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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.
Basal units – visibly distinct englacial structures near the ice-bed interface – warrant investigation for a number of reasons. Many are of unknown composition and origin, characteristics that could provide substantial insight into subglacial processes and ice-sheet history. Their significance, moreover, is not limited to near-bed depths; these units appear to dramatically influence the flow of surrounding ice. In order to enable improved characterization of these features, we develop and apply an algorithm that allows for the automatic detection of basal units. We use a tunable layer-optimized SAR processor to distinguish these structures from the bed, isochronous englacial layers and the ice-sheet surface, presenting a conceptual framework for the use of radio-echo character in the identification of ice-sheet features. We also outline a method by which our processor could be used to place observational constraints on basal units’ configuration, composition and provenance.
Ensuring appropriate review, approval, and oversight of research involving animals becomes increasingly complex when researchers collaborate across multiple sites. In these situations, it is important that the division of responsibilities is clear and that all involved parties share a common understanding. The National Institutes of Health Office of Laboratory Animal Welfare and the United States Department of Agriculture Animal Plant Health Inspection Service require an Institutional Animal Care and Use Committee (IACUC) to review the care and use of animals in research, and both agree that it is acceptable for one IACUC to review the work taking place at multiple institutions. With this in mind, several Harvard-affiliated hospitals and academic centers developed the Master Reciprocal Institutional Agreement for Animal Care and Use (Master IACUC Agreement) to support collaboration, decrease administrative burden, increase efficiencies, reduce duplicative efforts, and ensure appropriate protections for animals used in research. Locally, the Master IACUC Agreement has fostered greater collaboration and exchange while ensuring appropriate review and oversight of research involving animals. As multisite animal protocols become more prevalent, this Agreement could provide a model for a distributed, national network of IACUC reliance.
Pediatric trauma is one of the leading causes of child mortality and morbidity and is a major challenge for healthcare systems worldwide. Treatment of pediatric trauma requires special attention according to the unique needs of children, especially in children affected by severe trauma who require life-saving treatments. It is essential to examine the preparedness of Emergency Departments (EDs) for admitting and treating pediatric casualties.
To develop a model for admitting and treating pediatric trauma casualties in EDs.
Seventeen health professionals were interviewed using a semi-structured qualitative tool. A quantitative questionnaire was distributed among general and pediatric EDs’ medical and nursing staff. Following the qualitative and quantitative findings, another round of interviews was performed to identify constraints, to construct a “Current Reality Tree,” and develop a model for admission and management of pediatric casualties in EDs. The model was validated by the National Council for Trauma and Emergency Medicine.
Lack of uniformity was found regarding age limit and levels of injury of pediatric patients. Most study participants believe that severe pediatric casualties should be concentrated in designated medical centers and that minor and major pediatric casualties should be treated in pediatric rather that general EDs. Pediatric emergency medicine specialists are preferred as case managers for pediatric casualties. Significant diversity in pediatric-care training was found. Based on qualitative and quantitative findings, a model for the optimal admitting and managing of pediatric casualties was designed.
To provide the best care for pediatric casualties and regulate its key aspects, clear statutory guidelines should be formulated at national and local levels. The model developed in this study considers EDs’ medical teams and policy leaders’ perceptions, and hence its significant contribution. Implementation of the findings and their integration in pediatric trauma care in EDs can significantly improve pediatric emergency medical services.
Several grass and broadleaf weed species around the world have evolved multiple-herbicide resistance at alarmingly increasing rates. Research on the biochemical and molecular resistance mechanisms of multiple-resistant weed populations indicate a prevalence of herbicide metabolism catalyzed by enzyme systems such as cytochrome P450 monooxygenases and glutathione S-transferases and, to a lesser extent, by glucosyl transferases. A symposium was conducted to gain an understanding of the current state of research on metabolic resistance mechanisms in weed species that pose major management problems around the world. These topics, as well as future directions of investigations that were identified in the symposium, are summarized herein. In addition, the latest information on selected topics such as the role of safeners in inducing crop tolerance to herbicides, selectivity to clomazone, glyphosate metabolism in crops and weeds, and bioactivation of natural molecules is reviewed.
A study conducted as part of the development of the Eleventh International Classification of Mental Disorders for Primary Health Care (ICD-11 PHC) provided an opportunity to test the relationships among depressive, anxious and somatic symptoms in PHC.
Primary care physicians participating in the ICD-11 PHC field studies in five countries selected patients who presented with somatic symptoms not explained by known physical pathology by applying a 29-item screening on somatic complaints that were under study for bodily stress disorder. Patients were interviewed using the Clinical Interview Schedule-Revised and assessed using two five-item scales that measure depressive and anxious symptoms. Structural models of anxious-depressive symptoms and somatic complaints were tested using a bi-factor approach.
A total of 797 patients completed the study procedures. Two bi-factor models fit the data well: Model 1 had all symptoms loaded on a general factor, along with one of three specific depression, anxiety and somatic factors [x2 (627) = 741.016, p < 0.0011, RMSEA = 0.015, CFI = 0.911, TLI = 0.9]. Model 2 had a general factor and two specific anxious depression and somatic factors [x2 (627) = 663.065, p = 0.1543, RMSEA = 0.008, CFI = 0.954, TLI = 0.948].
These data along with those of previous studies suggest that depressive, anxious and somatic symptoms are largely different presentations of a common latent phenomenon. This study provides support for the ICD-11 PHC conceptualization of mood disturbance, especially anxious depression, as central among patients who present multiple somatic symptoms.
Whether monozygotic (MZ) and dizygotic (DZ) twins differ from each other in a variety of phenotypes is important for genetic twin modeling and for inferences made from twin studies in general. We analyzed whether there were differences in individual, maternal and paternal education between MZ and DZ twins in a large pooled dataset. Information was gathered on individual education for 218,362 adult twins from 27 twin cohorts (53% females; 39% MZ twins), and on maternal and paternal education for 147,315 and 143,056 twins respectively, from 28 twin cohorts (52% females; 38% MZ twins). Together, we had information on individual or parental education from 42 twin cohorts representing 19 countries. The original education classifications were transformed to education years and analyzed using linear regression models. Overall, MZ males had 0.26 (95% CI [0.21, 0.31]) years and MZ females 0.17 (95% CI [0.12, 0.21]) years longer education than DZ twins. The zygosity difference became smaller in more recent birth cohorts for both males and females. Parental education was somewhat longer for fathers of DZ twins in cohorts born in 1990–1999 (0.16 years, 95% CI [0.08, 0.25]) and 2000 or later (0.11 years, 95% CI [0.00, 0.22]), compared with fathers of MZ twins. The results show that the years of both individual and parental education are largely similar in MZ and DZ twins. We suggest that the socio-economic differences between MZ and DZ twins are so small that inferences based upon genetic modeling of twin data are not affected.
Children with hypoplastic left heart syndrome are at a risk for neurodevelopmental delays. Current guidelines recommend systematic evaluation and management of neurodevelopmental outcomes with referral for early intervention services. The Single Ventricle Reconstruction Trial represents the largest cohort of children with hypoplastic left heart syndrome ever assembled. Data on life events and resource utilisation have been collected annually. We sought to determine the type and prevalence of early intervention services used from age 1 to 4 years and factors associated with utilisation of services.
Data from 14-month neurodevelopmental assessment and annual medical history forms were used. We assessed the impact of social risk and geographic differences. Fisher exact tests and logistic regression were used to evaluate associations.
Annual medical history forms were available for 302 of 314 children. Greater than half of the children (52–69%) were not receiving services at any age assessed, whereas 20–32% were receiving two or more therapies each year. Utilisation was significantly lower in year 4 (31%) compared with years 1–3 (with a range from 40 to 48%) (p<0.001). Social risk factors were not associated with the use of services at any age but there were significant geographic differences. Significant delay was reported by parents in 18–43% of children at ages 3 and 4.
Despite significant neurodevelopmental delays, early intervention service utilisation was low in this cohort. As survival has improved for children with hypoplastic left heart syndrome, attention must shift to strategies to optimise developmental outcomes, including enrolment in early intervention when merited.
Prevent is a UK-wide programme within the government's anti-terrorism strategy aimed at stopping individuals from supporting or taking part in terrorist activities. NHS England's Prevent Training and Competencies Framework requires health professionals to understand the concept of pre-criminal space. This article examines pre-criminal space, a new term which refers to a period of time during which a person is referred to a specific Prevent-related safeguarding panel, Channel. It is unclear what the concept of pre-criminal space adds to the Prevent programme. The term should be either clarified or removed from the Framework.
Learning about psychiatry or mental health has, for those entering primary care practice in most countries, been a rather ‘hit and miss’ affair. As specific vocational training in the specialty of ‘general practice’ has developed across Europe in the past 50 years, there has been increasing recognition of the need for specific training in mental health, but the form that this should take has not always been clear. Experience of mental healthcare in large mental asylums is not appropriate preparation for the reality of mental healthcare in the broader community. In many low- and middle-income countries, specific training for primary care is now in place, although the mental health content of the curricula is generally still under consideration and thus able to be shaped.
In the UK, the informal curriculum was usually based on clinical practice in specialist hospital units, covered the ‘severe’ end of the spectrum of mental ill health and was usually knowledge rather than skills based. Research looking at the needs of general practice trainees (Williams, 1998) highlighted the gap between traditional, knowledge-based teaching and the trainees’ desire for practical skills development, with feedback on these skills in relation to mental health practice in primary care. Posts undertaken as part of the formal vocational training for general practitioners (GPs) in the 1990s were difficult to access and, usually, were part of acute, hospital-based services, with little or no primary care orientation.
In the UK, general practice specialist training, developed from the original GP vocational training programmes and now approved by the Postgraduate Medical Education and Training Board (PMETB), has a clear curriculum defined by the Royal College of General Practitioners (RCGP; see web link under Further reading and e-resources). Achievement of a Certificate of Completion of Training (CCT) for general practice involves ‘time served’ in appropriate and approved posts, workplace-based assessments of specific competencies, a clinical skills assessment at an independent centre and an applied knowledge test relevant to practice in UK primary care. As all of this is ‘competency’ based, the curriculum has had to define the broad competencies to be achieved in each clinical area. The RCGP curriculum statement 13, Care of People with Mental Health Problems (RCGP, 2007) links the six ‘competency’ areas for GP training with a wide range of mental health problems encountered in primary care (Box 29. 1).
In my years as a junior doctor in a general medical ward, I was often impressed by the gap between what the patient had originally complained of and the leads followed by the medical team in pursuing an unexpected abnormality in a routine investigation, which in fact had little relevance to the patient's actual concerns. Later, while training in psychiatry, I was interested to observe how clinical psychiatry followed a similar pattern: procedures were carried out which made sense to the clinical team but had little relevance to the patient.
This new edition of Thornicroft and Tansella's review of outcome measures marks an important step in the development of mental health services, in that major emphasis is now given to aspects of outcome that are valued by the service users themselves. In Chapter 1, Kabir and Wykes review this important field, and point out that users are more interested in recovery and happiness than in remission of presenting symptoms. Even measures of ‘satisfaction with services’ that are not devised in collaboration with users come in for a critical examination.
However, another new area of interest, identified by the editors in the Introduction, is indeed the currently fashionable concept of ‘recovery’, which gets an extended treatment in Chapter 4. As a retired psychiatrist, I found the new enthusiasm for full recovery rather strange, as it appears to imply that such an aim is something new and (worse still) always achievable. However, it emerges from Chapter 4 that there are in fact a range of meanings ascribed to the concept of ‘recovery’, ranging from the fairly modest aim of living as well as possible to the more utopian one of having a fulfilling, meaningful life and a positive sense of identity founded on hopefulness and self-determination.
Failure to achieve ‘full recovery’ may not be due either to incompetence on the part of the clinician or to lack of motivation on the part of the patient; it is often due to the severity of the underlying disorder. It seems to me important that, rather than inwardly apologising to themselves for incomplete recovery, clinicians should adapt their energies to enabling users to achieve more personal autonomy.
How a clinician decides the severity of a depression
In order to make the diagnosis of depressive episode, a clinician merely has to be satisfied that there are five or more depressive symptoms from a list of nine, present for at least 2 weeks. It should be remembered that the concept is atheoretical, and is derived from the collective clinical experience of international psychiatrists, who have decided to draw an arbitrary line between what will count as ‘clinically significant’ and what they will regarded as ‘subclinical’.
In order to decide how severe such an episode is, other things must also be taken into account, including suicidal risk, the presence of a history or a family history of depression, and the degree of disability associated with the depressive symptoms. ICD–10 (World Health Organization, 1992) defines three degrees of severity:
• F32.0 Mild depressive episode. Depressed mood, loss of interest, increased fatiguability – at least two of these, plus two of the other seven symptoms. None of the symptoms should be present to an intense degree. The minimum episode length is 2 weeks. The individual is usually distressed by the symptoms and has some difficulty continuing with ordinary work and social activities, but does not cease to function completely.
• F32.1 Moderate depressive episode. At least two of the above three, plus either three or four other symptoms. Several symptoms are present in marked degree. An individual will usually have considerable difficulty continuing social, work and domestic activities.
• F32.2 Severe depressive episode. The sufferer usually shows considerable distress or agitation – unless retardation is a marked feature. Loss of self-esteem and feelings of uselessness or guilt are likely to be prominent and suicide is a distinct danger. A somatic syndrome is usually present. All three of the above three symptoms are present, plus at least four of the others, some of which are of severe intensity. If symptoms are widespread and severe, the diagnosis can be made in less than 2 weeks. It very unlikely that a person with a severe depressive episode could continue social, domestic or work activities, except to a very limited extent.
Large volumes of data and multiple computing platforms are now universal components of paediatric cardiovascular medicine, but are in a constant state of evolution. Often, multiple sets of related data reside in disconnected “silos”, resulting in clinical, administrative, and research activities that may be duplicative, inefficient, and at times inaccurate. Comprehensive and integrated data solutions are needed to facilitate these activities across congenital heart centres. We describe methodology, key considerations, successful use cases, and lessons learnt in developing an integrated data platform across our congenital heart centre.
Fontan survivors have depressed cardiac index that worsens over time. Serum biomarker measurement is minimally invasive, rapid, widely available, and may be useful for serial monitoring. The purpose of this study was to identify biomarkers that correlate with lower cardiac index in Fontan patients.
Methods and results
This study was a multi-centre case series assessing the correlations between biomarkers and cardiac magnetic resonance-derived cardiac index in Fontan patients ⩾6 years of age with biochemical and haematopoietic biomarkers obtained ±12 months from cardiac magnetic resonance. Medical history and biomarker values were obtained by chart review. Spearman’s Rank correlation assessed associations between biomarker z-scores and cardiac index. Biomarkers with significant correlations had receiver operating characteristic curves and area under the curve estimated. In total, 97 cardiac magnetic resonances in 87 patients met inclusion criteria: median age at cardiac magnetic resonance was 15 (6–33) years. Significant correlations were found between cardiac index and total alkaline phosphatase (−0.26, p=0.04), estimated creatinine clearance (0.26, p=0.02), and mean corpuscular volume (−0.32, p<0.01). Area under the curve for the three individual biomarkers was 0.63–0.69. Area under the curve for the three-biomarker panel was 0.75. Comparison of cardiac index above and below the receiver operating characteristic curve-identified cut-off points revealed significant differences for each biomarker (p<0.01) and for the composite panel [median cardiac index for higher-risk group=2.17 L/minute/m2 versus lower-risk group=2.96 L/minute/m2, (p<0.01)].
Higher total alkaline phosphatase and mean corpuscular volume as well as lower estimated creatinine clearance identify Fontan patients with lower cardiac index. Using biomarkers to monitor haemodynamics and organ-specific effects warrants prospective investigation.
We analyzed birth order differences in means and variances of height and body mass index (BMI) in monozygotic (MZ) and dizygotic (DZ) twins from infancy to old age. The data were derived from the international CODATwins database. The total number of height and BMI measures from 0.5 to 79.5 years of age was 397,466. As expected, first-born twins had greater birth weight than second-born twins. With respect to height, first-born twins were slightly taller than second-born twins in childhood. After adjusting the results for birth weight, the birth order differences decreased and were no longer statistically significant. First-born twins had greater BMI than the second-born twins over childhood and adolescence. After adjusting the results for birth weight, birth order was still associated with BMI until 12 years of age. No interaction effect between birth order and zygosity was found. Only limited evidence was found that birth order influenced variances of height or BMI. The results were similar among boys and girls and also in MZ and DZ twins. Overall, the differences in height and BMI between first- and second-born twins were modest even in early childhood, while adjustment for birth weight reduced the birth order differences but did not remove them for BMI.
The Fontan operation is the final step of palliation for patients with a functionally single ventricle. Since its introduction in the 1970s, the Fontan surgery has become part of a successful surgical strategy that has improved single ventricle mortality. In recent years, we have become more aware of the limitations and long-term consequences of the Fontan physiology. Pulmonary vascular resistance plays an important role in total cavopulmonary circulation, and has been identified as a potential therapeutic target to mitigate Fontan sequelae. In this review, we will discuss the results of different pulmonary vasodilator trials and the use of pulmonary vasodilators as a treatment strategy for Fontan patients.