Fear of exercise and health-related quality of life in patients with an implantable cardioverter defibrillator

Several studies have reported improved survival rates thanks to the use of an implantable cardioverter defibrillator (ICD) in the treatment of patients with life-threatening arrhythmia. However, the effects of the ICD on health-related quality of life (HR-QoL) of these patients are not clear. The aim of this study is to describe HR-QoL and fear of exercise in ICD patients. Eighty-nine ICD patients from the University Hospital in Groningen, the Netherlands, participated in this study. HR-QoL was measured using the Rand-36 and the Quality of Life After Myocardial Infarction Dutch language version questionnaires. Fear of exercise was measured using the Tampa Scale for Kinesiophobia, Dutch version and the Fear Avoidance Beliefs Questionnaire, Dutch version. Association between outcome variables was analysed by linear regression analyses. Study results show that the HR-QoL of patients with ICDs in our study population is significantly worse than that of normal healthy people. Furthermore, fear of exercise is negatively associated with HR-QoL corrected for sex, age and number of years living with an ICD. After implantation of the ICD, patients with a clear fear of exercise should be identified and interventions should be considered in order to increase their HR-QoL

A FAIR based approach to data sharing in Europe

The European fusion research activities have, over recent decades, generated a vast and varied set of data. The volume and diversity of the data that need to be catalogued and annotated make the task of organising and making the data available within a broader environment very challenging. Nevertheless, there are strong scientific drivers as well as incentives and mandates from national research agencies suggesting that a more coherent approach to data referencing, dissemination and sharing would provide strong benefits to the fusion research community and beyond. Here, we discuss the technical requirements and developments needed to transition the current, and future, range of fusion research data to an open and Findable, Accessible, Interoperable, and Reusable data sharing structure guided by the principle \u27as open as possible, as closed as necessary\u27. Here we propose a set of recommendations and technical implementations needed to form a European data sharing environment for the fusion research programmes. Consistency with the emerging IMAS (ITER Integrated Modelling and Analysis Suite) infrastructure is considered to facilitate future deployments

Museum Audio Description: The Problem of Textual Fidelity

Museums present a myriad of source texts, which are often highly ambiguous. Yet Museum Audio Description (AD) is sited in an AD tradition which advocates objectivity. In screen AD, researchers have examined multiple aspects of the translation decisions facing the describer-translator, considering the ways in which AD is shaped by the demands of the source text, the impact of AD on the recipient’s experience and how these aspects may relate to objectivity. We examine the extent to which these decisions may apply to museum AD or differ in a museum setting. We argue that the notion of the ‘source text’ for museums should be expanded beyond the visual elements of museum’s collections, encompassing the wider museum visiting experience. Drawing upon research from Museum Studies and Psychology, we explore the empirical evidence that characterises the experiences of mainstream sighted visitors and discuss the implications for museum AD. If it is to offer true access to the museum experience, then museum AD must consider not only the assimilation of visual information, but also the social, cognitive and emotional elements of visits. From this perspective, the emphasis is shifted from visual to verbal translation to the creative possibilities of re-creation in museum AD

Palliative care for the elderly - developing a curriculum for nursing and medical students

<p>Abstract</p> <p>Background</p> <p>Delivering palliative care to elderly, dying patients is a present and future challenge. In Germany, this has been underlined by a 2009 legislation implementing palliative care as compulsory in the medical curriculum. While the number of elderly patients is increasing in many western countries multimorbidity, dementia and frailty complicate care. Teaching palliative care of the elderly to an interprofessional group of medical and nursing students can help to provide better care as acknowledged by the ministry of health and its expert panels.</p> <p>In this study we researched and created an interdisciplinary curriculum focussing on the palliative care needs of the elderly which will be presented in this paper.</p> <p>Methods</p> <p>In order to identify relevant learning goals and objectives for the curriculum, we proceeded in four subsequent stages.</p> <p>We searched international literature for existing undergraduate palliative care curricula focussing on the palliative care situation of elderly patients; we searched international literature for palliative care needs of the elderly. The searches were sensitive and limited in nature. Mesh terms were used where applicable. We then presented the results to a group of geriatrics and palliative care experts for critical appraisal. Finally, the findings were transformed into a curriculum, focussing on learning goals, using the literature found.</p> <p>Results</p> <p>The literature searches and expert feedback produced a primary body of results. The following deduction domains emerged: Geriatrics, Palliative Care, Communication & Patient Autonomy and Organisation & Social Networks. Based on these domains we developed our curriculum.</p> <p>Conclusions</p> <p>The curriculum was successfully implemented following the Kern approach for medical curricula. The process is documented in this paper. The information given may support curriculum developers in their search for learning goals and objectives.</p

Low documentation of chronic kidney disease among high-risk patients in a managed care population: a retrospective cohort study

<p>Abstract</p> <p>Background</p> <p>Early detection of chronic kidney disease (CKD) is sub-optimal among the general population and among high risk patients. The prevalence and impact of major CKD risk factors, diabetes (DM) and hypertension (HTN), on CKD documentation among managed care populations have not been previously reported. We examined this issue in a Kaiser Permanente Georgia (KPG) CKD cohort.</p> <p>Methods</p> <p>KPG enrollees were included in the CKD cohort if they had eGFRs between 60 and 365 days apart that were <90 ml/min during 1999-2006. The current analysis is restricted to participants with eGFR 10-59 ml/min/1.73 m². CKD documentation was defined as a presenting diagnosis of CKD by a primary care physician or nephrologist using ICD-9 event codes. The association between CKD documentation and DM and HTN were assessed with multivariate logistic regression models.</p> <p>Results</p> <p>Of the 50,438 subjects within the overall KPG CKD cohort, 20% (N = 10,266) were eligible for inclusion in the current analysis. Overall, CKD diagnosis documentation was low; only 14.4% of subjects had an event-based CKD diagnosis at baseline. Gender and types 2 diabetes interacted on CKD documentation. The prevalence of CKD documentation increased with the presence of hypertension and/or type 2 diabetes, but type 2 diabetes had a lower effect on CKD documentation. In multivariate analysis, significant predictors of CKD documentation were eGFR, hypertension, type 2 diabetes, congestive heart failure, peripheral artery disease, statin use, age and gender. CKD documentation was lower among women than similarly affected men.</p> <p>Conclusion</p> <p>Among patients with an eGFR 10-59, documentation of CKD diagnosis by primary and subspecialty providers is low within a managed care patient cohort. Gender disparities in CKD documentation observed in the general population were also present among KPG CKD enrollees.</p

Prenatal ultrasound and postmortem histologic evaluation of tooth germs: an observational, transversal study

Introduction: Hypodontia is the most frequent developmental anomaly of the orofacial complex, and its detection in prenatal ultrasound may indicate the presence of congenital malformations, genetic syndromes and chromosomal abnormalities.To date, only a few studies have evaluated the histological relationship of human tooth germs identified by two-dimensional (2D) ultrasonography. In order to analyze whether two-dimensional ultrasonography of tooth germs may be successfully used for identifying genetic syndromes, prenatal ultrasound images of fetal tooth germs obtained from a Portuguese population sample were compared with histological images obtained from fetal autopsies.Methods: Observational, descriptive, transversal study. The study protocol followed the ethical principles outlined by the Helsinki Declaration and was approved by the Ethics Committee of the School of Dental Medicine, University of Porto (FMDUP, Porto, Portugal) and of the Centro Hospitalar de Vila Nova de Gaia/Espinho (CHVNG/EPE, Porto, Portugal) as well as by the CGC Genetics Embryofetal Pathology Laboratory. Eighty-five fetuses examined by prenatal ultrasound screening from May 2011 to August 2012 had an indication for autopsy following spontaneous fetal death or medical termination of pregnancy. Of the 85 fetuses, 37 (43.5%) were randomly selected for tooth germ evaluation by routine histopathological analysis. Fetuses who were up to 30 weeks of gestation, and whose histological pieces were not representative of all maxillary tooth germs was excluded. Twenty four fetus between the 13th and 30th weeks of gestation fulfilled the parameters to autopsy.Results: Twenty four fetuses were submitted to histological evaluation and were determined the exact number, morphology, and mineralization of their tooth germs. All tooth germs were identifiable with ultrasonography as early as the 13th week of gestation. Of the fetuses autopsied, 41.7% had hypodontia (29.1% maxillary hypodontia and 20.9% mandibular hypodontia).Conclusions: This results indicateinfo:eu-repo/semantics/publishedVersio

Useful pharmacodynamic endpoints in children: selection, measurement, and next steps.

Pharmacodynamic (PD) endpoints are essential for establishing the benefit-to-risk ratio for therapeutic interventions in children and neonates. This article discusses the selection of an appropriate measure of response, the PD endpoint, which is a critical methodological step in designing pediatric efficacy and safety studies. We provide an overview of existing guidance on the choice of PD endpoints in pediatric clinical research. We identified several considerations relevant to the selection and measurement of PD endpoints in pediatric clinical trials, including the use of biomarkers, modeling, compliance, scoring systems, and validated measurement tools. To be useful, PD endpoints in children need to be clinically relevant, responsive to both treatment and/or disease progression, reproducible, and reliable. In most pediatric disease areas, this requires significant validation efforts. We propose a minimal set of criteria for useful PD endpoint selection and measurement. We conclude that, given the current heterogeneity of pediatric PD endpoint definitions and measurements, both across and within defined disease areas, there is an acute need for internationally agreed, validated, and condition-specific pediatric PD endpoints that consider the needs of all stakeholders, including healthcare providers, policy makers, patients, and families.Pediatric Research advance online publication, 11 April 2018; doi:10.1038/pr.2018.38