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Background: Individuals receiving palliative care (PC) are generally thought to prefer to receive care and die in their homes, yet little research has assessed the quality of home- and community-based PC. This project developed a set of valid and reliable quality indicators (QIs) that can be generated using data that are already gathered with interRAI assessments-an internationally validated set of tools commonly used in North America for home care clients. The QIs can serve as decision-support measures to assist providers and decision makers in delivering optimal care to individuals and their families., Methods: The development efforts took part in multiple stages, between 2017-2021, including a workshop with clinicians and decision-makers working in PC, qualitative interviews with individuals receiving PC, families and decision makers and a modified Delphi panel, based on the RAND/ULCA appropriateness method., Results: Based on the workshop results, and qualitative interviews, a set of 27 candidate QIs were defined. They capture issues such as caregiver burden, pain, breathlessness, falls, constipation, nausea/vomiting and loneliness. These QIs were further evaluated by clinicians/decision makers working in PC, through the modified Delphi panel, and five were removed from further consideration, resulting in 22 QIs., Conclusions: Through in-depth and multiple-stakeholder consultations we developed a set of QIs generated with data already collected with interRAI assessments. These indicators provide a feasible basis for quality benchmarking and improvement systems for care providers aiming to optimize PC to individuals and their families., Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: Dr. A. Sinnarajah has received research grants (last 5 years) on palliative care (as principal investigator or co-investigator), from the Canadian Institutes of Health Research, MSI Foundation, Canadian Cancer Society, Applied Research in Cancer Control, College of Family Physicians of Canada, Choosing Wisely Alberta, Alberta Innovates Health Research, Alberta Cancer Foundation, Alberta Health Services, University of Calgary, Canadian Frailty Network, Alberta Health and Campus Alberta Health Outcomes and Public Health. He has an academic appointment for palliative care research with Queen’s University and Lakeridge Health (currently), and University of Calgary (last 5 years). Lastly, he is/has paid medical administrative positions with Alberta Health Services and Lakeridge Health. The remaining authors declare that no competing interests exist. We confirm that Dr. Sinnarajah has some competing interests to report (previously detailed in the online submission) and we confirm that this does not alter our adherence to PLOS ONE policies on sharing data and materials.

Objectives: The need for palliative care (PC) will continue to increase in Canada with population aging. Many older adults prefer to "age in place" and receive care in their own homes. Currently, there is a lack of standardized quality indicators (QIs) for PC delivered in the community in Canada., Methods: A one-day workshop collected expert opinions on what should be measured to capture quality PC. Three brainstorming sessions were focused on addressing the following questions: (1) what is important to measure to support quality PC, regardless of setting? (2) Of the identified measures, are any of special importance to care provided in the home? (3) What are the challenges, barriers, and opportunities for creating these measures? The National Consensus Project (NCP) for Quality Palliative Care framework was used as a guide to group together important comments into key themes., Results: The experts identified four themes that are important for measuring quality, regardless of care setting, including access to care in the community by a multidisciplinary team, care for the individual with PC needs, support for the informal caregiver (e.g., family, friends), and symptom management for individuals with PC needs. Two additional themes were of special importance to measuring quality PC in the home, including spiritual care for individuals with PC needs and home as the preferred place of death. The challenges, barriers, and potential opportunities to these quality issues were also discussed., Significance of Results: PC experts, through this collaborative process, made a substantial contribution to the creation of a standardized set of QIs for community-based PC. Having a standardized set of QIs will enable health care professionals and decision makers to target areas for improvement, implement interventions to improve the quality of care, and ultimately, optimize the health and well-being of individuals with a serious illness.

Purpose: This study aimed to investigate the impact of early versus not-early palliative care among cancer decedents on end-of-life health care costs., Methods: Using linked administrative databases, we created a retrospective cohort of cancer decedents between 2004 and 2014 in Ontario, Canada. We identified those who received early palliative care (palliative care service used in the hospital or community 12 to 6 months before death [exposure]). We used propensity score matching to identify a control group of not-early palliative care, hard matched on age, sex, cancer type, and stage at diagnosis. We examined differences in average health system costs (including hospital, emergency department, physician, and home care costs) between groups in the last month of life., Results: We identified 144,306 cancer decedents, of which 37% received early palliative care. After matching, we created 36,238 pairs of decedents who received early and not-early (control) palliative care; there were balanced distributions of age, sex, cancer type (24% lung cancer), and stage (25% stage III and IV). Overall, 56.3% of early group versus 66.7% of control group used inpatient care in the last month ( P < .001). Considering inpatient hospital costs in the last month of life, the early group used an average (±standard deviation) of $7,105 (±$10,710) versus the control group of $9,370 (±$13,685; P < .001). Overall average costs (±standard deviation) in the last month of life for patients in the early versus control group was $12,753 (±$10,868) versus $14,147 (±$14,288; P < .001)., Conclusion: Receiving early palliative care reduced average health system costs in the last month of life, especially via avoided hospitalizations., Competing Interests: Lisa C. BarberaTravel, Accommodations, Expenses: ElektaNo other potential conflicts of interest were reported.

Background: Most individuals who typically receive palliative care (PC) tend to have cancer and a relatively short prognosis (< 6 months). People with other life-limiting illnesses can also benefit from a palliative care approach. However, little is known about those who receive palliative home care in Ontario, Canada's largest province. To address this gap, the goal of this project was to understand the needs, symptoms and potential differences between those with a shorter (< 6 months) and longer prognosis (6+ months) for individuals receiving PC in the community., Methods: A cross-sectional analysis was conducted using interRAI Palliative Care (interRAI PC) assessment data collected between 2011 and 2018. Individuals with a shorter prognosis (< 6 months; n = 48,019 or 64.1%) were compared to those with a longer prognosis (6+ months; n = 26,945) across several clinical symptoms. The standardized difference (stdiff), between proportions, was calculated to identify statistically meaningful differences between those with a shorter and longer prognosis. Values of the stdiff of 0.2 or higher (absolute value) indicated a statistically significant difference., Results: Overall, cancer was the most prevalent diagnosis (83.2%). Those with a shorter prognosis were significantly more likely to experience fatigue (75.3% vs. 59.5%; stdiff = 0.34) and shortness of breath at rest (22.1% vs. 13.4%; stdiff = 0.23). However, the two groups were similar in terms of severe pain (73.5% vs. 66.5%; stdiff = - 0.15), depressive symptoms (13.2% vs. 10.7%; stdiff = 0.08) and nausea (35.7% vs. 29.4%; stdiff = 0.13)., Conclusions: These results highlight the importance of earlier identification of individuals who could benefit from a palliative approach to their care as individuals with a longer prognosis also experience high rates of symptoms such as pain and nausea. Providing PC earlier in the illness trajectory has the potential to improve an individual's overall quality of life throughout the duration of their illness., (© 2021. The Author(s).)

Introduction: The end-of-life symptom prevalence of non-cancer patients have been described mostly in hospital and institutional settings. This study aims to describe the average symptom trajectories among non-cancer patients who are community-dwelling and used home care services at the end of life., Materials and Methods: This is a retrospective, population-based cohort study of non-cancer patients who used home care services in the last 6 months of life in Ontario, Canada, between 2007 and 2014. We linked the Resident Assessment Instrument for Home Care (RAI-HC) (standardized home care assessment tool) and the Discharge Abstract Databases (for hospital deaths). Patients were grouped into four non-cancer disease groups: cardiovascular, neurological, respiratory, and renal (not mutually exclusive). Our outcomes were the average prevalence of these outcomes, each week, across the last 6 months of life: uncontrolled moderate-severe pain as per the Pain Scale, presence of shortness of breath, mild-severe cognitive impairment as per the Cognitive Performance Scale, and presence of caregiver distress. We conducted a multivariate logistic regression to identify factors associated with having each outcome respectively, in the last 6 months., Results: A total of 20,773 non-cancer patient were included in our study, which were analyzed by disease groups: cardiovascular (n = 12,923); neurological (n = 6,935); respiratory (n = 6,357); and renal (n = 3,062). Roughly 80% of patients were > 75 years and half were female. In the last 6 months of life, moderate to severe pain was frequent in the cardiovascular (57.2%), neurological (42.7%), renal (61.0%) and respiratory (58.3%) patients. Patients with renal disease had significantly higher odds for reporting uncontrolled moderate to severe pain (odds ratio [OR] = 1.21; 95% CI: 1.08 to 1.34) than those who did not. Patients with respiratory disease reported significantly higher odds for shortness of breath (5.37; 95% CI, 5.00 to 5.80) versus those who did not. Patients with neurological disease compared to those without were 9.65 times more likely to experience impaired cognitive performance and had 56% higher odds of caregiver distress (OR = 1.56; 95% CI: 1.43 to 1.71)., Discussion: In our cohort of non-cancer patients dying in the community, pain, shortness of breath, impaired cognitive function and caregiver distress are important symptoms to manage near the end of life even in non-institutional settings., Competing Interests: The authors do not disclose any competing interests for this submission.

Background: The nutrition profile of palliative home care clients is unknown. This study describes this group and their nutrition issues and evaluates the performance of the interRAI nutrition Clinical Assessment Protocol (CAP)., Methods: This was a cross-sectional secondary analysis using Ontario interRAI Palliative Care (interRAI PC) Assessment data. The sample represents 74,963 unique Ontario home care clients assessed between 2011 and 2018. Frequencies and standardized differences (stdiffs) of nutrition characteristics were presented for cancer (n = 62,394) and noncancer (n = 12,569) diagnostic subgroups. Rates of triggering the nutrition CAP were presented by nutrition issue to evaluate its performance., Results: Of this sample, 16.7% were ≥85 years of age, 52.6% had a prognosis between 6 weeks and 6 months, and 41.4% required assistance with eating. The prevalence was higher among those with nervous/mental/behavioral disorders (72.6%) compared with those with cancer (37.6%; stdiff = 0.75). However, most nutrition issues experienced were similar (stdiff < 0.20) across diagnostic groups. Of the entire sample, 21% triggered the nutrition CAP, indicating a need for further evaluation or intervention. Yet, 73.4% of those who experienced dry mouth, 71.8% of those who required assistance with eating, and 68.4% of those who received a nutrition consult within the last 3 days did not trigger the nutrition CAP., Conclusions: Nutrition issues are prevalent in palliative home care clients, regardless of diagnosis; yet the nutrition CAP identified a small fraction of this group. There is a need to focus research and care guidelines toward life-limiting illnesses beyond cancer and address nutrition-related issues in this population., (© 2020 American Society for Parenteral and Enteral Nutrition.)

Purpose: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care., Methods: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death., Results: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life., Conclusion: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life., (© 2020 John Wiley & Sons Ltd.)

Background: Few measures exist to assess the quality of care received by home care clients, especially at the end of life. Objective: This project examined the rates across a set of quality indicators (QIs) for seriously ill home care clients. Design: This was a cross-sectional descriptive analysis of secondary data collected using a standardized assessment tool, the Resident Assessment Instrument for Home Care (RAI-HC). Setting/Subjects: The sample included RAI-HC data for 66,787 unique clients collected between January 2006 and March 2018 in six provinces. Individuals were defined as being seriously ill if they experienced a high level of health instability, had a prognosis of less than six months, and/or had palliative care as a goal of care. Measurements: We compared individuals with cancer ( n  = 21,119) with those without cancer ( n  = 47,668) on demographic characteristics, health-related outcomes, and on 11 QIs. Results: Regardless of diagnosis, home care clients experienced high rates (i.e., poor performance) on several QIs, namely the prevalence of falls (cancer = 42.4%; noncancer = 55%), daily pain (cancer = 48.3%; noncancer = 43.2%), and hospital admissions (cancer = 48%; noncancer = 46.6%). The QI rates were significantly lower (i.e., better performance) for the cancer group for three out of the 11 QIs: falls (absolute standardized difference [SD] = 0.25), caregiver distress (SD = 0.28), and delirium (SD = 0.23). Conclusions: On several potential QIs, seriously ill home care clients experience high rates, pointing to potential areas for quality improvement across Canada.

Context: Awareness of their medical prognosis enables terminally ill patients to make decisions on treatments and end-of-life care/planning, and to reach acceptance. Yet, many patients receiving palliative care (PC) are unaware of their prognosis, even when death is imminent and has been discussed with health care providers. A better understanding of patient characteristics associated with prognostic awareness (PA) is needed to develop interventions aimed at improving it., Objectives: To identify patient characteristics associated with PA in a PC population., Methods: The sample comprised 2090 palliative home care patients in Ontario, Canada, assessed using the interRAI Palliative Care Assessment. Independent variables included sociodemographic, cognitive/physical functioning, mood, psychological well-being, and social support. Using cross-sectional data, an adjusted logistic regression model was developed to identify key patient characteristics associated with PA. A multifaceted definition of PA was assumed and represented dichotomously in the model. Multiple imputation was used to address missing data, generating results similar to the complete case analysis., Results: The PA was higher in patients with: a shorter prognosis (odds ratio [OR] 2.90, 95% confidence interval [CI] 1.93-4.33), increased hours of informal care (OR 1.71, 95% CI 1.15-2.52), less cognitive impairment (OR 1.61, 95% CI 1.14-2.28), and in patients at peace with life (OR 1.79, 95% CI 1.27-2.53). Site differences were observed but do not reflect differences in age, gender, prognosis, or diagnosis., Conclusion: Some patient characteristics are amenable to clinical intervention to raise PA, such as being at peace, cognitive impairment, and depression. Prognostic communications vary in timing and quality and may underlie our site differences, but further research is required to confirm this., (Crown Copyright © 2015. Published by Elsevier Inc. All rights reserved.)

Individuals with heart failure experience complex symptoms and have a poor prognosis, comparable to those with cancer. However, people with heart failure are less likely to be recognized as needing palliative care. We compared seriously ill home care clients with cancer versus those with heart failure to explore differences between them using existing data from the Resident Assessment Instrument for Home Care (RAI-HC). The sample included 1,475 older adults (65+) in Ontario who had a prognosis of less than 6 months or severe health instability. Clients with heart failure were significantly older (p < .0001) and experienced significantly higher rates of impairment in activities of daily living (p = .005), cognitive impairment (p < .0001), and severe health instability (p < .0001), but were significantly less likely to have a prognosis of less than 6 months (p < .0001). Home care clients with heart failure have needs similar to those with cancer yet are typically not identified as having a terminal prognosis.

Background: Predictive cancer tools focus on survival; none predict severe symptoms. Aim: To develop and validate a model that predicts the risk for having low performance status and severe symptoms in cancer patients. Design: Retrospective, population-based, predictive study Setting/Participants: We linked administrative data from cancer patients from 2008 to 2015 in Ontario, Canada. Patients were randomly selected for model derivation (60%) and validation (40%). Using the derivation cohort, we developed a multivariable logistic regression model to predict the risk of an outcome at 6 months following diagnosis and recalculated after each of four annual survivor marks. Model performance was assessed using discrimination and calibration plots. Outcomes included low performance status (i.e. 10–30 on Palliative Performance Scale), severe pain, dyspnea, well-being, and depression (i.e. 7–10 on Edmonton Symptom Assessment System). Results: We identified 255,494 cancer patients (57% female; median age of 64; common cancers were breast (24%); and lung (13%)). At diagnosis, the predicted risk of having low performance status, severe pain, well-being, dyspnea, and depression in 6-months is 1%, 3%, 6%, 13%, and 4%, respectively for the reference case (i.e. male, lung cancer, stage I, no symptoms); the corresponding discrimination for each outcome model had high AUCs of 0.807, 0.713, 0.709, 0.790, and 0.723, respectively. Generally these covariates increased the outcome risk by >10% across all models: lung disease, dementia, diabetes; radiation treatment; hospital admission; pain; depression; transitional performance status; issues with appetite; or homecare. Conclusions: The model accurately predicted changing cancer risk for low performance status and severe symptoms over time. [ABSTRACT FROM AUTHOR]

ABSTRACTObjective:This study identified the predictors of incident loneliness in a group of seriously ill older adults (aged 65+) receiving home care.Method: Existing data collected with the Resident Assessment Instrument for Home Care (RAI-HC) were utilized. A cohort of clients (N = 2,499) with two RAI-HC assessments and no self-reported loneliness at time 1 were included. Self-reported loneliness, upon reassessment, was the outcome of interest. Clients with a prognosis of less than six months or severe health instability were included.Results: The average length of time between assessments was 5.9 months (standard deviation = 4.10). During that time, 7.8% (n = 181) of the sample developed loneliness. In a multivariate regression model, worsening symptoms of depression, a decline in social activities, and not living with a primary caregiver all increased the risk of loneliness.Significance Of Results: These results highlight how changes in psychosocial factors over time can contribute to loneliness, which can inform clinicians as they seek to identify those who may be at risk for loneliness. [ABSTRACT FROM AUTHOR]

Context: Breathlessness is a symptom associated with poor clinical outcomes and prognosis. Little is known about its long-term trends and associations with social factors including decline in social activities and caregiver distress.Objectives: To describe factors associated with the prevalence of clinician-reported breathlessness across Canada among cohorts receiving home care or nursing home care.Methods: A retrospective observational cohort study of cross-sectional intake assessment data from Canadian interRAI Home Care and Nursing Home data sets. In each data set, we examined covariates associated with the presence of clinician-reported breathlessness using multivariate regression.Results: Between 2007 and 2018, we identified 1,317,117 and 469,709 individuals from the home care and nursing home data sets, respectively. Over two-thirds were aged >75 and over 60% were women. Breathlessness was present at intake in 26.0% of the home care and 8.2% of the nursing home cohorts. Between 2007 and 2018, prevalence of breathlessness increased by 10% for the home care cohort, while remaining relatively constant in nursing homes. Covariates associated with increased odds of having clinician-reported breathlessness at intake in both cohorts were moderate-severe impairment with activities of daily living, being male, older age, high pain scores, signs of depression, and decline in social activities. In the home care cohort, the presence of breathlessness was associated with a greater odds of caregiver distress (odds ratio = 1.19, 95% CI: 1.18-1.20).Conclusion: The prevalence of clinician-reported breathlessness is higher in home care than in nursing home populations, the former having risen by 10% over the decade. Prevalence of breathlessness is associated with decline in social activities and caregiver distress. Enhanced supports may be required to meet increasing patient need in the community. [ABSTRACT FROM AUTHOR]

Context: The decision to request and proceed with euthanasia or physician-assisted dying is complex, and predictors of such decisions are heterogeneous with regard to physical health, psychological, and social factors. Local research is therefore needed.Objectives: To examine the interplay of demographic, clinical, and psychosocial factors routinely collected by a standardized clinical instrument, the interRAI Resident Assessment Instrument for Palliative Care (interRAI-PC), in people with a prognosis of less than 12 months who wanted to die.Methods: All New Zealanders who had an interRAI-PC in 2018 were included. The outcome variable was the single item Wants to die now. Independent variables included biopsychosocial factors and health index scales generated by interRAI-PC. A binary logistic regression was used to determine the predictive factors of Wants to die now (yes vs. no).Results: There were 771 individuals included (mean age 76.0 years; SD 11.6; female 50.1%); 9.3% of whom reported yes to Wants to die now, 59.8% no, and for 30.9%, the assessor was unable to determine. The factors with the largest odds ratios (ORs) were awareness of terminal prognosis (OR 4.8; 95% CI 2.2-10.3), high level of depression (OR 4.6; 95% CI 1.7-12.6), not finding meaning in day-to-day life (OR 3.8; 95% CI 1.8-8.1), and pain (less than severe: OR 3.7; 95% CI 1.3-10.4 and severe to excruciating: OR 3.5; 95% CI 1.1-10.7).Conclusion: Addressing the significant factors we identified should form part of a multidisciplinary assessment when terminally ill patients express a wish to die, to ensure their physical, psychological, and existential needs are adequately met. [ABSTRACT FROM AUTHOR]