Integrated palliative homecare in advanced dementia: reduced healthcare utilisation and costs.

OBJECTIVES: To determine the economic benefit of an integrated home-based palliative care programme for advanced dementia (Programme Dignity), evaluation is required. This study aimed to estimate Programme Dignity's average monthly cost from a provider's perspective; and compare healthcare utilisation and costs of programme patients with controls, accounting for enrolment duration. METHODS: This was a retrospective cohort study. Home-dwelling patients with advanced dementia (stage 7 on the functional assessment staging in Alzheimer's disease) with a history of pneumonia, albumin <35 g/L or tube-feeding and known to be deceased were analysed (Programme Dignity=184, controls=139). One-year programme operational costs were apportioned on a per patient-month basis. Cumulative healthcare utilisation and costs were examined at 1, 3 and 6 months look-back from death. Between-group comparisons used Poisson, zero-inflated Poisson regressions and generalised linear models. RESULTS: The average monthly programme cost was SGD$1311 (SGD-Pounds exchange rate: 0.481) per patient. Fully enrolled programme patients were less likely to visit the emergency department (incidence rate ratios (IRRs): 1 month=0.56; 3 months=0.19; 6 months=0.10; all p<0.001), be admitted to hospital (IRRs: 1 month=0.60; 3 months=0.19; 6 months=0.15; all p<0.001), had a lower cumulative length of stay (IRRs: 1 month=0.78; 3 months=0.49; 6 months=0.24; all p<0.001) and incurred lesser healthcare utilisation costs (ß-coefficients: 1 month=0.70; 3 months=0.40; 6 months=0.43; all p<0.01) at all time-points examined. CONCLUSION: Programme Dignity for advanced dementia reduces healthcare utilisation and costs. If scalable, it may benefit more patients wishing to remain at home at the end-of-life, allowing for a potentially sustainable care model to cope with rapid population ageing. It contributes to the evidence base of advanced dementia palliative care and informs healthcare policy making. Future studies should estimate informal caregiving costs for comprehensive economic evaluation.

Predictors of the final place of care of patients with advanced cancer receiving integrated home-based palliative care: a retrospective cohort study.

BACKGROUND: Meeting patients' preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients' preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care. METHODS: This retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with < 2 weeks' enrollment in the home-based service, or ≤ 1-week duration at the final place of care, were excluded. The following information were retrieved from patients' electronic medical records: patients' and their families' characteristics, care preferences, healthcare utilization, functional status (measured by the Palliative Performance Scale (PPSv2)), and symptom severity (measured by the Edmonton Symptom Assessment System). Multivariate logistic regression was employed to identify independent predictors of the final place of care. Kappa value was calculated to estimate the concordance between actual and preferred place of death. RESULTS: A total of 359 patients were included in the study. Home was the most common (58.2%) final place of care, followed by inpatient hospice (23.7%), and hospital (16.7%). Patients who were single or divorced (OR: 5.5; 95% CI: 1.1-27.8), or had older family caregivers (OR: 3.1; 95% CI: 1.1-8.8), PPSv2 score ≥ 40% (OR: 9.1; 95% CI: 3.3-24.8), pain score ≥ 2 (OR: 3.6; 95% CI: 1.3-9.8), and non-home death preference (OR: 23.8; 95% CI: 5.4-105.1), were more likely to receive terminal care in the inpatient hospice. Patients who were male (OR: 3.2; 95% CI: 1.0-9.9), or had PPSv2 score ≥ 40% (OR: 8.6; 95% CI: 2.9-26.0), pain score ≥ 2 (OR: 3.5; 95% CI: 1.2-10.3), and non-home death preference (OR: 9.8; 95% CI: 2.1-46.3), were more likely to be hospitalized. Goal-concordance was fair (72.6%, kappa = 0.39). CONCLUSIONS: Higher functional status, greater pain intensity, and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in the inpatient hospice, while males were more likely to be hospitalized. Despite being part of an integrated care model, goal-concordance was sub-optimal. More comprehensive community networks and resources, enhanced pain control, and personalized care planning discussions, are recommended to better meet patients' preferences for their final place of care. Future research could similarly examine factors associated with the final place of care in patients with advanced non-cancer conditions.

Prognostication in Home-Dwelling Patients with Advanced Dementia: The Palliative Support DEMentia Model (PalS-DEM).

OBJECTIVE: Difficulties with prognostication prevent more patients with advanced dementia from receiving timely palliative support. The aim of this study is to develop and validate a prognostic model for 6-month and 1-year mortality in home-dwelling patients with advanced dementia. DESIGN: Prospective cohort study. SETTING AND PARTICIPANTS: The data set of 555 home-dwelling patients with dementia at Functional Assessment Staging Test stage 7 was split into derivation (n = 275) and validation (n = 280) cohorts. METHODS: Cox proportional hazards regression modeled survival in the derivation cohort using prognostic variables identified in univariate analysis. The model was validated internally and using 10-fold cross-validation. Area under the receiver operating characteristic curve measured the accuracy of the final model. RESULTS: Four hundred nineteen (75.5%) patients died with a median follow-up of 47 days [interquartile range (IQR) 161]. Prognostic variables in the multivariate model included serum albumin level, dementia etiology, number of homecare admission criteria fulfilled, presence of moderate to severe chronic kidney disease, peripheral vascular disease, quality of life in late-stage dementia scores, housing type, and the Australian National Sub-Acute and Non-Acute Patient palliative care phase. The model was refined into a parsimonious 6-variable model [Palliative Support DEMentia Model (PalS-DEM)] consisting of age, dementia etiology, Functional Assessment Staging Test stage, Charlson Comorbidity Index scores, Australian National Sub-Acute and Non-Acute Patient palliative care phase, and 30-day readmission frequency for the prediction of 1-year mortality. The area under the receiver operating characteristic curve was 0.65 (95% confidence interval 0.59-0.70). Risk scores categorized patients into 3 prognostic groups, with a median survival of 175 days (IQR 365), 104 days (IQR 246), and 19 days (IQR 88) for the low-risk (0‒1 points), moderate-risk (2‒4), and high-risk (≥5) groups, respectively. CONCLUSIONS AND IMPLICATIONS: The PalS-DEM identifies patients at high risk of death in the next 1 year. The model produced consistent survival results across the derivation, validation, and cross-validation cohorts and will help healthcare providers identify patients with advanced dementia earlier for palliative care.

Advanced dementia: an integrated homecare programme.

OBJECTIVES: We established an integrated palliative homecare programme for advanced dementia. This study explores patients' symptoms and quality-of-life and their association with enteral feeding, evaluates the impact of the programme on these parameters and examines familial caregiver burden. METHODS: This is a prospective cohort study. Patients at Functional Assessment Stage 7, with an albumin level <35 g/L, pneumonia or enteral feeding were recruited. At baseline and regular intervals, the multidisciplinary homecare team used the Pain Assessment in Advanced Dementia, Mini Nutritional Assessment and Neuropsychiatric Inventory Questionnaire (NPI-Q) to identify patients' symptoms, and the Quality of Life in Late-Stage Dementia (QUALID) tool to assess quality-of-life as primary outcomes, stratified by feeding status. The Zarit Burden Interview (ZBI) investigated caregiver burden, stratified by living arrangement and availability of stay-in help. Mann-Whitney U and χ2 tests compared continuous and categorical variables respectively between groups while Wilcoxon signed-rank test compared assessment scores at baseline and on review. RESULTS: At baseline, 49.2% of the 254 patients had pain, 92.5% were malnourished and 85.0% experienced neuropsychiatric challenges. Patients on enteral feeding had lower NPI-Q score (median=3; IQR 1-6) than orally fed patients ((median=4; IQR 2-7), p=0.004) and higher QUALID score (median=25; IQR 21-30 vs median=21; IQR 17-25 for orally fed patients), p<0.0001, indicating a better quality-of-life for orally fed patients. Both symptoms and quality-of-life improved significantly for the 53 patients reviewed at the fifth month. Median ZBI score for caregivers was 26 (IQR 15-36). Having stay-in help reduced it from 39.5 (IQR 25-49) to 25 (IQR 15-35), p=0.001. CONCLUSION: An integrated multidisciplinary palliative homecare team with geriatric training that is accessible all-hours addressed the needs of home-dwelling patients with advanced dementia, improved their quality-of-life and supported families to care for them at home.

Comfort and Satisfaction With Care of Home-Dwelling Dementia Patients at the End of Life.

CONTEXT: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting. OBJECTIVE: The objective of this study was to identify modifiable factors associated with the comfort of dementia patients dying at home and families' satisfaction with care. METHODS: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin <35 g/L, enteral feeding, or pneumonia, were recruited from a palliative homecare program. Independent variables included demographics, medical information, and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients' comfort, whereas the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers' satisfaction two months after bereavement. Gamma regression identified factors independently associated with comfort and satisfaction. RESULTS: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß (95% CI) = 1.823 (0.660-2.986), P = 0.002] was positively associated with comfort, whereas opioid prescription (89.6%) [ß (95% CI) = -2.179 (-4.107 to -0.251), P = 0.027] and >1 antibiotic courses used in the last two weeks of life (77.2%) [ß (95% CI) = -1.968 (-3.196 to -0.740), P = 0.002] were negatively associated. Independent factors associated with families' satisfaction with care were comfort [ß (95% CI) = 0.149 (0.012-0.286), P = 0.033] and honoring of medical intervention preferences (96.0%) [ß (95% CI) = 3.969 (1.485-6.453), P = 0.002]. CONCLUSION: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honoring medical intervention preferences, such as those with palliative intent associated with patients' comfort, determined families' satisfaction with care.