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Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home-based end-of-life care programme in Ontario, Canada from 2005 to 2016, we build a two-part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home-based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home-based end-of-life patients. Decision-makers need to take into account the relationship between informal care and different types of formal services when introducing future policies., (© 2018 John Wiley & Sons Ltd.)

The main objective of this study was to examine whether and how the Palliative Performance Scale (PPS), a measure of a patient's function, was predictive of survival time for those in receipt of home-based palliative care. This was a prospective study, which included 194 cancer patients from November 17, 2013, to August 18, 2015. Data were collected from biweekly telephone interviews with caregivers. Kaplan-Meier survival curves were estimated to assess how survival time was correlated with initial PPS scores after admission to the home-based palliative care program. A multivariate extended Cox regression model was used to examine the association between PPS and survival. The results showed that patients with higher PPS scores, that is, better function, had a lower hazard ratio (0.977; 95% confidence interval: 0.965-0.989) and hence longer survival times. The PPS can be used in predicting survival time for home-based palliative care patients.

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home-based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home-based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home-based palliative care. The purpose of this study was to assess the propensity to use home-based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two-part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log-transformed ordinary least squares regression analysis. Both the propensity and intensity to use home-based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home-based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home-based palliative care has placed dramatic pressures on the budgets of local home and community care organisations., (© 2016 John Wiley & Sons Ltd.)

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders., (© 2014 John Wiley & Sons Ltd.)

Background: A limited understanding of satisfaction with home-based palliative care currently exists., Aim: This study measured family caregivers' satisfaction with home-based physician and nursing palliative care services, and explored predictors of satisfaction, across the palliative care trajectory., Design: A longitudinal, cohort design was used. Family caregivers were interviewed by telephone by-weekly from palliative care admission until death. Satisfaction was assessed using the Quality of End-of-Life care and Satisfaction with Treatment (QUEST) questionnaire. Multiple logistic regression models were used to determine the extent to which demographic, quality of care, and service related variables predicted satisfaction., Setting/participants: Family caregivers (N=104) of palliative care patients., Results: Each of the nine quality of care parameters were consistently found to be significant predictors of overall satisfaction with palliative care., Conclusions: The results may inform key health policy issues. Specifically, knowledge of how quality of care parameters predict family caregivers' satisfaction over the course of the palliative care trajectory may aid managers responsible for resource allocation and the determination of home care standards.

Restructuring health care in Canada has emphasized the provision of ambulatory and home-based palliative care. Acquiring economic evidence is critical given this trend and its tremendous demands on family caregivers. The purposes of this study were: 1) to comprehensively assess the societal costs of home-based palliative care; and 2) to examine the socio-demographic and clinical factors that account for variations in costs over the course of the palliative trajectory. One hundred and thirty-six family caregivers were interviewed every two weeks from time of palliative referral until death. Information regarding appointments, travel and out-of-pocket expenses, time devoted to caregiving, as well as demographic and clinical characteristics were measured. The mean monthly cost of care per patient was $24,549 (2008 CDN$). Family caregivers' time costs comprised most costs (70%). Multivariable linear regression indicated that costs were greater for patients who: had lower physical functioning (p < 0.001); lived with someone (p = 0.007); and when the patients approached death (p = 0.021). Information highlighting the variation in costs across individuals may aid policy makers and mangers in deciding how to allocate resources. Greater clarity regarding costs over the course of the palliative trajectory may improve access to care.

Objectives: The purpose of this study is to compare the approaches used for valuing family caregiver and care recipient time devoted to providing and receiving care., Methods: Valuation approaches were operationalized within a cohort of cystic fibrosis care recipients (n = 110). Base-case analyses, grounded in human capital theory, applied earnings estimates to caregiving time to impute the market value of time lost from labor. Unpaid labor and leisure time was valued with a replacement cost (homemaker's wage rate). Total time costs were computed and sensitivity analyses were conducted to describe the effects of alternative valuation methods on total costs., Results: The mean time cost per care recipient-caregiver dyad over 28 days was $2,026CAD. The majority (76 percent) of time costs were due to losses from unpaid labor and leisure time. Varying the valuation of paid labor time did not result in significantly different total time costs (p = .0877). However, varying the method of valuing unpaid labor and leisure time did significantly affect total costs (p < .0001)., Conclusions: Care recipients and caregivers primarily lost time from unpaid labor and leisure in the treatment of cystic fibrosis. Moreover, when the above losses were aggregated, the method of valuation greatly influenced overall results. The findings clearly indicate that omitting caregiver and unpaid labor and leisure costs may result in an inaccurate assessment of ambulatory and home-based healthcare programs.

The Canadian context in which home-based healthcare services are delivered is characterised by limited resources and escalating healthcare costs. As a result, a financing shift has occurred, whereby care recipients receive a mixture of publicly and privately financed home-based services. Although ensuring that care recipients receive efficient and equitable care is crucial, a limited understanding of the economic outcomes and determinants of privately financed services exists. The purposes of this study were (i) to determine costs incurred by families and the healthcare system; (ii) to assess the determinants of privately financed home-based care; and (iii) to identify whether public and private expenditures are complements or substitutes. Two hundred and fifty-eight short-term clients (<90 days of service utilisation) and 256 continuing care clients (>90 days of utilisation) were recruited from six regions across the province of Ontario, Canada, from November 2003 to August 2004. Participants were interviewed by telephone once a week for 4 weeks and asked to provide information about time and monetary costs of care, activities of daily living (ADL), and chronic conditions. The mean total cost of care for a 4-week period was $7670.67 (in 2004 Canadian dollars), with the overwhelming majority of these costs (75%) associated with private expenditures. Higher age, ADL impairment, being female, and a having four or more chronic conditions predicted higher private expenditures. While private and public expenditures were complementary, private expenditures were somewhat inelastic to changes in public expenditures. A 10% increase in public expenditures was associated with a 6% increase in private expenditures. A greater appreciation of the financing of home-based care is necessary for practitioners, health managers and policy decision-makers to ensure that critical issues such as inequalities in access to care and financial burden on care recipients and families are addressed.

Objectives: Although measuring the utilization of ambulatory and home-based healthcare resources is an essential component of economic analyses, very little methodological attention has been devoted to the development and evaluation of resource costing tools. This study evaluated a newly developed tool, the Ambulatory and Home Care Record (AHCR), which comprehensively evaluates costs incurred by the health system and care recipients and their unpaid caregivers., Methods: The level of agreement between self-reports from 110 cystic fibrosis care recipients and administrative data was assessed for four categories of health services: home-based visits with healthcare professionals, ambulatory visits with healthcare professionals, laboratory and diagnostic tests, and prescription medications., Results: Agreement between care recipients' reports on the AHCR and administrative data ranged from moderate (kappa = 0.41; 95 percent confidence interval, 0.16-0.61) for physician specialist visits to perfect (kappa = 1.0) for physiotherapy visits., Conclusions: By evaluating and standardizing a resource and costing tool, such as the AHCR, economic evaluations may be improved and comparisons of the resource implications for different services and for diverse populations are possible.

As healthcare expenditures continue to rise, financial pressures have resulted in a desire for countries to shift resources away from traditional areas of spending. The consequent devolution and reform have resulted in increased care being provided and received within homes and communities, and in an increased reliance on unpaid caregivers. Recent empirical work indicates that costs incurred by care recipients and unpaid caregivers, including time and productivity costs, often account for significant proportions of total healthcare expenditures. However, many economic evaluations do not include these costs. Moreover, when indirect costs are assessed, the methods of valuation are inconsistent and frequently controversial. This paper provides an overview and critique of existing valuation methods. Current methods such as the human capital method, friction cost method and the Washington Panel approach are presented and critiqued according to criteria such as potential for inaccuracy, ease of application, and ethical and distributional concerns. The review illustrates the depth to which the methods have been theoretically examined, and highlights a paucity of research on costs that accrue to unpaid caregivers and a lack of research on time lost from unpaid labour and leisure. To ensure accurate and concise reporting of all time costs, it is concluded that a broad conceptual approach for time costing should be developed that draws on and then expands upon theoretical work to date.

Background: Health system restructuring coupled with the preference of patients to be cared for at home has altered the setting for the provision of palliative care. Accordingly, there has been emphasis on the provision of home-based palliative care by multidisciplinary teams of health care providers. Evidence suggests that these teams are better able to identify and deal with the needs of patients and their family members. Currently there is a lack of literature examining the predictors of palliative care service use for various professional service categories. Objective: The purpose of this study was to examine the predictors of the propensity and intensity of five main health service categories in the last three months of life for home-based palliative care patients. Design: This was a prospective cohort study. The predictors of service use were assessed using a two-part model, which treats the decision to use a service (propensity) and the amount of service use (intensity) as two distinct processes. Propensity was modeled using a logistic regression and intensity was modeled using ordinary least squares regression. Results: The results indicate that each service category emerged with a different set of predictor variables. Common predictors of health service use across service categories were patient age and functional status. The results suggest that a consistent set of predictors across service categories does not exist, and thus the determinants of access to each service category are unique. Conclusion: These findings will help case managers, health administrators, and policy decision makers better allocate human resources to palliative patients. [ABSTRACT FROM AUTHOR]