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Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes

Background: Quality of life is important especially in incurable illness. In dementia, we often need proxy reports of quality of life, but we know little about how individuals make their judgements. In care homes, proxies may be staff providing care or relatives, but staff rate quality of life differently to family. To our knowledge, no one has explored this qualitatively, so we used qualitative interviews to explore why staff and family think differently about quality of life. Methods: We interviewed 12 staff and 12 relatives who had provided proxy ratings of quality of life for people living with dementia in care homes in the Managing Agitation and Raising Quality of life (MARQUE) study. We asked why they had rated the resident's quality of life as “Very Good, Good, Fair, or Poor.” Using thematic analysis, we compared staff and relatives' proxy responses. Results: For staff, the concept of quality of life was often viewed synonymously with quality of care, influenced by their sense of responsibility and informed by their professional understanding. For relatives, quality of life was often judged in relation to how the person with dementia lived before diagnosis and was influenced by their perception of loss for the person with dementia and their own adjustment. Conclusions: Proxy reports were influenced by rater's own contexts and experiences. This can enhance our understanding of widely used research tools, aid the evaluation of intervention outcomes, and indicate possible targets for improving perceived and actual quality of life of people with dementia

A critical review of the long-term disability outcomes following hip fracture

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Background: Hip fractures are an increasingly common consequence of falls in older people that are associated with a high risk of death and reduced function. This review aims to quantify the impact of hip fracture on older people’s abilities and quality of life over the long term. Methods: Studies were identified through PubMed and Scopus searches and contact with experts. Cohort studies of hip fracture patients reporting outcomes 3 months post-fracture or longer were included for review. Outcomes of mobility, participation in domestic and community activities, health, accommodation or quality of life were categorised according to the World Health Organization’s International Classification of Functioning and synthesised narratively. Risk of bias was assessed according to four items from the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement. Results: Thirty-eight studies from 42 publications were included for review. Most followed a clearly defined sample from the time of fracture. Hip fracture survivors experienced significantly worse mobility, independence in function, health, quality of life and higher rates of institutionalisation than age matched controls. The bulk of recovery of walking ability and activities for daily living occurred within 6 months after fracture. Between 40 and 60 % of study participants recovered their pre-fracture level of mobility and ability to perform instrumental activities of daily living, while 40–70 % regained their level of independence for basic activities of daily living. For people independent in self-care pre-fracture, 20–60 % required assistance for various tasks 1 and 2 years after fracture. Fewer people living in residential care recovered their level of function than those living in the community. In Western nations, 10–20 % of hip fracture patients are institutionalised following fracture. Few studies reported impact on participation in domestic, community, social and civic life. Conclusions: Hip fracture has a substantial impact on older peoples’ medium- to longer-term abilities, function, quality of life and accommodation. These studies indicate the range of current outcomes rather than potential improvements with different interventional approaches. Future studies should measure impact on life participation and determine the proportion of people that regain their pre-fracture level of functioning to investigate strategies for improving these important outcomes. Keywords: Hip fracture, Recovery of function, Mobility limitation, Activities of daily living, Institutionalisation, Quality of life, Osteoporosis, Aged, Longterm care, Review Abbreviations: ADL, Activities of daily living; HR, Hazard ratio; IADL, Instrumental activities of daily living; ICF, International classification of functioning, disability and health; OR, Odds ratio; QALY, Quality adjusted life year; QOL, Quality of life; US, United States; WHO, World Health Organizatio

Health-related quality of life in Huntington’s Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington’s Disease health-related quality of life questionnaire (HDQoL)

Huntington’s disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patient–proxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patient–proxy pairs completed the Huntington’s disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxy–patient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxies’ ratings were at a similar level to patients’ self-ratings on an overall Summary Score and on most of the six Specific Scales of the HDQoL. On the Specific Hopes and Worries Scale, proxies on average rated HrQoL as better than patients’ self-ratings, while on both the Specific Cognitive Scale and Specific Physical and Functional Scale proxies tended to rate HrQoL more poorly than patients themselves. The patient’s disease stage and mental wellbeing (SF-12 Mental Component scale) were the two factors that primarily affected proxy assessment. Proxy scores were strongly correlated with patients’ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patient–proxy correlation was lower for patients at moderate stages of HD compared to patients at early and advanced stages. The proxy report version of the HDQoL is a useful complementary tool to self-assessment, and a promising alternative when individual patients with advanced HD are unable to self-report

Hip fracture risk assessment: Artificial neural network outperforms conditional logistic regression in an age- and sex-matched case control study

Copyright @ 2013 Tseng et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Background - Osteoporotic hip fractures with a significant morbidity and excess mortality among the elderly have imposed huge health and economic burdens on societies worldwide. In this age- and sex-matched case control study, we examined the risk factors of hip fractures and assessed the fracture risk by conditional logistic regression (CLR) and ensemble artificial neural network (ANN). The performances of these two classifiers were compared. Methods - The study population consisted of 217 pairs (149 women and 68 men) of fractures and controls with an age older than 60 years. All the participants were interviewed with the same standardized questionnaire including questions on 66 risk factors in 12 categories. Univariate CLR analysis was initially conducted to examine the unadjusted odds ratio of all potential risk factors. The significant risk factors were then tested by multivariate analyses. For fracture risk assessment, the participants were randomly divided into modeling and testing datasets for 10-fold cross validation analyses. The predicting models built by CLR and ANN in modeling datasets were applied to testing datasets for generalization study. The performances, including discrimination and calibration, were compared with non-parametric Wilcoxon tests. Results - In univariate CLR analyses, 16 variables achieved significant level, and six of them remained significant in multivariate analyses, including low T score, low BMI, low MMSE score, milk intake, walking difficulty, and significant fall at home. For discrimination, ANN outperformed CLR in both 16- and 6-variable analyses in modeling and testing datasets (p?<?0.005). For calibration, ANN outperformed CLR only in 16-variable analyses in modeling and testing datasets (p?=?0.013 and 0.047, respectively). Conclusions - The risk factors of hip fracture are more personal than environmental. With adequate model construction, ANN may outperform CLR in both discrimination and calibration. ANN seems to have not been developed to its full potential and efforts should be made to improve its performance.National Health Research Institutes in Taiwa

Factors associated with informant-reported cognitive decline in older adults: a systemised literature review

Background Dementia diagnoses are typically made where there is a significant, progressive decline in cognitive functioning. Evidence of such decline is increasingly established through information provided by informants. However, some studies demonstrate that informant reports may not always be accurate and may be biased by extraneous factors. This review aimed to elucidate factors that have been identified as potentially having some influence on informant reports of cognitive decline. Method A search of PsychInfo, ASSIA, PubMed and Web of Science databases identified 13 peer-reviewed studies that met criteria for inclusion in the review. Results Reviewed studies provide some evidence for associations between informant-reported cognitive decline and demographic characteristics (patient age, education, ethnicity and informant gender), clinical factors (dementia severity, diagnosis, behavioural disturbance, everyday functioning) and psychological factors (patient depressive symptoms and neuroticism, informant psychological distress and burden). Several methodological limitations of the evidence base were identified. Conclusion Findings suggest that informant-reported cognitive decline may not always be wholly reliable in that information holds potential to be influenced by both patient and informant characteristics. Clinical and empirical implications are discussed

Loss of life years after a hip fracture: Effects of age and sex

Background Patients with a hip fracture have a high mortality; however, it is not clear how large the loss of life-years is over an extended observation period