Primary data on symptom burden and quality of life among elderly patients at risk of dying during unplanned admissions to an NHS hospital: a cohort study using EuroQoL and the integrated palliative care outcome scale.

BACKGROUND: Older people account heavily for palliative care needs at the population level and are growing in number as the population ages. There is relatively little high-quality data on symptom burden and quality of life, since these data are not routinely collected, and this group are under-recruited in primary research. It is unclear which measurement tools are best suited to capture burdens and experience. METHODS: We recruited a cohort of 221 patients aged 75 + years with poor prognosis who had an unplanned admission via the emergency department in a large urban hospital in England between 2019 and 2020. Risk of dying was assessed using the CriSTAL tool. We collected primary data and combined these with routine health records. Baseline clinical data and patient reported quality of life outcomes were collected on admission and reassessed within the first 72 h of presentation using two established tools: EQ-5D-5 L, EQ-VAS and the Integrated Palliative Outcomes Scale (IPOS). RESULTS: Completion rate was 68% (n = 151) and 33.1% were known to have died during admission or within 6 months post-discharge. The vast majority (84.8%) reported severe difficulties with at least one dimension of EQ-5D-5 L at baseline and improvements in EQ-VAS observed at reassessment in 51.7%. The baseline IPOS revealed 78.2% of patients rating seven or more items as moderate, severe or overwhelming, but a significant reduction (-3.6, p < 0.001) in overall physical symptom severity and prevalence was also apparent. No significant differences were noted in emotional symptoms or changes in communication/practical issues. IPOS total score at follow up was positively associated with age, having comorbidities (Charlson index score > = 1) and negatively associated with baseline IPOS and CriSTAL scores. CONCLUSION: Older people with poor prognosis admitted to hospital have very high symptom burden compared to population norms, though some improvement following assessment was observed on all measures. These data provide valuable descriptive information on quality of life among a priority population in practice and policy and can be used in future research to identify suitable interventions and model their effects.

Examining the influence of health sector coordination on the efficiency of county health systems in Kenya.

BACKGROUND: Health systems are complex, consisting of multiple interacting structures and actors whose effective coordination is paramount to enhancing health system goals. Health sector coordination is a potential source of inefficiency in the health sector. We examined how the coordination of the health sector affects health system efficiency in Kenya. METHODS: We conducted a qualitative cross-sectional study, collecting data at the national level and in two purposely selected counties in Kenya. We collected data using in-depth interviews (n = 37) with national and county-level respondents, and document reviews. We analyzed the data using a thematic approach. RESULTS: The study found that while formal coordination structures exist in the Kenyan health system, duplication, fragmentation, and misalignment of health system functions and actor actions compromise the coordination of the health sector. These challenges were observed in both vertical (coordination within the ministry of health, within the county departments of health, and between the national ministry of health and the county department of health) and horizontal coordination mechanisms (coordination between the ministry of health or the county department of health and non-state partners, and coordination among county governments). These coordination challenges are likely to impact the efficiency of the Kenyan health system by increasing the transaction costs of health system functions. Inadequate coordination also impairs the implementation of health programmes and hence compromises health system performance. CONCLUSION: The efficiency of the Kenyan health system could be enhanced by strengthening the coordination of the Kenyan health sector. This can be achieved by aligning and harmonizing the intergovernmental and health sector-specific coordination mechanisms, strengthening the implementation of the Kenya health sector coordination framework at the county level, and enhancing donor coordination through common funding arrangements and integrating vertical disease programs with the rest of the health system. The ministry of health and county departments of health should also review internal organizational structures to enhance functional and role clarity of organizational units and staff, respectively. Finally, counties should consider initiating health sector coordination mechanisms between counties to reduce the fragmentation of health system functions across neighboring counties.

Expanding health technology assessment towards broader value: Ireland as a case study.

Healthcare innovations often represent important improvements in population welfare, but at what cost, and to whom? Health technology assessment (HTA) is a multidisciplinary process to inform resource allocation. HTA is conventionally anchored on health maximization as the only relevant output of health services. If we accept the proposition that health technologies can generate value outside the healthcare system, resource allocation decisions could be suboptimal from a societal perspective. Incorporating "broader value" in HTA as derived from social values and patient experience could provide a richer evaluative space for informing resource allocation decisions. This article considers how HTA is practiced and what its current context implies for adopting "broader value" to evaluating health technologies. Methodological challenges are highlighted, as is a future research agenda. Ireland serves as an example of a healthcare system that both has an explicit role for HTA and is evolving under a current program of reform to offer universal, single-tier access to public services. There are various ways in which HTA processes could move beyond health, including considering the processes of care delivery and/or expanding the evaluative space to some broader concept of well-being. Methods to facilitate the latter exist, but their adaptation to HTA is still emerging. We recommend a multi-stakeholder working group to develop and advance an international agenda for HTA that captures welfare/benefit beyond health.

Do Mini-Mental State Examination and Montreal Cognitive Assessment predict high-cost health care users? A competing risks analysis in The Irish Longitudinal Study on Ageing.

OBJECTIVES: Policymakers want to better identify in advance the 10% of people who account for approximately 75% of health care costs. We evaluated how well Mini-Mental State Examination (MMSE) and Montreal Cognitive Assessment (MoCA) predicted high costs in Ireland. METHODS/DESIGN: We used five waves from The Irish Longitudinal Study on Ageing, a biennial population-representative survey of people aged 50+ (2010-2018). We used competing risks analysis where our outcome of interest was "high costs" (top 10% at any wave) and the competing outcome was dying or loss to follow-up without first having the high-cost outcome. Our binary predictors of interest were a 'low score' (bottom 10% in the sample) in MMSE (≤25 pts) and MoCA (≤19 pts) at baseline, and we calculated sub-hazard ratios after controlling for sociodemographic, clinical and functional factors. RESULTS: Of 5856 participants, 1427 (24%) had the 'high cost' outcome; 1463 (25%) had a competing outcome; and 2966 (51%) completed eight years of follow-up without either outcome. In multivariable regressions a low MoCA score was associated with high costs (SHR: 1.38 (95% CI: 1.2-1.6) but a low MMSE score was not. Low MoCA score at baseline had a higher true positive rate (40%) than did low MMSE score (35%). The scores had similar association with exit from the study. CONCLUSIONS: MoCA had superior predictive accuracy for high costs than MMSE but the two scores identify somewhat different types of high-cost user. Combining the approaches may improve efforts to identify in advance high-cost users.

Predicting mortality in The Irish Longitudinal Study on Ageing (TILDA): development of a four-year index and comparison with international measures.

OBJECTIVES: We aimed to replicate existing international (US and UK) mortality indices using Irish data. We developed and validated a four-year mortality index for adults aged 50 + in Ireland and compared performance with these international indices. We then extended this model by including additional predictors (self-report and healthcare utilization) and compared its performance to our replication model. METHODS: Eight thousand one hundred seventy-four participants in The Irish Longitudinal Study on Ageing were split for development (n = 4,121) and validation (n = 4,053). Six baseline predictor categories were examined (67 variables total): demographics; cardiovascular-related illness; non-cardiovascular illness; health and lifestyle variables; functional variables; self-report (wellbeing and social connectedness) and healthcare utilization. We identified variables independently associated with four-year mortality in the development cohort and attached these variables a weight according to strength of association. We summed the weights to calculate a single index score for each participant and evaluated predicted accuracy in the validation cohort. RESULTS: Our final 14-predictor (extended) model assigned risk points for: male (1pt); age (65-69: 2pts; 70-74: 4 pts; 75-79: 4pts; 80-84: 6pts; 85 + : 7pts); heart attack (1pt); cancer (3pts); smoked past age 30 (2pts); difficulty walking 100 m (2pts); difficulty using the toilet (3pts); difficulty lifting 10lbs (1pts); poor self-reported health (1pt); and hospital admission in previous year (1pt). Index discrimination was strong (ROC area = 0.78). DISCUSSION: Our index is predictive of four-year mortality in community-dwelling older Irish adults. Comparisons with the international indices show that our 12-predictor (replication) model performed well and suggests that generalisability is high. Our 14-predictor (extended) model showed modest improvements compared to the 12-predictor model.

Management of human resources for health: implications for health systems efficiency in Kenya.

BACKGROUND: Human resources for health consume a substantial share of healthcare resources and determine the efficiency and overall performance of health systems. Under Kenya's devolved governance, human resources for health are managed by county governments. The aim of this study was to examine how the management of human resources for health influences the efficiency of county health systems in Kenya. METHODS: We conducted a case study using a mixed methods approach in two purposively selected counties in Kenya. We collected data through in-depth interviews (n = 46) with national and county level HRH stakeholders, and document and secondary data reviews. We analyzed qualitative data using a thematic approach, and quantitative data using descriptive analysis. RESULTS: Human resources for health in the selected counties was inadequately financed and there were an insufficient number of health workers, which compromised the input mix of the health system. The scarcity of medical specialists led to inappropriate task shifting where nonspecialized staff took on the roles of specialists with potential undesired impacts on quality of care and health outcomes. The maldistribution of staff in favor of higher-level facilities led to unnecessary referrals to higher level (referral) hospitals and compromised quality of primary healthcare. Delayed salaries, non-harmonized contractual terms and incentives reduced the motivation of health workers. All of these effects are likely to have negative effects on health system efficiency. CONCLUSIONS: Human resources for health management in counties in Kenya could be reformed with likely positive implications for county health system efficiency by increasing the level of funding, resolving funding flow challenges to address the delay of salaries, addressing skill mix challenges, prioritizing the allocation of health workers to lower-level facilities, harmonizing the contractual terms and incentives of health workers, and strengthening monitoring and supervision.

Level and determinants of county health system technical efficiency in Kenya: two stage data envelopment analysis.

BACKGROUND: Improving health system efficiency is a key strategy to increase health system performance and accelerate progress towards Universal Health Coverage. In 2013, Kenya transitioned into a devolved system of government granting county governments autonomy over budgets and priorities. We assessed the level and determinants of technical efficiency of the 47 county health systems in Kenya. METHODS: We carried out a two-stage data envelopment analysis (DEA) using Simar and Wilson's double bootstrap method using data from all the 47 counties in Kenya. In the first stage, we derived the bootstrapped DEA scores using an output orientation. We used three input variables (Public county health expenditure, Private county health expenditure, number of healthcare facilities), and one outcome variable (Disability Adjusted Life Years) using 2018 data. In the second stage, the bias corrected technical inefficiency scores were regressed against 14 exogenous factors using a bootstrapped truncated regression. RESULTS: The mean bias-corrected technical efficiency score of the 47 counties was 69.72% (95% CI 66.41-73.01%), indicating that on average, county health systems could increase their outputs by 30.28% at the same level of inputs. County technical efficiency scores ranged from 42.69% (95% CI 38.11-45.26%) to 91.99% (95% CI 83.78-98.95%). Higher HIV prevalence was associated with greater technical inefficiency of county health systems, while higher population density, county absorption of development budgets, and quality of care provided by healthcare facilities were associated with lower county health system inefficiency. CONCLUSIONS: The findings from this analysis highlight the need for county health departments to consider ways to improve the efficiency of county health systems. Approaches could include prioritizing resources to interventions that will reduce high chronic disease burden, filling structural quality gaps, implementing interventions to improve process quality, identifying the challenges to absorption rates and reforming public finance management systems to enhance their efficiency.

Mortality risk associated with combinations of loneliness and social isolation. Findings from The Irish Longitudinal Study on Ageing (TILDA).

BACKGROUND: Social distancing and similar measures in response to the coronavirus disease 2019 pandemic have greatly increased loneliness and social isolation among older adults. Understanding the association between loneliness and mortality is therefore critically important. We examined whether combinations of loneliness and social isolation, using a metric named social asymmetry, was associated with increased mortality risk. METHODS: The sample was derived from participants in The Irish Longitudinal Study on Ageing, a nationally representative sample of community-dwelling older adults aged ≥50. Survey data were linked to official death registration records. Cox proportional hazards regressions and competing risk survival analyses were used to examine the association between social asymmetry and all-cause and cause-specific mortality. RESULTS: Of four social asymmetry groups, concordant low lonely (low loneliness, low isolation) included 35.5% of participants; 26.4% were concordant high lonely (high loneliness, high isolation); 19.2% were discordant robust (low loneliness, high isolation) and 18.9% discordant susceptible (high loneliness, low isolation). The concordant high lonely (hazard ratio [HR] = 1.43, 95% confidence interval [CI]: 1.09-1.87) and discordant robust (HR = 1.37, 95% CI: 1.04-1.81) groups had an increased mortality risk compared to those in the concordant low lonely group. The concordant high lonely group had an increased risk of mortality due to diseases of the circulatory system (sub-distribution hazard ratio = 1.52, 95% CI: 1.03-2.25). CONCLUSION: We found that social asymmetry predicted mortality over a 7-year follow-up period. Our results confirm that a mismatch between subjective loneliness and objective social isolation, as well as the combination of loneliness and social isolation, were associated with an increased all-cause mortality risk.

Discrete choice experiment for eliciting preference for health services for patients with ALS and their informal caregivers.

BACKGROUND: Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative condition with a mean life expectancy of 3 years from first symptom. Understanding the factors that are important to both patients and their caregivers has the potential to enhance service delivery and engagement, and improve efficiency. The Discrete Choice Experiment (DCE) is a stated preferences method which asks service users to make trade-offs for various attributes of health services. This method is used to quantify preferences and shows the relative importance of the attributes in the experiment, to the service user. METHODS: A DCE with nine choice sets was developed to measure the preferences for health services of ALS patients and their caregivers and the relative importance of various aspects of care, such as timing of care, availability of services, and decision making. The DCE was presented to patients with ALS, and their caregivers, recruited from a national multidisciplinary clinic. A random effects probit model was applied to estimate the impact of each attribute on a participant's choice. RESULTS: Patients demonstrated the strongest preferences about timing of receiving information about ALS. A strong preference was also placed on seeing the hospice care team later rather than early on in the illness. Patients also indicated their willingness to consider the use of communication devices. Grouping by stage of disease, patients who were in earlier stages of disease showed a strong preference for receipt of extensive information about ALS at the time of diagnosis. Caregivers showed a strong preference for engagement with healthcare professionals, an attribute that was not prioritised by patients. CONCLUSIONS: The DCE method can be useful in uncovering priorities of patients and caregivers with ALS. Patients and caregivers have different priorities relating to health services and the provision of care in ALS, and patient preferences differ based on the stage and duration of their illness. Multidisciplinary teams must calibrate the delivery of care in the context of the differing expectations, needs and priorities of the patient/caregiver dyad.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Preoperative exercise to improve fitness in patients undergoing complex surgery for cancer of the lung or oesophagus (PRE-HIIT): protocol for a randomized controlled trial.

BACKGROUND: Patients with cancer of the lung or oesophagus, undergoing curative treatment, usually require a thoracotomy and a complex oncological resection. These surgeries carry a risk of major morbidity and mortality, and risk assessment, preoperative optimisation, and enhanced recovery after surgery (ERAS) pathways are modern approaches to optimise outcomes. Pre-operative fitness is an established predictor of postoperative outcome, accordingly, targeting pre-operative fitness through exercise prehabilitation has logical appeal. Exercise prehabilitation is challenging to implement however due to the short opportunity for intervention between diagnosis and surgery. Therefore, individually prescribed, intensive exercise training protocols which convey clinically meaningful improvements in cardiopulmonary fitness over a short period need to be investigated. This project will examine the influence of exercise prehabilitation on physiological outcomes and postoperative recovery and, through evaluation of health economics, the impact of the programme on hospital costs. METHODS: The PRE-HIIT Randomised Controlled Trial (RCT) will compare a 2-week high intensity interval training (HIIT) programme to standard preoperative care in a cohort of thoracic and oesophageal patients who are > 2-weeks pre-surgery. A total of 78 participants will be recruited (39 per study arm). The primary outcome is cardiorespiratory fitness. Secondary outcomes include, measures of pulmonary and physical and quality of life. Outcomes will be measured at baseline (T0), and post-intervention (T1). Post-operative morbidity will also be captured. The impact of PRE-HIIT on well-being will be examined qualitatively with focus groups/interviews post-intervention (T1). Participant's experience of preparation for surgery on the PRE-HIIT trial will also be explored. The healthcare costs associated with the PRE-HITT programme, in particular acute hospital costs, will also be examined. DISCUSSION: The overall aim of this RCT is to examine the effect of tailored, individually prescribed high intensity interval training aerobic exercise on pre-operative fitness and postoperative recovery for patients undergoing complex surgical resections, and the impact on use of health services. TRIAL REGISTRATION: The study is registered with Clinical Trials.Gov (NCT03978325). Registered on 7th June 2019.

Rehabilitation strategies following oesophagogastric and Hepatopancreaticobiliary cancer (ReStOre II): a protocol for a randomized controlled trial.

BACKGROUND: Curative treatment for upper gastrointestinal (UGI) and hepatopancreaticobiliary (HPB) cancers, involves complex surgical resection often in combination with neoadjuvant/adjuvant chemo/chemoradiotherapy. With advancing survival rates, there is an emergent cohort of UGI and HPB cancer survivors with physical and nutritional deficits, resultant from both the cancer and its treatments. Therefore, rehabilitation to counteract these impairments is required to maximise health related quality of life (HRQOL) in survivorship. The initial feasibility of a multidisciplinary rehabilitation programme for UGI survivors was established in the Rehabilitation Strategies following Oesophago-gastric Cancer (ReStOre) feasibility study and pilot randomised controlled trial (RCT). ReStOre II will now further investigate the efficacy of that programme as it applies to a wider cohort of UGI and HPB cancer survivors, namely survivors of cancer of the oesophagus, stomach, pancreas, and liver. METHODS: The ReStOre II RCT will compare a 12-week multidisciplinary rehabilitation programme of supervised and self-managed exercise, dietary counselling, and education to standard survivorship care in a cohort of UGI and HPB cancer survivors who are > 3-months post-oesophagectomy/ gastrectomy/ pancreaticoduodenectomy, or major liver resection. One hundred twenty participants (60 per study arm) will be recruited to establish a mean increase in the primary outcome (cardiorespiratory fitness) of 3.5 ml/min/kg with 90% power, 5% significance allowing for 20% drop out. Study outcomes of physical function, body composition, nutritional status, HRQOL, and fatigue will be measured at baseline (T0), post-intervention (T1), and 3-months follow-up (T2). At 1-year follow-up (T3), HRQOL alone will be measured. The impact of ReStOre II on well-being will be examined qualitatively with focus groups/interviews (T1, T2). Bio-samples will be collected from T0-T2 to establish a national UGI and HPB cancer survivorship biobank. The cost effectiveness of ReStOre II will also be analysed. DISCUSSION: This RCT will investigate the efficacy of a 12-week multidisciplinary rehabilitation programme for survivors of UGI and HPB cancer compared to standard survivorship care. If effective, ReStOre II will provide an exemplar model of rehabilitation for UGI and HPB cancer survivors. TRIAL REGISTRATION: The study is registered with ClinicalTrials.gov, registration number: NCT03958019, date registered: 21/05/2019.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

BACKGROUND: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. AIM: 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. DESIGN: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. SETTING: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). PARTICIPANTS: Informal carers of decedents who had received palliative care participated in the study. RESULTS: 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 (>80 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. CONCLUSION: 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.

End-of-life experience for older adults in Ireland: results from the Irish longitudinal study on ageing (TILDA).

BACKGROUND: End-of-life experience is a subject of significant policy interest. National longitudinal studies offer valuable opportunities to examine individual-level experiences. Ireland is an international leader in palliative and end-of-life care rankings. We aimed to describe the prevalence of modifiable problems (pain, falls, depression) in Ireland, and to evaluate associations with place of death, healthcare utilisation, and formal and informal costs in the last year of life. METHODS: The Irish Longitudinal Study on Ageing (TILDA) is a nationally representative sample of over-50-year-olds, recruited in Wave 1 (2009-2010) and participating in biannual assessment. In the event of a participant's death, TILDA approaches a close relative or friend to complete a voluntary interview on end-of-life experience. We evaluated associations using multinomial logistic regression for place of death, ordinary least squares for utilisation, and generalised linear models for costs. We identified 14 independent variables for regressions from a rich set of potential predictors. Of 516 confirmed deaths between Waves 1 and 3, the analytic sample contained 375 (73%) decedents for whom proxies completed an interview. RESULTS: There was high prevalence of modifiable problems pain (50%), depression (45%) and falls (41%). Those with a cancer diagnosis were more likely to die at home (relative risk ratio: 2.5; 95% CI: 1.3-4.8) or in an inpatient hospice (10.2; 2.7-39.2) than those without. Place of death and patterns of health care use were determined not only by clinical need, but other factors including age and household structure. Unpaid care accounted for 37% of all care received but access to this care, as well as place of death, may be adversely affected by living alone or in a rural area. Deficits in unpaid care are not balanced by higher formal care use. CONCLUSIONS: Despite Ireland's well-established palliative care services, clinical need is not the sole determinant of end-of-life experience. Cancer diagnosis and access to family supports were additional key determinants. Future policy reforms should revisit persistent inequities by diagnosis, which may be mitigated through comprehensive geriatric assessment in hospitals. Further consideration of policies to support unpaid carers is also warranted.

Patients with epilepsy care experiences: Comparison between services with and without an epilepsy specialist nurse.

The aim of this study was to determine whether there were differences in experiences of care, satisfaction with care and quality of life between those who were in receipt of care from a service with an epilepsy specialist nurse (ESN) and those who were receiving care from a service that did not include an ESN. A comparative design was used, which involved the completion of a confidential, self-completed survey. The survey was administered to a nonprobability convenience sample of patients with epilepsy who were attending services with an ESN (n = 244) and services where the treatment team did not include an ESN (n = 261) from each of the four health areas in Ireland. This study found that, in comparison to people with epilepsy (PWE) who attended a service without an ESN, PWE who attended a service with an ESN reported receiving greater amount of information, were more involved in their care, perceived care to be better coordinated, and had greater confidence in the information provided and greater comfort in discussing issues with an ESN. They also reported higher rates of satisfaction with the emotional and practical support offered. Thus, it may be concluded that models of care involving the input of ESNs enhance the quality of epilepsy care and care processes. The findings also emphasize the need to have an ESN as part of the multidisciplinary team.

Healthcare use, costs and quality of life in patients with end-stage kidney disease receiving conservative management: results from a multi-centre observational study (PACKS).

BACKGROUND: Previous research has explored the cost of providing renal replacement therapies in patients with end-stage kidney disease and their quality of life. This is the first study to examine the healthcare costs of patients receiving conservative care without dialysis for end-stage kidney disease. This alternative to dialysis is an option for patients who prefer a supportive and palliative care approach. AIM: Descriptive cost and quality of life analyses alongside a UK-based multi-centre observational study in patients receiving conservative management for end-stage kidney disease. DESIGN: Health service use was recorded up to 12 months after making the decision to receive conservative management. Mean costs were calculated for each 3-month time period. The annual cost was calculated in two ways: by using only patients with complete cost data and by using all available data weighted by the number of patients at each time point. SETTING: In total, 42 patients who opted for conservative management over dialysis were recruited. RESULTS: Mean costs were £1622 (0-3 months), £1008 (3-6 months), £554 (6-9 months) and £2626 (9-12 months). Mean annual cost based on complete data ( n = 8) was £5511, and the weighted mean annual cost was £5620. CONCLUSION: The importance of this study is twofold. First, it provides substantive new information for health and social care planning of conservative management by demonstrating where demand exists for services, in both the United Kingdom and other countries with a comparable health service structure. Second, methodologically, it indicates that it is feasible to collect service use data directly from this patient population.

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA.

Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients' self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.

Costs of formal and informal care in the last year of life for patients in receipt of specialist palliative care.

BACKGROUND: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. AIM: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. DESIGN: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost. Informal care is valued at the replacement cost of care. SETTING/PARTICIPANTS: Data on utilisation were collected during 215 'after death' telephone interviews with a person centrally involved in the care in the last year of life of decedents who received specialist palliative care in three areas in Ireland with varying levels of specialist palliative care. RESULTS: Mean total formal and informal costs in the last year of life do not vary significantly across the three areas. The components of formal costs, however, do vary across areas, particularly for hospital and specialist palliative care in the last 3 months of life. CONCLUSION: Costs in the last year of life for patients in receipt of specialist palliative care are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist palliative care inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in palliative care.

Clinician views of patient decisional conflict when deciding between dialysis and conservative management: Qualitative findings from the PAlliative Care in chronic Kidney diSease (PACKS) study.

BACKGROUND: Only a paucity of studies have addressed clinician perspectives on patient decisional conflict, in making complex decisions between dialysis and conservative management (renal supportive and palliative care). AIM: To explore clinician views on decisional conflict in patients with end-stage kidney disease. DESIGN: Interpretive, qualitative study. SETTING AND PARTICIPANTS: As part of the wider National Institute for Health Research, PAlliative Care in chronic Kidney diSease study, semi-structured interviews were conducted with clinicians (nephrologists n = 12; 7 female and clinical nurse specialists n = 15; 15 female) across 10 renal centres in the United Kingdom. Interviews took place between April 2015 and October 2016 and a thematic analysis of the interview data was undertaken. RESULTS: Three major themes with associated subthemes were identified. The first, 'Frequent changing of mind regarding treatment options', revealed how patients frequently altered their treatment decisions, some refusing to make a decision until deterioration occurred. The second theme, 'Obligatory beneficence', included clinicians helping patients to make informed decisions where outcomes were uncertain. In weighing up risks and benefits, and the impact on patients, clinicians sometimes withheld information they thought might cause concern. Finally, 'Intricacy of the decision' uncovered clinicians' views on the momentous and brave decision to be made. They also acknowledged the risks associated with this complex decision in giving prognostic information which might be inaccurate. LIMITATIONS: Relies on interpretative description which uncovers constructed truths and does not include interviews with patients. CONCLUSION: Findings identify decisional conflict in patient decision-making and a tension between the prerequisite for shared decision-making and current clinical practice. Clinicians also face conflict when discussing treatment options due to uncertainty in equipoise between treatments and how much information should be shared. The findings are likely to resonate across countries outside the United Kingdom.