19 research outputs found
Vulnerability, equity and universal coverage – a concept note
Daniel Reidpath - ORCID: 0000-0002-8796-0420 https://orcid.org/0000-0002-8796-0420https://doi.org/10.1186/1471-2458-12-S1-S212pubpubS
Assessing quality of life in a clinical study on heart rehabilitation patients: how well do value sets based on given or experienced health states reflect patients' valuations?
Background: Quality of life as an endpoint in a clinical study may be sensitive to the value set used to derive a single score. Focusing on patients' actual valuations in a clinical study, we compare different value sets for the EQ-5D-3L and assess how well they reproduce patients' reported results. Methods: A clinical study comparing inpatient (n = 98) and outpatient (n = 47) rehabilitation of patients after an acute coronary event is re-analyzed. Value sets include: 1. Given health states and time-trade-off valuation (GHS-TTO) rendering economic utilities;2. Experienced health states and valuation by visual analog scale (EHS-VAS). Valuations are compared with patient-reported VAS rating. Accuracy is assessed by mean absolute error (MAE) and by Pearson's correlation.. External validity is tested by correlation with established MacNew global scores. Drivers of differences between value sets and VAS are analyzed using repeated measures regression. Results: EHS-VAS had smaller MAEs and higher. in all patients and in the inpatient group, and correlated best with MacNew global score. Quality-adjusted survival was more accurately reflected by EHS-VAS. Younger, better educated patients reported lower VAS at admission than the EHS-based value set. EHS-based estimates were mostly able to reproduce patient-reported valuation. Economic utility measurement is conceptually different, produced results less strongly related to patients' reports, and resulted in about 20 % longer quality-adjusted survival. Conclusion: Decision makers should take into account the impact of choosing value sets on effectiveness results. For transferring the results of heart rehabilitation patients from another country or from another valuation method, the EHS-based value set offers a promising estimation option for those decision makers who prioritize patient-reported valuation. Yet, EHS-based estimates may not fully reflect patient-reported VAS in all situations
Knowledge translation on dementia: a cluster randomized trial to compare a blended learning approach with a "classical" advanced training in GP quality circles
<p>Abstract</p> <p>Background</p> <p>Thus far important findings regarding the dementia syndrome have been implemented into patients' medical care only inadequately. A professional training accounting for both, general practitioners' (GP) needs and learning preferences as well as care-relevant aspects could be a major step towards improving medical care. In the WIDA-study, entitled "Knowledge translation on dementia in general practice" two different training concepts are developed, implemented and evaluated. Both concepts are building on an evidence-based, GP-related dementia guideline and communicate the guideline's essential insights.</p> <p>Methods/Design</p> <p>Both development and implementation emphasize a procedure that is well-accepted in practice and, thus, can achieve a high degree of external validity. This is particularly guaranteed through the preparation of training material and the fact that general practitioners' quality circles (QC) are addressed. The evaluation of the two training concepts is carried out by comparing two groups of GPs to which several quality circles have been randomly assigned. The primary outcome is the GPs' knowledge gain. Secondary outcomes are designed to indicate the training's potential effects on the GPs' practical actions. In the first training concept (study arm A) GPs participate in a structured case discussion prepared for by internet-based learning material ("blended-learning" approach). The second training concept (study arm B) relies on frontal medical training in the form of a slide presentation and follow-up discussion ("classical" approach).</p> <p>Discussion</p> <p>This paper presents the outline of a cluster-randomized trial which has been peer reviewed and support by a national funding organization – Federal Ministry of Education and Research (BMBF) – and is approved by an ethics commission. The data collection has started in August 2006 and the results will be published independently of the study's outcome.</p> <p>Trial Registration</p> <p>Current Controlled Trials [ISRCTN36550981]</p
Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement
Vulnerability, diversity and scarcity: on universal rights
This article makes a contribution to the on-going debates about universalism and cultural relativism from the perspective of sociology. We argue that bioethics has a universal range because it relates to three shared human characteristics,—human vulnerability, institutional precariousness and scarcity of resources. These three components of our argument provide support for a related notion of ‘weak foundationalism’ that emphasizes the universality and interrelatedness of human experience, rather than their cultural differences. After presenting a theoretical position on vulnerability and human rights, we draw on recent criticism of this approach in order to paint a more nuanced picture. We conclude that the dichotomy between universalism and cultural relativism has some conceptual merit, but it also has obvious limitations when we consider the political economy of health and its impact on social inequality
Surveying human vulnerabilities across the life course : Balancing substantive and methodological challenges
How should quantitative researchers interested in investigating human vulnerabilities across the life course optimize their research designs so they can gather accurate data and draw valid conclusions about the phenomena they wish to explain? This is the question tackled in this book, which includes nine contributions from researchers in Switzerland involved in gathering and analyzing new data for a multi-disciplinary research programme called 'LIVES - Overcoming Vulnerability: Life Course Perspectives'. The chapters address both the shared and unique challenges involved in surveying specific vulnerable populations and measuring different aspects of vulnerability. The authors share both the strengths and limitations of their empirical research, and bring to light the tensions involved in pursuing ambitious and pioneering substantive research aims, while attempting to uphold the scientific standards prescribed by the literature on survey methodology. In this introductory discussion, we introduce the chapters by describing how they fit within the broader field of research into vulnerability, and how they are contributing to the advancement of substantive and theoretical debates in this domain. We then discuss the concept of survey quality, drawing on the 'total survey error' framework to highlight the various challenges faced in conducting surveys in nonstandard contexts. The chapter concludes with a discussion of lessons learned from the LIVES research about the paramount importance of collaboration between subject specialists and methodologists in the design of new research in the field of vulnerability, and of transparency with respect to the documentation of research methods, particularly in interdisciplinary research settings
