Comparing quality indicator rates for home care clients receiving palliative and end-of-life care before and during the Covid-19 pandemic.

BACKGROUND: The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home. PURPOSE: To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic. METHODS: A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the interRAI Palliative Care instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14, 2019 to March 16, 2020) and COVID cohort (March 17, 2020 to May 18, 2021). A propensity score analysis was used to match (using nearest neighbour matching) on 21 covariates, resulting in a sample size of 2479 unique interRAI Palliative Care assessments in each cohort. Alternative propensity score methods were explored as part of a sensitivity analysis. RESULTS: After matching the pre-COVID and COVID cohorts, five of the 16 QIs had statistically significant differences in the QI rates (change from pre-COVID to COVID): decrease in prevalence of severe or excruciating daily pain (p = 0.03, effect size=-0.08), decrease in prevalence of caregiver distress (p = 0.02, effect size=-0.06), decrease in prevalence of negative mood (p = 0.003, effect size=- 0.17), decrease in prevalence of a delirium-like syndrome (p = 0.001, effect size=-0.25) and decrease in prevalence of nausea or vomiting (p = 0.04, effect size=-0.06). While the alternative propensity score methods produced slightly different results, no clinically meaningful differences were seen between the cohorts when effect sizes were examined. All methods were in agreement regarding the highest QI rates, which included the prevalence of shortness of breath with activity, no advance directives, and fatigue. CONCLUSION: This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries, and in creating benchmarks for determining acceptable rates of different QIs.

Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

Residual Disease Burden After Neoadjuvant Therapy Among US Patients With High-Risk HER2-positive Early-Stage Breast Cancer: A Population Effectiveness Model.

BACKGROUND: Approximately half of patients with high-risk HER2-positive early-stage breast cancer (ESBC) do not have pathologic complete response (pCR) after neoadjuvant therapy. The residual burden of disease among this population has not been previously quantified. MATERIALS AND METHODS: We used decision-modeling techniques to simulate recurrence, progression from locoregional to distant cancer, breast cancer-related mortality, and mortality from other causes over a 10-year period in a hypothetical cohort. We derived progression probabilities primarily from the KATHERINE trial of T-DM1 (ado-trastuzumab emtansine) and mortality outcomes from the published literature. Modeled outcomes included recurrences, breast cancer deaths, deaths from other causes, direct medical costs, and costs due to lost productivity. To estimate the residual disease burden, we compared outcomes from a cohort of patients treated with T-DM1 versus a hypothetical cohort with no disease recurrence. RESULTS: We estimated that 9,300 people would experience incident high-risk HER2-positive ESBC in the United States in 2021 based on cancer surveillance databases, clinical trial data, and expert opinion. We estimated that, in this group, 2,118 would experience disease recurrence, including 1,576 distant recurrences, and 1,358 would experience breast cancer deaths. This residual disease burden resulted in 6,435 life-years lost versus the recurrence-free cohort, and healthcare-related costs totaling $644 million, primarily associated with treating distant cancers. CONCLUSION: Patients with HER2-positive ESBC who do not achieve pCR after neoadjuvant therapy are at ongoing risk of recurrence despite the effectiveness of neoadjuvant treatment. There is substantial clinical and economic value in further reducing the residual disease burden in this population.

A multi-stage process to develop quality indicators for community-based palliative care using interRAI data.

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.

Learner Experiences Matter in Interprofessional Palliative Care Education: A Mixed Methods Study.

CONTEXT: Interprofessional collaboration is needed in palliative care and many other areas in health care. Pallium Canada's two-day interprofessional Learning Essential Approaches to Palliative care Core courses aim to equip primary care providers from different professions with core palliative care skills. OBJECTIVES: Explore the learning experience of learners from different professions who participated in Learning Essential Approaches to Palliative care Core courses from April 2015 to March 2017. METHODS: This mixed methods study was designed as a secondary analysis of existing data. Learners had completed a standardized course evaluation survey online immediately post-course. The survey explored the learning experience across several domains and consisted of seven closed ended (Likert Scales; 1 = "Total Disagree", 5 = "Totally Agree") and three open-ended questions. Quantitative data were analyzed using descriptive statistics and Kruskal-Wallis non-parametric test tests, and qualitative data underwent thematic analysis. RESULTS: During the study period, 244 courses were delivered; 3045 of 4636 participants responded (response rate 66%); physicians (662), nurses (1973), pharmacists (74), social workers (80), and other professions (256). Overall, a large majority of learners (96%) selected "Totally Agree" or "Agree" for the statement "the course was relevant to my practice". A significant difference was noted across profession groups; X2 (4) = 138; p < 0.001. Post-hoc analysis found the differences to exist between physicians and pharmacists (X2 = -4.75; p < 0.001), and physicians and social workers (X2 = -6.63; p < 0.001). No significant differences were found between physicians and nurses (X2 = 1.31; p = 1.00), and pharmacists and social workers (X2 = -1.25; p = 1.00). Similar results were noted for five of the other statements. CONCLUSION: Learners from across profession groups reported this interprofessional course highly across several learning experience parameters, including relevancy for their respective professions. Ongoing curriculum design is needed to fully accommodate the specific learning needs of some of the professions.

Cryptococcal meningitis: a review for emergency clinicians.

INTRODUCTION: Cryptococcal Meningitis (CM) remains a high-risk clinical condition, and many patients require emergency department (ED) management for complications and stabilization. OBJECTIVE: This narrative review provides an evidence-based summary of the current data for the emergency medicine evaluation and management of CM. DISCUSSION: This review evaluates the diagnosis, management, and empiric treatment of suspected CM in the ED. CM can easily evade diagnosis with a subacute presentation, and should be considered in any patient with a headache, neurological deficit, or who is immunocompromised. As a definitive diagnosis of CM will not be made in the ED, management of a patient with suspected CM includes prompt diagnostic testing and initiation of empiric treatment. Multiple types of newer Cryptococcal antigen tests provide high sensitivity and specificity both in serum and cerebrospinal fluid (CSF). Patients should be treated empirically for bacterial, fungal, and viral meningitis, specifically with amphotericin B and flucytosine for presumed CM. Additionally, appropriate resuscitation and supportive care, including advanced airway management, management of increased intracranial pressure (ICP), antipyretics, intravenous fluids, and isolation, should be initiated. Antiretroviral therapy (ART) should not be initiated in the ED for those found or known to be HIV-positive for risk of immune reconstitution inflammatory syndrome (IRIS). CONCLUSIONS: CM remains a rare clinical presentation, but carries significant morbidity and mortality. Physicians must rapidly diagnose these patients while evaluating for other diseases and complications. Early consultation with an infectious disease specialist is imperative, as is initiating symptomatic care.

Feasibility and effects on the gut microbiota of a 12-week high-intensity interval training plus lifestyle education intervention on inactive adults with celiac disease.

This study assessed the feasibility and benefits of high-intensity interval training (HIIT) plus lifestyle education among inactive adults with celiac disease. Forty-one participants were randomized to receive the intervention (HIIT plus lifestyle education; HIIT+) for 12 weeks or waitlist control (WLC). Testing was completed at baseline, immediately post-intervention, and 3 months post-intervention. Generalized estimating equations were used to assess changes in the outcome variables over time between the groups. Mean percent of age-predicted maximum heart rate was 97.9% and average rating of perceived exertion was 6.33 (out of 10) during HIIT intervals. Following the intervention, the HIIT+ showed enrichment in relative abundance of Parabacteroides and Defluviitaleaceae_UCG_011 while WLC showed enrichment in relative abundance of Roseburia intestinalis, Klebsiella, and Adlercreutzia. A unique set of taxa were differentially abundant between the groups at 3 months post-intervention. HIIT+ participants experienced a reduction in resting heart rate (-6.6 bpm) immediately post-intervention compared with WLC. Further research is needed to establish an optimal HIIT protocol that may improve maximal oxygen uptake and metabolic syndrome biomarkers. Findings from this pilot study provide preliminary evidence that an HIIT intervention is feasible for inactive adults with celiac disease and leads to favourable changes in resting heart rate alongside potentially beneficial shifts in gut microbiota. Trial registration number: ClinicalTrials.gov number NCT03520244. Novelty: HIIT leads to potentially beneficial changes in the gut microbiota of adults with celiac disease. An HIIT exercise intervention is feasible and well tolerated for patients with celiac disease.

Potential quality indicators for seriously ill home care clients: a cross-sectional analysis using Resident Assessment Instrument for Home Care (RAI-HC) data for Ontario.

BACKGROUND: Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment. METHODS: Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients. QIs were developed through a review of the literature and consultation with subject matter experts in palliative care. Serious illness was defined as a prognosis of less than 6 months to live or the presence of severe health instability. The rates of the QIs were stratified across Ontario's geographic regions, and across four common life-limiting illnesses to observe variation. RESULTS: Within the sample, 14,312 clients were considered to be seriously ill and were more likely to experience negative health outcomes such as cognitive performance (OR = 2.77; 95% CI: 2.66-2.89) and pain (OR = 1.59; 95% CI: 1.53-1.64). Twenty subject matter experts were consulted and a list of seven QIs was developed. Indicators with the highest overall rates were prevalence of falls (50%) prevalence of daily pain (47%), and prevalence of caregiver distress (42%). The range in QI rates was largest across regions for prevalence of caregiver distress (21.5%), the prevalence of falls (16.6%), and the prevalence of social isolation (13.7%). Those with some form of dementia were most likely to have a caregiver that was distressed (52.6%) or to experience a fall (53.3%). CONCLUSION: Home care clients in Ontario who are seriously ill are experiencing high rates of negative health outcomes, many of which are amenable to change. The RAI-HC can be a useful tool in identifying these clients in order to better understand their needs and abilities. These results contribute significantly to the process of creating and validating a standardized set of QIs that can be generated by organizations using the RAI-HC as part of normal clinical practice.

The Effects of Exercise on Physical and Psychological Outcomes in Cancer Caregivers: Results From the RECHARGE Randomized Controlled Trial.

Background: Family caregivers to cancer patients are at risk for physical and psychological morbidity as a direct result of being in the caregiver role. Exercise as an intervention to support caregiver health and well-being has been tested in other caregiver populations; however, no randomized controlled trials testing the effects of an aerobic and resistance training program have been conducted where cancer caregivers only have participated. Purpose: To examine the effects of a 12-week exercise program on quality of life (Short Form 36 v2), psychological outcomes, physical activity levels, and physical fitness in caregivers to cancer patients. Methods: Seventy-seven caregivers were randomized to either an exercise intervention or wait-list control. Two participants in the exercise arm dropped out immediately after their baseline assessment. Outcome data for n = 77 participants were analyzed using intention-to-treat analysis with linear mixed models. Results: Significant group by time interaction effects were detected for exercise on the mental health component score of quality of life, self-reported weekly exercise levels, and the six-minute walk test. Small to medium effect sizes were detected on several outcomes including physical health component of quality of life (d = 0.36), mental health component of quality of life (d = 0.74), depression (d = 0.41), anxiety (d = 0.35), physical activity levels (d = 0.80), and the six-minute walk test (d = 0.21). Conclusions: The findings suggest that exercise may improve health and well-being and could be considered as an additional type of support offered to cancer caregivers. Clinical trial registration no: NCT02580461.

Patient characteristics associated with prognostic awareness: a study of a Canadian palliative care population using the InterRAI palliative care instrument.

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.

Presence of methicillin resistant Staphylococcus aureus in respiratory cultures from cystic fibrosis patients is associated with lower lung function.

The prevalence of methicillin resistant Staphylococcus aureus (MRSA) infections is increasing in both the general population and cystic fibrosis (CF) patients. We hypothesized that MRSA infection of the conductive airways as seen in CF would be associated with more severe disease than that seen with methicillin sensitive S. aureus (MSSA). To test this hypothesis, we used data from the Epidemiologic Study of Cystic Fibrosis (ESCF), a large observational study of CF patients in North America, to compare CF patients with MRSA in their respiratory tract cultures to those with MSSA. During a 1-year time period from January 1, 2001 to December 31, 2001, data from 20,451 patients were collected by the ESCF, and 1,834 (7.5%) patients had respiratory tract cultures that were positive for S. aureus only. Compared to patients with MSSA only, patients with MRSA only had significantly more airflow obstruction, as measured by forced expiratory volume in 1 sec (FEV1). The mean FEV1 for patients 6-17 years old with MRSA was 80.7% predicted compared to 89.4% in the MSSA group (P<0.001). The likelihood of hospitalization and treatment with oral, inhaled, and intravenous antibiotics were all significantly increased in patients with MRSA compared to those with MSSA. Similar results were seen in patients >or=18 years old. The results of our study highlight the growing clinical impact of MRSA infections in CF patients.