Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning.

BACKGROUND: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. AIM: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. DESIGN: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. SETTING/PARTICIPANTS: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. RESULTS: Patients with a good performance status were underrepresented in the intervention group (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). CONCLUSIONS: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established.

Improved quality of care and reduced healthcare costs at the end-of-life among older people with dementia who received palliative home care: A nationwide propensity score-matched decedent cohort study.

BACKGROUND: While palliative home care is advocated for people with dementia, evidence of its effectiveness is lacking. AIM: To evaluate the effects of palliative home care on quality and costs of end-of-life care for older people with dementia. DESIGN: Decedent cohort study using linked nationwide administrative databases and propensity score matching. SETTING/PARTICIPANTS: All home-dwelling older people who died with dementia between 2010 and 2015 in Belgium (N = 23,670). EXPOSURE: Receiving palliative home care support for the first time between 360 and 15 days before death. RESULTS: Five thousand six hundred and thirty-seven (23.8%) received palliative home care support in the last 2 years of life, of whom 2918 received it for the first time between 360 and 15 days before death. Two thousand eight hundred and thirty-nine people who received support were matched to 2839 people who received usual care. After matching, those using palliative home care support, in the last 14 days of life, had lower risk of hospital admission (17.5% vs 50.5%; relative risk (RR) = 0.21), undergoing diagnostic testing (17.0% vs 53.6%; RR = 0.20) and receiving inappropriate medications, but were more likely to die at home (75.7% vs 32.6%; RR = 6.45) and to have primary care professional contacts (mean 11.7 vs mean 5.2), compared with those who did not. Further, they had lower mean total costs of care in the last 30 days of life (incremental cost:-€2129). CONCLUSIONS: Palliative home care use by home-dwelling older people with dementia is associated with improved quality and reduced costs of end-of-life care. Access remains low and should be increased.

Earlier palliative home care is associated with patient-centred medical resource utilisation and lower costs in the last 30†days before death in COPD: a population-level decedent cohort study.

COPD patients often use many medical resources, such as hospital admissions and medical imaging, inappropriately close to death. Palliative home care (PHC) could beneficially affect this. The aim was to study the effect of use and timing of PHC on medical resource use and costs in the last 30 days before death (DBD) for COPD.We performed a retrospective study of all Belgian decedents in 2010-2015 with COPD and a primary cause of death being COPD or cardiovascular diseases. Odds ratios for medical resources were calculated between using and four PHC timing categories (>360, 360-181, 180-91 and 90-31 DBD) versus not using. Confounders were socio-demographic, care intensity and disease severity variables.Of the 58 527 decedents with COPD, 644 (1.1%) patients received PHC earlier than 30 DBD. Using PHC (versus not using) decreased the odds ratio for hospitalisation (0.35), intensive care unit admission (0.16), specialist contacts (0.58), invasive ventilation (0.13), medical imaging including chest radiograph (0.34), sedatives (0.48) and hospital death (0.14). It increased the odds ratio for home care (3.27), general practitioner contact (4.65), palliative care unit admission (2.61), noninvasive ventilation (2.65), gastric tube (2.15), oxygen (2.22) and opioids (4.04) (p<0.001). Mean total healthcare costs were €1569 lower for using PHC. All PHC timing categories showed a benefit in medical resource use and costs. However, we observed the largest benefit in the category PHC 90-31 DBD.Health policy and services should focus on increasing PHC access, while research should further explore early PHC initiation for COPD.

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.

The added value of palliative day care centres: A full-population cross-sectional survey among clients and their family caregivers in Flanders, Belgium.

In addition to palliative care delivery at home or in hospital, palliative day care centres occupy an in-between position in palliative care. In palliative day care centres, multidisciplinary teams provide holistic care and support for people with (chronic) life-limiting conditions, or clients, in a homely surrounding, allowing them to remain living at home while attending a specialist palliative care service. This study aims to evaluate palliative day care centres from a user perspective. We conducted a full-population cross-sectional survey of clients (N = 86) and their family caregivers (N = 63) in all five palliative day care centres in Flanders, Belgium from January until December 2019. We used validated instruments supplemented with self-developed items to measure participants' reasons for use, support provided, unmet support needs and added value to other (palliative) care services across palliative care domains, i.e., physical, psychological, social and spiritual care. Response rate was 77% for clients and 81% for family caregivers. The most often indicated reasons for use were that the client needs social contacts (clients: 73%, caregivers: 65%), to enable the client to live at home as long as possible (resp. 58%, 55%) and to reduce the family caregiver's mental burden (resp. 42%, 65%). Three out of four family caregivers felt better able to combine daily activities with caring for the client (77%) and felt better able to perform their family care-giving tasks (77%) because the client attends the palliative day care centre. Thirty-six per cent of clients had received support for social needs exclusively in the palliative day care centre and not from any professionals outside palliative day care. Palliative day care centres seem to be of added value for those care domains to which often less attention is paid in other settings, particularly social and emotional support, both for clients and family caregivers.

Evaluating Large-Scale Integrated Care Projects: The Development of a Protocol for a Mixed Methods Realist Evaluation Study in Belgium.

BACKGROUND: The twelve Integrated Care Program pilot projects (ICPs) created by the government plan 'Integrated Care for Better Health' aim to achieve four outcome types (the Quadruple Aim) for people with chronic diseases in Belgium: improved population health, improved patient and provider experiences and improved cost efficiency. The aim of this article is to present the development of a mixed methods realist evaluation of this large-scale, whole system change programme. METHODS: A scientific team was commissioned to co-design and implement an evaluation protocol in close collaboration with the government, the ICPs and several other involved stakeholders. RESULTS: A protocol for a mixed methods realist evaluation was developed to gain insights into the mechanisms that foster successful results in ICPs. The qualitative evaluation proposed will be based on the document analysis of yearly ICP progress reports, selected case studies and focus group interviews with stakeholders. Processes and outcomes of all the projects will be monitored using indicators based on administrative data on population health and the quality and costs of care. A yearly survey will be organized to collect data on patient-reported outcomes and experiences and on provider-reported measures of inter-professional collaboration and proper wellbeing. Using both quantitative and qualitative data, we will develop theories about the mechanisms and the associated contextual factors that lead to integrated care and the Quadruple Aim outcomes. DISCUSSION: The objective of this study is to deliver policy recommendations on strategies and best practices to improve care integration in Belgium and to implement a sustainable monitoring system that serves both policy makers and the stakeholders within the ICPs. Some challenges due to the large scale of the project and the multiple stakeholders involved may impede the successful implementation of this proposal.

Impact of palliative home care support on the quality and costs of care at the end of life: a population-level matched cohort study.

OBJECTIVES: To evaluate the impact of palliative home care support on the quality of care and costs in the last 14 days of life. DESIGN: Matched cohort study using linked administrative databases. SETTING: All people who died in Belgium in 2012 (n=107 847). PARTICIPANTS: 8837 people who received palliative home care support in the last 720 to 15 days of life matched 1:1 by propensity score to 8837 people who received usual care. INTERVENTION: Receiving the allowance for palliative home patients, multidisciplinary palliative home care team visit or palliative nurse or physiotherapist visit at home. MAIN OUTCOME MEASURES: Home death, number of family physician contacts, number of primary caregiver contacts, hospital death, hospital admission, intensive care unit (ICU) admission, emergency department (ED) admission, diagnostic testing, blood transfusion and surgery. Total inpatient and outpatient costs. All outcomes were measured in the last 14 days of life. RESULTS: In the unmatched cohort, 11 149 (13.5%) people received palliative home care support in the last 720 to 15 days of life. After matching, those using palliative home care support had, compared with those who did not, more family physician contacts (mean 3.1 [SD=6.5] vs 0.8 [SD=1.2]), more chance of home death (56.2%vs13.8%; relative risk [RR]=4.08, 95% CI 3.86 to 4.31), lower risk of hospital admission (27.4%vs60.8%; RR=0.45, 95% CI 0.43 to 0.46), ICU admission (18.3%vs40.4%; RR=0.45, 95% CI 0.43 to 0.48) or ED admission (15.2%vs28.1%; RR=0.54, 95% CI 0.51 to 0.57). Mean total costs of care were lower for those using palliative home care support (€3081 [95% CI €3025 to €3136] vs €4698 [95% CI €4610 to €4787]; incremental cost: -€1617 [p<0.001]). CONCLUSIONS: Palliative home care support use positively impacts quality of care and reduces total costs of care at the end of life in Belgium. Policy makers and healthcare practitioners should increasingly focus on communicating the existing options for palliative home care support to patients and their caregivers.

Resource Use During the Last 6 Months of Life of Individuals Dying with and of Alzheimer's Disease.

OBJECTIVES: To compare resource use during the last 6 months of life of individuals diagnosed with Alzheimer's disease (AD) but for whom AD was not formally identified as the underlying cause of death (dying with AD) with that of those who had AD as underlying cause of death (dying of AD). DESIGN: Full-population retrospective analysis. SETTING: Belgium. PARTICIPANTS: All Belgian decedents in 2012. MEASUREMENTS: We linked participants' healthcare, population, and death certificate data. Those who died of AD were selected based on underlying cause of death. Those who died with AD were selected using a validated algorithm. RESULTS: Individuals who died of AD had less hospital use than those who died with AD; were less often admitted to a palliative care unit but received palliative home care services slightly more often; and had use of physiotherapy, noninvasive ventilation, medical imaging, sedatives, oxygen, and opioids comparable with that of those who died with AD. CONCLUSION: During the last 6 months of life, individuals dying of AD used fewer intensive resources such as intensive care unit, cardiopulmonary resuscitation, and invasive ventilation than those dying with AD, which suggests the effect of recognition of an end-of-life phase. Overall, individuals with AD rarely used palliative care services, suggesting a need for more efforts to encourage use of palliative care in individuals with AD.

Resource Use During the Last Six Months of Life Among COPD Patients: A Population-Level Study.

CONTEXT: Chronic obstructive pulmonary disease (COPD) patients often have several comorbidities, such as cardiovascular diseases (CVDs) or lung cancer (LC), which might influence resource use in the final months of life. However, no previous studies documented end-of-life resource use in COPD patients at a population level, thereby differentiating whether COPD patients die of their COPD, CVD, or LC. OBJECTIVES: The objectives of the study were to describe end-of-life resource use in people diagnosed with COPD and compare this resource use between those dying of COPD, CVD, and LC. METHODS: We performed a full-population retrospective analysis of all Belgian decedents. Those who died of COPD were selected based on the primary cause of death. Those who died with COPD but with CVD or LC as a primary cause of death were identified based on a validated algorithm expanded with COPD as intermediate or associated. RESULTS: Resource use among 13,086 patients dying of or with COPD was studied. Those who died of COPD received less opioids, sedatives, and morphine; used less palliative care services; and received more invasive and noninvasive ventilation as compared to the other two groups. Those who died of LC had more specialist contacts, hospital admissions, and medical imaging as compared to those who died of COPD or CVD. Those who died of CVD used less palliative care services when compared to those who died of LC and had a comparable use of hospital, intensive care unit, home care, opioids, sedatives, and morphine when compared to those who died of COPD. CONCLUSION: The presence of lung cancer and CVDs influences resource use in COPD patients at life's end. We recommend that future research on end-of-life care in COPD patients systematically accounts for specific comorbidities.

Resource Use and Health Care Costs of COPD Patients at the End of Life: A Systematic Review.

CONTEXT: Patients with chronic obstructive pulmonary disease (COPD) in their final months of life potentially place a high burden on health care systems. Concrete knowledge about resources used and costs incurred by those patients at the end of life is crucial for policymakers. OBJECTIVES: The aim of this systematic review was to describe the resources used and costs incurred by patients with COPD at the end of life. METHODS: We performed a comprehensive literature search in MEDLINE, Web of Science, and EconLit. We screened 886 abstracts and subsequently reviewed 80 full-text articles. Inclusion criteria were at least one type of resource use and/or cost outcome reported in adults diagnosed with COPD during an end-of-life period. Subsequently, we performed quality appraisal consistent with the ISPOR checklist for retrospective database studies and accomplished comprehensive data extraction. RESULTS: Ten articles fulfilled the inclusion criteria. Three, five, and two studies described European, North American, and Asian health care settings, respectively. All studies had a retrospective design and were published between 2006 and 2015. We observed a very variable resource use, an increased number of hospitalizations, intensive care unit stays, primary care consultations and medication prescriptions, as well as a lack of utilization of formal palliative care services in end-of-life COPD patients. Specific cost items were not well described. CONCLUSION: The high use of health care resources in COPD patients in the final months of life suggests a focus on prolonging life and a tendency toward aggressive care. Limiting potentially inappropriate care and improving the quality of end-of-life care in advanced COPD are, therefore, important public health challenges.

Effectiveness of Supporting Informal Caregivers of People with Dementia: A Systematic Review of Randomized and Non-Randomized Controlled Trials.

BACKGROUND: Dementia is known as a major public health problem affecting both patients and caregivers, and placing a high financial strain upon society. In community-dwelling patients, it is important to support informal caregivers in order to help them sustain their demanding role. Previous reviews about effectiveness of such supporting strategies often included a small number of studies, focused only on particular supportive types, particular outcomes, or solely on caregivers. OBJECTIVE: A general systematic review was conducted investigating effectiveness of different supportive strategies on at least the well-being of the caregiver or the care-recipient. METHODS: A systematic literature search was conducted in Web of Science and PubMed. An adapted version of the Downs and Black (1998) checklist was used to assess methodological quality. A new classification was developed to group different types of caregiver support. RESULTS: Fifty-three papers met the inclusion criteria. Although 87% of the interventions were to some extent effective, methods and findings were rather inconsistent. Psychoeducational interventions generally lead to positive outcomes for caregivers, and delay permanent institutionalization of care-recipients. Cognitive behavioral therapy decreases dysfunctional thoughts among caregivers. Occupational therapy decreases behavioral problems among patients and improves self-efficacy of caregivers. In general, those interventions tailored on individual level generate better outcomes. Comparative research on respite care was very rare. CONCLUSIONS: Despite methodological inconsistency, supporting caregivers appears to be an effective strategy often improving well-being of caregiver or care-recipient and resulting in additional benefits for society. However, there is a need for more research on the (cost)-effectiveness of respite care.