Patient, family and productivity costs of end-stage renal disease in the Netherlands; exposing non-healthcare related costs

Background Healthcare costs related to ESRD are well-described, but broader societal costs of ESRD are less known. This study aimed to estimate patient and family costs, including informal care costs and out-of-pocket costs, and costs due to productivity loss related to ESRD, for patients receiving dialysis and living with a kidney transplant, using a bottom-up approach. Methods A total of 655 patients were asked to complete a digital questionnaire consisting of two standardised instruments (iMCQ and iPCQ) from November 2016 through January 2017. We applied a retrospective bottom-up cost estimation by combining data from the questionnaire with unit prices from the Dutch costing manual. Results Our study sample consisted of 230 patients, of which 165 were kidney transplant recipients and 65 received dialysis. The total annual non-healthcare related costs were estimated at €8284 (SD: €14,266) for transplant recipients and €23,488 (SD: €39,434) for dialysis patients. Costs due to productivity loss contributed most to the total non-healthcare costs (66% for transplant recipients and 65% for dialysis patients), followed by informal care costs (26% resp. 29%) and out-of-pocket costs, such as medication and travel expenses (8% resp. 6%). Conclusion By exposing patient, family and productivity costs, our study revealed that dialysis and transplantation are not only costly within the healthcare system, but also incur high non-healthcare costs (18–23% resp. 35% of the total societal costs). It is important to reveal these types of non-healthcare costs in order to understand the full burden of ESRD for society and the potential impact of new therapies.

Economic Burden of Alzheimer’s Disease Dementia in Japan

Background: Alzheimer’s disease dementia (ADD) is the leading cause of long-term care in Japan. Objective: This study estimates the annual healthcare and long-term care costs in fiscal year 2018 for adults over 65 years of age with ADD in Japan and the informal care costs and productivity loss for their families. Methods: Healthcare and long-term care costs for ADD were estimated according to the disease severity classified by the clinical dementia rating (CDR) score, using reports from a literature review. For the costs of time spent on caregiving activities, productivity loss for ADD family caregivers aged 20–69 and informal care costs for all ADD family caregivers were estimated. Results: The total healthcare cost of ADD was JPY 1,073 billion, of which 86% (JPY 923 billion) was attributed to healthcare costs other than ADD drug costs (JPY 151 billion). The healthcare costs other than ADD drug costs by severity were less than JPY 200 billion for CDR–0.5, CDR-1, and CDR-2, respectively, but increased to JPY 447 billion (48%) for CDR-3. The public long-term care costs were estimated to be JPY 4,783 billion, which increased according to the severity. Total productivity loss for ADD family caregivers aged 20–69 was JPY 1,547 billion and the informal care cost for all ADD family caregivers was JPY 6,772 billion. Conclusion: ADD costs have a significant impact on public-funded healthcare, long-term care systems, and families in Japan. To minimize the economic burden of ADD, prolonging healthy life expectancy is the key factor to address.

Using Big Data to Estimate Dementia Prevalence in New Zealand: Protocol for an Observational Study

Background Dementia describes a cluster of symptoms that includes memory loss; difficulties with thinking, problem solving, or language; and functional impairment. Dementia can be caused by a number of neurodegenerative diseases, such as Alzheimer disease and cerebrovascular disease. Currently in New Zealand, most of the systematically collected and detailed information on dementia is obtained through a suite of International Residential Assessment Instrument (interRAI) assessments, including the home care, contact assessment, and long-term care facility versions. These versions of interRAI are standardized comprehensive geriatric assessments. Patients are referred to have an interRAI assessment by the Needs Assessment and Service Coordination (NASC) services after a series of screening processes. Previous estimates of the prevalence and costs of dementia in New Zealand have been based on international studies with different populations and health and social care systems. This new local knowledge will have implications for estimating the demographic distribution and socioeconomic impact of dementia in New Zealand. Objective This study investigates the prevalence of dementia, risk factors for dementia, and drivers of the informal cost of dementia among people registered in the NASC database in New Zealand. Methods This study aims to analyze secondary data routinely collected by the NASC and interRAI (home care and contact assessment versions) databases between July 1, 2014, and July 1, 2019, in New Zealand. The databases will be linked to produce an integrated data set, which will be used to (1) investigate the sociodemographic and clinical risk factors associated with dementia and other neurological conditions, (2) estimate the prevalence of dementia using weighting methods for complex samples, and (3) identify the cost of informal care per client (in number of hours of care provided by unpaid carers) and the drivers of such costs. We will use design-based survey methods for the estimation of prevalence and generalized estimating equations for regression models and correlated and longitudinal data. Results The results will provide much needed statistics regarding dementia prevalence and risk factors and the cost of informal care for people living with dementia in New Zealand. Potential health inequities for different ethnic groups will be highlighted, which can then be used by decision makers to inform the development of policy and practice. Conclusions As of November 2020, there were no dementia prevalence studies or studies on informal care costs of dementia using national data from New Zealand. All existing studies have used data from other populations with substantially different demographic distributions. This study will give insight into the actual prevalence, risk factors, and informal care costs of dementia for the population with support needs in New Zealand. It will provide valuable information to improve health outcomes and better inform policy and planning. International Registered Report Identifier (IRRID) DERR1-10.2196/20225

A comparative study on costs of cancer and access to medicines in Europe.

e19051 Background: Cancer care is evolving rapidly, and costs and value of new treatments are often causing headlines without being discussed in a larger context. This study estimates the cost of cancer and access to medicines in Europe in 2018 and extends a previous analysis for 1995–2014. Methods: Cancer-specific health expenditure for 31 countries (EU-27 plus Iceland, Norway, Switzerland, and the UK) were derived from national estimates. Data on cancer drug sales were obtained from IQVIA. The productivity loss from premature mortality was estimated from data from Eurostat and the WHO. Estimates of the productivity loss from morbidity and informal care costs were based on previous studies. Results: The total cost of cancer was €199 billion in 2018. Total costs ranged from €160 per capita in Romania to €578 in Switzerland (after adjustment for price differentials). Health expenditure on cancer care was €103 billion, of which €32 billion was spent on cancer drugs. Informal care costs were €26 billion. The total productivity loss was €70 billion, composed of €50 billion from premature mortality and €20 billion from morbidity. Between 1995 and 2018, cancer incidence increased by 50 percent from 2.1 million to 3.1 million cases in Europe. Cancer mortality increased only by 20 percent. Health spending on cancer care doubled from €52 billion to €103 billion (in 2018 prices and exchange rates), whereas the share of cancer care on the total health expenditure remained stable at around 4 to 7 percent. A shift from treatment in inpatient care to ambulatory care has probably saved costs. Expenditure on cancer medicines more than tripled from €10 billion to €32 billion between 2005 and 2018 (excluding confidential rebates). Productivity loss from premature mortality decreased over time, linked to mortality reductions in working-age patients. Conclusions: There are large country differences in spending on cancer care and outcomes in Europe. Access to new cancer medicines is low or very low in certain parts of Europe. Inequalities are mainly related to countries’ economic strength and not to the disease burden of cancer.

Using Big Data to Estimate Dementia Prevalence in New Zealand: Protocol for an Observational Study (Preprint)

BACKGROUND Dementia describes a cluster of symptoms that includes memory loss; difficulties with thinking, problem solving, or language; and functional impairment. Dementia can be caused by a number of neurodegenerative diseases, such as Alzheimer disease and cerebrovascular disease. Currently in New Zealand, most of the systematically collected and detailed information on dementia is obtained through a suite of International Residential Assessment Instrument (interRAI) assessments, including the home care, contact assessment, and long-term care facility versions. These versions of interRAI are standardized comprehensive geriatric assessments. Patients are referred to have an interRAI assessment by the Needs Assessment and Service Coordination (NASC) services after a series of screening processes. Previous estimates of the prevalence and costs of dementia in New Zealand have been based on international studies with different populations and health and social care systems. This new local knowledge will have implications for estimating the demographic distribution and socioeconomic impact of dementia in New Zealand. OBJECTIVE This study investigates the prevalence of dementia, risk factors for dementia, and drivers of the informal cost of dementia among people registered in the NASC database in New Zealand. METHODS This study aims to analyze secondary data routinely collected by the NASC and interRAI (home care and contact assessment versions) databases between July 1, 2014, and July 1, 2019, in New Zealand. The databases will be linked to produce an integrated data set, which will be used to (1) investigate the sociodemographic and clinical risk factors associated with dementia and other neurological conditions, (2) estimate the prevalence of dementia using weighting methods for complex samples, and (3) identify the cost of informal care per client (in number of hours of care provided by unpaid carers) and the drivers of such costs. We will use design-based survey methods for the estimation of prevalence and generalized estimating equations for regression models and correlated and longitudinal data. RESULTS The results will provide much needed statistics regarding dementia prevalence and risk factors and the cost of informal care for people living with dementia in New Zealand. Potential health inequities for different ethnic groups will be highlighted, which can then be used by decision makers to inform the development of policy and practice. CONCLUSIONS As of November 2020, there were no dementia prevalence studies or studies on informal care costs of dementia using national data from New Zealand. All existing studies have used data from other populations with substantially different demographic distributions. This study will give insight into the actual prevalence, risk factors, and informal care costs of dementia for the population with support needs in New Zealand. It will provide valuable information to improve health outcomes and better inform policy and planning. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/20225

Classification tree model of the personal economic burden of dementia care by related factors of both people with dementia and caregivers in Japan: a cross-sectional online survey

ObjectiveThe purpose of this study was to clarify the microlevel determinants of the economic burden of dementia care at home in Japanese community settings by classifying them into subgroups of factors related to people with dementia and their caregivers.DesignA cross-sectional online survey.Participants4313 panels of Japanese research company who fulfilled the following criteria: (1) aged 30 years or older, (2) non-professional caregiver of someone with dementia, (3) caring for only one person with dementia and (4) having no conflicts of interest with advertising or marketing research entities.Primary outcome measuresInformal care costs and out-of-pocket payments for long-term care (LTC) services.ResultsFrom 4313 respondents, only 1383 caregivers in community-settings were included in this analysis. We conducted a χ² automatic interaction detection analysis to identify the factors related to each cost (informal care costs and out-of-pocket payments for LTC services) divided into subcategories. In the resultant classifications, informal care cost was mainly related to caregivers’ employment status. When caregivers acquired family care leave, informal care costs were the highest. On the other hand, out-of-pocket payments for LTC were related to care-need levels and family economic status. Activities of Daily Living and Instrumental Activities of Daily Living functions such as bathing, toileting and cleaning were related to all costs.ConclusionThis study clarified the difference in dementia care costs between classified subgroups by considering the combination of the situations of both people with dementia and their caregivers. Informal care costs were related to caregivers’ employment and cohabitation status rather to the situations of people with dementia. On the other hand, out-of-pocket payments for LTC services were related to care-need levels and family economic status. These classifications will be useful in understanding which situation represents a greater economic burden and helpful in improving the sustainability of the dementia care system in Japan.

Utilizing population-based clinical and administrative data to estimate the incremental healthcare costs of dementia and frailty among community-residing care recipients.

IntroductionCurrent cost estimates for dementia in Canada are lacking and no studies have yet to examine the incremental healthcare costs associated with both dementia and frailty, despite evidence of increasing prevalence of both conditions and their bidirectional association. These data are essential for informed clinical and public policy programs. Objectives and ApproachUsing linked clinical and health administrative databases in Ontario, we conducted a cohort study of all long-stay home care clients aged 50+ years with a clinical assessment between April 2014 and March 2015 (n=160,209). We defined dementia using a validated algorithm, and frailty categories (robust, pre-frail, frail) using a modified frailty index from clinical assessment data. Clients were followed prospectively for 1-year, for which we obtained total- and sector-specific healthcare costs for all encounters. We calculated cost differences (in $2015CAD) between dementia-frailty groups using a survival- and covariate-adjusted cost estimator described by Manning and Basu (2010) that included dementia-frailty interactions. ResultsIn this population-based cohort of long-stay home care recipients, the prevalence of dementia was 26.8% and 33.3% of these clients were frail (vs. 26.9% among clients without dementia). Approximately 15% of the cohort died over the 1-year follow-up. The average 1-year estimated total health system cost was $26,965. On average, home care clients with dementia categorized as frail incurred $14,291 (SE=$139) more in charges than similar robust clients ($35,381 vs. $21,091, respectively). In contrast, frail persons without dementia incurred $12,796 (SE=$95) more in charges that similar robust clients ($33,659 vs. $20,864, respectively). Among frail persons, those with dementia incurred $1,722 (SE=$149) more in expenditures, on average. Wide variation in sector-specific costs were also observed by dementia and frailty strata. Conclusion/ImplicationsDementia and frailty pose significant challenges to healthcare systems. Our findings illustrate large incremental costs associated with frailty, regardless of dementia status. Further research using the linked clinical assessment and administrative data is needed to inform variations in, and to delineate key drivers of, formal healthcare and informal care costs associated with dementia and frailty.