These data suggest that quality of life in dementia is complex, and that simple proxy substitutions of discrete measures such as cognition or function are likely to miss important factors.

DEMQOL and DEMQOL-Proxy show psychometric properties that are comparable with the best available dementia-specific measures of HRQL. We recommend that DEMQOL and DEMQOL-Proxy are used together. Reliability and validity need to be confirmed in independent samples and responsiveness needs to be evaluated.

Reports are published in Health Technology Assessment (HTA) if (1) they have resulted from work for the HTA programme or, commissioned/managed through the Methodology research programme (MRP), and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors.Reviews in Health Technology Assessment are termed 'systematic' when the account of the search, appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others. HTA programmeThe HTA programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care.The research findings from the HTA programme directly influence decision-making bodies such as the National Institute for Health and Clinical Excellence (NICE) and the National Screening Committee (NSC). HTA programme findings also help to improve the quality of clinical practice in the NHS indirectly in that they form a key component of the 'National Knowledge Service'. To strengthen the evidence base for health research, the MRP oversees and implements the evolving strategy for high quality methodological research. In addition to the MRC and NIHR funding partners, the MRP takes into account the needs of other stakeholders including the devolved administrations, industry R&D, and regulatory/advisory agencies and other public bodies. The MRP funds investigator-led and needsled research proposals from across the UK. In addition to the standard MRC and RCUK terms and conditions, projects commissioned/managed by the MRP are expected to provide a detailed report on the research findings and may publish the findings in the HTA journal, if supported by NIHR funds.The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the MRC, NETSCC, the HTA programme or the Department of Health. Background: Dementia is one of the most common and serious disorders in later life and the economic and personal cost of caring for people with dementia is immense. There is a need to be able to evaluate interventions in dementia using cost-effectiveness analyses, but the generic preference-based...

Background and Purpose-Health-related quality of life (HRQL) is a key outcome in stroke clinical trials. Stroke-specific HRQL scales (eg, SS-QOL, SIS) have generally been developed with samples of stroke survivors that exclude people with aphasia. We adapted the SS-QOL for use with people with aphasia to produce the Stroke and Aphasia Quality of Life Scale (SAQOL). We report results from the psychometric evaluation of the initial 53-item SAQOL and the item-reduced SAQOL-39. Methods-We studied 95 people with long-term aphasia to evaluate the acceptability, reliability, and validity of the SAQOL and SAQOL-39 using standard psychometric methods. Results-A total of 83 of 95 (87%) were able to complete the SAQOL by self-report; their results are reported here. Results supported the reliability and validity of the overall score on the 53-item SAQOL, but there was little support for hypothesized subdomains. Using factor analysis, we derived a shorter version (SAQOL-39) that identified 4 subdomains (physical, psychosocial, communication, and energy

BackgroundThe Anti-Clot Treatment Scale (ACTS) is a 15-item patient-reported instrument of satisfaction with anticoagulant treatment. It includes a 12-item ACTS Burdens scale and a 3-item ACTS Benefits scale. Its role in clinical trials and other settings should be supported by evidence that it is both clinically meaningful and scientifically sound. The aim of the study was to evaluate the measurement performance of the ACTS (Dutch, Italian, French, German and English language versions) in patients with venous thromboembolism based on traditional psychometric methods.MethodsACTS Burdens and Benefits scale data from a large clinical trial (EINSTEIN DVT) involving 1336 people with venous thromboembolism were analysed at both the scale and item level. Five key psychometric properties were examined using traditional psychometric methods: acceptability, scaling assumptions, reliability (including internal consistency reliability, test-retest reproducibility); validity (including known groups and discriminant validity); and responsiveness. These methods of examination underpin the US Food and Drug Administration recommendations for patient-reported outcome instrument evaluation.ResultsOverall, the 12-item ACTS Burdens scale and 3-item ACTS Benefits scale met the psychometric criteria evaluated at both item and scale levels, with the exception of some relatively minor issues in the Dutch language version, which were just below reliability criteria (i.e. alpha = 0.72, test-retest intraclass correlation = 0.79). A consistent finding from item-level evaluations of aggregate endorsement frequencies and skewness suggested that response scales may be improved by reducing the number of response options from five to four.ConclusionsBoth the ACTS Burdens and ACTS Benefits scales consistently satisfied traditional reliability and validity criteria across multiple language datasets, supporting it as a clinically useful patient-reported instrument of satisfaction with anticoagulant treatment in clinical trials.Trial registration numberNCT00440193

We have developed a conceptual framework of HRQL in dementia that incorporates the views of people with dementia and their carers. This provides the basis for the development of a new measure of HRQL in dementia (DEMQOL).

Considering the underlying importance of trust, there is too little research into the understanding, protection and recovery of trust in health care systems, not only for the effective functioning of health care systems but also for society in general. Several researchers have pointed towards a contemporary crisis of trust in health care systems and there have been many examples that show the severe effects of mistrust. More research into public trust in health care systems could contribute to improving efficiency while protecting the health of the public.

This is the unspecified version of the paper.This version of the publication may differ from the final published version. Objectives: To evaluate the psychometrics of the SAQOL-39 in a generic stroke sample. Permanent repository linkShould this process result in a generic-stroke version of the scale (SAQOL-39g), a further aim is to compare the latter and the SAQOL-39 as tested in chronic aphasia.Design and subjects: Repeated measures psychometric study, evaluating internal consistency, test-retest reliability, construct validity and responsiveness to change. People admitted to hospital with a first stroke were assessed two-weeks, three-months and six-months post-stroke.Measures: SAQOL-39, NIH Stroke Scale, Barthel, Frenchay Aphasia Screening Test, GeneralHealth Questionnaire-12, Frenchay Activities Index.Results: Of 126 eligible participants, 96(76%) participated and 87(69%) were able to self-report and are presented here. Testing the SAQOL-39 in generic stroke resulted in the SAQOL-39g, which has the same items as the SAQOL-39 but three domains: physical, psychosocial, communication.The SAQOL-39g showed good internal consistency (=.95 overall score, . Conclusions: The SAQOL-39g demonstrated good reliability, validity and responsiveness to change. It can be used to evaluate quality of life in people with and without aphasia post-stroke.