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Derived from the National Pediatric Cardiology Quality Improvement Collaborative registry, the NEONATE risk score predicted freedom from interstage mortality or heart transplant for patients with single ventricle CHD and aortic arch hypoplasia discharged home following Stage 1 palliation.
We sought to validate the score in an external, modern cohort.
This was a retrospective cohort analysis of single ventricle CHD and aortic arch hypoplasia patients enrolled in the National Pediatric Cardiology Quality Improvement Collaborative Phase II registry from 2016 to 2020, who were discharged home after Stage 1 palliation. Points were allocated per the NEONATE score (Norwood type—Norwood/Blalock–Taussig shunt: 3, Hybrid: 12; extracorporeal membrane oxygenation post-op: 9, Opiates at discharge: 6, No Digoxin at discharge: 9, Arch Obstruction on discharge echo: 9, Tricuspid regurgitation ≥ moderate on discharge echo: 12; Extra oxygen plus ≥ moderate tricuspid regurgitation: 28). The composite primary endpoint was interstage mortality or heart transplant.
In total, 1026 patients met inclusion criteria; 61 (6%) met the primary outcome. Interstage mortality occurred in 44 (4.3%) patients at a median of 129 (IQR 62,195) days, and 17 (1.7%) were referred for heart transplant at a 167 (114,199) days of life. The median NEONATE score was 0(0,9) in those who survived to Stage 2 palliation compared to 9(0,15) in those who experienced interstage mortality or heart transplant (p < 0.001). Applying a NEONATE score cut-off of 17 points that separated patients into low- and high-risk groups in the learning cohort provided 91% specificity, negative predictive value of 95%, and overall accuracy of 87% (85.4–89.5%).
In a modern cohort of patients with single ventricle CHD and aortic arch hypoplasia, the NEONATE score remains useful at discharge post-Stage 1 palliation to predict freedom from interstage mortality or heart transplant.
Schizophrenia is associated with health, social, and financial burdens for patients, caregivers, and society. Major systemic changes, reforms, and technological advances have happened in the USA since the prior estimate of the societal cost of schizophrenia, $155.7B in 2013. This study analyzes the most recent data and literature to update this estimate.
Direct and indirect costs associated with schizophrenia in the US in 2019 were estimated using a prevalence-based approach (ICD-10 codes: F20, F25). Direct healthcare costs were assessed retrospectively using a matched cohort design in the IBM Watson Health MarketScan Commercial, Medicare, and Medicaid databases from October 1, 2015, through December 31, 2019. Patients were matched to controls on demographics, insurance type, and index year. Direct nonhealthcare costs were estimated using published literature and government data. Indirect costs were estimated using a human capital approach and the value of quality-adjusted life years lost. Cost offsets were applied to account for basic living costs avoided. Excess costs, comparing costs for individuals with and without schizophrenia, were reported in 2019 USD.
The estimated excess economic burden of schizophrenia in the US in 2019 was $330.6B, including $62.3B in direct healthcare costs (19%), $19.7B in direct nonhealthcare costs (5%), and $251.9B in excess indirect costs (76%). The largest drivers of indirect costs were caregiving ($112.3B), premature mortality ($77.9B), and unemployment ($54.2B).
The estimated societal burden of schizophrenia in the USA in 2019 was $330.6B, which represented a 93.5% increase from 2013 to 2019, after accounting for inflation. This study underscores the increasing and apparent burden of schizophrenia not only on the patient, but also on caregivers and society.
We identified quality indicators (QIs) for care during transitions of older persons (≥ 65 years of age). Through systematic literature review, we catalogued QIs related to older persons’ transitions in care among continuing care settings and between continuing care and acute care settings and back. Through two Delphi survey rounds, experts ranked relevance, feasibility, and scientific soundness of QIs. A steering committee reviewed QIs for their feasible capture in Canadian administrative databases. Our search yielded 326 QIs from 53 sources. A final set of 38 feasible indicators to measure in current practice was included. The highest proportions of indicators were for the emergency department (47%) and the Institute of Medicine (IOM) quality domain of effectiveness (39.5%). Most feasible indicators were outcome indicators. Our work highlights a lack of standardized transition QI development in practice, and the limitations of current free-text documentation systems in capturing relevant and consistent data.
The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.
While negative affect reliably predicts binge eating, it is unknown how this association may decrease or ‘de-couple’ during treatment for binge eating disorder (BED), whether such change is greater in treatments targeting emotion regulation, or how such change predicts outcome. This study utilized multi-wave ecological momentary assessment (EMA) to assess changes in the momentary association between negative affect and subsequent binge-eating symptoms during Integrative Cognitive Affective Therapy (ICAT-BED) and Cognitive Behavior Therapy Guided Self-Help (CBTgsh). It was predicted that there would be stronger de-coupling effects in ICAT-BED compared to CBTgsh given the focus on emotion regulation skills in ICAT-BED and that greater de-coupling would predict outcomes.
Adults with BED were randomized to ICAT-BED or CBTgsh and completed 1-week EMA protocols and the Eating Disorder Examination (EDE) at pre-treatment, end-of-treatment, and 6-month follow-up (final N = 78). De-coupling was operationalized as a change in momentary associations between negative affect and binge-eating symptoms from pre-treatment to end-of-treatment.
There was a significant de-coupling effect at follow-up but not end-of-treatment, and de-coupling did not differ between ICAT-BED and CBTgsh. Less de-coupling was associated with higher end-of-treatment EDE global scores at end-of-treatment and higher binge frequency at follow-up.
Both ICAT-BED and CBTgsh were associated with de-coupling of momentary negative affect and binge-eating symptoms, which in turn relate to cognitive and behavioral treatment outcomes. Future research is warranted to identify differential mechanisms of change across ICAT-BED and CBTgsh. Results also highlight the importance of developing momentary interventions to more effectively de-couple negative affect and binge eating.
Violet Jacob (1863-1946), bom Violet Kennedy-Erskine, enjoyed some success in the early twentieth century with her novels and short stories, and her poetry in the Lowland Scots tongue. Her books were widely reviewed both north and south of the border, and she had a recognised place in the literary scene of her time. For many years, however, Jacob was represented only by a bare handful of poems in anthologies, until her prose work started reappearing in print in the 1980s and ‘90s. Now it is possible to see that her output is more diverse than has sometimes been assumed.
‘The spirit of place drew her mightily’, it is written of a character in her novel The History of Ay than Waring, and the same might be said of Jacob herself, much of whose work is based self-consciously in the various territories which were her ‘Own Country’. ‘Regional’ literature was popular in her time; it has not always been in favour since, but as Linda Hutcheon remarks of contemporary literature, ‘the local, the regional, the nontotalising are reasserted as the center becomes a fiction’. The time may be ripe for a revaluation of a writer like Jacob, whose work evokes physical place but also location in other senses.
Most of Jacob's significant work was written between the 1890s and the 1920s. She began working at the fin-de-siècle, in what Elaine Showalter has identified as a period of borderline battles, a time of cultural insecurity characterised by ‘fears of regression and degeneration’, when ‘the longing for strict border controls around the definition of gender, as well as race, class, and nationality, becomes especially intense’. Jacob, however, is located on borderlines of various kinds: her work explores borderlands, challenging boundaries, enacting ‘border crossing’.
Jacob grew up in Angus, on the east coast of Scotland, at her landed family's home at Dun, but first began writing seriously when, in the 1890s, she accompanied her Irish husband, Arthur, an army officer, to India, and recorded her life there in diaries and letters. Although she was also writing her first novel The Sheepstealers at this time, she expresses doubts about the value of her fiction in her diaries.
Elizabeth Hamilton (1758-1816), Jane Porter (1776-1850), Mary Brunton (1778-1818), Christian Isobel Johnstone (1781-1857) and Susan Ferrier (1782-1854) were among the most interesting women writing in the early nineteenth century. Like the work of a number of other once popular novelists who have now largely sunk from sight, their fiction and other writings were widely read, admired and influential in their own time, and, in some cases, continued to be so until later in the nineteenth century.
These writers are varied in their attitudes and interests, diverse in their styles and techniques, and we do not wish to suggest they form a ‘group’ or reduce them to fit some preconceived pattern. Nevertheless, working as they did around the same time, and often with an awareness of each other's work, they show some shared concerns. These writers were all working, too, in a period when there were particular pressures on them both as women and as Scottish writers. The strains and paradoxes that shape their fiction do not result in ‘flawed’ work, however; rather, we suggest, their writings are unusually interesting and rich for the modem reader.
The early nineteenth century was a period of cultural vitality: the years following the French and American Revolutions saw political ferment and important intellectual debates in Britain, which fed into the literature of the time. Despite the diaspora created by both colonialism and Clearances, Scotland, and in particular post-Enlightenment Edinburgh, where many of the writers discussed here lived at least for a time, remained a hive of intellectual activity Sir Walter Scott, the ‘Great Unknown’ novelist who dominates the period, tends to be presented as the key figure in the development of the historical and ‘national’ novel at this time. Yet women writers played an important role in the evolution not only of historical fiction, but of so-called ‘regional’ writing; and writers like Porter and Hamilton contributed to a general interest in nationalism in the period.
This was also, though, a period of some self-doubt in Scotland. The effects of the 1707 Union continued to manifest themselves in various ways. It is important to recognise the extent to which writers were working within a British framework; with considerable pressure from London, economic as well as cultural, even those writers who continued to live mainly in Scotland were affected.
Using existing data from clinical registries to support clinical trials and other prospective studies has the potential to improve research efficiency. However, little has been reported about staff experiences and lessons learned from implementation of this method in pediatric cardiology.
We describe the process of using existing registry data in the Pediatric Heart Network Residual Lesion Score Study, report stakeholders’ perspectives, and provide recommendations to guide future studies using this methodology.
The Residual Lesion Score Study, a 17-site prospective, observational study, piloted the use of existing local surgical registry data (collected for submission to the Society of Thoracic Surgeons-Congenital Heart Surgery Database) to supplement manual data collection. A survey regarding processes and perceptions was administered to study site and data coordinating center staff.
Survey response rate was 98% (54/55). Overall, 57% perceived that using registry data saved research staff time in the current study, and 74% perceived that it would save time in future studies; 55% noted significant upfront time in developing a methodology for extracting registry data. Survey recommendations included simplifying data extraction processes and tailoring to the needs of the study, understanding registry characteristics to maximise data quality and security, and involving all stakeholders in design and implementation processes.
Use of existing registry data was perceived to save time and promote efficiency. Consideration must be given to the upfront investment of time and resources needed. Ongoing efforts focussed on automating and centralising data management may aid in further optimising this methodology for future studies.
Optimising short- and long-term outcomes for children and patients with CHD depends on continued scientific discovery and translation to clinical improvements in a coordinated effort by multiple stakeholders. Several challenges remain for clinicians, researchers, administrators, patients, and families seeking continuous scientific and clinical advancements in the field. We describe a new integrated research and improvement network – Cardiac Networks United – that seeks to build upon the experience and success achieved to-date to create a new infrastructure for research and quality improvement that will serve the needs of the paediatric and congenital heart community in the future. Existing gaps in data integration and barriers to improvement are described, along with the mission and vision, organisational structure, and early objectives of Cardiac Networks United. Finally, representatives of key stakeholder groups – heart centre executives, research leaders, learning health system experts, and parent advocates – offer their perspectives on the need for this new collaborative effort.
Quality measures are increasingly reported by hospitals to the Centers for Medicare and Medicaid Services (CMS), yet there may be tradeoffs in performance between infection control (IC) and other quality measures. Hospitals that performed best on IC measures did not perform well on most CMS non–IC quality measures.
The genetic basis of weedy and invasive traits and their evolution remain poorly understood, but genomic approaches offer tremendous promise for elucidating these important features of weed biology. However, the genomic tools and resources available for weed research are currently meager compared with those available for many crops. Because genomic methodologies are becoming increasingly accessible and less expensive, the time is ripe for weed scientists to incorporate these methods into their research programs. One example is next-generation sequencing technology, which has the advantage of enhancing the sequencing output from the transcriptome of a weedy plant at a reduced cost. Successful implementation of these approaches will require collaborative efforts that focus resources on common goals and bring together expertise in weed science, molecular biology, plant physiology, and bioinformatics. We outline how these large-scale genomic programs can aid both our understanding of the biology of weedy and invasive plants and our success at managing these species in agriculture. The judicious selection of species for developing weed genomics programs is needed, and we offer up choices, but no Arabidopsis-like model species exists in the world of weeds. We outline the roadmap for creating a powerful synergy of weed science and genomics, given well-placed effort and resources.
In North America, terrestrial records of biodiversity and climate change that span Marine Oxygen Isotope Stage (MIS) 5 are rare. Where found, they provide insight into how the coupling of the ocean–atmosphere system is manifested in biotic and environmental records and how the biosphere responds to climate change. In 2010–2011, construction at Ziegler Reservoir near Snowmass Village, Colorado (USA) revealed a nearly continuous, lacustrine/wetland sedimentary sequence that preserved evidence of past plant communities between ~140 and 55 ka, including all of MIS 5. At an elevation of 2705 m, the Ziegler Reservoir fossil site also contained thousands of well-preserved bones of late Pleistocene megafauna, including mastodons, mammoths, ground sloths, horses, camels, deer, bison, black bear, coyotes, and bighorn sheep. In addition, the site contained more than 26,000 bones from at least 30 species of small animals including salamanders, otters, muskrats, minks, rabbits, beavers, frogs, lizards, snakes, fish, and birds. The combination of macro- and micro-vertebrates, invertebrates, terrestrial and aquatic plant macrofossils, a detailed pollen record, and a robust, directly dated stratigraphic framework shows that high-elevation ecosystems in the Rocky Mountains of Colorado are climatically sensitive and varied dramatically throughout MIS 5.
No country like the Union of South Africa can be recognized as capable of exercising a colonial mandate.
– NAACP Colonial Conference, 1945
The NAACP’s postwar agenda was firmly established at the April 1945 Colonial Conference. That meeting, in many ways, generated the Association’s road map to colonial liberation: South Africa (South West Africa); Italy (Libya, Eritrea, Somalia); the Netherlands (Indonesia); France (Morocco and Tunisia); and Britain (Kenya). With a strategy similar to the methodical case-by-case approach it had used to expose the sham of separate but equal, the NAACP recognized that the way each colony was governed presented a prime opportunity to strategically undermine and delegitimize the rationales that had, for too long, transformed the brutality of white supremacy into the narrative of benevolent colonial rule.
South West Africa (current day Namibia), in particular, was a testament to how far the myth of the “white man’s burden” had fallen short. The colony had been a mandate under the old League of Nations system and, as such, was a “sacred trust of civilization” administered, in this case, by South Africa. That jarring juxtaposition – a sacred trust held by a racially repressive regime – led the NAACP to emphasize two key principles that were essential for challenging the viability of colonialism in a world birthed by the Atlantic and UN Charters.
I’m for truth, no matter who tells it. I’m for justice, no matter who it’s for ... or against.
– Malcolm X
Nearly a decade ago, while beginning the archival research for this book, I happened to run into historian Gerald Horne at the Library of Congress. We chatted a bit and then he asked me what I was working on. I said, “The NAACP’s anticolonialism.” He smiled and half jokingly replied, “Well, that’s going to be a short book!”
Horne would have been right, if the archival record confirmed the orthodoxy that has reigned for more than forty years. The standard, accepted saga is straightforward. The National Association for the Advancement of Colored People’s (NAACP) anticolonialism began and ended with co-founder W. E. B. Du Bois, whose second stint at the Association was only four brief, tumultuous years, 1944–1948. In that short space of time he brought an enormous wealth of insight, experience, and intuitive brilliance to the subjects of colonialism, economic exploitation, and Africa. His intellectual and anticolonial light was so bright – blinding almost – that it has appeared to many scholars that when he left the NAACP, he took the fire and the sun with him. All that remained of the Association was a darkened, desiccated husk. The NAACP was just a shell of what it used to be and certainly a mere shadow of what it could have been. The ouster of Du Bois, these scholars contend, not only hobbled and destabilized the Association’s anticolonialism but also had a disastrous effect on the struggles for liberation in the United States.
We demand that ... the rights of natives in Libya, Eritrea, and Somaliland be safeguarded under an International Mandates Commission.
– NAACP Colonial Conference, 1945
Southern Africa, unfortunately, was not the only place on the continent where an imperial power with a well-documented record of atrocities maneuvered to expand its control. In North Africa and the Horn, Italy sought to leverage its Cold War importance to the West, as well as its allies’ influence in the UN, to regain dominion over people who were determined to break free of a colonial ruler who had bathed their lands in blood and mustard gas.
The visible agony of the Horn and North Africa coupled with Italy’s astounding demand for return of all the African territory that its fascist incarnation had lost in the war was central to another key campaign the NAACP waged to undercut the legitimacy of colonialism. In this struggle over the Italian colonies of Libya, Somalia, and Eritrea, the Association used many of the same tools that it deployed against South Africa – the UN, media, progressive alliances, and sympathetic supporters within the halls of power – and focused on three key elements.
First, the Association elevated the principle of “the wishes of the inhabitants” and made that concept central to its sustained argument against the reimposition of Italian control.