BACKGROUND:Long-term care (LTC) residents are frequently transferred to emergency departments (ED), which may increase the risk of impairment. OBJECTIVE:To examine associations between all-cause ED transfers and development of new permanent severe physical and cognitive impairments, and death. SETTING AND PARTICIPANT:Adults ≥65 with incident admission to LTC homes in Ontario, Canada between 2013 and 2018. METHODS:We conducted a retrospective cohort study. We examined rates of (i) severe physical impairment, (ii) severe cognitive impairment and (iii) all-cause mortality after transfer to ED. We used marginal structural models to estimate the combined effect of acute illness and ED transfer. We used an instrumental variable (IV) analysis to isolate the effect of transfer, adjusting for acute illness. RESULTS:Of 120,238 residents, 78,546 (65.3%) residents had at least one transfer to the hospital. The mean (SD) age was 84.6 (7.9) years, 67.2% were female. The incidence rate ratios were 3.0 (95% CI, 2.9-3.1) for new physical impairment, 2.2 (95% CI, 2.1-2.3) for cognitive impairment and 5.8 (95% CI, 5.7-5.9) for mortality, comparing transferred to never-transferred residents. In IV analysis, transfers were not associated with permanent physical or cognitive impairment (hazard ratio [HR] (95% CI) [HR1.20] (0.92-1.55); [HR0.86] (0.69-1.06), but were associated with decreased mortality [HR0.57] (CI 0.50-0.63). CONCLUSION:In unadjusted analyses, residents transferred to ED had a higher incidence of permanent physical impairment, cognitive impairment and mortality. After adjusting for acute illness, transfer decisions were not associated with changes in the risk of severe impairment and were associated with reduced mortality.
OBJECTIVES:To measure the association between initiating palliative care using the combined criteria of short survival expectations and increased care needs with acute healthcare utilization among community-dwelling people living with dementia. DESIGN:A population-level propensity-based overlap-weighted cohort study. SETTING:Ontario, Canada. PARTICIPANTS:50,961 community-dwelling people living with dementia between 2010 and 2023, with 1-year follow-up until 2024. We used moderate to severe dementia and the initiation of homecare services as proxies for short survival expectations and increased care needs, respectively. We used linked health administrative data with propensity-based overlap weighting on sociodemographic and clinical factors to address confounding by the indication to receive palliative care. EXPOSURES:Receipt of home-based palliative care within 30 days of homecare initiation. MAIN OUTCOME MEASURES:Individual 1-year cause-specific hazards of emergency department (ED) use, hospitalization, and intensive care unit (ICU) admission. RESULTS:Palliative care was associated with a higher risk of hospitalization in the first 90 days (e.g., hazard ratio (HR) 1.43 at 30 days; 95% confidence interval (CI) 1.25-1.64), which was driven predominantly by hospitalization with palliative intent, but was no longer significantly different beyond 180 days, compared to not receiving palliative care. [Correction added on 31 January 2026, after first online publication: The preceding sentence has been revised in this version.] At 90 days, the cumulative incidence of hospitalization, death, or admission to a nursing home was approximately 20% among those receiving palliative care, compared to 15% in those not receiving palliative care. Although the overall absolute rate of ICU admission was low (0.01 ± 0.1 admissions per month), palliative care initiation was associated with a 186% higher risk in the first 30 days (HR 2.86; 95% CI 1.75-4.69) but not beyond 90 days. Palliative care was not associated with ED use over the following year (HR 1.02; 95% CI 0.72-1.45). CONCLUSIONS:The current approach to delivering palliative care services for community-dwelling people living with dementia in Canada may paradoxically increase early acute care use, likely reflecting system gaps and unmet needs. Given the high prevalence of dementia, there is an urgent need to re-examine homecare delivery models.
Objective The number of opioid overdose deaths in Canada has tripled from 2019 to 2023. Our objective was to determine the proportion of opioid overdose decedents who received palliative care, and to identify how they differed from those who did not receive palliative care.Methods We conducted a population-level descriptive study of opioid overdose decedents in Ontario, Canada, between 1 July 2015 and 31 December 2022. Specifically, we identified recipients of palliative care in the last 2 years of life, and age-matched and compared them to opioid overdose decedents who did not receive palliative care.Results Among 11 645 opioid overdose decedents, 30.1% (n=3500) received palliative care mainly in acute care (96.9%). A mean of 4.7 days (SD 11.1) of palliative care was provided in the last 2 years of life. Compared with age-matched decedents not receiving palliative care, palliative care recipients were more likely to live in lower-income neighbourhoods, have higher morbidity, die in hospital and receive prescription opioids for pain at the end of life.Conclusions Approximately one in three opioid overdose decedents received short-term palliative care in acute care. Future studies should examine palliative care access and delivery for people who present to the hospital with opioid overdose.
BACKGROUND:Little is known about end-of-life trajectories in survivors of cardiogenic shock complicating acute myocardial infarction (AMI-CS) who die beyond their index admission, or utilization of palliative care services in AMI-CS survivors. OBJECTIVES:This study aimed to examine long-term palliative and end-of-life care among AMI-CS survivors. METHODS:This was a population-based, retrospective cohort of AMI-CS survivors in Ontario, Canada, from 2009 to 2020 who died during longitudinal follow-up. RESULTS:We identified 3,881 AMI-CS survivors (2009-2020) who died after discharge and before March 2024. The median survival time was 1,096 days (IQR: 312-2,139 days). Overall, 2,100 patients (54.1%) died in acute care, with no difference between those who did and did not receive palliative care. Patients who did not receive palliative care were more likely to die in intensive care units (ICU) than those who did (23% vs 17%, absolute standard difference 0.15). Most patients received palliative care in the final year of life (n = 2,485, 64%); 1,057 patients (42.5%) had outpatient visits, 505 patients (20.3%) had inpatient palliative care consultations, and 327 patients (13.2%) had palliative care hospitalizations. Palliative care, however, was most commonly initiated in the last 14 days of life (1,185 patients, 47.7%). Earlier palliative care referrals were associated with reduced rates of dying in hospital (adjusted OR: 0.50; 95% CI: 0.42-0.65) and ICU (adjusted OR: 0.34; 95% CI: 0.26-0.45). CONCLUSIONS:Early and intermediate term palliative care involvement was associated with reduced risk of death in hospital and ICU. Such consultation may improve end-of-life outcomes in AMI-CS survivors.
BACKGROUND:Continuity of care (COC) measurements that reflect relational continuity have been used as quality indicators, yet their applicability near the end of life may be limited. Modified continuity indices-UPC-Team (Usual Provider of Care) and BB-Team (Bice-Boxerman)-were developed to reflect escalating care needs and capture associations with patient-centered outcomes. OBJECTIVES:To measure associations between the modified COC indices, UPC-Team, and BB-Team during the last year of life and end-of-life (EOL) health care outcomes. METHODS:Retrospective cohort study of adults who died between January 1, 2018, and December 31, 2022, with advanced chronic obstructive pulmonary disease and/or heart failure prevalent ≥2 years before death, using health administrative data from Ontario, Canada. Multivariate regressions measured associations between the indices and days spent in community during the last 30 and 14 days of life, and place of death. RESULTS:Among 175,323 included individuals (median age at death=80; 55.4% male), the median number of community days was 23 and 10 in the last 30 and 14 days of life; 56.5% died in a health care institution. Higher UPC-Team and BB-Team scores were associated with increased odds of institutional deaths and fewer community days. CONCLUSIONS:Higher continuity scores were associated with increased odds of institutional death and fewer days spent in the community, suggesting limited utility of these modified indices in predicting favorable EOL health care outcomes. Findings highlight the need for future research to incorporate all aspects of continuity (ie, relational, informational, and management) to better capture care coordination in this context.
Background: Continuity of care (COC) measurements that reflect relational continuity have been used as quality indicators, yet their applicability near the end of life may be limited. Modified continuity indices-UPC-Team (Usual Provider of Care) and BB-Team (Bice-Boxerman)-were developed to reflect escalating care needs and capture associations with patient-centered outcomes.Objectives: To measure associations between the modified COC indices, UPC-Team, and BB-Team during the last year of life and end-of-life (EOL) health care outcomes.Methods: Retrospective cohort study of adults who died between January 1, 2018, and December 31, 2022, with advanced chronic obstructive pulmonary disease and/or heart failure prevalent >= 2 years before death, using health administrative data from Ontario, Canada. Multivariate regressions measured associations between the indices and days spent in community during the last 30 and 14 days of life, and place of death.Results: Among 175,323 included individuals (median age at death=80; 55.4% male), the median number of community days was 23 and 10 in the last 30 and 14 days of life; 56.5% died in a health care institution. Higher UPC-Team and BB-Team scores were associated with increased odds of institutional deaths and fewer community days.Conclusions: Higher continuity scores were associated with increased odds of institutional death and fewer days spent in the community, suggesting limited utility of these modified indices in predicting favorable EOL health care outcomes. Findings highlight the need for future research to incorporate all aspects of continuity (ie, relational, informational, and management) to better capture care coordination in this context.
BACKGROUND:Transfers from long-term care (LTC) to hospital near the end of life can be burdensome for LTC residents. Dementia and frailty are common in this population, yet their relationship to burdensome transitions remains unclear. This study examined the joint associations between dementia, frailty, and end-of-life burdensome transitions among LTC residents. METHODS:We conducted a population-based retrospective cohort study using health administrative data, capturing LTC residents aged ≥ 65 who died in Ontario, Canada, January 1, 2015-March 31, 2020. Dementia was identified using a validated algorithm, supplemented with Resident Assessment Instrument-Minimum Dataset 2.0 (RAI-MDS) data. Frailty (non-frail, pre-frail, frail) was assessed using a 72-item frailty index developed for use with the RAI-MDS. Burdensome transitions were defined as 3+ transfers to hospital (≥ 2 if due to pneumonia, urinary tract infection, sepsis, dehydration) in the last 90 days of life (last 180 days as secondary outcome). Poisson regression was used to estimate adjusted relative risks (RRs) and 95% confidence intervals (CIs) for burdensome transitions by dementia and frailty status. RESULTS:Among 88,507 LTC decedents, most were frail (67.6%) and had dementia (87.5%). Approximately 4.7% of residents experienced a burdensome transition in the last 90 days of life (8.8% in the last 180 days). Dementia was associated with a reduced risk of burdensome transitions in the last 90 days of life across frailty strata (non-frail: RR = 0.77, 95% CI, 0.64-0.92; pre-frail: RR = 0.86, 95% CI, 0.77-0.97; frail: RR = 0.79, 95% CI, 0.71-0.89). Similar findings were observed when examining burdensome transitions in the last 180 days of life. CONCLUSION:Dementia and frailty are independently associated with a lower likelihood of burdensome transitions near the end of life in LTC residents. Further research is needed to explore the appropriateness of hospital transfers at the end of life, considering the perspectives of LTC residents, family, and healthcare providers.
Introduction Intersectionality, as applied to health, provides a framework for understanding how overlapping social identities, such as ethnicity, gender and socioeconomic status, shape differential health outcomes and healthcare experiences. Individuals who occupy multiple marginalised identities often experience compounded disadvantages. Ethnic minority (EM) populations, defined here as social groups who are numerically smaller and/or socially marginalised within a given national or regional context based on ethnicity, race, culture, language, ancestry, or related heritage (often overlapping with racialised identities), frequently experience systemic exclusion, racism and structural barriers that also contribute to persistent disparities in morbidity, mortality and healthcare access. However, much health research relies on single-axis analyses, which can obscure within-group variation and may inadvertently reinforce inequities. Despite growing recognition of intersectionality, its empirical application to EM health remains limited. This systematic review aims to synthesise evidence on how intersectionality theory has been conceptualised and applied to understand health outcomes and healthcare utilisation among EM populations globally.Methods and analysis This systematic review will follow Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and the PRISMA-Equity Extension. Comprehensive searches of peer-reviewed databases and grey literature, including MEDLINE, EMBASE, CINAHL Plus, Scopus, Web of Science and ProQuest will identify quantitative, qualitative and mixed-method empirical studies published from 2000 to 2026. Eligible studies must implement intersectionality theory to EM health or healthcare utilisation outcomes. Two independent reviewers will screen titles, abstracts and full-text articles. Data extraction will also be conducted independently and discrepancies will be discussed with input from a third reviewer. Guided by the PROGRESS-Plus equity framework, findings will be synthesised thematically, implementing a mixed-method convergent integrated synthesis design.Ethics and dissemination This review only analyses previously published data, thus it does not require ethical approval. Findings will be presented at relevant academic or professional conferences and submitted for publication in a peer-reviewed journal.PROSPERO registration number CRD420251248887.
The COVID-19 pandemic has had a disproportionate impact on residents of long-term care facilities or nursing homes, characterized by significantly higher infection and mortality rates than in the general population. Previous research has highlighted significant disparities in COVID-19 outcomes, particularly among ethnic minorities. This study examines the association between belonging to a minority language community and COVID-19 infection rates in LTCFs in Ontario, Canada, at both the individual and facility levels. We conducted a population-based retrospective cohort study of 85,367 LTC home residents in Ontario between January 15, 2019, and March 30, 2020, which we followed until March 31, 2021, using data from the Continuing Care Reporting System. We defined resident language (obtained from routine assessments in nursing homes) as English (Anglophone), French (Francophone), or other (Allophone), and we calculated a weighted average of languages spoken by residents in each LTC facility to determine the linguistic environment of the LTC facility. We calculated incidence rates of COVID-19 for each linguistic group, and we fitted multilevel logistic regression models to assess the main factors influencing the risk of COVID-19 infection, to account for individual-level and facility-level linguistic factors. The overall incidence of COVID-19 was 14.8
BACKGROUND AND OBJECTIVES:Patients with multiple sclerosis (MS) require increasing health care support, particularly in the last year of life. Despite the benefits of palliative care in addressing symptom burden and improving quality of life, its integration into MS care remains inconsistent. This study aimed to characterize health care utilization and palliative care access among people with MS in the last years of life and to identify key factors associated with hospital death and receipt of palliative care. METHODS:A retrospective cohort study was conducted using linked health administrative databases in Ontario, Canada. The cohort consisted of all decedents aged 18 years or older who died in Ontario between April 2016 and March 2020, and we compared health care utilization in decedents with MS to the rest of the cohort. The identification of MS cases was based on a validated algorithm. Demographics, health care utilization, palliative care involvement, and medical interventions were analyzed. Predictors of palliative care receipt and hospital deaths were evaluated using multivariable logistic regression models. RESULTS:MS decedents (n = 1,975; mean age 68 years; 66.4% female) were younger and had fewer comorbidities than non-MS decedents (n = 500,904; mean age 77). High percentage of MS decedents had outpatient neurology visits in the last 5 years of life (49.4%) but a steep decline closer to death (2.7% in the last month). Palliative care use was similar (58.0% vs 56.9%) but occurred earlier in MS (61.9% vs 59.6% in the last 5 years). Multivariable regression showed that rural residence was associated with increased odds of hospital death (odds ratio [OR] 1.81, 95% CI 1.21-2.70) and lower odds of receiving palliative care (OR 0.74, 95% CI 0.55-0.99), while receiving palliative care within the last 5 years of life reduced the odds of hospital death (OR 0.47, 95% CI 0.37-0.60). Higher comorbidity and increased outpatient visits to urology were associated with a greater odd of receiving palliative care (OR 3.64, 95% CI 2.50-5.29 and OR 1.47, 95% CI 1.20-1.80). DISCUSSION:Although palliative care receipt was comparable between MS and non-MS decedents, rural disparities and high hospital deaths persist. Earlier palliative integration, particularly through neuropalliative care, could improve quality of life and reduce hospitalizations.
Objective: The setting in which death occurs significantly shapes the quality of end-of-life experiences. We aimed to understand how dying in different settings (home, hospital, or hospice or palliative care units [PCU]) influences the quality of the dying experience. Methods: We conducted a secondary analysis of decedent interview data from the Canadian Longitudinal Study on Aging, between January 2012 and March 2022. Proxies of deceased participants provided information on end-of-life experiences. We examined quality of death indicators across various locations and analyzed associations between end-of-life characteristics and the location of death. Results: Among the 1287 participants with completed decedent questionnaires, 17.2% (n = 222) of deceased participants died in hospice or PCU, 49% (n = 631) died in hospital and 22.7% (n = 292) died at home. Those who died at home died in their preferred place more frequently (89.4; standard difference (SD): 0.65), while individuals who died in PCU or hospice reported significantly lower levels of pain (81.5%; SD: 0.31). Dying in the Canadian province of Quebec (odds ratio [OR] 3.77; CI 2.28-6.37), dying of cancer (OR 6.79; CI 4.10-11.9), and having total physical impairment (OR 2.08; CI 1.41-3.08) increased the odds of dying in PCU or hospice. Conclusions: Dying in PCU or hospice may allow participants to die peacefully and have their pain under control, though dying at home aligns more closely with individual preferences, suggesting a potential compromise between quality and location of death. Regional health and social policies may influence where older individuals die.
Introduction:Evidence regarding age-specific associations between risk factors and mortality in patients with chronic kidney disease (CKD) remains limited. We sought to investigate these age-specific associations and to measure their attributable burden on mortality. Methods:This population-based, retrospective cohort study included 576,677 patients in Hong Kong (73.5 ± 13.8 years, 2008-2020). We assessed all-cause and seven cause-specific mortality. Risk factors included six modifiable risk factors (smoking, blood pressure, fasting blood glucose/hemoglobin A1c, low-density lipoprotein cholesterol [LDL-C], and body mass index) and four major comorbidities (diabetes, cardiovascular disease [CVD], heart failure, and cancer). Using hazard ratios and population-attributable fractions (PAFs), we compared the associations and mortality burden of these risk factors across five age-groups (18 to ≥85 years). Results:During a median follow-up of 4.8 years, 329,098 (57.1%) patients died, with primary death causes being CVD (9.9%), cancer (9.9%), and kidney diseases (4.7%). Despite a higher absolute mortality risk in older patients, the relative risk of most risk factors declined with age. Collectively, all risk factors accounted for a higher mortality proportion in the youngest group (PAF: 44.3% [95% confidence interval: 35.3%, 52.0%]) than in the oldest group (22.6% [14.6%, 29.7%]). For patients aged 18-54, suboptimal LDL-C control (12.0% [8.0%, 15.8%]) was the leading risk factor, while CVD (12.6% [12.1%, 13.1%]) was the most influential factor in patients aged ≥75. Conclusion:The evaluated risk factors were associated with increased relative mortality risks in younger CKD patients. These findings underscore the importance of early management strategies, emphasizing LDL-C control in younger and CVD prevention in older CKD patients.
Annually, more than 70 million people worldwide have health-related suffering amenable to palliative care. However, this need remains unmet for more than 85% of cases, predominantly in low-income and middle-income countries. Because most people with serious illness live in community settings and wish to remain there through the end of life, integration of palliative care into primary health care (PHC) is crucial. Primary care teams are well positioned to deliver generalist palliative care but often face insufficient training, weak PHC infrastructure, and poor policy support, among other barriers. In this Viewpoint, we provide an evidence-based rationale for improved integration of palliative care into PHC and share best practice exemplars that show feasible pathways to strengthen integration through training, mentorship, service development, international collaboration, and system adaptation. Informed by lessons learned and recommendations, our international and interprofessional team emphasises that successful integration of palliative care into PHC will require evidence-based advocacy, community partnerships, context-specific implementation, sustainable resourcing, and coordination between generalist and specialist teams to strengthen community-based, person-centred services across the life course.
Background Language barriers between Canadian patients and health care providers are associated with poorer health outcomes, including decreased patient safety and quality of care, misdiagnosis and longer treatment initiation times, and increased mortality. However, research exploring language as a social determinant of health is limited, as Canadian health data are scattered across many jurisdictions, each with its own policies and procedures. This fragmentation makes it difficult for researchers to identify, locate, and use existing data. This paper presents the results of a pilot study that attempts to address this gap by creating a metadata repository (MDR) to act as a central source of information about what data are available at which data holdings across Canada. Objective This project aimed to (1) create a proof-of-concept MDR for Canadian health data at the variable level; (2) identify and label language-related variables existing within the MDR data; and (3) develop an interactive, public-facing web application to let users browse and search the MDR. Methods Metadata were collected from 5 Canadian health data sources, including 4 provincial data holdings and 1 national survey, and pooled to create a data repository. Then, we performed bottom-up labeling of language-related variables within the pooled metadata by first using a search string algorithm across all variable labels, names, and definitions and then consensus screening these variables using a derived, standardized definition of language or linguistic variables. Using the Shiny web framework in R, we then developed an openly accessible web application to allow users to search the proof-of-concept MDR. Results A total of 850,343 variables were collected and included in the repository, with most coming from Ontario (n=712,037, 83.7%) and Manitoba (n=97,051, 11.4%) provincial data holdings. Among all variables in the repository, 213,696 (25.1%) were confirmed to be language related. Conclusions Developing a national MDR would be a transformative opportunity for Canadian researchers to leverage the full scope of Canadian health administrative data. Although a top-down approach with consistent engagement of and collaboration between provincial data holdings and federal data agencies is ideal to develop a national MDR, this study demonstrates the feasibility of a bottom-up approach in contributing to this overarching goal.
Background Hypertensive disorders of pregnancy (HDP) are a leading global cause of maternal and fetal morbidity/mortality. Most estimates of HDP occurrence are reported for composite exposures of HDP or preeclampsia alone, with limited disaggregation by obstetrical subgroup (eg, multi‐fetal deliveries). Consequently, our understanding of HDP prevalence and temporal trends remains limited, and methods for identifying specific diagnoses in administrative data remain underexamined. This population‐based descriptive study assessed how enhanced administrative case‐finding definitions influence prevalence estimates of HDP in pregnancy and postpartum. Methods Included were individuals aged ≥18 years discharged from an Ontario hospital following their first obstetrical delivery between April 1, 2002, and December 31, 2017. We calculated overall and annual prevalence estimates and assessed temporal trends for any HDP and major subtypes by case‐finding definitions, stratified by plurality (singleton versus multi‐fetal deliveries). Results Most subjects had a singleton first delivery (n=781 258; 98%); however, HDP was 2.2 to 2.4 times more prevalent in multi‐fetal deliveries. When pre‐pregnancy hypertension was considered during case‐finding, HDP prevalence increased from 193.6 to 207.6 per 1000 multi‐fetal deliveries and from 79.9 to 92.6 per 1000 singleton deliveries. Gestational hypertension was the most common diagnosis in both populations but was nearly twice as common in those who delivered a multiple gestation (94.4–100.0 versus 49.7–53.4 per 1000 deliveries). Prevalence trends differed by coding strategy and plurality. Conclusions Although informative, data from discharge abstracts alone are insufficient for HDP surveillance, particularly for chronic hypertension in pregnancy. Validation studies should assess the accuracy of our case‐finding definitions against suitable reference standards.
Mental health concerns among medical students are common and may influence specialty selection and early-career practice patterns. However, their potential impact on physician workforce distribution across specialties is not well understood. We conducted a population-based cohort study of physicians newly registered with the College of Physicians and Surgeons of Ontario (CPSO) between 2008 and 2018. We linked CPSO demographic data with ICES (formerly known as the Institute for Clinical and Evaluative Sciences) health administrative databases using unique encoded identifiers. Mental health encounters were defined as ≥ 1 healthcare encounter for mental health or substance use in the two years prior to medical school graduation. The outcome was the first specialty listed at initial CPSO registration, reflecting physicians’ earliest registered specialty upon entry into practice. We used multivariable logistic regression to examine the association between mental health encounters and specialty (with Family Medicine as the referent group) adjusting for age, sex, language proficiency, medical school, rurality and neighbourhood income quintile at age 16. Among 7105 physicians (median age 26 years, 56
Background:Patients with pancreatic ductal adenocarcinoma (PDAC) experience debilitating symptoms, yet factors associated with symptom burden and severity are not well described. Methods:This population-based cohort study included patients diagnosed with PDAC and who completed Edmonton Symptom Assessment System (ESAS) between 1 month before and 2 months after diagnosis between January 1, 2007 and December 31, 2020 in Ontario, Canada. The ESAS contains 9 symptoms on a scale from 0 to 10. The primary outcome was moderate to severe (ESAS scores ≥4) symptoms (pain, tiredness, nausea, depression, anxiety, drowsiness, loss of appetite, well-being, and shortness of breath) 2-6 months after diagnosis. We used multivariable logistic regression models to evaluate associations between the primary outcome and baseline demographic and clinical variables, cancer-specific factors, and baseline symptom scores. Results:We included 4918 patients (mean age 68 years, 52% male). Near the time of diagnosis, 13.8% (nausea) to 38.5% (well-being) of patients reported moderate to severe symptoms. At 2-6 months after diagnosis, 23.0% (dyspnea) to 57.5% (poor well-being) reported moderate to severe symptoms. A range of baseline demographic, clinical, and cancer-specific risk factors were identified for reporting of moderate to severe symptoms. The presence of baseline symptoms for each of the 9 included symptoms was associated with reporting of the same symptom with moderate to high severity 2-6 months after diagnosis. Conclusions:Patients with PDAC face a high symptom burden following diagnosis. Universal physician symptom screening for patients diagnosed with PDAC may enable improved symptom identification and management.
OBJECTIVES:To develop and describe the performance of two modified relational continuity of care indices for adults with organ failure nearing the end of life, addressing limitations of existing indices that penalise multispecialty physician care. DESIGN:Population-based retrospective study. SETTING:Linked routinely collected health administrative databases in Ontario, Canada. PARTICIPANTS:Adults aged ≥19 years who died between 1 January 2018 and 31 December 2022, with kidney failure on dialysis, advanced chronic obstructive pulmonary disease and/or heart failure. PRIMARY AND SECONDARY OUTCOME MEASURES:We adapted the Usual Provider of Care (UPC) and Bice-Boxerman Continuity of Care (BB) indices to avoid penalising multispecialty physician care, resulting in the UPC-Team and BB-Team indices. Indices were calculated for the last 2 years of life (truncating the last month) using outpatient physician visits. Correlation coefficients were produced between the unmodified indices, the modified indices and outpatient healthcare utilisation. RESULTS:The cohort included 199 035 individuals, with a median age of 79 years (P25, P75: 70, 86); 55.5% were male. The median modified continuity scores were higher than the unmodified scores (UPC=0.44 (0.32, 0.61), UPC-Team=0.79 (0.67, 0.89); BB=0.24 (0.15, 0.40), BB-Team=0.75 (0.52, 0.95)). The modified indices shared weaker correlations with outpatient healthcare use (ie, number of visits or specialists involved), compared with the unmodified indices. CONCLUSIONS:The UPC-Team and BB-Team indices do not penalise patients for receiving multispecialty physician care, compared with the unmodified UPC and BB indices. The modified indices demonstrated more consistency in measuring continuity across patients with varying degrees of medical complexity and less correlation with outpatient healthcare use. Use of these indices is suggested to capture different aspects of relational continuity in the context of multispecialty care nearing the end of life.
Background:Lower socioeconomic position (SEP) is a risk factor for poor-quality end-of-life cancer care, but mechanisms of this disparity are not fully understood. We investigated whether receipt of specialised palliative care (SPC) mediates the effect of SEP on end-of-life cancer care quality outcomes. Methods:This cohort study included all adults who died with cancer from 2015 to 2021, in Ontario, Canada. We performed a mediation analysis using material deprivation as a measure of SEP, classified into quintiles from least (Q1) to most deprived (Q5). End-of-life outcomes included receipt of systemic anticancer treatment (SACT) and high health services use (≥2 emergency department visits, ≥2 hospitalisations, ≥1 intensive care unit admission) in the last 30 days of life, and home death. Generalised linear models estimated the adjusted odds ratio (aOR) for each outcome, and direct effect of SEP, and the indirect effect via SPC, across each quintile (Q1 = reference). Findings:Among 173,915 patients, SPC mediated the effects of SEP on end-of-life outcomes. Compared to Q1, patients in Q2-Q5 were progressively less likely to receive SACT at end-of-life (aOR [95% CI], Q3: 0.89 [0.84-0.93]; Q5: 0.77 [0.74-0.81]), or to die at home (Q3: 0.90 [0.87-0.93]; Q5: 0.78 [0.76-0.81]); lack of SPC partially mediated these effects, blunting the effect on SACT and augmenting the effect on home deaths. Compared to Q1, patients in Q2 to 5 were more likely to experience high health services use (Q3: 1.06 [1.02-1.10]; Q5: 1.12 [1.08-1.16]); lack of SPC fully mediated this effect, driven by increasing likelihood of multiple emergency department visits in more deprived quintiles. Interpretation:Receipt of SPC mediated the effects of SEP on end-of-life quality outcomes. Equitable access to SPC for all patients with cancer may mitigate these disparities. Funding:This study was supported by an Operating Grant from the Canadian Institutes of Health Research (Dr. Zimmermann), the Harold and Shirley Lederman Chair in Palliative Care and Psychosocial Oncology (Grant number MM1-174912; Dr. Zimmermann), a Doctoral Research Award: Canada Graduate Scholarship (Grant number FBD-181354; Dr. Iqbal) from the Canadian Institutes of Health Research (CIHR), and a Peterborough KM Hunter Charitable Foundation Graduate Award in Cancer Research (Dr. Iqbal).