Reassessing the approach to informed consent: The case of unrelated hematopoietic stem cell transplantation in adult thalassemia patients

Introduction: The informed consent process is the legal embodiment of the fundamental right of the individual to make decisions affecting his or her health., and the patient's permission is a crucial form of respect of freedom and dignity, it becomes extremely important to enhance the patient's understanding and recall of the information given by the physician. This statement acquires additional weight when the medical treatment proposed can potentially be detrimental or even fatal. This is the case of thalassemia patients pertaining to class 3 of the Pesaro classification where Allogenic hematopoietic stem cell transplantation (HSCT) remains the only potentially curative treatment. Unfortunately, this kind of intervention is burdened by an elevated transplantation-related mortality risk (TRM: all deaths considered related to transplantation), equal to 30% according to published reports. In thalassemia, the role of the patient in the informed consent process leading up to HSCT has not been fully investigated. This study investigated the hypothesis that information provided by physicians in the medical scenario of HSCT is not fully understood by patients and that misunderstanding and communication biases may affect the clinical decision-making process.Methods: A questionnaire was either mailed or given personally to 25 patients. A second questionnaire was administered to the 12 physicians attending the patients enrolled in this study. Descriptive statistics were used to evaluate the communication factors.Results: The results pointed out the difference between the risks communicated by physicians and the risks perceived by patients. Besides the study highlighted the mortality risk considered to be acceptable by patients and that considered to be acceptable by physicians.Conclusions: Several solutions have been suggested to reduce the gap between communicated and perceived data. A multi-disciplinary approach may possibly help to attenuate some aspects of communication bias. Several tools have also been proposed to fill or to attenuate the gap between communicated and perceived data. But the most important tool is the ability of the physician to comprehend the right place of conscious consent in the relationship with the patient

QCD and strongly coupled gauge theories : challenges and perspectives

We highlight the progress, current status, and open challenges of QCD-driven physics, in theory and in experiment. We discuss how the strong interaction is intimately connected to a broad sweep of physical problems, in settings ranging from astrophysics and cosmology to strongly coupled, complex systems in particle and condensed-matter physics, as well as to searches for physics beyond the Standard Model. We also discuss how success in describing the strong interaction impacts other fields, and, in turn, how such subjects can impact studies of the strong interaction. In the course of the work we offer a perspective on the many research streams which flow into and out of QCD, as well as a vision for future developments.Peer reviewe

FCC-ee: The Lepton Collider: Future Circular Collider Conceptual Design Report Volume 2

In response to the 2013 Update of the European Strategy for Particle Physics, the Future Circular Collider (FCC) study was launched, as an international collaboration hosted by CERN. This study covers a highest-luminosity high-energy lepton collider (FCC-ee) and an energy-frontier hadron collider (FCC-hh), which could, successively, be installed in the same 100 km tunnel. The scientific capabilities of the integrated FCC programme would serve the worldwide community throughout the 21st century. The FCC study also investigates an LHC energy upgrade, using FCC-hh technology. This document constitutes the second volume of the FCC Conceptual Design Report, devoted to the electron-positron collider FCC-ee. After summarizing the physics discovery opportunities, it presents the accelerator design, performance reach, a staged operation scenario, the underlying technologies, civil engineering, technical infrastructure, and an implementation plan. FCC-ee can be built with today’s technology. Most of the FCC-ee infrastructure could be reused for FCC-hh. Combining concepts from past and present lepton colliders and adding a few novel elements, the FCC-ee design promises outstandingly high luminosity. This will make the FCC-ee a unique precision instrument to study the heaviest known particles (Z, W and H bosons and the top quark), offering great direct and indirect sensitivity to new physics

A palaeoenvironmental reconstruction of the Middle Jurassic of Sardinia (Italy) based on integrated palaeobotanical, palynological and lithofacies data assessment

During the Jurassic, Sardinia was close to continental Europe. Emerged lands started from a single island forming in time a progressively sinking archipelago. This complex palaeogeographic situation gave origin to a diverse landscape with a variety of habitats. Collection- and literature-based palaeobotanical, palynological and lithofacies studies were carried out on the Genna Selole Formation for palaeoenvironmental interpretations. They evidence a generally warm and humid climate, affected occasionally by drier periods. Several distinct ecosystems can be discerned in this climate, including alluvial fans with braided streams (Laconi-Gadoni lithofacies), paralic swamps and coasts (Nurri-Escalaplano lithofacies), and lagoons and shallow marine environments (Ussassai-Perdasdefogu lithofacies). The non-marine environments were covered by extensive lowland and a reduced coastal and tidally influenced environment. Both the river and the upland/hinterland environments are of limited impact for the reconstruction. The difference between the composition of the palynological and palaeobotanical associations evidence the discrepancies obtained using only one of those proxies. The macroremains reflect the local palaeoenvironments better, although subjected to a transport bias (e.g. missing upland elements and delicate organs), whereas the palynomorphs permit to reconstruct the regional palaeoclimate. Considering that the flora of Sardinia is the southernmost of all Middle Jurassic European floras, this multidisciplinary study increases our understanding of the terrestrial environments during that period of time

Multidimensional nation wellbeing, more equal yet more polarized: An analysis of the progress of human development since 1990

Mounting concern regarding inadequacies of per capita GDP or GNI as a source of nation wellbeing classification and comparison lead to the employment of multidimensional approaches with attendant concerns regarding their arbitrary and complex nature. Here, based upon commonalities in multidimensional behavior of nations, feasible, less arbitrary, classification methodologies and techniques for assessing wellbeing within and between groups are proposed. Implementation in a three dimensional study of 164 countries from 1990 to 2014 in a Human Development Index (HDI) framework reveals substantive multi-dimensional growth in a slowly evolving, relatively immobile three group world exhibiting simultaneous increases in equality and polarization with a growing Lower HD class and shrinking Middle and High HD classes

Le indagini statistiche e le fonti amministrative: confronto e verifica della qualità delle informazioni

Nel caso di archivi amministrativi, un aspetto particolarmente rilevante riguarda la definizione del dato amministrativo, che spesso non è di facile lettura e non è rispondente a definizioni e classificazioni utilizzate nella statistica ufficiale. Sempre citando Giovannini (2006), “l’uso di concetti, definizioni e classificazioni standardizzate accresce la coerenza delle informazioni provenienti da varie fonti, mentre l’esistenza di modifiche di carattere metodologico può impedire la comparabilità nel tempo delle serie storiche riferite alla medesima grandezza” (p.190). Un esempio a questo riguardo è la differente definizione di occupazione, così come può essere desunta dagli archivi dell’Istituto Nazionale di Previdenza Sociale (Inps) e quella invece adottata dall’Istat in ottemperanza ai relativi regolamenti comunitari. D’altro canto, le informazioni statistiche sul mercato del lavoro in Italia, e in particolare sull’occupazione, possono essere desunte da diverse fonti e da una molteplicità di soggetti (Istat e altri enti del Sistan, Inps, Ministero del Lavoro, Ministero dell’Economia, Regioni, …). L’atteggiamento dell’utilizzatore di fronte ad una gamma di informazioni così diversificata può essere di due tipi: si può scegliere a priori una fonte informativa, aderendo alle definizioni ed ai criteri in essa adottati, garantendo comparabilità limitata, nel tempo e nello spazio; in alternativa, si può tentare di ricostruire un quadro di comparazioni temporali, settoriali e territoriali, al fine di pervenire ad una più completa valutazione della situazione e dell’evoluzione dell’occupazione in Italia. Seguendo la logica dell’utilizzatore, questo secondo approccio è senza dubbio quello più utile e fecondo, ma è necessario allora evidenziare i punti di forza e le criticità che derivano dal ricorso a fonti diverse. Queste motivazioni portano dunque alla definizione degli obiettivi dell’indagine, ossia evidenziare i punti di forza e di criticità che gli archivi amministrativi dimostrano di avere se confrontati con consolidate rilevazioni statistiche, partendo da un caso specifico, il confronto tra i dati relativi all’occupazione provenienti dagli archivi dell’Inps e dall’indagine sulle forze di lavoro condotta dall’Istat

Measuring chronic and transient components of poverty: a Bayesian approach

Birth–death process, Foster Greer and Thorbecke (FGT) measure, Gibbs sampling, Markov chain Monte Carlo (MCMC), C11, C15, D63,