La recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L'Énoncé de politique des trois Conseils sur l'éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l'importance majeure de l'engagement et de la gouvernance autochtones. En vue d'assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d'un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d'élaboration de ce partenariat de recherche et expliquons comment l'intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l'adaptation de méthodes de RPC, illustre un processus d'engagement qui pourrait guider d'autres chercheurs désirant mener des recherches en santé autochtone à l'aide de données déjà recueillies. Nous faisons aussi état d'une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s'assurer que les perspectives autochtones soient au cœur des processus de recherche et qu'elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.
PURPOSE: Clinical data warehouses (cDWHs) and cancer registry databases have enabled researchers to conduct clinical analytics with structured electronic health record data. However, these secondary electronic health record sources are often limited in scope because they do not capture the clinical information needed to understand complex clinical questions. Thus, we evaluated the effect of additional curation of data.
MATERIALS AND METHODS: Clinical data sets of 149 patients with prostate cancer with biochemical recurrence after radical prostatectomy treated with salvage or palliative radiotherapy between 2008 and 2017 from our institutional cDWH and Gießener Tumor Documentation System (GTDS) were linked (data warehouse [DWH] population) for analyzing treatment outcomes. The linked data sets were manually curated (manual postprocessing [MPP], eg, incorporate data from established urologists). The primary outcomes were the impact on data quality of treatment outcomes and the time spent on data curation.
RESULTS: We obtained significantly more information on disease progression and patient survival (nonsignificant) when using curated data; the biochemical progression-free survival rate at 5 years for the DWH and DWH plus MPP populations was 63% v 30% (P = .001) and the overall survival rate was 84% v 81% (P = .479), respectively. The median deviation of completeness and the median concordance of clinical data values were 21.47% (range, 55.38%-100%) and 95.00% (range, 63.40%-100%), respectively. We spent 121 hours, 42 minutes on data curation, with most time required for laboratory values, accounting, for a total of 45 hours, 20 minutes (37.26%).
CONCLUSION: Our analysis indicates that time-to-event outcomes for patients with prostate cancer cannot be extracted using secondary data sources (cDWH plus GTDS) only. Outcomes data differed between the electronic data (DWH) and the second manual extraction (DWH plus MPP) because of a lack of follow-up data. When using such unique database resources, only baseline characteristics can reliably be extracted.
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.
OBJECTIVES: In the Netherlands, the use of continuous deep sedation at the end of life has sharply increased from 8.2% of all deaths in 2005 to 12.3% in 2010 to 18.3 % in 2015. We describe its clinical characteristics in 2015 and compare it with 2010 and 2005.
DESIGN: Questionnaire study in random samples of death reported to a central death registry.
SETTING AND PARTICIPANTS: A nationwide study in the Netherlands among physicians attending reported deaths.
METHODS: Continuous deep sedation characteristics (patient characteristics, drugs, duration, estimated shortening of life, and palliative consultation) from the Netherlands in 2015 were compared with continuous deep sedation characteristics of 2010 and 2005.
RESULTS: The response rate was 78% (n = 7277) in 2015, 74% (n = 6263) in 2010, and 78% (n = 6860) in 2005. The increased frequency of continuous deep sedation was notable in all patient subgroups, but mainly occurred among deaths attended by general practitioners, particularly in patients older than 80 years and patients with cancer. In 2015, continuous deep sedation was performed in 93% of the patients through administration of benzodiazepines. In 3% of the patients, the sedation lasted more than 1 week. Furthermore, 60% of the physicians reported that they had no intention to hasten death, 38% reported that they have taken hastening of death into account, and 2% reported their intention was to hasten death. For 1 in 5 patients, a palliative care expert was consulted prior to the start of sedation. These characteristics were comparable between 2015 and 2010.
CONCLUSIONS AND IMPLICATIONS: The increase in continuous deep sedation mainly occurred in deaths attended by general practitioners, especially in older patients and patients with cancer. As there are no major shifts in demographic and epidemiologic patterns of dying, future studies should investigate possible explanations for the increase predominantly in societal developments, such as increased attention to sedation in education and society, a broader interpretation of the concept of refractoriness, and an increased need of patients and physicians to control the dying process.
The present doctoral thesis focuses on evaluating the use, trends in use, factors that influence use, and the impact of using policy measures to support patients and informal caregivers to provide palliative care in the home or community setting in Belgium. Using full-population administrative databases containing information on all decedents in Belgium between 2010 and 2015, we provided insights into these patterns that allow formulating points of improvement, identification of focal groups for policy, but also allow evaluating the societal impact of the measures in tems of quality and costs of care.
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Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth.
Objective: To review the development and key features of the National Palliative Care Registry™ ("the Registry") and describe recent findings from its surveys on hospital palliative care.
Description: Established in 2008, the Registry data elements align with National Consensus Project (NCP) guidelines related to palliative care program structures and operations. The Registry provides longitudinal and comparative data that palliative care programs can use to support programmatic growth.
Results: As of 2018, >1000 hospitals and 120 community sites have submitted data on their palliative care programs to the Registry. Over the past decade, the percentage of hospital admissions seen by palliative care teams (penetration) has increased from 2.5% to 5.3%. Higher penetration is correlated with teaching hospital status, having a palliative care trigger, and hospital size (p < 0.05). Although overall staffing has expanded, only 42% of Registry programs include the recommended four key disciplines: physician, advanced practice or other registered nurse, social worker, and chaplain. Compliance with NCP guidelines on key structures and processes vary across adult and pediatric programs.
Conclusions: The Registry allows palliative care programs to optimize core structures and processes and understand their performance relative to their peers.
Planners, actuaries, and others involved in forecasting capacity and costs must manipulate historical data. Data from calendar/financial year totals have been assumed to be adequate and reliable. This relies on the assumption that year-to-year differences do not arise from patterns concealed in the data. While the seasonal cycle is widely recognized, longer term patterns such as disease outbreaks will act to modify annual demand and costs. Monthly data relating to deaths in local government areas in England and Wales are used to demonstrate curious semipermanent bursts of high behavior. There is no seasonal pattern for the start of these events, and the sudden switch to high deaths can occur at any time, even in immediately adjacent areas. Higher deaths and related demand and costs endure for around 12 months before they suddenly revert to the former level where they stay until the next of these curious high events. In England and Wales (and many other countries), a period of unexplained higher deaths, reduced life expectancy, and health care and life insurance costs since 2011 appears to be coming to an end and looks to have arisen from a coincidence of these events at sub-national level.
Objective To examine the association of the use of hospice care on patient experience and outcomes of care. Promoting high-value, safe and effective care is an international healthcare imperative. However, the extent to which hospice care may improve the value of care is not well characterised.
Methods A secondary analysis of variations in care was conducted using the Dartmouth Atlas Report, matched to the American Hospital Association Annual Survey Database to abstract organisational characteristics for 236 US hospitals to examine the relationship between hospice usage and a number of variables that represent care value, including hospital care intensity index, hospital deaths, intensive care unit (ICU) deaths, patient satisfaction and a number of patient quality indicators. Structural equation modelling was used to demonstrate the effect of hospice use on patient experience, clinical and efficiency outcomes.
Results Hospice admissions in the last 6 months of life were correlated with a number of variables, including increases in patient satisfaction ratings (r=0.448, p=0.01) and better pain control (r=0.491, p=0.01), and reductions in hospital days (r=-0.517, p=0.01), fewer hospital deaths (r=-0.842, p=0.01) and fewer deaths occurring with an ICU admission during hospitalisation (r=-0.358, p=0.01). The structural equation model identified that use of hospice care was inversely related to hospital mortality (-0.885) and ICU mortality (-0.457).
Conclusions The results of this investigation demonstrate that greater use of hospice care during the last 6 months of life is associated with improved patient experience, including satisfaction and pain control, as well as clinical outcomes of care, including decreased ICU and hospital mortality..
BACKGROUND: To enhance the quality of hospice care and to facilitate consumers' choices, the Centers for Medicare and Medicaid Services (CMS) began the Hospice Quality Reporting Program, in which CMS posted the quality measures of participating hospices on its reporting website, Hospice Compare. Little is known about the participation rate and the types of nonparticipating hospices.
OBJECTIVE: To examine the factors associated with hospices' nonparticipation in Hospice Compare.
RESEARCH DESIGN: We analyzed data from the CMS 2016 Hospice Compare. "Nonparticipants" were those who did not submit any quality measure. With the data of the Provider of Service file, the Healthcare Cost Report Information System, and the Area Health Resources File, multivariate logistic regressions estimated the association between nonparticipants and hospice and market characteristics, including ownership, size, nurse staffing ratio, and market competition intensity.
RESULTS: Among the 4123 certified hospices subject to penalty from nonparticipation, 259 did not participate in Hospice Compare. California, New Mexico, Texas, and Wyoming had participation rates lower than 80%. Hospices that were for-profit, had no accreditation, had few nurses per patient day, provided no inpatient care, and were located in competitive markets were less likely to participate than other hospices.
CONCLUSIONS: Hospice Compare successfully motivated hospice in participating in the quality report program in most of states. For-profit hospices, hospices with less quality, and hospices located in competitive markets were less likely to participate. Further research is warranted to examine the quality of these nonparticipants, especially in the 4 states with a lower participation rate.
Specialized palliative care teams improve outcomes for the steadily growing population of people living with serious illness. However, few studies have examined whether the specialty palliative care workforce can meet the growing demand for its services. We used 2018 clinician survey data to model risk factors associated with palliative care clinicians leaving the field early, and we then projected physician numbers from 2019 to 2059 under four scenarios. Our modeling revealed an impending "workforce valley," with declining physician numbers that will not recover to the current level until 2045, absent policy change. However, sustained growth in the number of fellowship positions over ten years could reverse the worsening workforce shortage. There is an immediate need for policies that support high-value, team-based palliative care through expansion in all segments of the specialty palliative care workforce, combined with payment reform to encourage the deployment of sustainable teams.
BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables.
AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility.
DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods.
SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care.
RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items.
CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.
OBJECTIVES: This study aims to identify heterogeneous depressive symptom trajectories among the widowed elderly in China, to explore predictive variables of latent class membership, and to detect between-classes differences in life satisfaction across time.
METHOD: Data of 198 individuals widowed between 2011 and 2013 were drawn from The China Health and Retirement Longitudinal Study (CHARLS), a nationally representative survey. Latent class growth analysis was employed to identify depressive symptom trajectories across 2011, 2013, and 2015, and a three-step auxiliary approach was applied to detect predictive variables of latent class membership. Mixed Analysis of Variances was followed to make between-class comparisons on life satisfaction across time.
RESULTS: Four grieving trajectories were identified: resilient (54.6%), chronic grief (23.7%), depressed-improved (11.6%), and chronic depression (10.1%). Older age, living exclusively with spouse before widowhood, and agricultural Hukou were significant predictors of depressed-improved, chronic grief, and chronic depression patterns, respectively. Life satisfaction in all groups except for the resilient one remained stable across time, and that of the chronic depression group was significantly lower than those of all the remaining groups.
CONCLUSION: Consistent depressive symptom trajectories during late-life widowhood exist across nations while the specific culture, values, and resources in the Chinese context may have contributed to a particularly high proportion of the chronic grief trajectory. More efforts should be made to identify patterns with predictors before support are provided, and interventions need to be tailored to target specific needs in each subgroup of the elderly during their transitions to widowhood.
As the Medicare program struggles to control expenditures, there is increased focus on opportunities to manage patient populations more efficiently and at a lower cost. A major source of expense for the Medicare program is beneficiaries at end of life. Estimates of the percentage of Medicare costs that arise from patients in the last year of life differ, ranging from 13% to 25%, depending on methods and assumptions. We analyze the most recently available Medicare Limited Data Set to update prior studies of end-of-life costs and examine different methods of performing this calculation. Based upon these findings, we conclude that higher estimates that take into account the spending over the 12 months leading up to death more accurately reflect the full cost of a patient's last year of life. Comparing current year costs of decedents with Medicare's current year costs understates the full budgetary impact of end-of-life patients. Because risk-taking entities such as Medicare Advantage plans and Accountable Care Organizations (ACOs) need to reduce costs while improving the quality of care, they should initiate programs to better manage the care of patients with serious or advanced illness. We also calculate costs for beneficiaries dying in different settings and conclude that more effective use of palliative care and hospice benefits offers a lower cost, higher quality alternative for patients at end of life.
Après 15 ans de recueil et d’enregistrement de données administratives et médicales, la Fédération Wallonne de soins palliatifs dispose de données chiffrées qui lui permettent de poser un regard rétrospectif sur l’activité des unités de soins palliatifs, à travers quelques items-clés, sur 4 années prises comme références. Dans cet article, la discussion portera sur le nombre de patients hospitalisés au sein de ces unités, les pourcentages de pathologies cancéreuses, la durée d’hospitalisation, l’origine des admissions, les pourcentages de réadmissions et les fins de séjour en unités. L’article se clôturera ensuite par quelques conclusions et perspectives pour l’avenir.
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.
PURPOSE: There is limited information on the use of data visualization tools for health services research applications. We provide a proof-of-concept application that focuses on claims-based measures of palliative radiation therapy. We investigate whether a guided, data-driven investigation contributes information for subsequent statistical analysis and algorithm development.
METHODS: This retrospective cohort study used linked registry and claims data on men who were diagnosed with stage IV M0 or stage IV M1b prostate cancer between 2005 and 2009, with associated claims from 2005 through 2010, and receiving radiation therapy. Preprocessing of data was accomplished by using EventFlow software to investigate longitudinal patterns in claims for radiation therapy in the 13 months after cancer diagnosis. Guided by results from EventFlow, we developed descriptive statistics to investigate the length of radiation therapy, use of bone metastasis coding, and mortality between M1b and M0 patients.
RESULTS: A total of 1,151 patients met the inclusion criteria. Taking advantage of the novel aggregation capability of EventFlow, we observed differences in the length of radiation therapy and the use of bone metastasis coding between men with (M1b) and without (M0) a diagnosis of bone metastasis. Seventy-nine percent of M1b patients received radiation for a duration = 4 weeks, which suggested palliative radiation (to the bone). Seventy-six percent of M0 patients received radiation for = 6 weeks, which suggested radiation to the prostate. Mortality was higher among those who received a shorter duration of radiation therapy compared with those who received a longer duration of therapy.
CONCLUSION: Use of EventFlow, followed by statistical analysis of the linked registry and claims data, identified useful components of a claims-based measure of radiation to the bone.
The author focus on what went into the Danish stillbirth rate not only according to definitions but also seen in a broader context of cultural practices around birth and registration conventions.
In 2016, 77.9% of residents in residential care communities had an advance directive documented in their files. By Census division, the highest percentage (87.8%) of residents who had an advance directive were located in the Mountain division, followed by residents in East North Central (83.7%), New England (80.0%), West North Central (78.9%), Pacific (77.6%), South Atlantic (77.4%), East South Central (76.4%), Middle Atlantic (68.8%), and West South Central (64.9%).
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This article examines the cultural sources of underreported suicide deaths in South Korea. It analyzes two sets of suicide data compiled by two different government agencies. Noting the considerable undercounting of suicide deaths compiled by the National Statistical Office, it explores how the underreporting is linked to the Confucian norm of familism. Despite an effort to improve the quality of official suicide data, a reform in the death system is needed in order to gather accurate data for a better understanding of the increased suicides as well as for the development of more effective suicide prevention and intervention strategies.
OBJECTIVE: To examine the concordance between dates of death recorded in UK primary care and national mortality records.
METHODS: UK primary care data from the Clinical Practice Research Datalink were linked to Office for National Statistics (ONS) data, for 118 571 patients who died between September 2010 and September 2015. Logistic regression was used to examine factors associated with discrepancy in death dates between data sets.
RESULTS: Death dates matched in 76.8% of cases with primary care dates preceding ONS date in 2.9%, and following in 20.3% of cases; 92.2% of cases differed by <2 weeks. Primary care date was >4 weeks later than ONS in 1.5% of cases and occurred more frequently with deaths categorised as 'external' (15.8% vs 0.8% for cancer), and in younger patients (15.9% vs 1% for 18-29 and 80-89 years, respectively). General practices with the greatest discrepancies (97.5th percentile) had around 200 times higher odds of recording substantially discordant dates than practices with the lowest discrepancies (2.5th percentile).
CONCLUSION: Dates of death in primary care records often disagree with national records and should be treated with caution. There is marked variation between practices, and studies involving young patients, unexplained deaths and where precise date of death is important are particularly vulnerable to these issues.