Moving Towards Common Data Elements and Core Outcome Measures in Frailty Research.

With aging populations around the world, frailty is becoming more prevalent increasing the need for health systems and social systems to deliver optimal evidence based care. However, in spite of the growing number of frailty publications, high-quality evidence for decision making is often lacking. Inadequate descriptions of the populations enrolled including frailty severity and frailty conceptualization, lack of use of validated frailty assessment tools, utilization of different frailty instruments between studies, and variation in reported outcomes impairs the ability to interpret, generalize and implement the research findings. The utilization of common data elements (CDEs) and core outcome measures (COMs) in clinical trials is increasingly being adopted to address such concerns. To catalyze the development and use of CDEs and COMs for future frailty studies, the Canadian Frailty Network (www.cfn-nce.ca; CFN), a not-for-profit pan-Canadian nationally-funded research network, convened an international group of experts to examine the issue and plan the path forward. The meeting was structured to allow for an examination of current frailty evidence, ability to learn from other COMs and CDEs initiatives, discussions about specific considerations for frailty COMs and CDEs and finally the identification of the necessary steps for a COMs and CDEs consensus initiative going forward. It was agreed at the onset of the meeting that a statement based on the meeting would be published and herein we report the statement.

Implementing Frailty Measures in the Canadian Healthcare System.

Canadian healthcare is changing to include individuals living with frailty, but frailty must be better operationalized and better framed by sound data standards and policy. Frailty results from deficit accumulation in multiple body systems, with exaggerated vulnerability to external stressors. A growing consensus on defining frailty sets the stage for consensus on operationalization and widespread implementation in care settings. Frailty measurement is not yet integrated into daily clinical practice in Canada. Here, we will present how this integration might occur. We hope to demonstrate that implementation must appeal to inter-professional practice needs in different settings or circumstances. In some settings, methods for frailty case finding are expected to evolve as deemed to be most appropriate to the front-line users. In this "hands-off" approach, care providers, supported by emerging knowledge translation on frailty operationalization, would be informed by their setting and local practices to establish patterns of ad hoc case finding and component definition of frailty. This more nimble case finding strategy would be opportunistic, and would appeal to expert clinicians and self-directed teams who emphasize an individualized health care experience for their patients. In other settings, we can shape frailty case finding by building care algorithms around existing standardized practices and data repositories, leading to a systematic application of frailty measures and a more coordinated process of component definition and care protocols. Here, recommended instruments and data standards must be endorsed by health networks locally, provincially and nationally. The interRAI suite of assessment instruments has pan-Canadian standards in place and its pervasiveness makes it the most obvious starting point, especially in home care and long-term care. We anticipate the evolution of an integrated model informed by stakeholders and settings, where policy makers focus on system supports for frailty case finding, while front-line clinicians use case finding strategies to pinpoint and act on key frailty components.

Comparing the care needs of people living with and without HIV in Canadian home and long-term care settings.

BACKGROUND: With the advent of highly active antiretroviral therapy (HAART), HIV has become a manageable chronic infection and individuals with it are living longer. Older individuals with HIV will begin to seek services across the continuum of health care. Whether their care needs differ from those who are HIV negative has not been well-characterized. OBJECTIVES: To compare the demographic characteristics, chronic conditions, presence of infections, and mental health issues among HIV-positive versus HIV-negative individuals in home care, long-term care and complex continuing care settings across Canada. METHODS: This cross-sectional study used interRAI data to compare characteristics of HIV-positive and HIV-negative individuals in long-term care, complex continuing care and home care settings. Chi-square analyses explored differences between groups on co-infections, chronic disease and mental health issues. RESULTS: Data from 1,200,073 people were analyzed of whom 1,608 (0.13%) had HIV. Overall, HIV-positive individuals had more co-infections but fewer chronic diseases than their HIV-negative counterparts. Depression, social isolation and the use of psychotropic medications were generally more prevalent in the HIV-positive cohort. CONCLUSION: People living with HIV make up a small cohort of people with complex needs in home care and institutional settings and their care needs differ from those who are HIV negative. As HIV-positive people age, a better understanding of the context in which these issues are experienced will support appropriate interventions.

A comprehensive profile of the sociodemographic, psychosocial and health characteristics of Ontario home care clients with dementia.

INTRODUCTION: This study provides a comprehensive summary of the sociodemographic, psychosocial and health characteristics of a large population-based cohort of Ontario home care clients (aged 50 years and over) with dementia and examines the variation in these characteristics in those with co-existing neurological conditions. METHODS: Clients were assessed with the Resident Assessment Instrument-Home Care (RAI-HC) between January 2003 and December 2010. Descriptive analyses examined the distribution of these characteristics among clients with dementia relative to several comparison groups, as well as clients with other recorded neurological conditions. RESULTS: Approximately 22% of clients (n=104 802) had a diagnosis of dementia (average age 83 years, 64% female) and about one in four within this group had a co-existing neurological condition (most commonly stroke or Parkinson disease). About 43% of those with dementia did not live with their primary caregiver. Relative to several comparison groups, clients with dementia showed considerably higher levels of cognitive and functional impairment, aggression, anxiety, wandering, hallucinations/delusions, caregiver distress and a greater risk for institutionalization. Conversely, they showed a lower prevalence of several chronic conditions and lower levels of recent health service use. Depressive symptoms were relatively common in the dementia and other neurological groups. CONCLUSION: Clients with co-existing neurological conditions exhibited unique clinical profiles illustrating the need for tailored and flexible home care services and enhanced caregiver assistance programs.

TITRE: Profil complet des caractéristiques sociodémographiques, psychosociales et sanitaires des clients des soins à domicile atteints de démence en Ontario. INTRODUCTION: Cette étude fournit une synthèse des caractéristiques sociodémographiques, psychosociales et sanitaires d'une vaste cohorte représentative des clients des soins à domicile en Ontario (âgés de 50 ans ou plus) atteints de démence et elle examine les variations de ces caractéristiques chez les clients atteints de maladies neurologiques concomitantes. MÉTHODOLOGIE: Les clients ont été évalués à l'aide de l'Instrument d'évaluation des résidents ­ Soins à domicile (RAI-HC) entre janvier 2003 et décembre 2010. Les analyses descriptives fournissent la répartition de ces caractéristiques en comparant les clients atteints de démence et ceux de plusieurs autres groupes ainsi que ceux atteints d'autres maladies neurologiques documentées. RÉSULTATS: Environ 22 % des clients (n = 104 802) avaient reçu un diagnostic de démence (âge moyen de 83 ans, 64 % de femmes) et un sur quatre parmi eux était atteint d'une maladie neurologique concomitante (AVC ou maladie de Parkinson la plupart du temps). Environ 43 % des clients atteints de démence n'habitaient pas avec leur principal aidant. Par rapport aux clients des groupes de comparaison, les clients atteints de démence présentaient des taux considérablement plus élevés de déficit cognitif et fonctionnel, d'agressivité, d'anxiété, d'errance et d'hallucinations ou de délire, avaient plus souvent un aidant en détresse et couraient un plus grand risque de placement en établissement. Par contre, ils étaient moins souvent atteints de diverses maladies chroniques et étaient moins nombreux à avoir eu recours à des services de santé récemment. Les symptômes de dépression étaient relativement fréquents chez les clients atteints de démence et chez ceux atteints d'une autre maladie neurologique. CONCLUSION: Les clients atteints de maladies neurologiques concomitantes présentaient des profils cliniques bien particuliers illustrant la nécessité de personnaliser et d'assouplir les services de soins à domicile et d'améliorer les programmes de soutien pour les aidants.

A profile of older community-dwelling home care clients with heart failure in Ontario.

INTRODUCTION: The aging of the Canadian population is associated with a rising burden of heart failure (HF), a condition associated with significant morbidity, mortality and health service use. METHODS: We used data from the Ontario Resident Assessment Instrument-Home Care database for all long-stay home care clients aged 65 years or older to (1) describe the demographic and clinical characteristics of home care clients with HF and (2) examine service use among home care clients with HF to promote management at home with appropriate services. RESULTS: Compared with other home care clients, HF clients exhibit more health instability, take more medications, experience more comorbid conditions and receive significantly more nursing, homemaking and meal services. They are hospitalized more frequently, have significantly more emergency department visits and use more emergent care. DISCUSSION: HF clients are a more complex group than home care clients in general. Patient self-care must be tailored to the clinical characteristics, patterns of service use and barriers to self-care of the client. This is particularly true for older, frail and medically complex HF patients, many of whom require home care services. This work provides a background upon which to base initiatives to help these higher-needs clients manage their HF at home with appropriate support and services.

A care planning strategy for traumatic life events in community mental health and inpatient psychiatry based on the InterRAI assessment instruments.

Clinical triggers from the Traumatic Life Events Clinical Assessment Protocol (CAP) identify individuals who might benefit from formal services or additional supports targeted towards trauma treatment. The Traumatic Life Events CAP identifies two groups who have experienced one or more potentially traumatic life events: (1) those who are in immediate danger due to current abuse/criminal victimization; (2) those who have experienced one or more traumatic events that evoked an intense sense of horror or fear. Descriptive analysis was conducted across psychiatric hospital and community-based mental health service settings to compare the two triggered groups to those without traumatic experiences (the not-triggered group). The Traumatic Life Events CAP identified subpopulations with unrecognized and untreated traumatic-stress-related symptoms, which are of great concern for those in community-based mental health services who are in immediate danger due to current abuse.

Validating the Mental Health Assessment Protocols (MHAPs) in the Resident Assessment Instrument Mental Health (RAI-MH).

For persons with mental illness and addictions, comprehensive assessment of their strengths, preferences and needs is central to person-centred care planning. In this study, the validity of the Mental Health Assessment Protocols (MHAPs) embedded in the Resident Assessment Instrument Mental Health instrument (the mandated assessment system for Ontario adult inpatient psychiatry) is examined, and triggering rates are compared in inpatient and community-based mental health settings. The sample is based on adults admitted to a psychiatric facility (n = 963) and to community mental health programmes (n = 1505) participating in the study. An international panel of mental health experts further evaluated study results. Among the 27 MHAPs, all but one had sensitivity rates above 80%, and the specificity was over 80% for 74% of the MHAPs. The expert panel found that the MHAPs worked well and could be used to support mental health care. The present study found that the MHAPs are valid measures, though more complex triggering algorithms capable of differentiating individuals based on outcomes were suggested to enhance their clinical relevance to care planning. Further, the use of compatible instrumentation in community-based mental health settings was promoted to enhance continuity of care.

A review of evidence on the reliability and validity of Minimum Data Set data.

This paper reviews the reliability and validity of the Minimum Data Set (MDS) assessment, which is being used increasingly in Canadian nursing homes and continuing care facilities. The central issues that surround the development and implementation of a standardized assessment such as the MDS are presented, including implications for health care managers in how to approach data quality concerns. With other sectors such as home care and inpatient psychiatry using MDS for national reporting, these issues have importance in and beyond residential care management.

Traffic-related fatalities among older drivers and passengers: past and future trends.

PURPOSE OF THE STUDY: This study was initiated to forecast the number of older drivers and passengers who may be fatally injured in traffic crashes in future years. DESIGN AND METHODS: The study was based on data from the U.S. Fatality Analysis Reporting System covering the period from 1975 to 1998. Projections were based on least squares regression models. RESULTS: About 35,000 drivers and passengers died in traffic crashes each year from 1975 to 1998. Older adults (65 and older) accounted for 10% of all fatalities in 1975, 17% in 1998, and a projected 27% by 2015, the same proportion predicted for drivers and passengers aged younger than 30. On the basis of these projections, the number of fatally injured women and men aged 65 and older will increase respectively by 373% and 271% between 1975 and 2015. IMPLICATIONS: If current trends continue, the number of fatalities among older drivers and passengers and those aged younger than 30, may be equivalent early in this century. These projections call for further research into conditions that may lead to crashes involving older drivers and for the development and implementation of initiatives to curb traffic-related fatalities among older adults.

A new assessment for elders admitted to acute care: reliability of the MDS-AC.

Assessment of older people rarely includes functional domains critical for ensuring optimum outcome of treatment in acute hospital care. We report the development of a new assessment instrument, and illustrate how differences between pre-hospital and hospital admission status can be systematically evaluated using the Minimum Data Set for Acute Care (MDS-AC). Content was developed by literature review and consultation with professionals working in acute areas. Dual independent assessments were conducted on hospital in-patients in 4 countries. Inter-assessor reliability coefficients were calculated for each item. Kappa was calculated for all binary and multi-level nominal variables. Quadratically weighted Kappa was estimated for all ordinal multi-level variables. Where one level of the variable contained 90% or more of the subjects, total observed agreement is reported. Separate reliability estimates were calculated for pre-hospitalization and inpatient items. Subjects had a mean age of 78. Completion of pre-hospitalization and hospital period assessment (combined) required 20 and 30 minutes. Excluding items for which 90% or more of subjects were classified into a single scoring level, average inter-assessor reliability coefficient for the pre-hospital period items was 0.57 and for in hospital 0.58. Overall exact agreement was 83% for pre-hospitalization assessment items, and 79% for the in-hospital items. The reliability achieved in the highly unstable situation of the acute admission phase is sufficient for use in clinical care and research. Differences in pre-hospital and admission status necessary for case-mix adjusted comparison of outcomes were illustrated. Development of a means for systematically comparing changes in older people during the course of illness is of increasing importance when addressing questions of the appropriate and inappropriate use of medical technology.

[Integrated health information system based on Resident Assessment Instruments]. / Geïntegreerd gezondheidsinformatiesysteem op basis van Resident Assessment Instrumenten.

The paper explores the meaning of Resident Assessment Instruments. It gives a summary of existing RAI instruments and derived applications. It argues how all of these form the basis for an integrated health information system for "chain care" (home care, home for the elderly care, nursing home care, mental health care and acute care). The primary application of RAI systems is the assessment of client care needs, followed by an analysis of the required and administered care with the objective to make an optimal individual care plan. On the basis of RAI, however, applications have been derived for reimbursement systems, quality improvement programs, accreditation, benchmarking, best practice comparison and care eligibility systems. These applications have become possible by the development on the basis of the Minimum Data Set of RAI of outcome measures (item scores, scales and indices), case-mix classifications and quality indicators. To illustrate the possibilities of outcome measures of RAI we present a table and a figure with data of six Dutch nursing homes which shows how social engagement is related to ADL and cognition. We argue that RAI/MDS assessment instruments comprise an integrated health information system because they have consistent terminology, common core items, and a common conceptual basis in a clinical approach that emphasizes the identification of functional problems.

Long-term care funding in Canada: a policy mosaic.

When Canada was founded, health care was delegated as a provincial responsibility. Although the federal government shares a portion of health care costs, it is not directly responsible for the planning, delivery, and governance of health services. The 1984 Canada Health Act set national standards for the provision of physician and hospital services, but it does not apply to home care and long-term care facilities. Consequently, each province has established a unique approach to long-term care, resulting in a health policy mosaic. This paper examines different approaches to funding long-term care with a particular emphasis on the impacts of regionalization and of the implementation of case-mix-based funding systems.

Pain and cognitive status among nursing home residents in Canada.

BACKGROUND: There is little information available on the rates of pain in institutionalized elderly persons, and this is particularly true for Canada. OBJECTIVES: To provide information about the prevalence and clinical correlates of pain in a sample of Canadian nursing homes, to determine whether residents with cognitive impairment experience lower rates of health conditions associated with pain (eg, arthritis) than residents without cognitive impairment and to determine whether the associations (ie, odds ratios) for pain with such health conditions vary as a function of cognitive status. DESIGN: The study is based on a secondary analysis of data collected with the minimum data set (MDS 2.0). SETTING AND PARTICIPANTS: The study comprised 3195 nursing home residents in Ontario, Manitoba and Saskatchewan. SUBJECTS AND METHODS: All residents were assessed with the MDS 2.0 by trained clinicians (usually nurses). Pain was documented if it had occurred within the seven days before the assessment. Assessors were trained to look for overt signs of discomfort, such as wincing or verbalizations. Self-report ratings were obtained when possible. RESULTS: The overall prevalence of pain in this sample was 49.7%, and 23.7% of residents experienced pain daily. Persons with and persons without cognitive impairments did not differ with respect to the prevalence of conditions likely to cause pain and the associations of pain with such health conditions. Regional differences were found, with Ontario residents having a higher frequency and intensity of pain than their counterparts in Saskatchewan and Manitoba. This may be due, at least in part, to regional differences in nursing home admission criteria. CONCLUSIONS: The findings suggest that the prevalence of identified pain is lower among nursing home residents with higher levels of cognitive impairment. These results do not support the notion that this is a function of lower prevalence rates of pain-causing conditions in nursing home residents with dementia. Furthermore, the results do not support the view that residents with cognitive impairments are less sensitive to pain. This study highlights the need for more comprehensive tools to assess pain in persons with cognitive impairments. Nonetheless, the MDS may be a useful instrument for detecting pain in such populations, because it does not rely exclusively on self-report.

Development of a minimum data set-based depression rating scale for use in nursing homes.

BACKGROUND: depression is common but under-diagnosed in nursing-home residents. There is a need for a standardized screening instrument which incorporates daily observations of nursing-home staff. AIM: to develop and validate a screening instrument for depression using items from the Minimum Data Set of the Resident Assessment Instrument. METHODS: we conducted semi-structured interviews with 108 residents from two nursing homes to obtain depression ratings using the 17-item Hamilton Depression Rating Scale and the Cornell Scale for Depression in Dementia. Nursing staff completed Minimum Data Set assessments. In a randomly assigned derivation sample (n = 81), we identified Minimum Data Set mood items that were correlated (P < 0.05) with Hamilton and Cornell ratings. These items were factored using an oblique rotation to yield five conceptually distinct factors. Using linear regression, each set of factored items was regressed against Hamilton and Cornell ratings to identify a core set of seven Minimum Data Set mood items which comprise the Minimum Data Set Depression Rating Scale. We then tested the performance of the Minimum Data Set Depression Rating Scale against accepted cut-offs and psychiatric diagnoses. RESULTS: a cutpoint score of 3 on the Minimum Data Set Depression Rating Scale maximized sensitivity (94% for Hamilton, 78% for Cornell) with minimal loss of specificity (72% for Hamilton, 77% for Cornell) when tested against cut-offs for mild to moderate depression in the derivation sample. Results were similar in the validation sample. When tested against diagnoses of major or non-major depression in a subset of 82 subjects, sensitivity was 91% and specificity was 69%. Performance compared favourably with the 15-item Geriatric Depression Scale. CONCLUSION: items from the Minimum Data Set can be organized to screen for depression in nursing-home residents. Further testing of the instrument is now needed.

Targeting and quality of nursing home care. A five-nation study.

The objective of this study was to demonstrate that appropriate targeting and quality monitoring of institutional care of the elderly is possible using person-based information on residents of nursing homes. This cross-sectional study used Minimum Data Set (MDS) assessments of nursing home residents in 6 US states, Copenhagen, Reykjavik, and selected locations in Italy and Japan. The outcome measures were life expectancy at age 65, population over 65, percentage over 65's in nursing homes, and clinical characteristics of nursing home residents from a multinational database of RAI/MDS assessments. We found that Japan has the highest life expectancy, and the second lowest expenditure on health care. The United States has the highest expenditure on health care and intermediate life expectancy. Italy has the highest proportion of population over 65 and the lowest proportion of over 65's in nursing homes. Iceland, a relatively young country, has the highest proportion of over 65's in nursing homes. Residents in Italy and the United States had the most severe physical, cognitive and clinical characteristics, those in Iceland the least. There was wide variation in markers of quality of care, with no country either uniformly good or bad across multiple measures. In conclusion, headline statistics comparing nations' percentage of Gross Domestic Product (GDP) spent on health care, age structure of the population, percentage of over 65's in nursing homes and clinical characteristics bear no consistent relationship. Local policy and practice also affect quality of care. Standardized assessment enables comparisons at local, national and international levels making possible further research on targeting and the appropriate use of institutional care, thus permitting a range of efficiency measures to be developed to inform policy.

Integrated health information systems based on the RAI/MDS series of instruments.

There is a growing need for an integrated health information system to be used in community, institutional and hospital based settings. For example, changes in the structure, process and venues of service delivery mean that individuals with similar needs may be cared for in a variety of different settings. Moreover, as people make transitions from one sector of the healthcare system to another, there is a need for comparable information to ensure continuity of care and reduced assessment burden. The RAI/MDS series of assessment instruments comprise an integrated health information system because they have consistent terminology, common core items, and a common conceptual basis in a clinical approach that emphasizes the identification of functional problems.