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More children with rare diseases survive into adulthood. The transition period to adult healthcare presents many challenges for pediatric rare diseases. Few adolescents or their families receive any transitional support for the transition to adult healthcare or for their maturing psychosocial needs. Understanding the challenges in the transition process is critical to ensure that interventions designed to improve the transition are holistic and meet the needs of the youth and their families. Few transition programs are in place to meet the needs of those youth with rare diseases who cannot participate in medical decision making or who live independently because of severe disabilities and comorbidities. We searched the literature on preparation and outcomes for youth living with rare diseases in PubMed, CINAHL, and PsychInfo, excluding publications before 2010. The results revealed seven studies specific to rare diseases, special needs, or chronic conditions. Next, we discussed transition with experts in the field, GotTransition.org, and citation chaining, yielding a total of 14 sources. The barriers and challenges to transition were identified. Articles discussing solutions and interventions for transition in medically complex children were categorized care coordination or transition readiness. A large portion of children with rare disease are underserved and experience health disparities in transition. [ABSTRACT FROM AUTHOR]

The chaotic distribution and dispersal of phosphorus (P) used in food systems (defined here as disorderly disruptions to the P cycle) is harming our environment beyond acceptable limits. An analysis of P stores and flows across Europe in 2005 showed that high fertiliser P inputs relative to productive outputs was driving low system P efficiency (38 % overall). Regional P imbalance (P surplus) and system P losses were highly correlated to total system P inputs and animal densities, causing unnecessary P accumulation in soils and rivers. Reducing regional P surpluses to zero increased system P efficiency (+ 16 %) and decreased total P losses by 35 %, but required a reduction in system P inputs of ca. 40 %, largely as fertiliser. We discuss transdisciplinary and transformative solutions that tackle the P chaos by collective stakeholder actions across the entire food value chain. Lowering system P demand and better regional governance of P resources appear necessary for more efficient and sustainable food systems. [ABSTRACT FROM AUTHOR]

There is an unmet need for effective treatment strategies to reduce morbidity and mortality in patients with heart failure with preserved ejection fraction (HFpEF). Until recently, attention in patients with HFpEF was almost exclusively focused on the left side. However, it is now increasingly recognized that right heart dysfunction is common and contributes importantly to poor prognosis in HFpEF. More insights into the development of right heart dysfunction in HFpEF may aid to our knowledge about this complex disease and may eventually lead to better treatments to improve outcomes in these patients. In this position paper from the Heart Failure Association of the European Society of Cardiology, the Committee on Heart Failure with Preserved Ejection Fraction reviews the prevalence, diagnosis, and pathophysiology of right heart dysfunction and failure in patients with HFpEF. Finally, potential treatment strategies, important knowledge gaps and future directions regarding the right side in HFpEF are discussed. [ABSTRACT FROM AUTHOR]

This article reports an international study of research data management (RDM) activities, services, and capabilities in higher education libraries. It presents the results of a survey covering higher education libraries in Australia, Canada, Germany, Ireland, the Netherlands, New Zealand, and the UK. The results indicate that libraries have provided leadership in RDM, particularly in advocacy and policy development. Service development is still limited, focused especially on advisory and consultancy services (such as data management planning support and data-related training), rather than technical services (such as provision of a data catalog, and curation of active data). Data curation skills development is underway in libraries, but skills and capabilities are not consistently in place and remain a concern. Other major challenges include resourcing, working with other support services, and achieving "buy in" from researchers and senior managers. Results are compared with previous studies in order to assess trends and relative maturity levels. The range of RDM activities explored in this study are positioned on a "landscape maturity model," which reflects current and planned research data services and practice in academic libraries, representing a "snapshot" of current developments and a baseline for future research. [ABSTRACT FROM AUTHOR]

Purpose: Theoretical reconstruction for the sake of practical political relevance is inherently resistant to the theorisation of a rigorous sociological discipline. Yet, the need for such theoretical reconstruction recurs in history, particularly in times of social and economic crisis when social reconstruction of damaged, fractured and conflict-ridden societies was seen as urgent by both applied sociologists and publics at large. Methodology/approach: This paper directs itself to questions regarding the intellectual and political origins of the Swedish, egalitarian, democratic welfare state ideology in the 1930s, and how it came to be theoretically defined in opposition to the overarching binary frameworks of 'conservative' capitalism and 'progressive' Marxist socialism. Findings: Using McLennan's notion of a 'vehicular' concept, I will attempt to show that the 'third' or 'middle way' compromise between opposing interests has, since its inception in the earlier parts of the twentieth century, changed over time, and will continue to change, within shifting political contexts and changing practical, political demands to 'move things on'. Practical implications: This paper also examines the concept of social planning - social engineering - as a 'third way' practical strategy and how it came to be used as a political and theoretical stick by which attack 'third way' democracy by both neo-liberal and Marxist theorists. Originality/value: The paper builds on the author's previous research on the intellectual and political visions of the Swedish social scientists and reformers, Alva and Gunnar Myrdal, and argues for the continuing importance of theoretical reconstruction and innovation in the preservation of justice and democracy. [ABSTRACT FROM AUTHOR]

Takotsubo syndrome is an acute reversible heart failure syndrome that is increasingly recognized in modern cardiology practice. This Position Statement from the European Society of Cardiology Heart Failure Association provides a comprehensive review of the various clinical and pathophysiological facets of Takotsubo syndrome, including nomenclature, definition, and diagnosis, primary and secondary clinical subtypes, anatomical variants, triggers, epidemiology, pathophysiology, clinical presentation, complications, prognosis, clinical investigations, and treatment approaches. Novel structured approaches to diagnosis, risk stratification, and management are presented, with new algorithms to aid decision-making by practising clinicians. These also cover more complex areas (e.g. uncertain diagnosis and delayed presentation) and the management of complex cases with ongoing symptoms after recovery, recurrent episodes, or spontaneous presentation. The unmet needs and future directions for research in this syndrome are also discussed. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various reports within the issue on topics including the evolution of immigration law in Canada, immigration detention in the United States, and the conditions of Roman in Europe.

Background: Cardiovascular disease (CVD) affects 71 million American adults and remains the leading cause of death in the United States and Europe. Despite studies that suggest that the development of CVD may be linked to intrauterine growth or early events in childhood, little direct experimental evidence supports the notion. Objective: We investigated whether exposure to cigarette smoke in utero alters the risk of developing CVD later in life. Methods: We exposed B6C3F1 mice (via whole-body inhalation) to either filtered air or mainstream cigarette smoke (MCS, at a particle concentration of 15 mg/m³) from gestational day 4 to parturition. Adult offspring were fed a normal chow diet or switched to a high-fat diet 2 weeks before sacrifice. We measured dam and offspring body weight, plasma lipid parameters, lipoprotein subclass particle numbers and sizes, and total antioxidant capacities. Results: Adult female mice prenatally exposed to MCS demonstrated significantly higher body weight and levels of plasma high-density lipoprotein (HDL) and low-density lipoprotein than did their air-exposed counterparts. When fed a high-fat diet for 2 weeks, males, but not females, exposed prenatally to MCS gained substantially more weight and exhibited dramatic alterations in total cholesterol and HDL levels compared with their air-exposed counterparts. Conclusions: These data provide, for the first time, direct experimental evidence supporting the notion that prenatal exposure to cigarette smoke affects offspring weight gain and induces a lipid profile that could alter the offspring's risk of developing CVD later in life. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate the Gunther Tulip vena cava filter with regard to ease of placement, complications, and retrieval over long time periods. Materials and Methods: In 53 patients (ratio of men to women, 24:29; mean age, 52.8 years) retrievable Gunther Tulip filters (Vena Cava M Reye Filter Set; William Cook Europe, Denmark) were inserted. Indications included planned major surgery with recent pulmonary embolus or high pulmonary embolus risk (n = 16), extensive ilio-femoral thrombus (n = 11), deep vein thrombosis with anticoagulant complications (n = 9), breakthrough pulmonary embolus despite anticoagulant therapy (n = 4), and contraindication to anticoagulant therapy (n = 13). All patients were followed-up for immediate and long-term complications. Results: Fifty-three filters were successfully placed in 52 of 53 patients, yielding a success rate of 98.1%. Nineteen patients underwent attempted retrieval of their filter. Sixteen of 19 retrieval procedures were successful (84%). In three patients, the filter could not be removed on attempted retrieval (extensive filter thrombus in two patients and attachment to the wall in one patient). One patient received two filters, which were both successfully retrieved at a later date. Median implantation time for retrievable filters was 34 days (range, 7-126 days). Mean follow-up for patients with permanent filters was 13 months. Two major complications (pneumothorax and break through pulmonary embolus) and three minor complications (right internal jugular vein thrombosis in two patients and transient Horner's Syndrome in one patient) were recorded. Conclusion: Insertion and retrieval of filters is safe and feasible. Preliminary data suggest that Gunther Tulip filter retrieval is feasible over and above the manufacturer's recommended retrieval interval of 14 days. [ABSTRACT FROM AUTHOR]

The article probes the relation between modernism and the gadgže construction of the gypsy. It argues that modernism, and it particular several threads of British modernism, take for a covert model of communality and subjectivity the peripatetic, ahistorical gypsy whose actual historical counterparts filled contemporary newspapers in stories of forced mass evictions and county council Acts. There has been a marked early nineteenth century shift in representation of the gypsy from a figure of alternative archaism to an emblem of both the traditional and the colonial unconscious of an industrializing, imperialist Europe. During the course of the nineteenth century, the gypsy increasingly becomes a textual device that on the one hand disrupts cultural memory and temporality, and on the other hand acts as a marker of the shifting uses of literary genres. It could be argued that gypsy figure persists, and even proliferates, both as an operative element in many works of modernist literature and as a popular model for the modern lifestyle.

Examines issues arising in the relationship between higher education and early labor market experiences for women graduates using evidence from Great Britain, Germany and Sweden. Choice of subject of study; Differential significance of family formation for men and women; Employment of men economists in Sweden.

Editorial. Presents an overview of articles related to the impact of the developments in human rights law on the field of social work, which appeared in the February 2001 issue of the 'Journal of Social Welfare and Family Law.' Reactions regarding the issuance of the Family Law Act; Policy implications on family and social life aspects; Developments in the regulation of assisted conception services in Europe.

An introduction to the journal is presented in which the editor discusses reports published within the issue including articles exploring various dimensions of the restructuring of labor and class relations in Europe and an analysis of the lived experiences of Cape Verdean immigrants.

A letter to the editor is presented in response to the article "Cancer Survival in the UK and Denmark Lags Behind Australia," by Z. Kmietowicz, published in the December 22, 2010 issue.

Purpose: We evaluated whether the severe acute respiratory syndrome coronavirus 2 (SARS-COV-2) pandemic was associated with changes in the pattern of acute cardiovascular admissions across European centers.Methods: We set-up a multicenter, multinational, pan-European observational registry in 15 centers from 12 countries. All consecutive acute admissions to emergency departments and cardiology departments throughout a 1-month period during the COVID-19 outbreak were compared with an equivalent 1-month period in 2019. The acute admissions to cardiology departments were classified into 5 major categories: acute coronary syndrome, acute heart failure, arrhythmia, pulmonary embolism, and other.Results: Data from 54,331 patients were collected and analyzed. Nine centers provided data on acute admissions to emergency departments comprising 50,384 patients: 20,226 in 2020 compared with 30,158 in 2019 (incidence rate ratio [IRR] with 95% confidence interval [95%CI]: 0.66 [0.58-0.76]). The risk of death at the emergency departments was higher in 2020 compared to 2019 (odds ratio [OR] with 95% CI: 4.1 [3.0-5.8], P < 0.0001). All 15 centers provided data on acute cardiology departments admissions: 3007 patients in 2020 and 4452 in 2019; IRR (95% CI): 0.68 (0.64-0.71). In 2020, there were fewer admissions with IRR (95% CI): acute coronary syndrome: 0.68 (0.63-0.73); acute heart failure: 0.65 (0.58-0.74); arrhythmia: 0.66 (0.60-0.72); and other: 0.68(0.62-0.76). We found a relatively higher percentage of pulmonary embolism admissions in 2020: odds ratio (95% CI): 1.5 (1.1-2.1), P = 0.02. Among patients with acute coronary syndrome, there were fewer admissions with unstable angina: 0.79 (0.66-0.94); non-ST segment elevation myocardial infarction: 0.56 (0.50-0.64); and ST-segment elevation myocardial infarction: 0.78 (0.68-0.89).Conclusion: In the European centers during the COVID-19 outbreak, there were fewer acute cardiovascular admissions. Also, fewer patients were admitted to the emergency departments with 4 times higher death risk at the emergency departments. [ABSTRACT FROM AUTHOR]

The human exposome affects child development and health later in life, but its personal external levels, variability, and correlations are largely unknown. We characterized the personal external exposome of pregnant women and children in eight European cities. Panel studies included 167 pregnant women and 183 children (aged 6–11 years). A personal exposure monitoring kit composed of smartphone, accelerometer, ultraviolet (UV) dosimeter, and two air pollution monitors were used to monitor physical activity (PA), fine particulate matter (PM 2.5), black carbon, traffic-related noise, UV-B radiation, and natural outdoor environments (NOE). 77% of women performed the adult recommendation of ≥150 min/week of moderate to vigorous PA (MVPA), while only 3% of children achieved the childhood recommendation of ≥60 min/day MVPA. 11% of women and 17% of children were exposed to daily PM 2.5 levels higher than recommended (≥25μg/m3). Mean exposure to noise ranged from Lden 51.1 dB in Kaunas to Lden 65.2 dB in Barcelona. 4% of women and 23% of children exceeded the recommended maximum of 2 Standard-Erythemal-Dose of UV-B at least once a week. 33% of women and 43% of children never reached the minimum NOE contact recommendation of ≥30 min/week. The variations in air and noise pollution exposure were dominated by between-city variability, while most of the variation observed for NOE contact and PA was between-participants. The correlations between all personal exposures ranged from very low to low (Rho < 0.30). The levels of personal external exposures in both pregnant women and children are above the health recommendations, and there is little correlation between the different exposures. The assessment of the personal external exposome is feasible but sampling requires from one day to more than one year depending on exposure due to high variability between and within cities and participants. • The assessment of the personal external exposome is feasible. • Personal external exposures are above the health recommendations. • Personal external exposures are highly variable within person. • External exposure variability can bias health effects estimation. • There is little correlation between the different external exposures. [ABSTRACT FROM AUTHOR]

Type 2 diabetes mellitus (T2DM) is common in patients with heart failure (HF) and associated with considerable morbidity and mortality. Significant advances have recently occurred in the treatment of T2DM, with evidence of several new glucose-lowering medications showing either neutral or beneficial cardiovascular effects. However, some of these agents have safety characteristics with strong practical implications in HF [i.e. dipeptidyl peptidase-4 (DPP-4) inhibitors, glucagon-like peptide-1 receptor agonists (GLP-1 RA), and sodium-glucose co-transporter type 2 (SGLT-2) inhibitors]. Regarding safety of DPP-4 inhibitors, saxagliptin is not recommended in HF because of a greater risk of HF hospitalisation. There is no compelling evidence of excess HF risk with the other DPP-4 inhibitors. GLP-1 RAs have an overall neutral effect on HF outcomes. However, a signal of harm suggested in two small trials of liraglutide in patients with reduced ejection fraction indicates that their role remains to be defined in established HF. SGLT-2 inhibitors (empagliflozin, canagliflozin and dapagliflozin) have shown a consistent reduction in the risk of HF hospitalisation regardless of baseline cardiovascular risk or history of HF. Accordingly, SGLT-2 inhibitors could be recommended to prevent HF hospitalisation in patients with T2DM and established cardiovascular disease or with multiple risk factors. The recently completed trial with dapagliflozin has shown a significant reduction in cardiovascular mortality and HF events in patients with HF and reduced ejection fraction, with or without T2DM. Several ongoing trials will assess whether the results observed with dapagliflozin could be extended to other SGLT-2 inhibitors in the treatment of HF, with either preserved or reduced ejection fraction, regardless of the presence of T2DM. This position paper aims to summarise relevant clinical trial evidence concerning the role and safety of new glucose-lowering therapies in patients with HF., (© 2019 The Authors. European Journal of Heart Failure © 2019 European Society of Cardiology.)