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An improved understanding of diagnostic and treatment practices for patients with rare primary mitochondrial disorders can support benchmarking against guidelines and establish priorities for evaluative research. We aimed to describe physician care for patients with mitochondrial diseases in Canada, including variation in care.
We conducted a cross-sectional survey of Canadian physicians involved in the diagnosis and/or ongoing care of patients with mitochondrial diseases. We used snowball sampling to identify potentially eligible participants, who were contacted by mail up to five times and invited to complete a questionnaire by mail or internet. The questionnaire addressed: personal experience in providing care for mitochondrial disorders; diagnostic and treatment practices; challenges in accessing tests or treatments; and views regarding research priorities.
We received 58 survey responses (52% response rate). Most respondents (83%) reported spending 20% or less of their clinical practice time caring for patients with mitochondrial disorders. We identified important variation in diagnostic care, although assessments frequently reported as diagnostically helpful (e.g., brain magnetic resonance imaging, MRI/MR spectroscopy) were also recommended in published guidelines. Approximately half (49%) of participants would recommend “mitochondrial cocktails” for all or most patients, but we identified variation in responses regarding specific vitamins and cofactors. A majority of physicians recommended studies on the development of effective therapies as the top research priority.
While Canadian physicians’ views about diagnostic care and disease management are aligned with published recommendations, important variations in care reflect persistent areas of uncertainty and a need for empirical evidence to support and update standard protocols.
Around 60 000 people in England live in mental health supported accommodation. There are three main types: residential care, supported housing and floating outreach. Supported housing and floating outreach aim to support service users in moving on to more independent accommodation within 2 years, but there has been little research investigating their effectiveness.
A 30-month prospective cohort study investigating outcomes for users of mental health supported accommodation.
We used random sampling, accounting for relevant geographical variation factors, to recruit 87 services (22 residential care, 35 supported housing and 30 floating outreach) and 619 service users (residential care 159, supported housing 251, floating outreach 209) across England. We contacted services every 3 months to investigate the proportion of service users who successfully moved on to more independent accommodation. Multilevel modelling was used to estimate how much of the outcome and cost variations were due to service type and quality, after accounting for service-user characteristics.
Overall 243/586 participants successfully moved on (residential care 15/146, supported housing 96/244, floating outreach 132/196). This was most likely for floating outreach service users (versus residential care: odds ratio 7.96, 95% CI 2.92–21.69, P < 0.001; versus supported housing: odds ratio 2.74, 95% CI 1.01–7.41, P < 0.001) and was associated with reduced costs of care and two aspects of service quality: promotion of human rights and recovery-based practice.
Most people do not move on from supported accommodation within the expected time frame. Greater focus on human rights and recovery-based practice may increase service effectiveness.
Declaration of interest
H.K., S.P., M.K., S.E., P. McCrone, M.A., S.C., G.L. and G.S. report a grant from National Institute of Health Research during the conduct of the study. All other authors report having no conflicts to disclose.
Patient satisfaction is a key indicator of inpatient care quality and is associated with clinical outcomes following admission. Different patient characteristics have been inconsistently linked with satisfaction. This study aims to overcome previous limitations by assessing which patient characteristics are associated with satisfaction within a large study of psychiatric inpatients conducted across five European countries.
All patients with a diagnosis of psychotic (F2), affective (F3) or anxiety/somataform (F4) disorder admitted to 57 psychiatric inpatient units in Belgium, Germany, Italy, Poland and the UK were included. Data were collected from medical records and face-to-face interviews, with patients approached within 2 days of admission. Satisfaction with inpatient care was measured on the Client Assessment of Treatment Scale.
Higher satisfaction scores were associated with being older, employed, living with others, having a close friend, less severe illness and a first admission. In contrast, higher education levels, comorbid personality disorder and involuntary admission were associated with lower levels of satisfaction. Although the same patient characteristics predicted satisfaction within the five countries, there were significant differences in overall satisfaction scores across countries. Compared to other countries, patients in the UK were significantly less satisfied with their inpatient care.
Having a better understanding of patient satisfaction may enable services to improve the quality of care provided as well as clinical outcomes for all patients. Across countries, the same patient characteristics predict satisfaction, suggesting that similar analytical frameworks can and should be used when assessing satisfaction both nationally and internationally.
Previous studies in individual countries have identified inconsistent predictors of length of stay (LoS) in psychiatric inpatient units. This may reflect methodological inconsistencies across studies or true differences of predictors. In this study we assessed predictors of LoS in five European countries and explored whether their effect varies across countries.
Prospective cohort study. All patients admitted over 14 months to 57 psychiatric inpatient units in Belgium, Germany, Italy, Poland and United Kingdom were screened. Putative predictors were collected from medical records and in face-to-face interviews and tested for their association with LoS.
Average LoS varied from 17.9 days in Italy to 55.1 days in Belgium. In the overall sample being homeless, receiving benefits, social isolation, diagnosis of psychosis, greater symptom severity, substance use, history of previous admission and being involuntarily admitted predicted longer LoS. Several predictors showed significant interaction effects with countries in predicting LoS. One variable, homelessness, predicted a different LoS even in opposite directions, whilst for other predictors the direction of the association was the same, but the strength of the association with LoS varied across countries.
The same patient characteristics have a different impact on LoS in different contexts. Thus, although some predictor variables related to clinical severity and social dysfunction appear of generalisable relevance, national studies on LoS are required to understand the complex influence of different patient characteristics on clinical practice in the given contexts.
Because individuals develop dementia as a manifestation of neurodegenerative or neurovascular disorder, there is a need to develop reliable approaches to their identification. We are undertaking an observational study (Ontario Neurodegenerative Disease Research Initiative [ONDRI]) that includes genomics, neuroimaging, and assessments of cognition as well as language, speech, gait, retinal imaging, and eye tracking. Disorders studied include Alzheimer’s disease, amyotrophic lateral sclerosis, frontotemporal dementia, Parkinson’s disease, and vascular cognitive impairment. Data from ONDRI will be collected into the Brain-CODE database to facilitate correlative analysis. ONDRI will provide a repertoire of endophenotyped individuals that will be a unique, publicly available resource.
We construct an increasing
of Turing degrees which forms an initial segment of the Turing degrees, and such that each
is diagonally nonrecursive relative to
. It follows that the DNR principle of reverse mathematics does not imply the existence of Turing incomparable degrees.
Influenza A (H1N1) pdm09 became the predominant circulating strain in the United States during the 2013–2014 influenza season. Little is known about the epidemiology of severe influenza during this season.
A retrospective cohort study of severely ill patients with influenza infection in intensive care units in 33 US hospitals from September 1, 2013, through April 1, 2014, was conducted to determine risk factors for mortality present on intensive care unit admission and to describe patient characteristics, spectrum of disease, management, and outcomes.
A total of 444 adults and 63 children were admitted to an intensive care unit in a study hospital; 93 adults (20.9%) and 4 children (6.3%) died. By logistic regression analysis, the following factors were significantly associated with mortality among adult patients: older age (>65 years, odds ratio, 3.1 [95% CI, 1.4–6.9], P=.006 and 50–64 years, 2.5 [1.3–4.9], P=.007; reference age 18–49 years), male sex (1.9 [1.1–3.3], P=.031), history of malignant tumor with chemotherapy administered within the prior 6 months (12.1 [3.9–37.0], P<.001), and a higher Sequential Organ Failure Assessment score (for each increase by 1 in score, 1.3 [1.2–1.4], P<.001).
Risk factors for death among US patients with severe influenza during the 2013–2014 season, when influenza A (H1N1) pdm09 was the predominant circulating strain type, shifted in the first postpandemic season in which it predominated toward those of a more typical epidemic influenza season.
Infect. Control Hosp. Epidemiol. 2015;36(11):1251–1260
To examine the use of vitamin D supplements during infancy among the participants in an international infant feeding trial.
Information about vitamin D supplementation was collected through a validated FFQ at the age of 2 weeks and monthly between the ages of 1 month and 6 months.
Infants (n 2159) with a biological family member affected by type 1 diabetes and with increased human leucocyte antigen-conferred susceptibility to type 1 diabetes from twelve European countries, the USA, Canada and Australia.
Daily use of vitamin D supplements was common during the first 6 months of life in Northern and Central Europe (>80 % of the infants), with somewhat lower rates observed in Southern Europe (>60 %). In Canada, vitamin D supplementation was more common among exclusively breast-fed than other infants (e.g. 71 % v. 44 % at 6 months of age). Less than 2 % of infants in the USA and Australia received any vitamin D supplementation. Higher gestational age, older maternal age and longer maternal education were study-wide associated with greater use of vitamin D supplements.
Most of the infants received vitamin D supplements during the first 6 months of life in the European countries, whereas in Canada only half and in the USA and Australia very few were given supplementation.
Economic evaluations of health interventions pose a particular challenge for reporting. There is also a need to consolidate and update existing guidelines and promote their use in a user friendly manner. The Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement is an attempt to consolidate and update previous health economic evaluation guidelines efforts into one current, useful reporting guidance. The primary audiences for the CHEERS statement are researchers reporting economic evaluations and the editors and peer reviewers assessing them for publication.
The need for new reporting guidance was identified by a survey of medical editors. A list of possible items based on a systematic review was created. A two round, modified Delphi panel consisting of representatives from academia, clinical practice, industry, government, and the editorial community was conducted. Out of 44 candidate items, 24 items and accompanying recommendations were developed. The recommendations are contained in a user friendly, 24 item checklist. A copy of the statement, accompanying checklist, and this report can be found on the ISPOR Health Economic Evaluations Publication Guidelines Task Force website (www.ispor.org/TaskForces/EconomicPubGuidelines.asp).
We hope CHEERS will lead to better reporting, and ultimately, better health decisions. To facilitate dissemination and uptake, the CHEERS statement is being co-published across 10 health economics and medical journals. We encourage other journals and groups, to endorse CHEERS. The author team plans to review the checklist for an update in five years.
Early onset aggression precipitates a cascade of risk factors, increasing the probability of a range of externalizing and internalizing psychopathological outcomes. Unfortunately, decades of research on the etiological contributions to the manifestation of aggression have failed to yield identification of any risk factors determined to be either necessary or sufficient, likely attributable to etiological heterogeneity within the construct of aggression. Differential pathways of etiological risk are not easily discerned at the behavioral or self-report level, particularly in young children, requiring multilevel analysis of risk pathways. This study focuses on three domains of risk to examine the heterogeneity in 207 urban kindergarten children with high levels of aggression: cognitive processing, socioemotional competence and emotion processing, and family context. The results indicate that 90% of children in the high aggression group could be characterized as either low in verbal ability or high in physiological arousal (resting skin conductance). Children characterized as low verbal, high arousal, or both differed in social and emotional competence, physiological reactivity to emotion, and aspects of family-based contextual risk. The implications of this etiologic heterogeneity of aggression are discussed in terms of assessment and treatment.
Since Findler and Felleisen (Findler, R. B. & Felleisen, M. 2002) introduced higher-order contracts, many variants have been proposed. Broadly, these fall into two groups: some follow Findler and Felleisen (2002) in using latent contracts, purely dynamic checks that are transparent to the type system; others use manifest contracts, where refinement types record the most recent check that has been applied to each value. These two approaches are commonly assumed to be equivalent—different ways of implementing the same idea, one retaining a simple type system, and the other providing more static information. Our goal is to formalize and clarify this folklore understanding. Our work extends that of Gronski and Flanagan (Gronski, J. & Flanagan, C. 2007), who defined a latent calculus λC and a manifest calculus λH, gave a translation φ from λC to λH, and proved that if a λC term reduces to a constant, so does its φ-image. We enrich their account with a translation ψ from λH to λC and prove an analogous theorem. We then generalize the whole framework to dependent contracts, whose predicates can mention free variables. This extension is both pragmatically crucial, supporting a much more interesting range of contracts, and theoretically challenging. We define dependent versions of λH and two dialects (“lax” and “picky”) of λC, establish type soundness—a substantial result in itself, for λH — and extend φ and ψ accordingly. Surprisingly, the intuition that the latent and manifest systems are equivalent now breaks down: the extended translations preserve behavior in one direction, but in the other, sometimes yield terms that blame more.
With energy legislation pending in Congress, research is urgently needed on the public's preferences for environmental policies. This study investigated preferences for government investment in new energy production relative to energy conservation and the variables that influence these preferences among members of the general public and those who live near nuclear and/or coal energy facilities (site-specific sample). A survey using random digit dialing assessed preferences for new energy production relative to energy conservation, beliefs about coal and nuclear energy, cultural worldview, trust in nuclear and coal agencies, environmental activism, and demographics among a general public sample (n = 800) and a site-specific sample (n = 2,400). Results showed that fewer than half of the participants desired more than half of the funding to be invested in new energy production relative to energy conservation. The general public sample's preferences were driven primarily by beliefs about coal, hierarchical values, environmental concern, and gender. The model of the site-specific sample's preferences was more complex and showed that preferences were driven primarily by coal and nuclear beliefs, hierarchical values, environmental concern, age, and race. Overall, the results underline the importance of investigating the underpinnings of beliefs of different groups and being cognizant of the unique factors that influence energy preferences among these groups.
To perform surgical closure of a clinically significant arterial duct on children in a third world country.
An arterial duct is one of the most common congenital cardiac defects. Large arterial ducts can cause significant pulmonary overcirculation, causing symptoms of congestive cardiac failure, ultimately resulting in premature death. Closure of an arterial duct is usually curative, allowing for a normal quality of life and expectancy. In western countries, arterial duct closure in children is usually performed by deployment of a device through a catheter-based approach, replacing previous surgical approaches. In third world countries, there is limited access to the necessary resources for performing catheter-based closure of an arterial duct. Consequently, children with an arterial duct in a third world country may only receive palliative care, can be markedly symptomatic, and often do not survive to adulthood.
We assembled a team of 11 healthcare workers with extensive experience in the medical and surgical management of children with congenital cardiac disease. In all, 21 patients with a history of an arterial duct were screened by performing a comprehensive history, physical, and echocardiogram at the Angkor Hospital for Children in Siem Reap, Cambodia.
A total of 18 children (eight male and ten female), ranging in age from 10 months to 14 years, were deemed suitable to undergo surgery. All patients were symptomatic, and the arterial ducts ranged in size from 4 to 15 millimetres. Surgical closure was performed using two clips, and in four cases with the largest arterial duct, sutures were also placed. All patients had successful closure without any significant complications, and were able to be discharged home within 2 days of surgery. Of note, four children with arterial ducts died in the 5 months before our arrival.
Surgical closure of an arterial duct can be performed safely and effectively by an experienced paediatric cardiothoracic surgical team on children in a third world country. We hope that our experience will inspire others to perform similar missions throughout the world.