Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study.

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.

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.

How do individual, social, environmental, and resilience factors shape self-reported health among community-dwelling older adults: a qualitative case study.

BACKGROUND: While older adults are living longer, they often face health challenges, including living with multiple chronic conditions. How older adults respond and adapt to the challenges of multimorbidity to maintain health and wellness is of increasing research interest. Self-reported health, emerging as an important measure of health status, has broad clinical and research applications, and has been described as a predictor of future morbidity and mortality. However, there is limited understanding of how individual, social, and environmental factors, including those related to multimorbidity resilience, influence self-reported health among community-dwelling older adults (≥ 65 years). METHODS: Informed by the Lifecourse Model of Multimorbidity Resilience, this explanatory case study research explored older adults' perceptions of how these factors influence self-reported health. Data were generated through semi-structured telephone interviews with community-dwelling older adults. RESULTS: Fifteen older adults participated in this study. Four key themes, specific to how these older adults describe individual, social, environmental, and multimorbidity resilience factors as shaping their self-reported health, were identified: 1) health is a responsibility - "What I have to do"; 2) health is doing what you want to do despite health-related limitations - "I do what I want to do"; 3) the application and activation of personal strengths - "The way you think", and; 4) through comparison and learning from others - "Looking around at other people". These themes, while distinct, were found to be highly interconnected with recurring concepts such as independence, control, and psychological health and well-being, demonstrating the nuance and complexity of self-reported health. CONCLUSIONS: Findings from this study advance understanding of the factors that influence assessments of health among community-dwelling older adults. Self-reported health remains a highly predictive measure of future morbidity and mortality in this population, however, there is a need for future research to contribute additional understanding in order to shape policy and practice.

The stroke transitional care intervention for older adults with stroke and multimorbidity: a multisite pragmatic randomized controlled trial.

BACKGROUND: This study aimed to test, in real-world clinical practice, the effectiveness of a Transitional Care Stroke Intervention (TCSI) compared to usual care on health outcomes, self-management, patient experience, and health and social service use costs in older adults (≥ 55 years) with stroke and multimorbidity (≥ 2 chronic conditions). METHODS: This pragmatic randomized controlled trial (RCT) included older adults discharged from hospital to community with stroke and multimorbidity using outpatient stroke rehabilitation services in two communities in Ontario, Canada. Participants were randomized 1:1 to usual care (control group) or usual care plus the 6-month TCSI (intervention group). The TCSI was delivered virtually by an interprofessional (IP) team, and included care coordination/system navigation support, phone/video visits, monthly IP team conferences, and an online resource to support system navigation. The primary outcome was risk of hospital readmission (all cause) after six-months. Secondary outcomes included physical and mental functioning, stroke self-management, patient experience, and health and social service use costs. The intention-to-treat principle was used to conduct the primary and secondary analyses. RESULTS: Ninety participants were enrolled (44 intervention, 46 control); 11 (12%) participants were lost to follow-up, leaving 79 (39 intervention, 40 control). No significant between-group differences were seen for baseline to six-month risk of hospital readmission. Differences favouring the intervention group were seen in the following secondary outcomes: physical functioning (SF-12 PCS mean difference: 5.10; 95% CI: 1.58-8.62, p = 0.005), stroke self-management (Southampton Stroke Self-Management Questionnaire mean difference: 6.00; 95% CI: 0.51-11.50, p = 0.03), and patient experience (Person-Centred Coordinated Care Experiences Questionnaire mean difference: 2.64, 95% CI: 0.81, 4.47, p = 0.005). No between-group differences were found in total healthcare costs or other secondary outcomes. CONCLUSIONS: Although participation in the TCSI did not impact hospital readmissions, there were improvements in physical functioning, stroke self-management and patient experience in older adults with stroke and multimorbidity without increasing total healthcare costs. Challenges associated with the COVID-19 pandemic, including the shift from in-person to virtual delivery, and re-deployment of interventionists could have influenced the results. A larger pragmatic RCT is needed to determine intervention effectiveness in diverse geographic settings and ethno-cultural populations and examine intervention scalability. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04278794 . Registered May 2, 2020.

Feasibility, acceptability, and preliminary effectiveness of the adapted Namaste Care program delivered by caregivers of community-dwelling older persons with moderate to advanced dementia: a mixed methods feasibility study.

BACKGROUND: Caregivers have considerable responsibilities in supporting persons in advanced stages of dementia, however they receive little education. Namaste Care is a multisensory program originally designed to be delivered by healthcare providers in long-term care homes for persons with advanced dementia. The program has not yet been adapted and evaluated for use by caregivers of persons with moderate to advanced dementia living at home. The purpose of this feasibility study is to determine the feasibility, acceptability and preliminary effectiveness of the adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia. METHODS: This feasibility study, with a one-group before-after design and interviews, was part of a larger study using a multiphase mixed methods design. A total of 12 caregivers delivered the program over three months. Caregivers completed questionnaires on caregiver quality of life, perceptions of caregiving, self-efficacy, and burden at baseline and 3-month follow-up. Caregivers participated in interviews at the 3-month follow-up to explore acceptability and perceived benefit. Descriptive statistics and paired t-tests were used to analyze quantitative data. A secondary analysis used multiple imputation to explore the impact of missing data. Experiential thematic analysis was used in analyzing qualitative data. RESULTS: The adapted Namaste Care program was judged to be feasible, given that all caregivers used it at least twice a week over the 3-month period. The retention rate of caregivers was 83% (10 of 12). Caregivers perceived that the program was practical, enhanced the wellbeing of persons with dementia, and brought them closer in their relationships with persons with dementia. There were no statistically significant changes for quality of life, perceptions of caregiving, self-efficacy, or burden outcomes. Multiple imputation results revealed promising findings for an improvement in caregiver wellbeing related to quality of life. CONCLUSIONS: The adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia was feasible and acceptable. The program has the potential to enhance the quality of life and other outcomes of caregivers, however there is a need to conduct a larger trial that is adequately powered to detect these effects.

Self-reported health and the well-being paradox among community-dwelling older adults: a cross-sectional study using baseline data from the Canadian Longitudinal Study on Aging (CLSA).

BACKGROUND: Self-reported health is a widely used epidemiologic measure, however, the factors that predict self-reported health among community-dwelling older adults (≥65 years), especially those with multimorbidity (≥2 chronic conditions), are poorly understood. Further, it is not known why some older adults self-report their health positively despite the presence of high levels of multimorbidity, a phenomenon known as the well-being paradox. The objectives of this study were to: 1) examine the factors that moderate or mediate the relationship between multimorbidity and self-reported health; 2) identify the factors that predict high self-reported health; and 3) determine whether these same factors predict high self-reported health among those with high levels of multimorbidity to better understand the well-being paradox. METHODS: A cross-sectional analysis of baseline data from the Canadian Longitudinal Study on Aging was completed (n = 21,503). Bivariate stratified analyses were used to explore whether each factor moderated or mediated the relationship between multimorbidity and self-reported health. Logistic regression was used to determine the factors that predict high self-reported health in the general population of community-dwelling older adults and those displaying the well-being paradox. RESULTS: None of the factors explored in this study moderated or mediated the relationship between multimorbidity and self-reported health, yet all were independently associated with self-reported health. The 'top five' factors predicting high self-reported health in the general older adult population were: lower level of multimorbidity (odds ratio [OR] 0.75, 95% confidence interval [CI] 0.74-0.76), female sex (OR 0.62, CI 0.57-0.68), higher Life Space Index score (OR 1.01, CI 1.01-1.01), higher functional resilience (OR 1.16, CI 1.14-1.19), and higher psychological resilience (OR 1.26, CI 1.23-1.29). These same 'top five' factors predicted high self-reported health among the subset of this population with the well-being paradox. CONCLUSIONS: The factors that predict high self-reported health in the general population of older adults are the same for the subset of this population with the well-being paradox. A number of these factors are potentially modifiable and can be the target of future interventions to improve the self-reported health of this population.

The Aging, Community and Health Research Unit Community Partnership Program (ACHRU-CPP) for older adults with diabetes and multiple chronic conditions: study protocol for a randomized controlled trial.

BACKGROUND: Older adults (≥65 years) with diabetes and multiple chronic conditions (MCC) (> 2 chronic conditions) experience reduced function and quality of life, increased health service use, and high mortality. Many community-based self-management interventions have been developed for this group, however the evidence for their effectiveness is limited. This paper presents the protocol for a randomized controlled trial (RCT) comparing the effectiveness and implementation of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) to usual care in older adults with diabetes and MCC and their caregivers. METHODS: We will conduct a cross-jurisdictional, multi-site implementation-effectiveness type II hybrid RCT. Eligibility criteria are: ≥65 years, diabetes diagnosis (Type 1 or 2) and at least one other chronic condition, and enrolled in a primary care or diabetes education program. Participants will be randomly assigned to the intervention (ACHRU-CPP) or control arm (1:1 ratio). The intervention arm consists of home/telephone visits, monthly group wellness sessions, multidisciplinary case conferences, and system navigation support. It will be delivered by registered nurses and registered dietitians/nutritionists from participating primary care or diabetes education programs and program coordinators from community-based organizations. The control arm consists of usual care provided by the primary care setting or diabetes education program. The primary outcome is the change from baseline to 6 months in mental functioning. Secondary outcomes will include, for example, the change from baseline to 6 months in physical functioning, diabetes self-management, depressive symptoms, and cost of use of healthcare services. Analysis of covariance (ANCOVA) models will be used to analyze all outcomes, with intention-to-treat analysis using multiple imputation to address missing data. Descriptive and qualitative data from older adults, caregivers and intervention teams will be used to examine intervention implementation, site-specific adaptations, and scalability potential. DISCUSSION: An interprofessional intervention supporting self-management may be effective in improving health outcomes and client/caregiver experience and reducing service use and costs in this complex population. This pragmatic trial includes a scalability assessment which considers a range of effectiveness and implementation criteria to inform the future scale-up of the ACHRU-CPP. TRIAL REGISTRATION: Clinical Trials.gov Identifier NCT03664583 . Registration date: September 10, 2018.

Effect of socio-demographic and health factors on the association between multimorbidity and acute care service use: population-based survey linked to health administrative data.

BACKGROUND: This study explores how socio-demographic and health factors shape the relationship between multimorbidity and one-year acute care service use (i.e., hospital, emergency department visits) in older adults in Ontario, Canada. METHODS: We linked multiple cycles (2005-2006, 2007-2008, 2009-2010, 2011-2012) of the Canadian Community Health Survey (CCHS) to health administrative data to create a cohort of adults aged 65 and older. Administrative data were used to estimate one-year service use and to identify 12 chronic conditions used to measure multimorbidity. We examined the relationship between multimorbidity and service use stratified by a range of socio-demographic and health variables available from the CCHS. Logistic and Poisson regressions were used to explore the association between multimorbidity and service use and the role of socio-demographic factors in this relationship. RESULTS: Of the 28,361 members of the study sample, 60% were between the ages of 65 and 74 years, 57% were female, 72% were non-immigrant, and over 75% lived in an urban area. Emergency department visits and hospitalizations consistently increased with the level of multimorbidity. This study did not find strong evidence of moderator or interaction effects across a range of socio-demographic factors. Stratified analyses revealed further patterns, with many being similar for both services - e.g., the odds ratios were higher at all levels of multimorbidity for men, older age groups, and those with lower household income. Rurality and immigrant status influenced emergency department use (higher in rural residents and non-immigrants) but not hospitalizations. Multimorbidity and the range of socio-demographic variables remained significant predictors of service use in the regressions. CONCLUSIONS: Strong evidence links multimorbidity with increased acute care service use. This study showed that a range of factors did not modify this relationship. Nevertheless, the factors were independently associated with acute care service use, pointing to modifiable risk factors that can be the focus of resource allocation and intervention design to reduce service use in those with multimorbidity. The study's results suggest that optimizing acute care service use in older adults requires attention to both multimorbidity and social determinants, with programs that are multifactorial and integrated across the health and social service sectors.

The impact of multimorbidity level and functional limitations on the accuracy of using self-reported survey data compared to administrative data to measure general practitioner and specialist visits in community-living adults.

BACKGROUND: Researchers often use survey data to study the effect of health and social variables on physician use, but how self-reported physician use compares to administrative data, the gold standard, in particular within the context of multimorbidity and functional limitations remains unclear. We examine whether multimorbidity and functional limitations are related to agreement between self-reported and administrative data for physician use. METHODS: Cross-sectional data from 52,854 Ontario participants of the Canadian Community Health Survey linked to administrative data were used to assess agreement on physician use. The number of general practitioner (GP) and specialist visits in the previous year was assessed using both data sources; multimorbidity and functional limitation were from self-report. RESULTS: Fewer participants self-reported GP visits (84.8%) compared to administrative data (89.1%), but more self-reported specialist visits (69.2% vs. 64.9%). Sensitivity was higher for GP visits (≥90% for all multimorbidity levels) compared to specialist visits (approximately 75% for 0 to 90% for 4+ chronic conditions). Specificity started higher for GP than specialist visits but decreased more swiftly with multimorbidity level; in both cases, specificity levels fell below 50%. Functional limitations, age and sex did not impact the patterns of sensitivity and specificity seen across level of multimorbidity. CONCLUSIONS: Countries around the world collect health surveys to inform health policy and planning, but the extent to which these are linked with administrative, or similar, data are limited. Our study illustrates the potential for misclassification of physician use in self-report data and the need for sensitivity analyses or other corrections.

The use of weighted blankets as a novel approach for treatment of persistent vocalizations in late stage dementia.

This study explored the use of weighted blankets as a non-pharmacological treatment for persistent vocalizations in late stage dementia. A weighted blanket was applied to three individuals with a diagnosis of dementia who had frequent and intense persistent vocalizations which were not responsive to other treatment modalities and necessitated in-patient hospitalization within a specialized behavioural unit. The evaluation found a non-statistically significant reduction in the duration of persistent vocalizations during the ten-minute application of the weighted blanket and a statistically significant reduction in the duration of persistent vocalizations during the ten minutes following the application of the weighted blanket. The use of weighted blankets may therefore be a promising non-pharmacological intervention for the treatment of persistent vocalizations in late stage dementia.

Study protocol for a hospital-to-home transitional care intervention for older adults with multiple chronic conditions and depressive symptoms: a pragmatic effectiveness-implementation trial.

BACKGROUND: Older adults (> 65 years) with multiple chronic conditions (MCC) and depressive symptoms experience frequent transitions between hospital and home. Care transitions for this population are often poorly coordinated and fragmented, resulting in increased readmission rates, adverse medical events, decreased patient satisfaction and safety, and increased caregiver burden. There is a dearth of evidence on best practices in the provision of transitional care for older adults with MCC and depressive symptoms transitioning from hospital-to-home. This paper presents a protocol for a two-armed, multi-site pragmatic effectiveness-implementation trial of Community Assets Supporting Transitions (CAST), an evidence-informed nurse-led six-month intervention that supports older adults with MCC and depressive symptoms transitioning from hospital-to-home. The Collaborative Intervention Planning Framework is being used to engage patients and other key stakeholders in the implementation and evaluation of the intervention and planning for intervention scale-up to other communities. METHODS: Participants will be considered eligible if they are > 65 years, planned for discharged from hospital to the community in three Ontario locations, self-report at least two chronic conditions, and screen positive for depressive symptoms. A total of 216 eligible and consenting participants will be randomly assigned to the control (usual care) or intervention (CAST) arm. The intervention consists of tailored care delivery comprising in-home visits, telephone follow-up and system navigation support. The primary measure of effectiveness is mental health functioning of the older adult participant. Secondary outcomes include changes in physical functioning, depressive symptoms, anxiety, perceived social support, patient experience, and health and social service use and cost, from baseline to 6- and 12-months. Caregivers will be assessed for caregiver strain, depressive symptoms, anxiety, health-related quality of life, and health and social service use and costs. Descriptive and qualitative data from older adult and caregiver participants, and the nurse interventionists will be used to examine implementation of the intervention, how the intervention is adapted within each study region, and its potential for sustainability and scalability to other jurisdictions. DISCUSSION: A nurse-led transitional care strategy may provide a feasible and effective means for improving health outcomes and patient/caregiver experience and reduce service use and costs in this vulnerable population. TRIAL REGISTRATION: # NCT03157999 . Registration Date: April 4, 2017.

Effectiveness of a community program for older adults with type 2 diabetes and multimorbidity: a pragmatic randomized controlled trial.

BACKGROUND: Type II diabetes mellitus (T2DM) affects upwards of 25% of Canadian older adults and is associated with high comorbidity and burden. Studies show that lifestyle factors and self-management are associated with improved health outcomes, but many studies lack rigour or exclude older adults, particularly those with multimorbidity. More evidence is needed on the effectiveness of community-based self-management programs in older adults with T2DM and multimorbidity. The study purpose is to evaluate the effect of a community-based intervention versus usual care on physical functioning, mental health, depressive symptoms, anxiety, self-efficacy, self-management, and healthcare costs in older adults with T2DM and 2 or more comorbidities. METHODS: Community-living older adults with T2DM and two or more chronic conditions were recruited from three Primary Care Networks (PCNs) in Alberta, Canada. Participants were randomly allocated to the intervention or control group in this pragmatic randomized controlled trial comparing the intervention to usual care. The intervention involved up to three in-home visits, a monthly group wellness program, monthly case conferencing, and care coordination. The primary outcome was physical functioning. Secondary outcomes included mental functioning, anxiety, depressive symptoms, self-efficacy, self-management, and the cost of healthcare service use. Intention-to-treat analysis was performed using ANCOVA modeling. RESULTS: Of 132 enrolled participants (70-Intervention, 62-Control), 42% were 75 years or older, 55% were female, and over 75% had at least six chronic conditions (in addition to T2DM). No significant group differences were seen for the baseline to six-month change in physical functioning (mean difference: -0.74; 95% CI: - 3.22, 1.74; p-value: 0.56), mental functioning (mean difference: 1.24; 95% CI: - 1.12, 3.60; p-value: 0.30), or other secondary outcomes.. CONCLUSION: No significant group differences were seen for the primary outcome, physical functioning (PCS). Program implementation, baseline differences between study arms and chronic disease management services that are part of usual care may have contributed to the modest study results. Fruitful areas for future research include capturing clinical outcome measures and exploring the impact of varying the type and intensity of key intervention components such as exercise and diet. TRIAL REGISTRATION: NCT02158741 Date of registration: June 9, 2014.

Insights on multimorbidity and associated health service use and costs from three population-based studies of older adults in Ontario with diabetes, dementia and stroke.

BACKGROUND: Most studies that examine comorbidity and its impact on health service utilization focus on a single index-condition and are published in disease-specific journals, which limit opportunities to identify patterns across conditions/disciplines. These comparisons are further complicated by the impact of using different study designs, multimorbidity definitions and data sources. The aim of this paper is to share insights on multimorbidity and associated health services use and costs by reflecting on the common patterns across 3 parallel studies in distinct disease cohorts (diabetes, dementia, and stroke) that used the same study design and were conducted in the same health jurisdiction over the same time period. METHODS: We present findings that lend to broader Insights regarding multimorbidity based on the relationship between comorbidity and health service use and costs seen across three distinct disease cohorts. These cohorts were originally created using multiple linked administrative databases to identify community-dwelling residents of Ontario, Canada with one of diabetes, dementia, or stroke in 2008 and each was followed for health service use and associated costs. RESULTS: We identified 376,434 indviduals wtih diabetes, 95,399 wtih dementia, and 29,671 with stroke. Four broad insights were identified from considering the similarity in comorbidity, utilization and cost patterns across the three cohorts: 1) the most prevalent comorbidity types were hypertension and arthritis, which accounted for over 75% of comorbidity in each cohort; 2) overall utilization increased consistently with the number of comorbidities, with the vast majority of services attributed to comorbidity rather than the index conditions; 3) the biggest driver of costs for those with lower levels of comorbidity was community-based care, e.g., home care, GP visits, but at higher levels of comorbidity the driver was acute care services; 4) service-specific comorbidity and age patterns were consistent across the three cohorts. CONCLUSIONS: Despite the differences in population demographics and prevalence of the three index conditions, there are common patterns with respect to comorbidity, utilization, and costs. These common patterns may illustrate underlying needs of people with multimorbidity that are often obscured in literature that is still single disease-focused.

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.

A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis.

BACKGROUND: A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period. OBJECTIVE: This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse. METHODS: Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants' hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage. RESULTS: Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction). CONCLUSIONS: Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access. TRIAL REGISTRATION: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387.

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.

Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial.

BACKGROUND: My Tools 4 Care (MT4C) is a Web-based intervention that was developed based on the transitions theory. It is an interactive, self-administered, and portable toolkit containing six main sections intended to support carers of community-living persons with Alzheimer's disease and related dementia and multiple chronic conditions through their transition experiences. OBJECTIVE: The objective of our study was to evaluate the effectiveness of MT4C with respect to increasing hope, self-efficacy, and health-related quality of life in carers of community-living older persons with Alzheimer's disease and related dementia and multiple chronic conditions. METHODS: A multisite, pragmatic, mixed methods, longitudinal, repeated-measures, randomized controlled trial was conducted between June 2015 and April 2017. Eligible participants were randomized into either treatment (MT4C) or educational control groups. Following baseline measures, carers in the treatment group received 3 months of password-protected access to MT4C. Trained research assistants collected data from participants via phone on hope (Herth Hope Index [HHI]), self-efficacy (General Self-Efficacy Scale), and health-related quality of life (Short Form-12 item [version 2] health survey; SF-12v2) at baseline, 1, 3, and 6 months. The use and cost of health and social services (Health and Social Services Utilization Inventory) among participants were measured at baseline, 3, and 6 months. Analysis of covariance was used to identify group differences at 3 months, and generalized estimating equations were used to identify group differences over time. RESULTS: A total of 199 carers participated in this study, with 101 participants in the treatment group and 98 in the educational control group. Of all, 23% (45/199) participants withdrew during the study for various reasons, including institutionalization or death of the person with dementia and lack of time from the carer. In the treatment group, 73% (74/101) carers used MT4C at least once over the 3-month period. No significant differences in the primary outcome measure (mental component summary score from the SF-12v2) by group or time were noted at 3 months; however, significant differences were evident for HHI-factor 2 (P=.01), with higher hope scores in the treatment group than in the control group. General estimating equations showed no statistically significant group differences in terms of mental component summary score at all time points. Attrition and the fact that not all carers in the treatment group used MT4C may explain the absence of statistically significant results for the main outcome variable. CONCLUSIONS: Despite no significant differences between groups in terms of the primary outcome variable (mental component score), the significant differences in terms of one of the hope factors suggest that MT4C had a positive influence on the lives of participants. TRIAL REGISTRATION: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 (Archived by Webcite at http://www.webcitation.org/708oFCR8h).

Amidase Activity of AmiC Controls Cell Separation and Stem Peptide Release and Is Enhanced by NlpD in Neisseria gonorrhoeae.

The human-restricted pathogen Neisseria gonorrhoeae encodes a single N-acetylmuramyl-l-alanine amidase involved in cell separation (AmiC), as compared with three largely redundant cell separation amidases found in Escherichia coli (AmiA, AmiB, and AmiC). Deletion of amiC from N. gonorrhoeae results in severely impaired cell separation and altered peptidoglycan (PG) fragment release, but little else is known about how AmiC functions in gonococci. Here, we demonstrated that gonococcal AmiC can act on macromolecular PG to liberate cross-linked and non-cross-linked peptides indicative of amidase activity, and we provided the first evidence that a cell separation amidase can utilize a small synthetic PG fragment as substrate (GlcNAc-MurNAc(pentapeptide)-GlcNAc-MurNAc(pentapeptide)). An investigation of two residues in the active site of AmiC revealed that Glu-229 is critical for both normal cell separation and the release of PG fragments by gonococci during growth. In contrast, Gln-316 has an autoinhibitory role, and its mutation to lysine resulted in an AmiC with increased enzymatic activity on macromolecular PG and on the synthetic PG derivative. Curiously, the same Q316K mutation that increased AmiC activity also resulted in cell separation and PG fragment release defects, indicating that activation state is not the only factor determining normal AmiC activity. In addition to displaying high basal activity on PG, gonococcal AmiC can utilize metal ions other than the zinc cofactor typically used by cell separation amidases, potentially protecting its ability to function in zinc-limiting environments. Thus gonococcal AmiC has distinct differences from related enzymes, and these studies revealed parameters for how AmiC functions in cell separation and PG fragment release.

Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers.

BACKGROUND: Family carers of older persons with Alzheimer's' disease and related dementia (ADRD) and multiple chronic conditions (MCC) experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical health, and mental health. An online intervention (My Tools 4 Care) was developed for family carers of persons with ADRD and MCC living at home, with the aim of supporting these carers through transitions and increasing their self-efficacy, hope, and health related quality of life (HRQoL). This study will evaluate My Tools 4 Care (MT4C) by asking the following research questions: 1. Does use of MT4C result in a 3 month (immediately post intervention) and 6-month (3 months after intervention) increase in HRQoL, self-efficacy, and hope, in carers of persons with ADRD and MCC compared to an educational control group? 2. Does use of MT4C help carers of community-dwelling older adults with ADRD and MCC deal with significant changes they experience as carers? and 3. Are the effects/benefits of the MT4C intervention achieved at no additional cost compared to an educational control group? METHODS/DESIGN: Using a pragmatic mixed methods randomized controlled trial design, 180 family carers of community dwelling older persons (65 years of age and older) with ADRD and MCC will participate in the study. Data will be collected from the intervention and an educational control group at four time points: baseline, 1 month, 3 and 6 months. We expect to find that family carers using MT4C will show greater improvement in hope, self-efficacy and HRQoL, at no additional cost from a societal perspective, compared to those in the educational control group. General estimating equations will be used to determine differences between groups and over time. DISCUSSION: Data collection began in Ontario and Alberta Canada in June 2015 and is expected to be completed in June 2017. The results will inform policy and practice as MT4C can be easily revised for local contexts and is scalable in terms of posting on websites such as those hosted by the Alzheimer Society. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02428387.

Patterns of health service use in community living older adults with dementia and comorbid conditions: a population-based retrospective cohort study in Ontario, Canada.

BACKGROUND: Patients with dementia have increased healthcare utilization and often have comorbid chronic conditions. It is not clear if the increase in utilization is driven by dementia, the comorbidities or both. The objective of this study was to describe the number and types of comorbid conditions in a population-based cohort of older adults with dementia and how the level of comorbidity impacts dementia-related and non-dementia-related health service utilization. METHODS: This study is a retrospective cohort study using multiple linked administrative databases to examine health service utilization and costs of 100,630 community-living older adults living with pre-existing dementia in Ontario, Canada. Comorbid conditions and health service utilization were measured using administrative data (physician visits, emergency department visits, hospitalizations, and homecare contacts). RESULTS: Nearly all, 96.3 %, had at least one comorbid condition, while 18.4 % had five or more comorbid conditions. The most common comorbid conditions were hypertension (77.8 %), and arthritis (66.2 %). All types of utilization increased consistently with the number of comorbid conditions. The average number of dementia-related services tended to be similar across all levels of comorbidity while the average number of non-dementia related visits tended to increase with the level of comorbidity. CONCLUSIONS: Comorbidities in community-living older adults with dementia are common and account for a substantial proportion of health service use and costs in this population. Our results suggest that comprehensive programs that take a holistic view to identify the needs of patients in the context of other comorbidities are required for persons with dementia living in the community.