experience facilitates shifts in awareness and insight, which results in improved or increased skills, confidence, and accountability of practice. Participants' concern about stakeholders included a limited understanding of the role of the supervisor, a lack of clarity about accountability of supervisory practice, and minimal guidelines, which monitor professional competencies. CONCLUSIONS: The benefits of supervision in music therapy depend on the quality of the supervision provided, and clarity about the roles of those involved. Research and guidelines are recommended to target these areas.

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA.

Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients' self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.

'I'll be in a safe place': a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care.

OBJECTIVE: To explore the decisions of people with advanced cancer and their caregivers to seek emergency department (ED) care, and understand the issues that influence the decision-making process. DESIGN: Cross-sectional qualitative study incorporating semistructured patient and caregiver interviews. METHODS: Between December 2014 and July 2015, semistructured interviews were conducted with 18 people with advanced cancer, all of whom had recently attended the ED of a large university teaching hospital located in south-east London; and six of their caregivers. Interviews were audio recorded, transcribed verbatim and analysed using a constant comparative approach. Padgett and Brodsky's modified version of the 'Behavioral Model of Health Services Use' was used as a framework to guide the study. RESULTS: Issues influencing the decision-making process included: (1) disease-related anxiety-those with greater anxiety related to their cancer diagnosis interpreted their symptoms as more severe and/or requiring immediate attention; (2) prior patterns of health-seeking behaviour-at times of crisis participants defaulted to previously used services; (3) feelings of safety and familiarity with the hospital setting-many felt reassured by the presence of healthcare professionals and monitoring of their condition; and, (4) difficulties accessing community healthcare services-especially urgently and/or out-of-hours. CONCLUSIONS: These data provide healthcare professionals and policymakers with a greater understanding of how systems of care may be developed to help reduce ED visits by people with advanced cancer. In particular, our findings suggest that the number of ED visits could be reduced with greater end-of-life symptom support and education, earlier collaboration between oncology and palliative care, and with increased access to community healthcare services.

Of apples and oranges: Lessons learned from the preparation of research protocols for systematic reviews exploring the effectiveness of Specialist Palliative Care.

BACKGROUND: Agreed terminology used in systematic reviews of the effectiveness of specialist palliative care ((S)PC)) is required to ensure consistency and usability and to help guide future similar reviews and the design of clinical trials. During the preparation of protocols for two separate systematic reviews that aimed to assess the effectiveness of SPC, two international research groups collaborated to ensure a high degree of methodological consensus and clarity between reviews. During the collaboration, it became evident that close attention is needed to (i) avoid ambiguity in the definition of advanced illness, (ii) capture the specialist expertise and prerequisites for SPC interventions, and (iii) the multi-professional and multi-dimensional nature of PC. Also, (iv) the exclusion of relevant studies or (v) impracticality of meta-analyses of the obtained data must be avoided. The aim of this article is to present the core issues of the discussion to help future research groups to easily identify potential pitfalls and methodologic necessities. CORE ISSUE DISCUSSION: Core issues that arose from the discussion are presented along the research questions according to the PICO process: Population (P): Authors should refer to existing definitions of PC to ensure that, even if the review aims to investigate specific patients (e.g. cancer patients), it is important to make clear that PC is applicable for all life-limiting diseases and not limited to end-of-life or cancer. Intervention (I): PC is a core responsibility of all disciplines (general PC). In contrast, SPC demands further training and expertise. Therefore, core tenets of SPC interventions are that they are (i) multi-professional and (ii) aim at the multi-dimensional nature of suffering. Outcome (O): The main goal of PC is multi-dimensional (quality of life, suffering or distress). Yet, meta-analysis may be complex to conduct due to the heterogeneity of the multi-dimensional outcomes. Therefore, the assessment of uni-dimensional measures such as pain can also provide clinically relevant information that is easier to obtain. DISCUSSION AND CONCLUSION: Recommendations for future systematic reviews and clinical trials include: (i) Appraise the experience of other research groups who have produced similar systematic reviews or clinical trials. (ii) Include studies that meet the multi-professional and multi-dimensional nature of PC and the specialization requirements for SPC. (iii) Thoroughly weigh relevance and practicability of the primary outcome. Multi-dimensional tools such as quality-of-life questionnaires assess the different dimensions of suffering (the true scope of PC), but uni-dimensional measures such as pain are easier to assess in meta-analyses.

Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review.

BACKGROUND: High symptom burden is common in long-term care residents with dementia and results in distress and behavioral challenges if undetected. Physicians may have limited time to regularly examine all residents, particularly those unable to self-report, and may rely on reports from caregivers who are frequently in a good position to detect symptoms quickly. We aimed to identify proxy-completed assessment measures of symptoms experienced by people with dementia, and critically appraise the psychometric properties and applicability for use in long-term care settings by caregivers. METHODS: We searched Medline, EMBASE, PsycINFO, CINAHL and ASSIA from inception to 23 June 2015, supplemented by citation and reference searches. The search strategy used a combination of terms: dementia OR long-term care AND assessment AND symptoms (e.g. pain). Studies were included if they evaluated psychometric properties of proxy-completed symptom assessment measures for people with dementia in any setting or those of mixed cognitive abilities residing in long-term care settings. Measures were included if they did not require clinical training, and used proxy-observed behaviors to support assessment in verbally compromised people with dementia. Data were extracted on study setting and sample, measurement properties and psychometric properties. Measures were independently evaluated by two investigators using quality criteria for measurement properties, and evaluated for clinical applicability in long-term settings. RESULTS: Of the 19,942 studies identified, 40 studies evaluating 32 measures assessing pain (n = 12), oral health (n = 2), multiple neuropsychiatric symptoms (n = 2), depression (n = 8), anxiety (n = 2), psychological wellbeing (n = 4), and discomfort (n = 2) were included. The majority of studies (31/40) were conducted in long-term care settings although none of the neuropsychiatric or anxiety measures were validated in this setting. The pain assessments, PAINAD and PACSLAC had the strongest psychometric evidence. The oral health, discomfort, and three psychological wellbeing measures were validated in this setting but require further psychometric evaluation. Depression measures were poor at detecting depression in this population. All measures require further investigation into agreement, responsiveness and interpretability. CONCLUSIONS: Measures for pain are best developed for this population and setting. All other measures require further validation. A multi-symptom measure to support comprehensive assessment and monitoring in this population is required.

Factors associated with aggressive end of life cancer care.

BACKGROUND: Many patients with cancer experience aggressive care towards the end of life (EOL) despite evidence of an association with poor outcomes such as prolonged pain and overall dissatisfaction with care. PURPOSE: To investigate socio-demographic, clinical and community health care service factors associated with aggressive EOL cancer care. METHODS: An analysis of pooled data from two mortality follow-back surveys was performed. Aggressive EOL care was defined as greater than or equal to one of the following indicators occurring during the last 3 months of life: greater than or equal to two emergency department visits, ≥30 days in hospital and death in hospital. RESULTS: Of the 681 included patients, 50.1% were men and mean age at death was 75 years. The majority of patients (59.3%, 95% confidence interval (CI) 55.6-63.0%) experienced at least one indicator of aggressive EOL care: 29.7% experienced greater than or equal to two ED visits, 17.1% spent ≥30 days in hospital and 37.9% died in hospital. Patients with prostate or haematological cancer were more likely to experience aggressive EOL care (adjusted odds ratio (AOR) 4.36, 95% CI 1.39-13.70, and 4.16, 95% CI 1.38-12.47, respectively, reference group lung cancer). Patients who received greater than five general practitioner (GP) home visits (AOR 0.37, 95% CI 0.17-0.82, reference group no GP visits) or had contact with district nursing (AOR 0.48, 95% CI 0.28-0.83, reference group no contact) or contact with community palliative care services (AOR 0.27, 95% CI 0.15-0.49, reference group no contact) were less likely to experience aggressive EOL care. No association was found between aggressive EOL care and patients' age, gender, marital, financial or health status. CONCLUSIONS: Community health care services, in particular contact with community palliative care, are associated with a significant reduction in the odds of cancer patients receiving aggressive EOL care. Expansion of such services may help address the current capacity crises faced by many acute health care systems.