Trends in appropriateness of end-of-life care in people with cancer, COPD or with dementia measured with population-level quality indicators.

INTRODUCTION: Measuring changes in the appropriateness of end-of-life care provided to patients with advanced illness such as cancer, COPD or dementia can help governments and practitioners improve service delivery and quality of life. However, an assessment of a possible shift in appropriateness of end-of-life care across the population is lacking. AIM: Measuring quality indicators with routinely collected population-level data, this study aims to evaluate the appropriateness of end-of-life care for people with cancer, COPD or dementia in Belgium. DESIGN: A population-level decedent cohort study, using data from eight population-level databases, including death certificate and health claims data. We measured validated sets of quality indicators for appropriateness of end-of-life care. SETTING/PARTICIPANTS: All people who died from cancer or COPD or with dementia between 1st January 2010 and 1st January 2016 in Belgium. RESULTS: We identified three main trends over time across the three disease groups of increasing use of: family physicians in the last 30 days of life (+21.7% in cancer, +33.7% in COPD and +89.4% in dementia); specialist palliative care in the last 14 days of life (+4.6% in cancer, +36.9% in COPD, +17.8% in dementia); and emergency department in the last 30 days of life (+7.0% in cancer, +4.4% in COPD and +8.2% in dementia). CONCLUSIONS: Although we found an increase of both specialized palliative care and generalist palliative care use, we also found an increase in potentially inappropriate care, including ED and ICU admissions. To increase the quality of end-of-life care, both timely initiating (generalist and specialist) palliative care and avoiding potentially inappropriate care transitions, treatments and medications need to be quality performance targets.

Who finds the road to palliative home care support? A nationwide analysis on the use of supportive measures for palliative home care using linked administrative databases.

BACKGROUND: Many countries developed supportive measures for palliative home care, such as financial incentives or multidisciplinary palliative home care teams. For policy makers, it is important to evaluate the use of these national palliative home care supportive measures on a population level. METHODS AND FINDINGS: Using routinely-collected data on all deaths in Belgium in 2012 (n = 107,847) we measured the use of four statutory supportive measures, specifically intended for patients who have obtained the legal palliative status, and three non-statutory supportive measures. Factors associated with uptake were analysed using multivariable logistic regression. Of all deaths of adult home-dwelling persons in Belgium (n = 87,007), 17.9 percent used at least one statutory supportive measure and 51.5 percent used at least one non-statutory supportive measure. In those who died of an illness indicative of palliative care needs 33.1 percent used at least one statutory supportive measure and 62.2 percent used at least one non-statutory supportive measure. Younger people and persons dying from cancer were more likely to use a statutory policy measure. Older people and persons dying from COPD were most likely to use a non-statutory policy measure. Women, non-single people, and those living in less urbanised areas were most likely to use any supportive measure. CONCLUSIONS: Statutory supportive measures for palliative home care are underused, even in a subpopulation of persons with potential palliative care needs. Policy makers should stimulate an equitable uptake, and reducing the observed inequalities is an important focus for health care policy.

Appropriateness of End-of-Life Care in People Dying From COPD. Applying Quality Indicators on Linked Administrative Databases.

CONTEXT: Large-scale evaluations of the quality of end-of-life care in people with chronic obstructive pulmonary disease (COPD) are lacking. OBJECTIVES: By means of a validated set of quality indicators (QIs), this study aimed to 1) assess appropriateness of end-of-life care in people dying from COPD; 2) examine variation between care regions; 3) establish performance standards. METHODS: We conducted a retrospective observational study of all deaths from COPD (ICD-10 codes J41-J44) in 2012 in Belgium, using data from administrative population-level databases. QI scores were risk-adjusted for comparison between care regions. RESULTS: A total of 4231 people died from COPD. During the last 30 days of life, 60% was admitted to hospital and 11.8% received specialized palliative care. Large regional variation was found in specialized palliative care use (4.0%-32.0%) and diagnostic testing in the last 30 days of life (44.0%-69.7%). Based on best performing quartile scores, relative standards were set (e.g., ≤54.9% for diagnostic testing). CONCLUSION: Our study found indications of inappropriate end-of-life care in people with COPD, such as high percentages of diagnostic testing and hospital admissions and low proportions receiving specialized palliative care. Risk-adjusted variation between regions was high for several QIs, indicating the usefulness of relative performance standards to improve quality of end-of-life COPD care.

Applying Quality Indicators For Administrative Databases To Evaluate End-Of-Life Care For Cancer Patients In Belgium.

End-of-life cancer care has been criticized as frequently inappropriate and aggressive. Providing appropriate care to people with cancer is a public health priority. Quality indicators are considered a valid way to evaluate the appropriateness of end-of-life cancer care within a health care system. We conducted a population-level retrospective observational study of all cancer decedents in Belgium in 2012 to assess end-of-life care and risk factors for exposure to care. We linked eight full-population databases on health care use, cancer diagnoses, and demographic and socioeconomic variables. We used analysis of variance to examine factors associated with exposure to appropriate or inappropriate end-of-life cancer care. Of the 26,464 people in Belgium who died from cancer in 2012, 47 percent received specialist palliative care, and 30 percent died at home. In the last thirty days of life, 17 percent received chemotherapy, and 66 percent received diagnostic testing. For 17 percent, palliative care was initiated only in the last fourteen days of life. Our results suggest a need to focus policy on reducing aggressive and inappropriate care at the end of life and an opportunity to increase the proportion of people who receive specialist palliative care and die at home.

Using linked administrative and disease-specific databases to study end-of-life care on a population level.

BACKGROUND: The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases. METHODS: Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies. For all relevant databases, we followed procedures in cooperation with database administrators to link the databases and to access the data. RESULTS: We identified several databases as fitting for end-of-life care research in Belgium: the InterMutualistic Agency's national registry of health care claims data, the Belgian Cancer Registry including data on incidence of cancer, and databases administrated by Statistics Belgium including data from the death certificate database, the socio-economic survey and fiscal data. To obtain access to the data, approval was required from all database administrators, supervisory bodies and two separate national privacy bodies. Two Trusted Third Parties linked the databases via a deterministic matching procedure using multiple encrypted social security numbers. CONCLUSION: In this article we describe how various routinely collected population-level databases and disease registries can be accessed and linked to study patterns in the use, quality and costs of end-of-life care in the full population and in specific diagnostic groups.

Implementation of a Care Pathway for Primary Palliative Care in 5 research clusters in Belgium: quasi-experimental study protocol and innovations in data collection (pro-SPINOZA).

BACKGROUND: Starting with early identification of palliative care patients by general practitioners (GPs), the Care Pathway for Primary Palliative Care (CPPPC) is believed to help primary health care workers to deliver patient- and family-centered care in the last year of life. The care pathway has been pilot-tested, and will now be implemented in 5 Belgian regions: 2 Dutch-speaking regions, 2 French-speaking regions and the bilingual capital region of Brussels. The overall aim of the CPPPC is to provide better quality of primary palliative care, and in the end to reduce the hospital death rate. The aim of this article is to describe the quantitative design and innovative data collection strategy used in the evaluation of this complex intervention. METHODS/DESIGN: A quasi-experimental stepped wedge cluster design is set up with the 5 regions being 5 non-randomized clusters. The primary outcome is reduced hospital death rate per GPs' patient population. Secondary outcomes are increased death at home and health care consumption patterns suggesting high quality palliative care. Per research cluster, GPs will be recruited via convenience sampling. These GPs -volunteering to be involved will recruit people with reduced life expectancy and their informal care givers. Health care consumption data in the last year of life, available for all deceased people having lived in the research clusters in the study period, will be used for comparison between patient populations of participating GPs and patient populations of non-participating GPs. Description of baseline characteristics of participating GPs and patients and monitoring of the level of involvement by GPs, patients and informal care givers will happen through regular, privacy-secured web-surveys. Web-survey data and health consumption data are linked in a secure way, respecting Belgian privacy laws. DISCUSSION: To evaluate this complex intervention, a quasi-experimental stepped wedge cluster design has been set up. Context characteristics and involvement level of participants are important parameters in evaluating complex interventions. It is possible to securely link survey data with health consumption data. By appealing to IT solutions we hope to be able to partly reduce respondent burden, a known problem in palliative care research. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02266069.

Patterns of health care use and expenditure during the last 6 months of life in Belgium: differences between age categories in cancer and non-cancer patients.

OBJECTIVES: We analysed end-of-life care in Belgium to examine potential age variation in place of death, transitions between care settings, health care utilisation and public expenditure in the last 6 months of life. METHODS: Administrative data of one sickness fund were used, and analysed through regression analysis and analysis of variance. The study population comprised 40,794 individuals (age>40 years). RESULTS: Several indicators showed that the end-of-life of older people, especially of those aged >or=90 years, differs from that of younger individuals. Older persons more likely died in a care home, were less transferred between care settings, and stayed less days in hospital. On the other hand, older persons used more home care services, and had more contacts with the general practitioner. Differences between age categories were equally observed for last week's end-of-life care. Opposite to the trend for cancer patients, the odds of having a palliative home care allowance increased with age for non-cancer patients. Public expenditure for the oldest old was lower as compared to the younger decedents, but dependent on place of death. CONCLUSION: Several aspects of end-of-life care in Belgium appear to be influenced by age. In view of ageing of the population, these findings can be of interest to decision makers.

Molecular phenotyping of lignin-modified tobacco reveals associated changes in cell-wall metabolism, primary metabolism, stress metabolism and photorespiration.

Lignin is an important component of secondarily thickened cell walls. Cinnamoyl CoA reductase (CCR) and cinnamyl alcohol dehydrogenase (CAD) are two key enzymes that catalyse the penultimate and last steps in the biosynthesis of the monolignols. Downregulation of CCR in tobacco (Nicotiana tabacum) has been shown to reduce lignin content, whereas lignin in tobacco downregulated for CAD incorporates more aldehydes. We show that altering the expression of either or both genes in tobacco has far-reaching consequences on the transcriptome and metabolome. cDNA-amplified fragment length polymorphism-based transcript profiling, combined with HPLC and GC-MS-based metabolite profiling, revealed differential transcripts and metabolites within monolignol biosynthesis, as well as a substantial network of interactions between monolignol and other metabolic pathways. In general, in all transgenic lines, the phenylpropanoid biosynthetic pathway was downregulated, whereas starch mobilization was upregulated. CCR-downregulated lines were characterized by changes at the level of detoxification and carbohydrate metabolism, whereas the molecular phenotype of CAD-downregulated tobacco was enriched in transcript of light- and cell-wall-related genes. In addition, the transcript and metabolite data suggested photo-oxidative stress and increased photorespiration, mainly in the CCR-downregulated lines. These predicted effects on the photosynthetic apparatus were subsequently confirmed physiologically by fluorescence and gas-exchange measurements. Our data provide a molecular picture of a plant's response to altered monolignol biosynthesis.