Cirrhosis with ascites in the last year of life: a nationwide analysis of factors shaping costs, health-care use, and place of death in England.

BACKGROUND: Liver disease mortality increased by 400% in the UK between 1970 and 2010, resulting in rising pressures on acute hospital services, and an increasing need for end-of-life care. We aimed to assess the effect of demographic, clinical, and health-care factors on costs, patterns of health-care use, and place of death in a national cohort of patients with cirrhosis and ascites in their last year of life. METHODS: We did a retrospective, nationwide analysis of all patients who died from cirrhosis in England between 2013 and 2015, who required large-volume paracentesis in their last year of life. The outcomes measured were health-care costs accrued in the last year of life, number of inpatient days in last year of life, 30-day readmission rate, and occurrence of unplanned hospital death (probability of dying in hospital after unplanned admission). Using generalised linear and logistic regression models, we examined the effect of 12 independent variables on each outcome: sex, ethnicity, age at death, index of multiple deprivation quintile, year of death, liver disease causing death, place of death, time from index presentation in last year of life to death, whether enrolled in a day-case paracentesis service (care group), paracentesis ratio (number of day-case large-volume paracentesis procedures as a proportion of the total number of procedures in the last year of life), number of hospital episodes in the last year of life (not involving large-volume paracentesis), and number of large-volume paracentesis procedures in the last year of life. FINDINGS: Between Jan 1, 2013, and Dec 31, 2015, 13 818 people in England died from liver disease and had large-volume paracentesis within their last year of life. For all patients, mean cost of the last year of life was £21 113 (SD 16 881), 17 888 (52·5%) of 34 068 readmissions occurred within 30 days of discharge, and 10 341 (74·8%) of 13 818 deaths occurred in hospital, of which 10 045 (97·1%) followed an emergency hospital admission. Patients who attended a day-case large-volume paracentesis service within their last year of life had significant reductions in cost (-£4240, 95% CI -4829 to -3651; p<0·0001), number of inpatient bed days (-16·98 days, -18·45 to -15·51; p<0·0001), probability of early readmission (odds ratio [OR] 0·35, 95% CI 0·31 to 0·40; p<0·0001), and probability of dying in hospital after unplanned admission (0·31, 0·27 to 0·34; p<0·0001), compared with patients who had unplanned care. For patients enrolled in day-case services, improvements in outcomes correlated with the proportion of large-volume paracentesis procedures done in a day-case (vs unplanned) setting. INTERPRETATION: The use of day-case large-volume paracentesis services in the last year of life was associated with lower costs, reduced pressure on acute hospital services, and a lower probability of dying in hospital, compared with patients who received exclusively unplanned care in their last year of life. Wider adoption of day-case models of care could reduce costs and improve outcomes in the last year of life. FUNDING: David Telling Charitable Trust.

A multicentre non-blinded randomised controlled trial to assess the impact of regular early specialist symptom control treatment on quality of life in malignant mesothelioma (RESPECT-MESO): study protocol for a randomised controlled trial.

BACKGROUND: Malignant pleural mesothelioma is an incurable cancer caused by exposure to asbestos. The United Kingdom has the highest death rate from mesothelioma in the world and this figure is increasing. Median survival is 8 to 12 months, and most patients have symptoms at diagnosis. The fittest patients may be offered chemotherapy with palliative intent. For patients not fit for systemic anticancer treatment, best supportive care remains the mainstay of management. A study from the United States examining advanced lung cancer showed that early specialist palliative care input improved patient health related quality of life and depression symptoms 12 weeks after diagnosis. While mesothelioma and advanced lung cancer share many symptoms and have a poor prognosis, oncology and palliative care services in the United Kingdom, and many other countries, vary considerably compared to the United States. The aim of this trial is to assess whether regular early symptom control treatment provided by palliative care specialists can improve health related quality of life in patients newly diagnosed with mesothelioma. METHODS: This multicentre study is an non-blinded, randomised controlled, parallel group trial. A total of 174 patients with a new diagnosis of malignant pleural mesothelioma will be minimised with a random element in a 1:1 ratio to receive either 4 weekly regular early specialist symptom control care, or standard care. The primary outcome is health related quality of life for patients at 12 weeks. Secondary outcomes include health related quality of life for patients at 24 weeks, carer health related quality of life at 12 and 24 weeks, patient and carer mood at 12 and 24 weeks, overall survival and analysis of healthcare utilisation and cost. DISCUSSION: Current practice in the United Kingdom is to involve specialist palliative care towards the final weeks or months of a life-limiting illness. This study aims to investigate whether early, regular specialist care input can result in significant health related quality of life gains for patients with mesothelioma and if this change in treatment model is cost-effective. The results will be widely applicable to many institutions and patients both in the United Kingdom and internationally. TRIAL REGISTRATION: Current controlled trials ISRCTN18955704. Date ISRCTN assigned: 31 January 2014.

Can the impact of an acute hospital end-of-life care tool on care and symptom burden be measured contemporaneously?

OBJECTIVE: To determine the utility of a screening question to identify patients who might die during hospital admission and feasibility of scoring symptoms in dying patients within a study assessing the impact of a brief end-of-life (EOL) tool. METHODS: Between March 2008 and July 2010 patients admitted to five wards of an acute hospital were screened using the question 'Is this patient so unwell you feel they could die during this admission?' Once 40 patients were recruited, the brief EOL tool was introduced to the wards and a further 30 patients were recruited. Symptom scoring using the Edmonton Symptom Assessment System (ESAS) began when the patient was recognised as dying. Relatives were asked to complete the Views of Informal Carers-Evaluation of Services questionnaire to validate the results of the contemporaneous symptom assessments and assess the impact of the tool. RESULTS: The sensitivity of the screening question was 57%, specificity 98% and positive predictive value 67%, so the question was useful in enrolling study patients. There were limitations with the ESAS but core EOL symptoms were scored more frequently after the tool was introduced. Questionnaire responses suggested relatives perceived aspects of care improved with the EOL tool in place. CONCLUSIONS: It is possible to identify dying patients and study care given to them in hospital in real time. Outcome measures need to be refined, but contemporaneous symptom monitoring was possible. We argue interventions to improve EOL care should be unequivocally evidence-based, and research to provide evidence of impact on the patient experience is possible.

Pain assessment tools: is the content appropriate for use in palliative care?

Inadequate pain assessment prevents optimal treatment in palliative care. The content of pain assessment tools might limit their usefulness for proper pain assessment, but data on the content validity of the tools are scarce. The objective of this study was to examine the content of the existing pain assessment tools, and to evaluate the appropriateness of different dimensions and items for pain assessment in palliative care. A systematic search was performed to find pain assessment tools for patients with advanced cancer who were receiving palliative care. An ad hoc search with broader search criteria supplemented the systematic search. The items of the identified tools were allocated to appropriate dimensions. This was reviewed by an international panel of experts, who also evaluated the relevance of the different dimensions for pain assessment in palliative care. The systematic literature search generated 16 assessment tools while the ad hoc search generated 64. Ten pain dimensions containing 1,011 pain items were identified by the experts. The experts ranked intensity, temporal pattern, treatment and exacerbating/relieving factors, location, and interference with health-related quality of life as the most important dimensions. None of the assessment tools covered these dimensions satisfactorily. Most items were related to interference (231) and intensity (138). Temporal pattern (which includes breakthrough pain), ranked as the second most important dimension, was covered by 29 items only. Many tools include dimensions and items of limited relevance for patients with advanced cancer. This might reduce compliance and threaten the validity of the assessment. New tools should reflect the clinical relevance of different dimensions and be user-friendly.