The state of multiple sclerosis: current insight into the patient/health care provider relationship, treatment challenges, and satisfaction

Esclerosi múltiple; Relació pacient-proveïdor d’atenció mèdica; Satisfacció amb el tractamentEsclerosis múltiple; Relación paciente-proveedor de atención médica; Satisfacción con el tratamientoMultiple sclerosis; Patient-health care provider relationship; Treatment satisfactionBackground: Managing multiple sclerosis (MS) treatment presents challenges for both patients and health care professionals. Effective communication between patients with MS and their neurologist is important for improving clinical outcomes and quality of life. Methods: A closed-ended online market research survey was used to assess the current state of MS care from the perspective of both patients with MS (≥18 years of age) and neurologists who treat MS from Europe and the US and to gain insight into perceptions of treatment expectations/goals, treatment decisions, treatment challenges, communication, and satisfaction with care, based on current clinical practice. Results: A total of 900 neurologists and 982 patients completed the survey, of whom 46% self-identified as having remitting-relapsing MS, 29% secondary progressive MS, and 11% primary progressive MS. Overall, patients felt satisfied with their disease-modifying therapy (DMT); satisfaction related to comfort in speaking with their neurologist and participation in their DMT decision-making process. Patients who self-identified as having relapsing-remitting MS were more likely to be very satisfied with their treatment. Top challenges identified by patients in managing their DMT were cost, side effects/tolerability of treatment, and uncertainty if treatment was working. Half of the patients reported skipping doses, but only 68% told their health care provider that they did so. Conclusion: Several important differences in perception were identified between patients and neurologists concerning treatment selection, satisfaction, expectations, goals, and comfort discussing symptoms, as well as treatment challenges and skipped doses. The study results emphasize that patient/neurologist communication and patient input into the treatment decision-making process likely influence patient satisfaction with treatment

A multi-model comparison of meteorological drivers of surface ozone over Europe

The implementation of European emission abatement strategies has led to a significant reduction in the emissions of ozone precursors during the last decade. Ground-level ozone is also influenced by meteorological factors such as temperature, which exhibit interannual variability and are expected to change in the future. The impacts of climate change on air quality are usually investigated through air-quality models that simulate interactions between emissions, meteorology and chemistry. Within a multi-model assessment, this study aims to better understand how air-quality models represent the relationship between meteorological variables and surface ozone concentrations over Europe. A multiple linear regression (MLR) approach is applied to observed and modelled time series across 10 European regions in springtime and summertime for the period of 2000–2010 for both models and observations. Overall, the air-quality models are in better agreement with observations in summertime than in springtime and particularly in certain regions, such as France, central Europe or eastern Europe, where local meteorological variables show a strong influence on surface ozone concentrations. Larger discrepancies are found for the southern regions, such as the Balkans, the Iberian Peninsula and the Mediterranean basin, especially in springtime. We show that the air-quality models do not properly reproduce the sensitivity of surface ozone to some of the main meteorological drivers, such as maximum temperature, relative humidity and surface solar radiation. Specifically, all air-quality models show more limitations in capturing the strength of the ozone–relative-humidity relationship detected in the observed time series in most of the regions, for both seasons. Here, we speculate that dry-deposition schemes in the air-quality models might play an essential role in capturing this relationship. We further quantify the relationship between ozone and maximum temperature (mo3 − T, climate penalty) in observations and air-quality models. In summertime, most of the air-quality models are able to reproduce the observed climate penalty reasonably well in certain regions such as France, central Europe and northern Italy. However, larger discrepancies are found in springtime, where air-quality models tend to overestimate the magnitude of the observed climate penalty

Germline genetic findings which may impact therapeutic decisions in families with a presumed predisposition for hereditary breast and ovarian cancer

In this study, we aim to gain insight in the germline mutation spectrum of ATM, BARD1, BRIP1, ERCC4, PALB2, RAD51C and RAD51D in breast and ovarian cancer families from Spain. We have selected 180 index cases in whom a germline mutation in BRCA1 and BRCA2 was previously ruled out. The importance of disease-causing variants in these genes lies in the fact that they may have possible therapeutic implications according to clinical guidelines. All variants were assessed by combined annotation dependent depletion (CADD) for scoring their deleteriousness. In addition, we used the cancer genome interpreter to explore the implications of some variants in drug response. Finally, we compiled and evaluated the family history to assess whether carrying a pathogenic mutation was associated with age at diagnosis, tumour diversity of the pedigree and total number of cancer cases in the family. Eight unequivocal pathogenic mutations were found and another fourteen were prioritized as possible causal variants. Some of these molecular results could contribute to cancer diagnosis, treatment selection and prevention. We found a statistically significant association between tumour diversity in the family and carrying a variant with a high score predicting pathogenicity (p = 0.0003)

Neuroanatomical and psychological considerations in temporal lobe epilepsy

Temporal lobe epilepsy (TLE) is the most common form of focal epilepsy and is associated with a variety of structural and psychological alterations. Recently, there has been renewed interest in using brain tissue resected during epilepsy surgery, in particular `non-epileptic¿ brain samples with normal histology that can be found alongside epileptic tissue in the same epileptic patients ¿ with the aim being to study the normal human brain organization using a variety of methods. An important limitation is that different medical characteristics of the patients may modify the brain tissue. Thus, to better determine how `normal¿ the resected tissue is, it is fundamental to know certain clinical, anatomical and psychological characteristics of the patients. Unfortunately, this information is frequently not fully available for the patient from which the resected tissue has been obtained ¿ or is not fully appreciated by the neuroscientists analyzing the brain samples, who are not necessarily experts in epilepsy. In order to present the full picture of TLE in a way that would be accessible to multiple communities (e.g., basic researchers in neuroscience, neurologists, neurosurgeons and psychologists), we have reviewed 34 TLE patients, who were selected due to the availability of detailed clinical, anatomical, and psychological information for each of the patients. Our aim was to convey the full complexity of the disorder, its putative anatomical substrates, and the wide range of individual variability, with a view toward: (1) emphasizing the importance of considering critical patient information when using brain samples for basic research and (2) gaining a better understanding of normal and abnormal brain functioning. In agreement with a large number of previous reports, this study (1) reinforces the notion of substantial individual variability among epileptic patients, and (2) highlights the common but overlooked psychopathological alterations that occur even in patients who become ¿seizure-free¿ after surgery. The first point is based on pre- and post-surgical comparisons of patients with hippocampal sclerosis and patients with normal-looking hippocampus in neuropsychological evaluations. The second emerges from our extensive battery of personality and projective tests, in a two-way comparison of these two types of patients with regard to pre- and post-surgical performance.This work was supported by grants from the following entities: Grant PID2021-127924NB-I00 funded by MCIN/AEI/10.13039/501100011033; Centro de Investigación en Red sobre Enfermedades Neurodegenerativas (CIBERNED, CB06/05/0066); and CSIC Interdisciplinary Thematic Platform (PTI) Cajal Blue Brain (PTI-BLUEBRAIN; Spain). RA was supported by ANDIA grant #0011-3947-2021-000023 from the Gobierno de Navarra

Incidence of Lyme disease in the United Kingdom and association with fatigue: A population-based, historical cohort study.

BACKGROUND: Estimations of Lyme disease incidence rates in the United Kingdom vary. There is evidence that this disease is associated with fatigue in its early stage but reports are contradictory as far as long-term fatigue is concerned. METHODS AND FINDINGS: A population-based historical cohort study was conducted on patients treated in general practices contributing to IQVIA Medical Research Data: 2,130 patients with a first diagnosis of Lyme disease between 2000 and 2018 and 8,510 randomly-sampled patients matched by age, sex, and general practice, followed-up for a median time of 3 years and 8 months. Main outcome measure was time to consultation for (1) any fatigue-related symptoms or diagnosis; or (2) myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Adjusted hazard ratios (HRs) were estimated from Cox models. Average incidence rate for Lyme disease across the UK was 5.18 per 100,000 person-years, increasing from 2.55 in 2000 to 9.33 in 2018. In total, 929 events of any types of fatigue were observed, leading to an incidence rate of 307.90 per 10,000 person-years in the Lyme cohort (282 events) and 165.60 in the comparator cohort (647 events). Effect of Lyme disease on any subsequent fatigue varied by index season: adjusted HRs were the highest in autumn and winter with 3.14 (95%CI: 1.92-5.13) and 2.23 (1.21-4.11), respectively. For ME/CFS, 17 events were observed in total. Incidence rates were 11.76 per 10,000 person-years in Lyme patients (12 events) and 1.20 in comparators (5 events), corresponding to an adjusted HR of 16.95 (5.17-55.60). Effects were attenuated 6 months after diagnosis but still clearly visible. CONCLUSIONS: UK primary care records provided strong evidence that Lyme disease was associated with subsequent fatigue and ME/CFS. Albeit weaker on the long-term, these effects persisted beyond 6 months, suggesting patients and healthcare providers should remain alert to fatigue symptoms months to years following Lyme disease diagnosis

Creating space for reflection and dialogue: Examples of new modes of communication for empowering climate action

“The definition of insanity is doing the same thing over and over again but expecting different results.” This quote by Albert Einstein highlights our need for new formats of communication to address the knowledge-action gap regarding climate change and other sustainability challenges. This includes reflection, and communication spaces, as well as methods and approaches that can catalyze the emergence of transformative change and action. In this article we present and reflect on experiments we carried out at international climate negotiations and conferences

Diagn?stico y propuesta de plan estrat?gico para el esquema de c?rceles productivas peruanas

La presente tesis tiene como objetivo realizar un diagn?stico y una propuesta de plan estrat?gico para el esquema de C?rceles Productivas en el Per?. En ese sentido, se analiz? la participaci?n de la empresa privada en el Programa de C?rceles Productivas (espec?ficamente en los talleres productivos) los cuales han podido beneficiar hasta el momento a un peque?o porcentaje de la poblaci?n penitenciaria. De esta manera, la investigaci?n abord? la normativa vigente nacional y comparada; as? como tambi?n se realiz? entrevistas a diferentes funcionarios, expertos y empresarios que participan actualmente del programa para mostrar la manera en que se ha ido gestionando. Es as? que, de las entrevistas y la experiencia internacional, se ha desarrollado un plan tipo de implantaci?n que ser?a desarrollado en el marco de una estrategia propuesta cuyo objetivo es incrementar el n?mero de empresas privadas que participan el programa C?rceles Productivas y por ende el n?mero de internos a ser contratados mediante el otorgamiento de beneficios tributarios a los empresarios participantes en el programa y mejoras operativas. Finalmente se han propuesto modificaciones legales y administrativas para el ?xito de la estrategia

Towards a holistic understanding of pastoralism

Pastoralism is a globally-important livelihood, with large social, environmental and economic importance across much of our planet. Yet, it is also a vulnerable practice with widespread crises, urgently calling for better systemic understanding. The current disciplinary compartmentalization of research not only hampers this but allows perpetuation of unfortunate misconceptions. Furthermore, a long-standing marginalization of the livelihood prevails, with pastoralism being largely overlooked in international environmental and economic forums or sustainability agendas. Here we call for transformative approaches to pastoralism research that can advance an integrated understanding of these social-ecological systems through a comparative lens. We develop a framework that uses: i) timescales from the distant past to the present, ii)social, economic and environmental dimensions, and iii) diverse geographic contexts and scales, to capture emerging properties allowing for cross-cultural comparisons. We provide specific guidelines for formally developing a coherent set of sustainability indicators that are transferable across time and space, and can track sustainability. In an exploratory exercise, we also show that very distinct pastoralist systems have undergone similar transitions across time, approaching critical thresholds and then either collapsing or recovering. An integrated view of the interactions between the environmental, social and economic dimensions of these transitions allows for an improved understanding of potential tipping points, hence supporting more proactive and informed decision-making. We conclude that the need for a paradigm shift in pastoralism science and policy is pressing. Determining when, where and how is pastoralism not only sustainable, but also the most adaptive livelihood, has become a priority. This paper is based on Manzano et al. (2021).Peer reviewe

Learning and community building in support of collective action:Toward a new climate of communication at the COP

The international UN Climate Change conferences known as “Conferences of the Parties (COPs)” have an enormous convening power and are attended annually by tens of thousands of actors working on climate change topics from a wide range of perspectives. In the COP spaces outside of the formal negotiations, the communication culture is dominated by “side events,” a format that relies heavily on conventional presentations and panels that can be informative, but is generally not conducive to mutual engagement, reflection, or dialogue. There is an urgent need for new dialogue formats that can better foster learning and community-building and thereby harness the enormous latent potential for climate action represented by the diverse stakeholders that gather at the COP. Against this backdrop, and drawing on our experience with the development and implementation of the Co-Creative Reflection and Dialogue Spaces at COP25, COP26, and COP27, we make recommendations for further developing the communication culture of the COPs. At the level of individual sessions, we provide recommendations for designing participatory dialogues that can better support reflection, interconnection, and action orientation. In addition, we offer guidance for scaling up these practices, for instance through networks and communities of practice to support a shift of the overall communication culture of the COPs. Our recommendations focus on interactions and exchanges that unfold outside of the formal negotiation sessions, with a view toward enabling and accelerating transformative action by non-state actors

Toward a holistic understanding of pastoralism

Pastoralism is globally significant in social, environmental and economic terms. However, it experiences crises rooted in misconceptions and poor interdisciplinary understanding, while being largely overlooked in international sustainability forums and agendas. Here we propose a transdisciplinary research approach to understand pastoralist transitions using i) social, economic and environmental dimensions, ii) diverse geographic contexts and scales to capture emerging properties, allowing for cross-system comparisons, and iii) timescales from the distant past to the present. We provide specific guidelines to develop indicators for this approach, within a social-ecological resilience analytical framework to understand change. Distinct systems undergo similar transitions over time, crossing critical thresholds and then either collapsing or recovering. Such an integrated view of multidimensional interactions improves understanding of possible tipping points, thereby supporting better-informed decision-making. The need for a paradigm shift in pastoralism science and policy is pressing. This research approach, including participatory methods, can provide the solutions urgently needed.Peer reviewe