Healthcare utilization at the end of life in people dying from amyotrophic lateral sclerosis: A retrospective cohort study using linked administrative data.

BACKGROUND: ALS is an incurable neurodegenerative disorder, with the recommendation that symptom management and palliative care start immediately or soon after diagnosis. However, little is known about healthcare utilization at the end of life in this patient group. AIM: To describe healthcare utilization at the end of life in patients who died from ALS. DESIGN: We performed a retrospective cohort study using population-level administrative databases. The description of healthcare utilization was based on (1) validated quality indicators for end-of-life care, and (2) the European Federation of Neurological Societies guidelines on the clinical management of ALS. SETTING: We included all people who died from ALS in Belgium between 2010 and 2015 (using ICD-10 code G12.2). RESULTS: 1636 people died from ALS in Belgium between 2010 and 2015. The mean age at death was 71 years (SD11.3), and 56% were men. Specialized palliative care was used by 44% at some point in the last two years of life. In the last month of life, 13% received tube feeding, 48% received diagnostic testing, 41% were admitted to a hospital, and 25% were admitted to an emergency department. Medications were used mainly to treat pain (43%), insomnia and fatigue (33%) and thrombosis (32%); 39% used riluzole. Non-invasive ventilation was used by 18%. 39% died at home. CONCLUSION: Administrative data provide a valuable source to describe healthcare utilization in small populations such as ALS, but more clinical evidence is needed on the advantages and disadvantages initiating or terminating treatments at the end of life.

Are We Evolving Toward Greater and Earlier Use of Palliative Home Care Support? A Trend Analysis Using Population-Level Data From 2010 to 2015.

CONTEXT: The need for increased use and earlier initiation of palliative home care has been advocated by several international organizations. OBJECTIVES: To investigate time trends in the use and timing of initiating palliative home care support (PHCS). METHODS: We conducted an observational study using routinely collected population-level databases linked with health claims data for the entire population living at home that died of diseases indicative of palliative care needs in Belgium between 2010 and 2015 (n = 230,704). Trends and trends by cause of death and age were measured through changes over time in prevalence of use of PHCS. Rates were standardized for age, sex, and cause of death distribution in 2010. The median number of days before death when PHCS was initiated was calculated for each year. RESULTS: Uptake of PHCS increased from 31.7% to 34.9% between 2010 and 2015. Trends were similar in size for all groups, except for people who died of dementia (smallest increase with 1.9 percent point). The timing of initiating PHCS advanced from 41 to 46 days before death, with the smallest increase observed among people who died of dementia (+2.5 days). The proportion of people receiving PHCS only in the last week of life changed from 15.3% to 13.9%. CONCLUSION: This population-level study found a slight trend toward more and earlier initiation of PHCS between 2010 and 2015. However, uptake of PHCS remained below estimated needs in the population and the proportion of people receiving PHCS in their very late life remained stable over time.

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.

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.

Policy Measures to Support Palliative Care at Home: A Cross-Country Case Comparison in Three European Countries.

CONTEXT: The proportion of people in need of palliative care worldwide is rising, and the majority wish to receive this care at home. Many countries have created policy measures to support palliative care at home. OBJECTIVE: To list and compare existing policy measures designed to support palliative care at home in addition to available primary care services in Belgium, France, and Germany. METHODS: A cross-country case comparison based on expert consultation, governmental policy documents, and relevant scientific literature. RESULTS: All three countries have policy measures that allow informal caregivers to adapt their working patterns or take leave of absence to provide care without losing employee rights; however, only Belgium offers specific paid palliative care leave. All three countries offer various allowances to people who are dying at home and their caregivers. Cost-reductions for out-of-pocket expenses are available, based on the level of care dependency in Germany and on prognosis in Belgium, but are not provided in France. Mobile home support teams exist in all three countries and are free of charge for patients and caregivers; but only in Belgium and Germany, there are specialist multidisciplinary palliative home care teams. Belgium and Germany provide respite care for palliative patients. CONCLUSION: European countries with similar contextual characteristics offer comparable policy measures to support palliative care at home in addition to the available primary care services. However, important differences exist in the criteria for access and the extent of what is offered.

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.