The Ambulatory and Home Care Record: A Methodological Framework for Economic Analyses in End-of-Life Care

Provision of end-of-life care in North America takes place across a multitude of settings, including hospitals, ambulatory clinics and home settings. As a result, family caregiving is characteristically a major component of care within the home. Accordingly, economic evaluation of the end-of-life care environment must devote equal consideration to resources provided by the public health system as well as privately financed resources, such as time and money provided by family caregivers. This paper addresses the methods used to measure end-of-life care costs. The existing empirical literature will be reviewed in order to assess care costs with areas neglected in this body of literature to be identified. The Ambulatory and Home Care Record, a framework and tool for comprehensively measuring costs related to the provision and receipt of end-of-life care across all health care settings, will be described and proposed. Finally, areas for future work will be identified, along with their potential contribution to this body of knowledge

Examination of psychological risk factors for chronic pain following cardiac surgery: protocol for a prospective observational study

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. INTRODUCTION: Approximately 400 000 Americans and 36 000 Canadians undergo cardiac surgery annually, and up to 56% will develop chronic postsurgical pain (CPSP). The primary aim of this study is to explore the association of pain-related beliefs and gender-based pain expectations on the development of CPSP. Secondary goals are to: (A) explore risk factors for poor functional status and patient-level cost of illness from a societal perspective up to 12 months following cardiac surgery; and (B) determine the impact of CPSP on quality-adjusted life years (QALYs) borne by cardiac surgery, in addition to the incremental cost for one additional QALY gained, among those who develop CPSP compared with those who do not. METHODS AND ANALYSES: In this prospective cohort study, 1250 adults undergoing cardiac surgery, including coronary artery bypass grafting and open-heart procedures, will be recruited over a 3-year period. Putative risk factors for CPSP will be captured prior to surgery, at postoperative day 3 (in hospital) and day 30 (at home). Outcome data will be collected via telephone interview at 6-month and 12-month follow-up. We will employ generalised estimating equations to model the primary (CPSP) and secondary outcomes (function and cost) while adjusting for prespecified model covariates. QALYs will be estimated by converting data from the Short Form-12 (version 2) to a utility score. ETHICS AND DISSEMINATION: This protocol has been approved by the responsible bodies at each of the hospital sites, and study enrolment began May 2015. We will disseminate our results through CardiacPain.Net, a web-based knowledge dissemination platform, presentation at international conferences and publications in scientific journals. TRIAL REGISTRATION NUMBER: NCT01842568

Measuring decisional conflict in substitute decision makers, mothers' decisions about initiating gastrostomy tube feeding in children

grantor: University of TorontoThe Decisional Conflict Scale (DCS) (O'Connor, 1995) quantifies the construct of decisional conflict. Its subscales assess 3 postulated dimensions of decisional conflict (uncertainty, factors contributing to uncertainty, effective decision making). Although it has been evaluated with individuals making their own treatment decisions, its appropriateness with substitute decision makers is unknown. This study used a hybrid quantitative/qualitative data collection strategy to explore this issue, in the context of mothers deciding about the initiation of gastrostomy tube (G-tube) feeding for their children. At the time of their children's G-tube insertion, 53 mothers completed all 3 DCS subscales, and provided verbal reports about their uncertainty and its contributory factors. Approximately 7 weeks later, they completed the subscale about effective decision making, and verbally described the effectiveness of their decision making. Relatively high, moderate, and low sub-groups were identified, using the score distributions for overall uncertainty and each uncertainty factor; then the associated verbal reports were examined for across-sub-group differences. There were across sub-group differences in verbal reports of the "child", "mother", and "health care professional" elements that contributed to (F = 9.34, p = 0.0093; F = 25.70, p < 0.0001; F = 17.25, p = 0.0002) and mitigated (F = 7.15, p = 0.0101; F = 15.50, p = 0.0003; F = 7.92, p = 0.0070) uncertainty. There also were across-sub-group differences in verbal reports about information (X2 = 6.990, p = 0.0082). perceived pressure (X2 = 8.377, p = 0.0038), social support (X2 = 5.573, p = 0.0182), and perceived gains and losses (X2 = 3.85, p = 0.0499; X2 = 5.76, p = 0.0164). There was no across-time difference in the distribution of effective decision making scores. This is the first study applying the DCS to a substitute decision making context, using an innovative analytical strategy to map qualitative onto quantitative data. The results indicate consistency between mothers' DCS scores and their verbal reports, which implies that this hybrid approach could be clinically useful for assessing mothers' decisional conflict. Furthermore, in this particular clinical context the results imply that interventions like the systematic provision of information to foster informed consent may be of some urgency. Finally, the hybrid approach could be useful in future exploratory research investigating decisional conflict in other substitute decision making contexts.Ph.D

Where Do Cancer Patients in Receipt of Home-Based Palliative Care Prefer to Die and What Are the Determinants of a Preference for a Home Death?

Understanding the preferred place of death may assist to organize and deliver palliative health care services. The study aims to assess preference for place of death among cancer patients in receipt of home-based palliative care, and to determine the variables that affect their preference for a home death. A prospective cohort design was carried out from July 2010 to August 2012. Over the course of their palliative care trajectory, a total of 303 family caregivers of cancer patients were interviewed. Multivariate regression analysis was employed to assess the determinants of a preferred home death. The majority (65%) of patients had a preference of home death. The intensity of home-based physician visits and home-based personal support worker (PSW) care promotes a preference for a home death. Married patients, patients receiving post-graduate education and patients with higher Palliative Performance Scale (PPS) scores were more likely to have a preference of home death. Patients reduced the likelihood of preferring a home death when their family caregiver had high burden. This study suggests that the majority of cancer patients have a preference of home death. Health mangers and policy makers have the potential to develop policies that facilitate those preferences

Socioeconomic Differences in and Predictors of Home-Based Palliative Care Health Service Use in Ontario, Canada

The use of health services may vary across people with different socioeconomic statuses, and may be determined by many factors. The purposes of this study were (i) to examine the socioeconomic differences in the propensity and intensity of use for three main home-based health services, that is, home-based palliative care physician visits, nurse visits and personal support worker (PSW) hours; and (ii) to explore the determinants of the use of home-based palliative care services. A prospective cohort study was employed. A total of 181 caregivers were interviewed biweekly over the course of the palliative care trajectory, yielding a total of 994 interviews. The propensity and intensity of health service use were examined using logistic regression and negative binomial regression, respectively. The results demonstrated that both the propensity and intensity of home-based nurse and PSW visits fell with socioeconomic status. The use of home-based palliative care services was not concentrated in high socioeconomic status groups. The common predictors of health service use in the three service categories were patient age, the Palliative Performance Scale (PPS) score and place of death. These findings may assist health service planners in the appropriate allocation of resources and service packages to meet the complex needs of palliative care populations

Socioeconomic Differences in and Predictors of Home-Based Palliative Care Health Service Use in Ontario, Canada

The use of health services may vary across people with different socioeconomic statuses, and may be determined by many factors. The purposes of this study were (i) to examine the socioeconomic differences in the propensity and intensity of use for three main home-based health services, that is, home-based palliative care physician visits, nurse visits and personal support worker (PSW) hours; and (ii) to explore the determinants of the use of home-based palliative care services. A prospective cohort study was employed. A total of 181 caregivers were interviewed biweekly over the course of the palliative care trajectory, yielding a total of 994 interviews. The propensity and intensity of health service use were examined using logistic regression and negative binomial regression, respectively. The results demonstrated that both the propensity and intensity of home-based nurse and PSW visits fell with socioeconomic status. The use of home-based palliative care services was not concentrated in high socioeconomic status groups. The common predictors of health service use in the three service categories were patient age, the Palliative Performance Scale (PPS) score and place of death. These findings may assist health service planners in the appropriate allocation of resources and service packages to meet the complex needs of palliative care populations

Where Do Cancer Patients in Receipt of Home-Based Palliative Care Prefer to Die and What Are the Determinants of a Preference for a Home Death?

Understanding the preferred place of death may assist to organize and deliver palliative health care services. The study aims to assess preference for place of death among cancer patients in receipt of home-based palliative care, and to determine the variables that affect their preference for a home death. A prospective cohort design was carried out from July 2010 to August 2012. Over the course of their palliative care trajectory, a total of 303 family caregivers of cancer patients were interviewed. Multivariate regression analysis was employed to assess the determinants of a preferred home death. The majority (65%) of patients had a preference of home death. The intensity of home-based physician visits and home-based personal support worker (PSW) care promotes a preference for a home death. Married patients, patients receiving post-graduate education and patients with higher Palliative Performance Scale (PPS) scores were more likely to have a preference of home death. Patients reduced the likelihood of preferring a home death when their family caregiver had high burden. This study suggests that the majority of cancer patients have a preference of home death. Health mangers and policy makers have the potential to develop policies that facilitate those preferences