Association of primary and community care services with emergency visits and hospital admissions at the end of life in people with cancer: a retrospective cohort study.

OBJECTIVE: To examine the association between primary and community care use and measures of acute hospital use in people with cancer at the end of life. DESIGN: Retrospective cohort study. SETTING: We used Discover, a linked administrative and clinical data set from general practices, community and hospital records in North West London (UK). PARTICIPANTS: People registered in general practices, with a diagnosis of cancer who died between 2016 and 2019. PRIMARY AND SECONDARY OUTCOME MEASURES: ≥3 hospital admissions during the last 90 days, ≥1 admissions in the last 30 days and ≥1 emergency department (ED) visit in the last 2 weeks of life. RESULTS: Of 3581 people, 490 (13.7%) had ≥3 admissions in last 90 days, 1640 (45.8%) had ≥1 admission in the last 30 days, 1042 (28.6%) had ≥1 ED visits in the last 2 weeks; 1069 (29.9%) had more than one of these indicators. Contacts with community nurses in the last 3 months (≥13 vs <4) were associated with fewer admissions in the last 30 days (risk ratio (RR) 0.88, 95% CI 0.90 to 0.98) and ED visits in the last 2 weeks of life (RR 0.79, 95% CI 0.68 to 0.92). Contacts with general practitioners in the last 3 months (≥11 vs <4) was associated with higher risk of ≥3 admissions in the last 90 days (RR 1.63, 95% CI 1.33 to 1.99) and ED visits in the last 2 weeks of life (RR 1.27, 95% CI 1.10 to 1.47). CONCLUSIONS: Expanding community nursing could reduce acute hospital use at the end of life and improve quality of care.

Lung cancer deaths (England 2001-2017)-comorbidities: a national population-based analysis.

BACKGROUND: The presence of comorbidities in people with lung cancer is common. Despite this, large-scale contemporary reports describing patterns and trends in comorbidities are limited. DESIGN AND METHODS: Population-based patterns and trends analysis using Office for National Statistics Mortality Data. Our cohort included all adults who died from lung cancer (ICD-10 codes C33-C34) in England between 2001 and 2017. We describe decedents with 0, 1 or ≥2 comorbidities and explore changes overtime for the six most common comorbidities identified: chronic respiratory disease; diabetes; cardiovascular disease; dementia; cerebrovascular disease and chronic kidney disease. To determine future trends, the mean annual percentage change between 2001 and 2017 was calculated and projected forwards, while accounting for anticipated increases in lung cancer mortality. RESULTS: There were 472 259 deaths from lung cancer (56.9% men; mean age 72.9 years, SD: 10.7). Overall, 19.0% of lung cancer decedents had 1 comorbidity at time of death and 8.8% had ≥2. The proportion of patients with comorbidities increased over time-between 2001 and 2017 decedents with 1 comorbidity increased 54.7%, while those with ≥2 increased 294.7%. The most common comorbidities were chronic respiratory disease and cardiovascular disease, contributing to 18.5% (95% CI: 18.0 to 18.9) and 11.4% (11.0 to 11.7) of deaths in 2017. Dementia and chronic kidney disease had the greatest increase in prevalence, increasing 311% and 289% respectively. CONCLUSION: To deliver high-quality outcomes for the growing proportion of lung cancer patients with comorbidities, oncology teams need to work across traditional boundaries of care. Novel areas for development include integration with dementia and chronic kidney disease services.

Palliative Care and the Management of Common Distressing Symptoms in Advanced Cancer: Pain, Breathlessness, Nausea and Vomiting, and Fatigue.

Good symptom management in oncology is associated with improved patient and family quality of life, greater treatment compliance, and may even offer survival advantages. With population growth and aging, the proportion of patients with multiple symptoms-both related and unrelated to their cancer-is anticipated to increase, supporting calls for a more routine and integrated approach to symptom management. This article presents a summary of the literature for the use of symptom assessment tools and reviews the management of four common and distressing symptoms commonly experienced by people with advanced cancer: pain, breathlessness, nausea and vomiting, and fatigue. We also discuss the role of palliative care in supporting a holistic approach to symptom management throughout the cancer trajectory.

Patterns of emergency department attendance among older people in the last three months of life and factors associated with frequent attendance: a mortality follow-back survey.

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.

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.

What factors influence emergency department visits by patients with cancer at the end of life? Analysis of a 124,030 patient cohort.

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). CONCLUSION: 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.

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.

'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.

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.

Emergency department attendance by patients with cancer in their last month of life: a systematic review and meta-analysis.

PURPOSE: To explore factors associated with emergency department (ED) attendance by patients with cancer in their last month of life. METHODS: Five electronic databases (MEDLINE, EMBASE, CINAHL, PsycINFO, and the Cochrane Library) were searched through February 2014 for studies investigating ED attendance toward the end of life by adult patients (age 18 years or older) with cancer. No time or language limitations were applied. We performed meta-analysis of factors using a random-effects model, with results expressed as odds ratios (OR) for ED attendance. Sensitivity analyses explored heterogeneity. RESULTS: Thirty studies were identified, reporting three demographic, five clinical, and 13 environmental factors, combining data from five countries and 1,181,842 patients. An increased likelihood of ED attendance was found for men (OR, 1.24; 95% CI, 1.19 to 1.29; I(2), 58.2%), black race (OR, 1.45; 95% CI, 1.40 to 1.50; I(2), 0.0%; reference, white race), patients with lung cancer (OR, 1.17; 95% CI, 1.10 to 1.23; I(2), 59.5%; reference, other cancers), and those patients of the lowest socioeconomic status (SES; OR, 1.15; 95% CI, 1.10 to 1.19; I(2), 0.0%; reference, highest SES). Patients receiving palliative care were less likely to attend the ED in their last month of life (OR, 0.43; 95% CI, 0.36 to 0.51; I(2), 59.4%). CONCLUSION: We identified demographic (men; black race), clinical (lung cancer), and environmental (low SES; no palliative care) factors associated with an increased risk of ED attendance by patients with cancer in their last month of life. Our findings may be used to develop screening interventions and assist policy-makers to direct resources. Future studies should also investigate previously neglected areas of research, including psychosocial factors, and patients' and caregivers' emergency care preferences.