A population-based retrospective cohort study of end-of-life emergency department visits by people with dementia: multilevel modelling of individual- and service-level factors using linked data.

BACKGROUND: emergency department (ED) visits have inherent risks for people with dementia yet increase towards the end-of-life. Although some individual-level determinants of ED visits have been identified, little is known about service-level determinants. OBJECTIVE: to examine individual- and service-level factors associated with ED visits by people with dementia in the last year of life. METHODS: retrospective cohort study using hospital administrative and mortality data at the individual-level, linked to health and social care service data at the area-level across England. The primary outcome was number of ED visits in the last year of life. Subjects were decedents with dementia recorded on the death certificate, with at least one hospital contact in the last 3 years of life. RESULTS: of 74,486 decedents (60.5% women; mean age 87.1 years (standard deviation: 7.1)), 82.6% had at least one ED visit in their last year of life. Factors associated with more ED visits included: South Asian ethnicity (incidence rate ratio (IRR) 1.07, 95% confidence interval (CI) 1.02-1.13), chronic respiratory disease as the underlying cause of death (IRR 1.17, 95% CI 1.14-1.20) and urban residence (IRR 1.06, 95% CI 1.04-1.08). Higher socioeconomic position (IRR 0.92, 95% CI 0.90-0.94) and areas with higher numbers of nursing home beds (IRR 0.85, 95% CI 0.78-0.93)-but not residential home beds-were associated with fewer ED visits at the end-of-life. CONCLUSIONS: the value of nursing home care in supporting people dying with dementia to stay in their preferred place of care must be recognised, and investment in nursing home bed capacity prioritised.

Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations.

BACKGROUND: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. AIM: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. DESIGN: Retrospective cohort study using population-based individual-level mortality data. SETTING/PARTICIPANTS: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent's area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. RESULTS: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. CONCLUSIONS: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.

Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review.

BACKGROUND: Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region. AIM: To synthesize and appraise the evidence about patients with advanced illness and their caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America. DESIGN: Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool. DATA SOURCES: MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included. RESULTS: Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver's role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients' preference to be informed about their condition contrasting with caregivers' reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general. CONCLUSION: Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.

Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data.

BACKGROUND: Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions. AIM: To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days. DESIGN: Retrospective cohort study using Discover, an administrative and clinical dataset from 365 primary care practices in London with deterministic individual-level data linkage to community and hospital records. SETTING/PARTICIPANTS: People diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019. The primary outcome was multiple non-elective hospital admissions in the last 90 days of life. Secondary outcomes included contacts with primary and community care providers. We examined the association between identification of palliative care needs with outcomes. RESULTS: Among 5804 decedents with dementia, 1953 (33.6%) were identified as having palliative care needs, including 1141 (19.7%) identified before the last 90 days of life. Identification of palliative care needs before the last 90 days was associated with a lower risk of multiple hospital admissions (Relative Risk 0.70, 95% CI 0.58-0.85) and more contacts with the primary care practice, community nurses and palliative care teams in the last 90 days. CONCLUSIONS: Further investigation of the mechanisms underlying the association between identification of palliative care needs and reduced hospital admissions could help reduce reliance on acute care for this population.

Changing patterns of mortality during the COVID-19 pandemic: Population-based modelling to understand palliative care implications.

BACKGROUND: COVID-19 has directly and indirectly caused high mortality worldwide. AIM: To explore patterns of mortality during the COVID-19 pandemic and implications for palliative care, service planning and research. DESIGN: Descriptive analysis and population-based modelling of routine data. PARTICIPANTS AND SETTING: All deaths registered in England and Wales between 7 March and 15 May 2020. We described the following mortality categories by age, gender and place of death: (1) baseline deaths (deaths that would typically occur in a given period); (2) COVID-19 deaths and (3) additional deaths not directly attributed to COVID-19. We estimated the proportion of people who died from COVID-19 who might have been in their last year of life in the absence of the pandemic using simple modelling with explicit assumptions. RESULTS: During the first 10 weeks of the pandemic, there were 101,614 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220%, while home and hospital deaths increased by 77% and 90%, respectively. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged ⩾ 75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 22% (13%-31%) of COVID-19 deaths occurred among people who might have been in their last year of life in the absence of the pandemic. CONCLUSION: The COVID-19 pandemic has led to a surge in palliative care needs. Health and social care systems must ensure availability of palliative care to support people with severe COVID-19, particularly in care homes.

Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta-analysis.

BACKGROUND: Low socioeconomic position (SEP) is recognized as a risk factor for worse health outcomes. How socioeconomic factors influence end-of-life care, and the magnitude of their effect, is not understood. This review aimed to synthesise and quantify the associations between measures of SEP and use of healthcare in the last year of life. METHODS AND FINDINGS: MEDLINE, EMBASE, PsycINFO, CINAHL, and ASSIA databases were searched without language restrictions from inception to 1 February 2019. We included empirical observational studies from high-income countries reporting an association between SEP (e.g., income, education, occupation, private medical insurance status, housing tenure, housing quality, or area-based deprivation) and place of death, plus use of acute care, specialist and nonspecialist end-of-life care, advance care planning, and quality of care in the last year of life. Methodological quality was evaluated using the Newcastle-Ottawa Quality Assessment Scale (NOS). The overall strength and direction of associations was summarised, and where sufficient comparable data were available, adjusted odds ratios (ORs) were pooled and dose-response meta-regression performed. A total of 209 studies were included (mean NOS quality score of 4.8); 112 high- to medium-quality observational studies were used in the meta-synthesis and meta-analysis (53.5% from North America, 31.0% from Europe, 8.5% from Australia, and 7.0% from Asia). Compared to people living in the least deprived neighbourhoods, people living in the most deprived neighbourhoods were more likely to die in hospital versus home (OR 1.30, 95% CI 1.23-1.38, p < 0.001), to receive acute hospital-based care in the last 3 months of life (OR 1.16, 95% CI 1.08-1.25, p < 0.001), and to not receive specialist palliative care (OR 1.13, 95% CI 1.07-1.19, p < 0.001). For every quintile increase in area deprivation, hospital versus home death was more likely (OR 1.07, 95% CI 1.05-1.08, p < 0.001), and not receiving specialist palliative care was more likely (OR 1.03, 95% CI 1.02-1.05, p < 0.001). Compared to the most educated (qualifications or years of education completed), the least educated people were more likely to not receive specialist palliative care (OR 1.26, 95% CI 1.07-1.49, p = 0.005). The observational nature of the studies included and the focus on high-income countries limit the conclusions of this review. CONCLUSIONS: In high-income countries, low SEP is a risk factor for hospital death as well as other indicators of potentially poor-quality end-of-life care, with evidence of a dose response indicating that inequality persists across the social stratum. These findings should stimulate widespread efforts to reduce socioeconomic inequality towards the end of life.

Correction: Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta-analysis.

[This corrects the article DOI: 10.1371/journal.pmed.1002782.].

Understanding which people with dementia are at risk of inappropriate care and avoidable transitions to hospital near the end-of-life: a retrospective cohort study.

BACKGROUND: transitions between care settings near the end-of-life for people with dementia can be distressing, lead to physical and cognitive deterioration, and may be avoidable. OBJECTIVE: to investigate determinants of end-of-life hospital transitions, and association with healthcare use, among people with dementia. DESIGN: retrospective cohort study. SETTING: electronic records from a mental health provider in London, linked to national mortality and hospital data. SUBJECTS: people with dementia who died in 2007-2016. METHODS: end-of-life hospital transitions were defined as: multiple admissions in the last 90 days (early), or any admission in the last three days of life (late). Determinants were assessed using logistic regression. RESULTS: of 8,880 people, 1,421 (16.0%) had at least one end-of-life transition: 505 (5.7%) had early, 788 (8.9%) late, and 128 (1.5%) both types. Early transitions were associated with male gender (OR 1.33, 95% CI 1.11-1.59), age (>90 vs <75 years OR 0.69, 95% CI 0.49-0.97), physical illness (OR 1.52, 95% CI 1.20-1.94), depressed mood (OR 1.49, 95% CI 1.17-1.90), and deprivation (most vs least affluent quintile OR 0.58, 95% CI 0.37-0.90). Care home residence was associated with fewer early (OR 0.63, 95% CI 0.53 to 0.76) and late (OR 0.80, 95% CI 0.65 to 0.97) transitions. Early transitions were associated with more hospital admissions throughout the last year of life compared to those with late and no transitions (mean 4.56, 1.89, 1.60; P < 0.001). CONCLUSIONS: in contrast to late transitions, early transitions are associated with higher healthcare use and characteristics that are predictable, indicating potential for prevention.

Is end-of-life care a priority for policymakers? Qualitative documentary analysis of health care strategies.

BACKGROUND: Prioritisation of end-of-life care by policymakers has been the subject of extensive rhetoric, but little scrutiny. In England, responsibility for improving health and care lies with 152 regional Health and Wellbeing Boards. AIM: To understand the extent to which Health and Wellbeing Boards have identified and prioritised end-of-life care needs and their plans for improvement. DESIGN: Qualitative documentary analysis of Health and Wellbeing Strategies. Summative content analysis to quantify key concepts and identify themes. DATA SOURCES: Strategies were identified from Local Authority web pages and systematically searched to identify relevant content. RESULTS: In total, 150 strategies were identified. End-of-life care was mentioned in 78 (52.0%) and prioritised in 6 (4.0%). Four themes emerged: (1) clinical context - in 43/78 strategies end-of-life care was mentioned within a specific clinical context, most often ageing and dementia; (2) aims and aspirations - 31 strategies identified local needs and/or quantifiable aims, most related to the place of death; (3) narrative thread - the connection between need, aim and planned intervention was disjointed, just six strategies included all three components; and (4) focus of evidence - where cited, evidence related to evidence of need, not evidence for effective interventions. CONCLUSION: Half of Health and Wellbeing Strategies mention end-of-life care, few prioritise it and none cite evidence for effective interventions. The absence of connection between need, aim and intervention is concerning. Future research should explore whether and how strategies have impacted on local populations.

HPV vaginal self-sampling among women non-adherent to Papanicolaou screening in Chile.

OBJECTIVE: To evaluate acceptance, preference and compliance with referral of vaginal self-sampling for the detection of Human papillomavirus (HPV) among women non-adherent to Papanicolaou (Pap) screening in Santiago, Chile. MATERIALS AND METHODS: Using multistage sampling we identified women aged 30-64 years who reported not receiving a Pap test in the previous three years and offered them Pap testing at the health center or vaginal self-sampling for HPV testing at home. Self-collected samples were analyzed with hybrid capture. All HPV+ women were referred for colposcopy, biopsy and treatment when needed. RESULTS: 1 254 eligible women were contacted; 86.5% performed self-sampling and 8.1% refused; 124 women were HPV+ (11.4%: 95%CI 9.6-13.5) of whom 85.5% attended colposcopy; 12 had CIN2+ (1.1%: 95 %CI 0.5-1.7). CONCLUSION: HPV vaginal self-sampling can be easily implemented in Chile and could improve coverage, successfully reaching women who drop out of the screening program.

[Clinical practice guidelines in the Chilean health sector reform: a critical assessment of their quality]. / Guías de Práctica Clínica en el Régimen de Garantías en Salud: una evaluación crítica de su calidad.

BACKGROUND: Clinical practice guidelines are widely used as tools for improving quality of health care. However, there is increasing concern about limitations in their development process conducting to inconsistent recommendations. During the last decade the use of guidelines has been promoted in the Chilean health system, but their quality has not yet been evaluated systematically. AIM: To assess the quality of clinical practice guidelines developed by the Chilean guidelines program. MATERIAL AND METHODS: All the guidelines developed by the Chilean program between 2005 and 2009 were retrieved from the Ministry of Health website. Each guideline was assessed independently by three appraisers using the Appraisal of Guidelines, Research and Evaluation (AGREE) instrument. Standardized scores were obtained for each dimension in each guideline and across the whole set of guidelines. RESULTS: Sixty guidelines were assessed. The 'scope and purpose' dimension scored significantly higher (mean 82.2%, range: 25.9%-100%) and the 'applicability' dimension scored significantly lower (mean 23.3%, range: 0%-72.4%) than any other dimension. 'Publication date' was the only variable consistently associated with dimension scores. CONCLUSIONS: The quality of Chilean clinical practice guidelines is far from ideal. Although they seem to have a strong sense of purpose and vision, methodological procedures should be strengthened, especially those related to applicability.

Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life: A Secondary Data Analysis.

OBJECTIVES: To explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs. DESIGN: Cross-sectional study using pooled data from 3 mortality follow-back surveys. SETTING AND PARTICIPANTS: People who died with dementia. METHODS: The Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs. RESULTS: A total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs. CONCLUSIONS AND IMPLICATIONS: Total care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs.

Primary care contacts, continuity, identification of palliative care needs, and hospital use: a population-based cohort study in people dying with dementia.

BACKGROUND: Reducing hospital admissions among people dying with dementia is a policy priority. AIM: To explore associations between primary care contacts, continuity of primary care, identification of palliative care needs, and unplanned hospital admissions among people dying with dementia. DESIGN AND SETTING: This was a retrospective cohort study using the Clinical Practice Research Datalink linked with hospital records and Office for National Statistics data. Adults (>18 years) who died between 2009 and 2018 with a diagnosis of dementia were included in the study. METHOD: The association between GP contacts, Herfindahl-Hirschman Index continuity of care score, palliative care needs identification before the last 90 days of life, and multiple unplanned hospital admissions in the last 90 days was evaluated using random-effects Poisson regression. RESULTS: In total, 33 714 decedents with dementia were identified: 64.1% (n = 21 623) female, mean age 86.6 years (SD 8.1), mean comorbidities 2.2 (SD 1.6). Of these, 1894 (5.6%) had multiple hospital admissions in the last 90 days of life (increase from 4.9%, 95% confidence interval [CI] = 4.2 to 5.6 in 2009 to 7.1%, 95% CI = 5.7 to 8.4 in 2018). Participants with more GP contacts had higher risk of multiple hospital admissions (incidence risk ratio [IRR] 1.08, 95% CI = 1.05 to 1.11). Higher continuity of care scores (IRR 0.79, 95% CI = 0.68 to 0.92) and identification of palliative care needs (IRR 0.66, 95% CI = 0.56 to 0.78) were associated with lower frequency of these admissions. CONCLUSION: Multiple hospital admissions among people dying with dementia are increasing. Higher continuity of care and identification of palliative care needs are associated with a lower risk of multiple hospital admissions in this population, and might help prevent these admissions at the end of life.

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.

Exploring costs, cost components, and associated factors among people with dementia approaching the end of life: A systematic review.

INTRODUCTION: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs. METHODS: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full-text articles. We used the Evers' Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies. RESULTS: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs. DISCUSSION: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed.

Factors Associated With Emergency Department Visits by People With Dementia Near the End of Life: A Systematic Review.

OBJECTIVES: Emergency department (ED) attendance is common among people with dementia and increases toward the end of life. The aim was to systematically review factors associated with ED attendance among people with dementia approaching the end of life. DESIGN: Systematic search of 6 databases (MEDLINE, EMBASE, ASSIA, CINAHL, PsycINFO, and Web of Science) and gray literature. Quantitative studies of any design were eligible. Newcastle-Ottawa Scales and Cochrane risk-of-bias tools assessed study quality. Extracted data were reported narratively, using a theoretical model. Factors were synthesized based on strength of evidence using vote counting (PROSPERO registration: CRD42020193271). SETTING AND PARTICIPANTS: Adults with dementia of any subtype and severity, in the last year of life, or in receipt of services indicative of nearness to end of life. MEASUREMENTS: The primary outcome was ED attendance, defined as attending a medical facility that provides 24-hour access to emergency care, with full resuscitation resources. RESULTS: After de-duplication, 18,204 titles and abstracts were screened, 367 were selected for full-text review and 23 studies were included. There was high-strength evidence that ethnic minority groups, increasing number of comorbidities, neuropsychiatric symptoms, previous hospital transfers, and rural living were positively associated with ED attendance, whereas higher socioeconomic position, being unmarried, and living in a care home were negatively associated with ED attendance. There was moderate-strength evidence that being a woman and receiving palliative care were negatively associated with ED attendance. There was only low-strength evidence for factors associated with repeat ED attendance. CONCLUSIONS AND IMPLICATIONS: The review highlights characteristics that could help identify patients at risk of ED attendance near the end of life and potential service-related factors to reduce risks. Better understanding of the mechanisms by which residential facilities and palliative care are associated with reduced ED attendance is needed.

Quality indicators for dementia and older people nearing the end of life: A systematic review.

BACKGROUND: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings. METHODS: A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed; QIs were categorized as robust, moderate, or poor. RESULTS: From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies. CONCLUSIONS: Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision.

Electronic palliative care coordination systems (EPaCCS): a systematic review.

OBJECTIVES: To systematically search, evaluate and report the state of the science of electronic palliative care coordination systems (EPaCCS). METHODS: We searched CINAHL, MEDLINE, Embase, the Cochrane Library and grey literature for articles evaluating or discussing electronic systems to facilitate sharing of information about advance care plans. Two independent review authors screened full-text articles for inclusion, assessed quality and extracted data. RESULTS: In total, 30 articles and reports were included. Of the 26 articles, 14 were 'expert opinion' articles (editorials, discussion papers or commentaries), 9 were observational studies (cross-sectional, retrospective cohort studies or service evaluations), 2 were qualitative studies and 1 a mixed-methods study. No study had an experimental design. Quantitative studies described the proportion of people with EPaCCS dying in their preferred place, and associations between EPaCCS use and hospital utilisation. Qualitative, mixed-methods studies and reports described the burden of inputting data and difficulties with IT systems as main challenges of implementing EPaCCS. CONCLUSIONS: Much of the current scientific literature on EPaCCS comprises expert opinion, and there is an absence of experimental studies evaluating the impact of EPaCCS on end-of-life outcomes. Given the current drive for national roll-out of EPaCCS by 2020, it is essential that rigorous evaluation of EPaCCS is prioritised.

Continuity of care and delivery of diabetes and hypertensive care among regular users of primary care services in Chile: a cross-sectional study.

OBJECTIVES: Explore factors related to continuity of care and its association with diabetes and hypertensive care, and disease control. DESIGN: Cross-sectional study. SETTING: Data from the Chilean Health National Survey 2009-2010. PARTICIPANTS: Regular users of primary care services aged 15 or older. PRIMARY AND SECONDARY OUTCOME MEASURES: Proportion of hypertensive and diabetic patients with a blood pressure <140/90 mm Hg and HbA1c<7.0% respectively, self-report of diagnosis, treatment and recent foot and ophthalmological exams. Associations between continuity of care, sociodemographic characteristics, and primary and secondary outcomes were explored using logistic regression. RESULTS: 3887 primary care service users were included. 14.7% recognised a usual GP, 82.3% of them knew their name. Continuity of care was positively associated with age >65 years (OR 4.81, 95% CI 3.16 to 7.32), being female (OR 1.66, 95% CI 1.34 to 2.05), retired (OR 2.22, 95% CI 1.75 to 2.83), obese (OR 1.66, 95% CI 1.29 to 2.14), high cardiovascular risk (OR 2.98, 95% CI 2.13 to 4.17) and widowed (OR 1.50, 95% CI 1.13 to 1.99), and negatively associated with educational level (8-12 vs <8 years OR 0.79, 95% CI 0.64 to 0.97), smoking (OR 0.65, 95% CI 0.52 to 0.82) and physical activity (OR 0.76, 95% CI 0.61 to 0.95). Continuity of care was associated with diagnosis awareness (OR 2.83, 95% CI 1.21 to 6.63), pharmacological treatment (OR 2.04, 95% CI 1.15 to 3.63) and a recent foot (OR 3.17, 95% CI 1.84 to 5.45) and ophthalmological exam (OR 3.20, 95% CI 1.66 to 6.18) in diabetic but not in hypertensive patients. CONCLUSIONS: Continuity of care was associated with higher odds of having a recent foot and ophthalmological exam in patients with diabetes, but not with better diseases control. Findings suggest patients with chronic conditions have better continuity of care access.