Importance: Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking.
Objective: To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs.
Design, Setting, and Participants: Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019.
Interventions: Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174).
Main Outcomes and Measures: Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat.
Results: A total of 350 patients (mean [SD] age 67  years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers.
Conclusions and Relevance: In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted.
Background: End of life (EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life.
Methods: A retrospective cohort study of cancer patients who died in 2000–2014, based on routinely collected primary care data (the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations (primary), number of prescriptions and referral to other care services (yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio (aRR).
Results: Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations (Standard deviation (SD): 31.7; total = 3,031,734), 71.5 prescriptions (SD: 68.0; total = 5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral (aRRs 1.07–2.03). Increasing age was related to fewer consultations (aRRs 0.77–0.96), less prescriptions (aRR 1.09–1.44), and a higher chance of referral (aRRs 1.08–1.16) but less likely to have palliative care needs recognised (aRRs 0.53–0.89).
Conclusions: GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.
BACKGROUND: Hospitalisation during the last weeks of life when there is no medical need or desire to be there is distressing and expensive. This study sought palliative care initiatives which may avoid or shorten hospital stay at the end of life and analysed their success in terms reducing bed days.
METHODS: Part 1 included a search of literature in PubMed and Google Scholar between 2013 and 2018, an examination of governmental and organisational publications plus discussions with external and co-author experts regarding other sources. This initial sweep sought to identify and categorise relevant palliative care initiatives. In Part 2, we looked for publications providing data on hospital admissions and bed days for each category.
RESULTS: A total of 1252 abstracts were reviewed, resulting in ten broad classes being identified. Further screening revealed 50 relevant publications describing a range of multi-component initiatives. Studies were generally small and retrospective. Most researchers claim their service delivered benefits. In descending frequency, benefits identified were support in the community, integrated care, out-of-hours telephone advice, care home education and telemedicine. Nurses and hospices were central to many initiatives. Barriers and factors underpinning success were rarely addressed.
CONCLUSIONS: A wide range of initiatives have been introduced to improve end-of-life experiences. Formal evidence supporting their effectiveness in reducing inappropriate/non-beneficial hospital bed days was generally limited or absent.
TRIAL REGISTRATION: N/A.
BACKGROUND: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear.
AIM: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT.
DESIGN: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim.
SETTING/PARTICIPANTS: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients’ notes from each ward who died during admission or within 100 days of discharge.
RESULTS: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites.
CONCLUSIONS: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities.
BACKGROUND: People with serious mental illness have greater mortality risk than the general population. They experience health care inequalities throughout life; it is not clear if this persists to end of life.
AIM: Assess the empirical evidence describing end-of-life care and place of death for people with serious mental illness.
DESIGN: A systematic review of original, peer-reviewed research, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data were analysed using a narrative synthesis approach.
DATA SOURCES: Five online databases (Embase, PsycArticles, PsycINFO, Medline, PubMed) and additional sources were searched (without time restriction) for primary research reporting health care utilisation in the last year of life or place of death in adults with serious mental illness.
RESULTS: After full-text screening, 23 studies were included. We found studies reporting hospital admissions, emergency department care, palliative care, and general practitioner (GP) visits at end of life. We found conflicting evidence for the association between serious mental illness and end-of-life care, although different patient groups, settings and measures were used across studies. People with serious mental illness were more likely to die in care homes than the general population. There were no patterns for other places of death.
CONCLUSIONS: The evidence was sparse and heterogeneous, demonstrating variability in patterns and reporting of health care use and with little consensus on where people with serious mental illness are likely to die. Given that people with serious mental illness have increased mortality risk, this gap in the knowledge around end-of-life care outcomes is concerning; this area of research needs further development.
Importance: Improving the quality of cancer care is an international priority. Population-based quality indicators (QIs) are key to this process yet remain almost exclusively used for evaluating care during the early, often curative, stages of disease.
Objectives: To identify all existing QIs for the care of patients with cancer who have advanced disease and/or are at the end of life and to evaluate each indicator's measurement properties and appropriateness for use.
Evidence Review: For this systematic review, 5 electronic databases (MEDLINE, Embase, CINAHL, PsycINFO, and the Cochrane Library) were searched from inception through February 4, 2019, for studies describing the development, review, and/or testing of QIs for the care of patients with cancer who have advanced disease and/or are at the end of life. For each QI identified, descriptive information was extracted and 6 measurement properties (acceptability, evidence base, definition, feasibility, reliability, and validity) were assessed using previously established criteria, with 4 possible ratings: positive, intermediate, negative, and unknown. Ratings were collated and each QI classified as appropriate for use, inappropriate for use, or of limited testing. Among the QIs determined as appropriate for use, a recommended shortlist was generated by excluding those that were specific to patient subgroups and/or care settings; related QIs were identified, and the indicator with the highest rating was retained.
Findings: The search yielded 7231 references, 35 of which (from 28 individual studies) met the eligibility criteria. Of 288 QIs extracted (260 unique), 103 (35.8%) evaluated physical aspects of care and 109 (37.8%) evaluated processes of care. Quality indicators relevant to psychosocial (18 [6.3%]) or spiritual and cultural (3 [1.0%]) care domains were limited. Eighty QIs (27.8%) were determined to be appropriate for use, 116 (40.3%) inappropriate for use, and 92 (31.9%) of limited testing. The measurement properties with the fewest positive assessments were acceptability (38 [13.2%]) and validity (63 [21.9%]). Benchmarking data were reported for only 16 QIs (5.6%). The final 15 recommended QIs came from 6 studies.
Conclusions and Relevance: The findings suggest that only a small proportion of QIs developed for the care of patients with cancer who have advanced disease and/or are at the end of life have received adequate testing and/or are appropriate for use. Further testing may be needed, as is research to establish benchmarking data and to expand QIs relevant to psychosocial, cultural, and spiritual care domains.
BACKGROUND: Patients with multiple myeloma, an incurable haematological cancer, often receive palliative care only late in their trajectory. Criteria for early referral are lacking.
AIM: To identify which patients might benefit from early integration, by identifying trajectories of health-related quality of life and the determinants for declining or poor Health related quality of life .
DESIGN: Prospective, longitudinal cohort study.
PARTICIPANTS: Multiple myeloma patients at all stages (newly diagnosed, first-line or second-line treatment, early or later treatment-free interval, refractory disease) from in- and outpatient units at 14 hospitals in England were recruited. In addition to clinical information and standardised Health related quality of life and psychological aspects, the Myeloma Patient Outcome Scale (MyPOS) measured palliative care concerns.
RESULTS: A total of 238 patients were recruited, on average 3.5 years (SD: 3.4) post-diagnosis. Latent mixture growth models identified four Health related quality of life trajectories. Classes 3 and 4 represent trajectories of stable poor Health related quality of life or declining Health related quality of life over an 8-month period. The strongest predictors of poor outcome at the end of follow-up were general symptom level (odds ratio (OR): 1.3, 95% CI: 1.0–1.6, p = 0.028), presence of clinically relevant anxiety (OR: 1.2, 95% confidence interval (CI): 1.0–1.4, p = 0.019), and presence of pain (OR: 1.02, 95% CI: 1.0–1.1, p = 0.018), all being more predictive than demographic or clinical characteristics.
CONCLUSION: General symptom level, pain and presence of anxiety predict declining Health related quality of life in multiple myeloma. Identification of patients with palliative care needs should focus on assessing patient-reported symptoms and psychosocial well-being for identifying those at risk of deterioration.
BACKGROUND: Patients with serious mental disorders have poorer healthcare outcomes at the end of life and are at greater risk of dying from unnatural causes. Aims: To explore place of death and demographic and clinical correlates of unnatural causes of death in patients with serious mental disorders.
METHOD: Routinely collected patient data were used to explore bivariate and adjusted associations between covariates and natural/unnatural cause of death.
RESULTS: In multivariable analysis (n = 1029), dying at home (odds ratio (OR) = 1.87, 95% CI 1.03-3.40), 'other' locations (OR = 16.50, 95% CI 7.57-36.00), younger age (OR = 17.26, 95% CI 8.28-36.00) and a diagnosis other than schizophrenia spectrum disorder (OR = 1.69, 95% CI 1.04-2.73) were correlates of unnatural cause of death.
CONCLUSIONS: Deaths from unnatural causes were high and more likely to occur at home and non-healthcare settings. Unnatural causes of death were higher in younger patients with non-schizophrenia spectrum disorder diagnoses. Declaration of interest: F.G. has received support or honoraria for CME, advisory work and lectures from Bristol-Myers Squibb, Janssen, Lundbeck, Otsuka, Roche, and Sunovion, and has a family member with professional links to Lilly and GSK, including shares.
Background: frequent emergency department (ED) attendance at the end of life disrupts care continuity and contradicts most patients’ preference for home-based care.
Objective: to examine factors associated with frequent (=3) end of life ED attendances among older people to identify opportunities to improve care.
Methods: pooled data from two mortality follow-back surveys in England. Respondents were family members of people aged =65 who died four to ten months previously. We used multivariable modified Poisson regression to examine illness, service and sociodemographic factors associated with =3 ED attendances, and directed content analysis to explore free-text responses.
Results: 688 respondents (responses from 42.0%); most were sons/daughters (60.5%). Mean age at death was 85 years. 36.5% had a primary diagnosis of cancer and 16.3% respiratory disease. 80/661 (12.1%) attended ED =3 times, accounting for 43% of all end of life attendances. From the multivariable model, respiratory disease (reference cancer) and =2 comorbidities (reference 0) were associated with frequent ED attendance (adjusted prevalence ratio 2.12, 95% CI 1.21–3.71 and 1.81, 1.07–3.06). Those with =7 community nursing contacts (reference 0 contacts) were more likely to frequently attend ED (2.65, 1.49–4.72), whereas those identifying a key health professional were less likely (0.58, 0.37–0.88). Analysis of free-text found inadequate community support, lack of coordinated care and untimely hospital discharge were key issues.
Conclusions: assigning a key health professional to older people at increased risk of frequent end of life ED attendance, e.g. those with respiratory disease and/or multiple comorbidities, may reduce ED attendances by improving care coordination.
Background: Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.
Methods: Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients’ place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients’ socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).
Results: We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose–response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49–0.80; Model 2: APR range 0.79–0.98) and urban areas (Model 1: APR range 0.50–0.83; Model 2: APR range 0.98–0.99) were less likely to die there, compared to those who lived closer (i.e. = 10 min drive time). The effects were larger in rural areas compared to urban areas.
Conclusion: Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.
Long-term neurological conditions (LTNCs) often cause debilitating symptoms. Better understanding of symptom dimensions in LTNCs is needed to support health professionals and improve care. This can be achieved by exploring the factor structure of a standardised measure of symptoms in LTNC patients. The symptom subscale of the Integrated Palliative Outcome Scale for LTNCs (IPOS Neuro-S24) comprises 24 items measuring symptom severity. Descriptive statistics and psychometric properties of the scale were assessed, followed by differential item functioning (DIF), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Data from N = 238 patients were analysed. The mean IPOS Neuro S-24 score was 27.0 (possible range 0–96) and floor effects were found for 21 items. The scale had good internal consistency (Cronbach’s alpha = 0.77). Weak evidence of DIF was found for nine items. All but one item (falls) loaded onto four factors with loadings > 0.3. The factors represented four clinically meaningful symptom dimensions: fatigue, motor symptoms, oral problems and non-motor symptoms. We identified a reliable four-factor structure of symptom experience in LTNC patients. The results suggest that symptom dimensions are common across LTNCs. The IPOS Neuro S-24 is an appropriate tool to measure symptoms in LTNC patients, which may improve care.
Policy Points: We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis.
CONTEXT: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.
METHODS: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.
RESULTS: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.
CONCLUSIONS: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
Previous studies have revealed that there is significant geographical variation in place of death in (PoD) England, with sociodemographic and clinical characteristics explaining = 25% of this variation. Service factors, mostly modifiable, may account for some of the unexplained variation, but their role had never been evaluated systematically. A national population-based observational study in England, using National Death Registration Database (2014) linked to area-level service data from public domains, categorised by commissioning, type and capacity, location and workforce of the services, and the service use. The relationship between the service variables and PoD was evaluated using beta regression at the area level and using generalised linear mixed models at the patient level. The relative contribution of service factors at the area level was assessed using the per cent of variance explained, measured by R2. The total impact of service factors was evaluated by the area under the receiver operating characteristic curve (AUC). The independent effect of service variables was measured at the individual level by odds ratios (ORs)., Among the 431,735 adult deaths, hospitals were the most common PoD (47.3%), followed by care homes (23.1%), homes (22.5%) and hospices (6.1%). One-third (30.3%) of the deaths were due to cancer and two-thirds (69.7%) were due to non-cancer causes. Almost all service categories studied were associated with some of the area-level variation in PoD. Service type and capacity had the strongest link among all service categories, explaining 14.2–73.8% of the variation; service location explained 10.8–34.1% of the variation. The contribution of other service categories to PoD was inconsistent. At the individual level, service variables appeared to be more useful in predicting death in hospice than in hospital or care home, with most AUCs in the fair performance range (0.603–0.691). The independent effect of service variables on PoD was small overall, but consistent. Distance to the nearest care facility was negatively associated with death in that facility. At the Clinical Commissioning Group level, the number of hospices per 10,000 adults was associated with a higher chance of hospice death in non-cancer causes (OR 30.88, 99% confidence interval 3.46 to 275.44), but a lower chance of hospice death in cancer causes. There was evidence for an interaction effect between the service variables and sociodemographic variables on PoD., This study was limited by data availability, particularly those specific to palliative and end-of-life care; therefore, the findings should be interpreted with caution. Data limitations were partly due to the lack of attention and investment in this area., A link was found between service factors and PoD. Hospice capacity was associated with hospice death in non-cancer cases. Distance to the nearest care facility was negatively correlated with the probability of a patient dying there. Effect size of the service factors was overall small, but the interactive effect between service factors and sociodemographic variables suggests that high-quality end-of-life care needs to be built on service-level configuration tailored to individuals’ circumstances., A large data gap was identified and data collection is required nationally on services relevant to palliative and end-of-life care. Future research is needed to verify the identified links between service factors and PoD., The National Institute for Health Research Health Services and Delivery Research programme.
Background: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear.
Aim: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services.
Design: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models.
Participants: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%).
Results: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43–0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35–2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes.
Conclusions: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.
BACKGROUND: Liver disease is a major cause of mortality, with high numbers of hospital deaths, and disproportionately affects people younger than 65 years. This study aims to examine the place of death and factors associated with hospital death for people who died from liver disease.
METHOD: We did a national population-based, observational study using the National Death Registration Database from the Office for National Statistics, 2001-14. All non-accidental adult deaths (hospital and non-hospital) from liver disease in England were included. Explanatory variables were underlying cause of death, contributory causes of death (number and specific causes), age at death, sex, marital status, year of death, index of multiple deprivation, rural or urban settlement, and residential region. We applied modified Poisson regression models to assess the strength of association between hospital death and explanatory variables using an adjusted prevalence ratio (PR).
FINDINGS: 135 953 decedents were included, of whom 56 065 (41·2%) died from alcohol-related liver disease. Annual deaths from liver disease increased from 7811 in 2001, to 11 017 in 2014. Hospitals were the main place of death (66·9% [95% CI 66·6–67·1]) for patients who died from liver disease. The proportion of hospital deaths reduced from 71·5% in 2001 to 60·0% in 2014. After adjusting for sociodemographic factors, patients who died from alcohol-related liver disease had the highest chance of hospital death; people who died from liver cancer were less likely to die in hospital than people with alcohol-related liver disease (adjusted PR 0·61 [95% CI 0·60–0·61]). People with four or more contributory causes of death were more likely to die in hospital than those with no contributory causes (1·45 [1·42–1·47]). Patients with sepsis (1·24 [1·23–1·25]), hepatorenal syndrome (1·22 [1·21–1·22]), and peritonitis (1·18 [1·17–1·20]) had higher chances of hospital death than those without these respective contributory causes, and those with alcohol-related disorders (0·67 [0·66–0·69]) had lower chances of hospital death.
INTERPRETATION: The high risk of hospital death in patients with sepsis, hepatorenal syndrome, or peritonitis warrants further investigation, and the low chance of hospital death in patients with alcohol-related disorders also needs to be explored. Prevention strategies and end-of-life care services are urgently needed to prevent and tackle harms from liver disease.
FUNDING: National Institute of Health Research Health Services and Delivery Research Programme, and Collaboration for Leadership in Applied Health Research and Care South London.
BACKGROUND: End-stage liver disease is a common cause of morbidity and mortality worldwide, yet little is known about its symptomatology and impact on health-related quality of life.
AIM: To describe symptom prevalence and health-related quality of life of patients with end-stage liver disease to improve care.
DESIGN: Systematic review.
DATA SOURCES: We searched eight electronic databases from January 1980 to June 2018 for studies investigating symptom prevalence or health-related quality of life of adult patients with end-stage liver disease. No language restrictions were applied. Meta-analyses were performed where appropriate.
RESULTS: We included 80 studies: 35 assessing symptom prevalence, 41 assessing health-related quality of life, and 4 both. The instruments assessing symptoms varied across studies. The most frequently reported symptoms were as follows: pain (prevalence range 30%–79%), breathlessness (20%–88%), muscle cramps (56%–68%), sleep disturbance (insomnia 26%–77%, daytime sleepiness 29.5%–71%), and psychological symptoms (depression 4.5%–64%, anxiety 14%–45%). Erectile dysfunction was prevalent (53%–93%) in men. The health-related quality of life of patients with end-stage liver disease was significantly impaired when compared to healthy controls or patients with chronic liver disease. Compared with compensated cirrhosis, decompensation led to significant worsening of both components of the 36-Item Short Form Survey although to a larger degree for the Physical Component Summary score (decrease from average 6.4 (95% confidence interval: 4.0–8.8); p < 0.001) than for the Mental Component Summary score (4.5 (95% confidence interval: 2.4–6.6); p < 0.001).
CONCLUSION: The symptom prevalence of patients with end-stage liver disease resembled that of patients with other advanced conditions. Given the diversity of symptoms and significantly impaired health-related quality of life, multidisciplinary approach and timely intervention are crucial.
BACKGROUND: Emergency department visits towards the end of life by patients with cancer are increasing over time. This is despite evidence of an association with poor patient and caregiver outcomes and most patients preferring home-based care.
AIM: To identify socio-demographic and clinical factors associated with end-of-life emergency department visits and determine the relationship between patients' prior emergency department use and risk of multiple ( 2) visits in the last month of life.
DESIGN: Population-based cohort study.
SETTING/PARTICIPANTS: All adults who died from cancer, in England, between 1 April 2011 and 31 March 2012. Our primary outcome was the adjusted odds ratio for multiple emergency department visits in the last month of life, derived using multivariable logistic regression.
RESULTS: Among 124,030 cancer decedents (52.9% men; mean age: 74.1 years), 30.7% visited the emergency department once in their last month of life and 5.1% visited multiple times. Patients were more likely to visit multiple times if they were men, younger, Asian or Black, of lower socio-economic status, had greater comorbidity, and lung or head and neck cancer. Patients with >=4 emergency department visits in the 11 months prior to their last month of life were also more likely to make multiple visits during their last 30 days; this followed a dose-response pattern ( p for trend <0.001).
Patients with greater comorbidity, lung or head and neck cancer and a higher number of previous emergency department visits are more likely to visit the emergency department multiple times in the last month of life. Previously reported socio-demographic factors (men, younger age, Black, low socio-economic status) are also confirmed for the first time in a UK population.
BACKGROUND: There is a significant geographical disparity in place of death. Socio-demographic and disease-related variables only explain less than a quarter of the variation. Healthcare service factors may account for some (or much) of the remaining variation but their effects have never been systematically evaluated, partly due to the lack of a conceptual framework. This study aims to propose a population-based framework to guide the evaluation of the role of the healthcare service factors in place of death.
METHODS: Review and synthesis of health service models that include the impact of a service component on either place of death/end of life care outcomes or service access/utilization.
RESULTS: The framework conceptualizes the impact of healthcare services on the place of death as starting from the end of life care policies that in turn influence service commissioning and shape healthcare service characteristics, including service type, service capacity-facilities, service location, and workforce, through which service utilization and ultimately place of death are affected. Patient socio-demographics, disease-related variables, family and community support and social care also influence place of death, but they are not the focus of this framework and therefore are grouped as needs and other environmental factors. Information on service utilization, together with the place of death, creates loop feedback to inform policy and service commission.
CONCLUSIONS: The framework provides guidance for analysis aiming to understand the role of healthcare services in place of death. It aids the interpretation of results in the light of existing knowledge and potentially identifies service factors that can be addressed to improve end of life care.
OBJECTIVES: Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service.
METHODS: Neurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms.
RESULTS: 33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being "good/excellent" by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being "poor/none". Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness.
CONCLUSIONS: Our results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this.
BACKGROUND: Implementation fidelity is critical in evaluating effectiveness of interventions.
AIM: Identifying and summarising strategies to improve and assess the level of reporting of implementation fidelity in randomised controlled trials of palliative care complex interventions.
DESIGN: Systematic review.
DATA SOURCES: Published and completed randomised controlled trials from 2000 to current evaluating effectiveness of specialised palliative care services on patient-centred outcomes in adult patients were examined. MEDLINE was searched from 2008 to 29 September 2015 and supplemented by randomised controlled trials identified in a 2008 systematic review.
RESULTS: Altogether, 20 randomised controlled trials involving 8426 patients were reviewed using 40 subcomponents of five elements of implementation fidelity (resulting in 20 × 40 = 800 items). Over 88 strategies were identified, classified under the following elements: "treatment design", "training providers", "delivery of treatment", "receipt of treatment" and "enactment of treatment skills". No single overarching strategy was discovered. Strategies under ‘treatment design’ aimed to ensure equivalent treatment dose between and within intervention and control groups, and delivery of necessary ingredients. Ongoing "training (of) providers" included supervision and ensuring skill acquisition. Use of treatment manuals and implementation checklists aimed to aid "delivery of treatment". Research teams aimed to improve ‘receipt of treatment’ by transmitting clear information and verifying understanding, while improving ‘enactment of treatment skills’ by reviewing and reinforcing prior content. Only 26% of the items received sufficient reporting; 34% were either not used or reported on.
CONCLUSION: Implementation fidelity in palliative care is under-recognised. A table to collate these strategies to improve implementation fidelity in palliative care research and clinical practice is proposed.