ORCID Profile
0000-0002-0565-9571
Current Organisation
Trinity College Dublin
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Publisher: SAGE Publications
Date: 03-02-2020
Abstract: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs. Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Informal carers of decedents who had received palliative care participated in the study. A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( F = 25.79/14.27, p 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for 80% of total care costs community care 6%–16%, palliative care 1%–15% 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age ( years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
Publisher: Elsevier BV
Date: 08-2022
DOI: 10.1016/J.JPAINSYMMAN.2022.04.180
Abstract: There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences. A cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences. Of the 77 patients were interviewed, 51 participated in the Discrete Choice Experiment component of the interview (response rate = 66%). Participants prioritized support that minimized unpaid caregiver burden (P < 0.001). They also preferred ease of access to services including out-of-hours access (P < 0.001) and free care at home (P < 0.001). Quality of life was prioritized over quantity of life (<0.001). People living with a life-limiting illness value care that focuses on quality of life, ensures barrier-free access to services and provides sufficient support for relatives. In the context of limited resources and growing demand for care, this study provides evidence about the service elements palliative care delivery models should prioritize and evaluate.
Publisher: Springer Science and Business Media LLC
Date: 23-11-2017
Publisher: Springer Science and Business Media LLC
Date: 03-11-2020
DOI: 10.1186/S12916-020-01768-7
Abstract: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%) average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
No related grants have been discovered for Bridget M Johnston.