Are older long term care residents accurately prognosticated and consequently informed about their prognosis? Results from SHELTER study data in 5 European countries.

BACKGROUND: Informing residents in long term care facilities (LTCFs) about their prognosis can help them prepare for the end of life. This study aimed to examine which proportion of European LTCF residents, close to death, are accurately prognosticated and consequently informed about their prognosis; and to examine factors related to accurate prognostication and discussion of prognosis. METHODS: A subsample of SHELTER study data was used, consisting of: 500 residents from 5 European countries, who died within 6 months after their last assessment, and had a valid answer on the item 'End stage disease, 6 or fewer months to live'. This item was used to indicate whether an accurate prognosis was established and discussed with residents. Generalized estimating equations were used to examine factors related to establishment and discussion of accurate prognosis. RESULTS: 86.4% of residents close to death did not receive an accurate prognosis. Residents with cancer; fatigue; dehydration; and normal mode of nutritional intake were more likely to have an accurate prognosis established and discussed. Accurate prognostication and prognosis discussion was less likely for residents who: had a diagnosis under 'other'; initiated interactions; and residents from Germany, Italy and the Netherlands. CONCLUSIONS: The great majority of residents close to death did not receive an accurate prognosis. Prognostication tools might help clinicians to increase their prognostic accuracy and communication training might help to discuss prognosis with residents.

Documenting Routinely What Matters to People: Standardized Headings for Health Records of Patients with Chronic Health Conditions.

OBJECTIVE: Specifying the content in electronic health records (EHRs) through standardized headings based on international reference classifications will facilitate their semantic interoperability. The objective of this study was to specify potential chapter headings for EHRs aligned with the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) based on the perspectives of people living with chronic health conditions, carers, and professionals. METHODS: A multistage process was established including (1) a patient workshop, (2) an online survey of both patients and carers, and (3) an online consultation with patient and professional bodies. The ICF served as a starting point. Based on the first stage, a first draft of the headings was developed and further refined based on the feedback at each stage. We examined in a fourth step whether items from existing assessment tools support the operationalization of the identified headings. Therefore, we used the WHO Disability Assessment Schedule 2.0 (WHODAS2.0), a patient-reported instrument, and interRAI, a clinician-administered instrument. RESULTS: The first workshop was attended by eight people, the survey was completed by 250 persons, and the online consultation received detailed feedback by 18 professional bodies. This study resulted in 16 potential chapter headings for EHRs which capture aspects related to the body, such as emotions, motivation, sleep, and memory or thoughts, to being involved in social life, such as mobility, social activities, and finances, as well as to the care process, such as understanding of health issues and treatment or care priorities and goals. When using the WHODAS2.0 and interRAI together, they capture all except one of the proposed headings. CONCLUSION: The identified headings provide a high level structure for the standardized recording, use, and sharing of information. Once implemented, these headings have the potential to facilitate the delivery of personalized care planning for patients with long-term health problems.

The calculation of quality indicators for long term care facilities in 8 countries (SHELTER project).

BACKGROUND: Performance indicators in the long term care sector are important to evaluate the efficiency and quality of care delivery. We are, however, still far from being able to refer to a common set of indicators at the European level.We therefore demonstrate the calculation of Long Term Care Facility Quality Indicators (LTCFQIs) from data of the European Services and Health for Elderly in Long TERm Care (SHELTER) project. We explain how risk factors are taken into account and show how LTC facilities at facility and country level can be compared on quality of care using thresholds and a Quality Indicator sum measure. METHODS: The indicators of Long Term Care Facility quality of care are calculated based on methods that have been developed in the US. The values of these Quality Indicators (QIs) are risk adjusted on the basis of covariates resulting from logistic regression analysis on each of the QIs. To enhance the comparison of QIs between facilities and countries we have used the method of percentile thresholds and developed a QI sum measure based on percentile outcomes. RESULTS: In SHELTER data have been collected with the interRAI Long Term Care Facility instrument (interRAI-LTCF). The data came from LTC facilities in 7 European countries and Israel. The unadjusted values of the LTCF Quality Indicators differ considerably between facilities in the 8 countries. After risk adjustment the differences are less, but still considerable. Our QI sum measure facilitates the overall comparison of quality of care between facilities and countries. CONCLUSIONS: With quality indicators based on assessments with the interRAI LTCF instrument quality of care between LTC facilities in and across nations can be adequately compared.

Assessment of nursing home residents in Europe: the Services and Health for Elderly in Long TERm care (SHELTER) study.

BACKGROUND: Aims of the present study are the following: 1. to describe the rationale and methodology of the Services and Health for Elderly in Long TERm care (SHELTER) study, a project funded by the European Union, aimed at implementing the interRAI instrument for Long Term Care Facilities (interRAI LTCF) as a tool to assess and gather uniform information about nursing home (NH) residents across different health systems in European countries; 2. to present the results about the test-retest and inter-rater reliability of the interRAI LTCF instrument translated into the languages of participating countries; 3 to illustrate the characteristics of NH residents at study entry. METHODS: A 12 months prospective cohort study was conducted in 57 NH in 7 EU countries (Czech Republic, England, Finland, France, Germany, Italy, The Netherlands) and 1 non EU country (Israel). Weighted kappa coefficients were used to evaluate the reliability of interRAI LTCF items. RESULTS: Mean age of 4156 residents entering the study was 83.4 ± 9.4 years, 73% were female. ADL disability and cognitive impairment was observed in 81.3% and 68.0% of residents, respectively. Clinical complexity of residents was confirmed by a high prevalence of behavioral symptoms (27.5% of residents), falls (18.6%), pressure ulcers (10.4%), pain (36.0%) and urinary incontinence (73.5%). Overall, 197 of the 198 the items tested met or exceeded standard cut-offs for acceptable test-retest and inter-rater reliability after translation into the target languages. CONCLUSION: The interRAI LTCF appears to be a reliable instrument. It enables the creation of databases that can be used to govern the provision of long-term care across different health systems in Europe, to answer relevant research and policy questions and to compare characteristics of NH residents across countries, languages and cultures.

Polypharmacy in nursing home in Europe: results from the SHELTER study.

BACKGROUND: This study assesses prevalence and patients characteristics related to polypharmacy in a sample of nursing home residents. METHODS: We conducted a cross-sectional analysis on 4,023 nursing home residents participating to the Services and Health for Elderly in Long TERm care (SHELTER) project, a study collecting information on residents admitted to 57 nursing home in 8 countries. Data were collected using the interRAI instrument for long-term care facilities. Polypharmacy status was categorized in 3 groups: non-polypharmacy (0-4 drugs), polypharmacy (5-9 drugs) and excessive polypharmacy (≥ 10 drugs). RESULTS: Polypharmacy was observed in 2,000 (49.7%) residents and excessive polypharmacy in 979 (24.3%) residents. As compared with non-polypharmacy, excessive polypharmacy was directly associated not only with presence of chronic diseases but also with depression (odds ratio [OR] 1.81; 95% confidence interval [CI] 1.38-2.37), pain (OR 2.31; 95% CI 1.80-2.97), dyspnoea (OR 2.29; 95% CI 1.61-3.27), and gastrointestinal symptoms (OR 1.73; 95% CI 1.35-2.21). An inverse association with excessive polypharmacy was shown for age (OR for 10 years increment 0.85; 95% CI 0.74-0.96), activities of daily living disability (OR for assistance required vs independent 0.90; 95% CI 0.64-1.26; OR for dependent vs independent 0.59; 95% CI 0.40-0.86), and cognitive impairment (OR for mild or moderate vs intact 0.64; 95% CI 0.47-0.88; OR for severe vs intact 0.39; 95% CI 0.26-0.57). CONCLUSIONS: Polypharmacy and excessive polypharmacy are common among nursing home residents in Europe. Determinants of polypharmacy status include not only comorbidity but also specific symptoms, age, functional, and cognitive status.

Identifying elderly depression using the Depression Rating Scale as part of comprehensive standardised care assessment in nursing homes.

OBJECTIVES: This study used data from the SHELTER (Services and Health for Elderly in Long TERm care) project to explore the benefits of using the Depression Rating Scale (DRS) as part of a standardised needs assessment in UK nursing homes, including a statistical method of effectively identifying characteristics linking to residents' depression. METHOD: About 499 residents in nine nursing homes in south-east England were assessed with interRAI Long Term Care Facilities (interRAI LTCF), a standardised assessment tool containing the validated DRS residents who scored 3 or more on the DRS were considered 'might suffer from depression'. A list of characteristics associated with depression was then examined using bivariate analysis and logistic regression. RESULTS: Among the 499 residents assessed, 67.5% were not depressed (DRS < 3) and 32.3% might suffer from depression (DRS ≥ 3). The final logistic model showed 'never married' (p = 0.019), 'diagnosis of COPD' (COPD, chronic obstructive pulmonary disease) (p = 0.015), 'feelings of pain' (p = 0.015) and 'trouble sleeping' (p < 0.001) were significantly associated with reporting of DRS score of 3 and more. CONCLUSION: The article argued that DRS has distinctive advantages for using in UK nursing homes where a preponderance of residents is cognitively impaired, the procedure of screening depression is not regulated and resources to treat depression is relatively scarce. This article also demonstrated how using the DRS as part of a comprehensive standardised needs assessment facilitates analysis of characteristics linking to depression, which has significant policy implications in improving care quality and management.

The use of an assessment tool in care homes.

The Minimum Data Set Resident Assessment Instrument (MDS/RAI) for Long Term Care Facilities ( Morris et al 1990 ) is a comprehensive, standardised assessment of residents' needs in long-term care developed by interRAI ( www.interrai.org ). interRAI is an international collaboration of practitioners and researchers committed to improving the care of vulnerable populations.

Patient depression and caregiver attitudes: results from The AgeD in HOme Care study.

BACKGROUND: The present cross-sectional study was aimed to evaluate the association between care recipient depression and caregiver attitudes. METHODS: Data were from The AgeD in HOme Care project, a study enrolling subjects aged >or=65 years receiving home care in Europe. Depression was diagnosed as a score >or=3 on the MDS Depression Rating Scale. Caregiver attitudes were assessed using two measures: 1) caregiver dissatisfaction (the caregiver was dissatisfied with the support received from family and friends); and 2) caregiver distress (the caregiver expressed feelings of distress, anger, or depression). RESULTS: Mean age of 3415 participants was 82.4 years, 2503 (73.3%) were women and 430 (12.6%) were depressed. Dissatisfaction was significantly more common among caregivers of depressed, compared with those of non depressed patients (32/430, 7.4% vs. 78/2985, 2.6%; p=<0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver dissatisfaction (OR: 1.84; 95% CI: 1.12-3.03). Similarly, distress was significantly more common among caregivers of depressed patients, compared with those of non depressed patients (81/430, 18.8% vs. 175/2985, 5.9%; p<0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver distress (OR: 2.41; 95% CI: 1.72-3.39). LIMITATIONS: The cross-sectional design of the study cannot provide the cause-effect relationship between depression and caregiver attitude; no data were collected on caregiver characteristics. CONCLUSIONS: Among older adults depression is associated with increased caregiver dissatisfaction and distress. Knowledge of factors influencing caregiver attitudes may be valuable to study interventions aimed to promote patient and caregiver well being.

Medical records and record-keeping standards.

The structure of medical records becomes ever more critical with the advent of electronic records. The Health Informatics Unit (HIU) of the Royal College of Physicians has two work streams in this area. The Records Standards programme is developing generic standards for all entries into medical notes and standards for the content of admission, handover and discharge records. The Information Laboratory (iLab) focuses on hospital episode statistics and their use for monitoring clinician performance. Clinician endorsement of the work is achieved through extensive consultations. Generic medical record-keeping standards are now available.

Physical activity prevented functional decline among frail community-living elderly subjects in an international observational study.

OBJECTIVES: The aims of the study were to describe the prevalence of physical activity in a sample of older adults in home care in Europe and to examine the relationship between physical activity and incident disability. STUDY DESIGN AND SETTING: Study population consisted of a random sample of 2,005 subjects aged 65 or older admitted to home care programs in 11 European Home Health Agencies who participated in AgeD in HOme Care project. Participants who reported spending 2 or more hours of physical activities in last 3 days were defined physically active. Disability performing activities of daily living was defined as the need of assistance in one or more of the following ADL: eating, dressing, transferring, mobility in bed, personal hygiene, and toileting. RESULTS: More than 50% of participants were physically active. During a median follow-up of 12 months, 370 subjects (15%) became disabled. After adjusting for age, gender, and other possible confounding variables, active subjects were significantly less likely to become disabled compared to those reporting no or very low-intensity physical activity (OR, 0.67; 95% CI 0.53-0.84). CONCLUSIONS: These findings support the possibility that physical activity has an independent effect on functional autonomy among frail and old people.

Case management and risk of nursing home admission for older adults in home care: results of the AgeD in HOme Care Study.

OBJECTIVES: To explore the relationship between a case management approach and the risk of institutionalization in a large European population of frail, old people in home care. DESIGN: Retrospective cohort study. SETTING: Eleven European countries. PARTICIPANTS: Three thousand two hundred ninety-two older adults receiving home care (mean age 82.3+/-7.3). MEASUREMENTS: Data on nursing home admission were collected every 6 months for 1 year. RESULTS: One thousand one hundred eighty-four (36%) persons received a home care program based on case management, and 2,108 (64%) received a traditional care approach (no case manager). During the 1-year follow-up, 81 of 1,184 clients (6.8%) in the case management group and 274 of 2,108 (13%) in the traditional care group were admitted to a nursing home (P<.001). After adjusting for potential confounders, the risk of nursing home admission was significantly lower for participants in the case management group than for those in a traditional care model (adjusted odds ratio=0.56, 95% confidence interval=0.43-0.63). CONCLUSION: Home care services based on a case management approach reduce risk of institutionalization and likely lower costs.

People admitted to hospital with physical disability have increased length of stay: implications for diagnosis related group re-imbursement in England.

OBJECTIVES: to assess whether measures of cognitive and physical function can explain differences in observed and healthcare resource group (HRG) predicted length of stay for patients presenting with six target conditions at admission. DESIGN: prospective observational study. SETTING: three East Kent district general hospitals. PARTICIPANTS: One thousand nine hundred and forty-two consecutive emergency admissions, from March to July 2004, with ne or more of six presenting conditions (stroke, fracture neck of femur, myocardial infarction, acute respiratory infection, chronic obstructive airways disease and falls). MAIN OUTCOME MEASURES: length of stay by physical and cognitive function score adjusted for HRG allocated at discharge and other covariates. Physical function was defined using Activities of Daily Living Hierarchy Scale and cognitive function using the Cognitive Performance Scale. RESULTS: median difference between observed and HRG predicted length of stay was 1.2 days (25th percentile estimate, 3.9; 75th percentile estimate, 10.1) for patients with high physical dependency. They stayed 40% longer (95% confidence interval 26-56%) than patients with lower physical dependency after excluding effects of HRG and other covariates. Results are not consistent for cognitive function scores, mainly because most patients had no cognitive impairment. CONCLUSIONS: these patients, presenting with conditions common in older patients, would have incurred estimated annual costs of pound 1.9 million in excess of their HRG tariff-based re-imbursement. Physical function, defined by the degree of dependency in activities of daily living, should be incorporated into HRGs to reduce the financial risk faced by acute hospital services under Payment by Results, the UK diagnosis related group re-imbursement system.

Non malignant daily pain and risk of disability among older adults in home care in Europe.

Aim of the present observational study was to evaluate the association between daily pain and incident disability in elderly subjects living in the community. We used data from the AgeD in HOme Care (AD-HOC) project, a 1 year longitudinal study enrolling subjects aged 65 or older receiving home care in 11 European countries. Daily pain was defined as any type of pain or discomfort in any part of the body manifested every day in the seven days before the baseline assessment. Disability performing activities of daily living (ADLs) was defined as the need of assistance in 1 or more of the following ADL: eating, dressing, transferring, mobility in bed, personal hygiene and toileting. Mean age of 1520 subjects participating the study was 82.1 (standard deviation 6.9) years, and 1178 (77.5%) were women and 695 (45.7%) reported daily pain at the baseline assessment. Overall, 123/825 participants (19.0%) with daily pain and 132/695 (14.9%) without daily pain reported incident disability during the 1 year follow up of the study. After adjustment for potential confounders, participants with daily pain had a significantly higher risk of developing disability, compared with other participants (hazard ratio 1.36; 95% CI: 1.05-1.78). The risk of disability increased with pain severity and with number of painful sites. In conclusion among old subjects living in the community, daily pain is associated with an increased risk of disability.

Proposal of a service delivery integration index of home care for older persons: application in several European cities.

PURPOSE: To propose an integration index of home care delivery to older persons, to study its validity and to apply it to home care services of European cities. THEORY: Home care delivery integration was based on two dimensions referring to process-centred integration and organisational structure approach. METHOD: Items considered as part of both dimensions according to an expert consensus (face validity) were extracted from a standardised questionnaire used in "Aged in Home care" (AdHoc) study to capture basic characteristics of home care services. Their summation leads to a services' delivery integration index. This index was applied to AdHoc services. A factor analysis was computed in order to empirically test the validity of the theoretical constructs. The plot of the settings was performed. RESULTS: Application of the index ranks home care services in four groups according to their score. Factor analysis identifies a first factor which opposes working arrangement within service to organisational structure bringing together provisions for social care. A second factor corresponds to basic nursing care and therapies. Internal consistency for those three domains ranges from 0.78 to 0.93. When plotting the different settings different models of service delivery appear. CONCLUSION: The proposed index shows that behind a total score several models of care delivery are hidden. Comparison of service delivery integration should take into account this heterogeneity.