Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study

Objective: To determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes. Design: National cohort, data-linkage study. Setting: PICUs in England. Patients: Children admitted to a UK PICU (1 January 2004 and 31 March 2015) were identified in the Paediatric Intensive Care Audit Network dataset. Linkage to hospital episodes statistics enabled identification of children with a LLC using an International Classification of Diseases (ICD10) code list. Main outcome measures: Random-effects logistic regression was undertaken to assess risk of death in PICU. Flexible parametric survival modelling was used to assess survival in the year after discharge. Results: Overall, 57.6% (n=89 127) of PICU admissions and 72.90% (n=4821) of deaths in PICU were for an individual with a LLC. The crude mortality rate in PICU was 5.4% for those with a LLC and 2.7% of those without a LLC. In the fully adjusted model, children with a LLC were 75% more likely than those without a LLC to die in PICU (OR 1.75 (95% CI 1.64 to 1.87)). Although overall survival to 1 year postdischarge was 96%, children with a LLC were 2.5 times more likely to die in that year than children without a LLC (OR 2.59 (95% CI 2.47 to 2.71)). Conclusions: Children with a LLC accounted for a large proportion of the PICU population. There is an opportunity to integrate specialist paediatric palliative care services with paediatric critical care to enable choice around place of care for these children and families

Dropout: MOOC participants’perspective

Massive Open Online Courses (MOOCs) open up learning opportunities to a large number of people. A small percentage (around 10%) of the large numbers of participants enrolling in MOOCs manage to finish the course by completing all parts. The term ‘dropout’ is commonly used to refer to ‘all who failed to complete’ a course, and is used in relation to MOOCs. Due to the nature of MOOCs, with students not paying enrolment and tuition fees, there is no direct financial cost incurred by a student. Therefore it is debatable whether the traditional definition of dropout in higher education could be directly applied to MOOCs. This paper reports ongoing exploratory work on MOOC participants’ perspectives based on six qualitative interviews. The findings show that MOOC participants are challenging the widely held view of dropout, suggesting that it is more about failing to achieve their personal aims

Selecting children for head CT following head injury

OBJECTIVE: Indicators for head CT scan defined by the 2007 National Institute for Health and Care Excellence (NICE) guidelines were analysed to identify CT uptake, influential variables and yield. DESIGN: Cross-sectional study. SETTING: Hospital inpatient units: England, Wales, Northern Ireland and the Channel Islands. PATIENTS: Children (3 years were much more likely to have CT than those <3 years (OR 2.35 (95% CI 2.08 to 2.65)). CONCLUSION: Compliance with guidelines and diagnostic yield was variable across age groups, the type of hospital and region where children were admitted. With this pattern of clinical practice the risks of both missing intracranial injury and overuse of CT are considerable

A feasibility study of signed consent for the collection of patient identifiable information for a national paediatric clinical audit database

Objectives: To investigate the feasibility of obtaining signed consent for submission of patient identifiable data to a national clinical audit database and to identify factors influencing the consent process and its success. Design: Feasibility study. Setting: Seven paediatric intensive care units in England. Participants: Parents/guardians of patients, or patients aged 12-16 years old, approached consecutively over three months for signed consent for submission of patient identifiable data to the national clinical audit database the Paediatric Intensive Care Audit Network (PICANet). Main outcome measures: The numbers and proportions of admissions for which signed consent was given, refused, or not obtained (form not returned or form partially completed but not signed), by age, sex, level of deprivation, ethnicity (South Asian or not), paediatric index of mortality score, length of hospital stay (days in paediatric intensive care). Results: One unit did not start and one did not fully implement the protocol, so analysis excluded these two units. Consent was obtained for 182 of 422 admissions (43%) (range by unit 9% to 84%). Most (101/182; 55%) consents were taken by staff nurses. One refusal (0.2%) was received. Consent rates were significantly better for children who were more severely ill on admission and for hospital stays of six days or more, and significantly poorer for children aged 10-14 years. Long hospital stays and children aged 10-14 years remained significant in a stepwise regression model of the factors that were significant in the univariate model. Conclusion: Systematically obtaining individual signed consent for sharing patient identifiable information with an externally located clinical audit database is difficult. Obtaining such consent is unlikely to be successful unless additional resources are specifically allocated to training, staff time, and administrative support

Important factors to consider when treating children with chronic fatigue sndrome/myalgic encephalomyelitis (CFS/ME):perspectives of health professionals from specialist services

Background Paediatric Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) is relatively common and disabling. Improving treatment requires the development of Patient Reported Outcome Measures (PROMs) that enable clinicians and researchers to collect patient-centred evidence on outcomes. Health professionals are well placed to provide clinical insight into the condition, its treatment and possible outcomes. This study aimed to understand the perspectives of specialist paediatric CFS/ME health professionals and identify outcomes that are clinically important. Methods Focus groups and interviews were held with 15 health professionals involved in the care of children with CFS/ME from the four largest specialist paediatric CFS/ME services in the NHS in England. A range of clinical disciplines were included and experience in paediatric CFS/ME ranged from 2 months to 25 years. Ten participants (67%) were female. Focus groups and interviews were recorded, transcribed verbatim and data were analysed using thematic analysis. Results All health professionals identified the impact of CFS/ME across multiple aspects of health. Health professionals described four areas used to assess the severity of the illness and outcome in children: 1) symptoms; 2) physical function; 3) participation (school, activities and social life); and 4) emotional wellbeing. They also described the complexity of the condition, contextual factors and considerations for treatment to help children to cope with the condition. Conclusions Clinically important outcomes in paediatric CFS/ME involve a range of aspects of health. Health professionals consider increases in physical function yet maintaining school functioning and participation more widely as important outcomes from treatment. The results are similar to those described by children in a recent study and will be combined to develop a new child-specific PROM that has strong clinical utility and patient relevanc

A study of sex difference in infant mortality in UK pediatric intensive care admissions over an 11-year period

Within the UK, child mortality from all causes has declined for all ages over the last three decades. However, distinct inequality remains, as child mortality rates are generally found to be higher in males. A significant proportion of childhood deaths in the UK occur in Paediatric Intensive Care Units (PICU). We studied the association of sex with infant mortality in PICUs. We included all infants (0 to 12 months old) admitted to UK PICUs from 01/01/2005 to 31/12/2015 using the Paediatric Intensive Care Audit Network (PICANet) dataset. We considered first admissions to PICU and fitted a cause-specific-hazard-ratio (CSHR) model, and a logistic model to estimate the adjusted association between sex and mortality in PICU. Pre-defined subgroups were children less than 56-days old, and those with a primary diagnosis of infection. Of 71,243 cases, 1,411/29,520 (4.8%) of females, and 1,809/41,723 (4.3%) of males died. The adjusted male/female CSHR was 0.87 (95%-CI 0.81 to 0.92) representing a 13% higher risk of death for females. The adjusted OR for male to female mortality is 0.86 (95%-CI 0.80 to 0.93). Analyses in subgroups yielded similar findings. In our analysis, female infants have a higher rate of PICU mortality compared to male infants

Funding climate adaptation strategies with climate derivatives

Climate adaptation requires large capital investments that could be provided not only by traditional sources like governments and banks, but also by derivatives markets. Such markets would allow two parties with different tolerances and expectations about climate risks to transact for their mutual benefit and, in so doing, finance climate adaptation. Here we calculate the price of a derivative called a European put option, based on future sea surface temperature (SST) in Tasmania, Australia, with an 18 °C strike threshold. This price represents a quantifiable indicator of climate risk, and forms the basis for aquaculture industries exposed to the risk of higher SST to finance adaptation strategies through the sale of derivative contracts. Such contracts provide a real incentive to parties with different climate outlooks, or risk exposure to take a market assessment of climate change.Support for this research came from the CSIRO Climate Adaptation Flagship, Enabling Adaptation Pathways project

Comparison of ethnic group classification using naming analysis and routinely collected data: application to cancer incidence trends in children and young people

Objective: Inpatient Hospital Episode Statistics (HES) ethnicity data are available but not always collected and data quality can be unreliable. This may have implications when assessing outcomes by ethnicity. An alternative method for assigning ethnicity is using naming algorithms. We investigate if the association between ethnicity and cancer incidence varied dependent upon how ethnic group was assigned. Design: Population-based cancer registry cohort study Setting: Yorkshire, UK Participants: Cancer registrations from 1998-2009 in children and young people (0-29 years) from a specialist cancer register in Yorkshire, UK (N=3998) were linked to inpatient HES data to obtain recorded ethnicity. Patient?s names, recorded in the cancer register, were matched to an ethnic group using the naming algorithm software Onomap. Each source of ethnicity was categorised as White, South Asian (SA) or Other and a further two indicators were defined based on the combined ethnicities of HES and Onomap, one prioritising HES results, the other prioritising Onomap. Outcomes: Incidence rate ratios (IRR) between ethnic groups were compared using Poisson regression for all cancers combined, leukaemia, lymphoma and central nervous system (CNS) tumours. Results: Depending on the indicator used, 7.1% to 8.6% of the study population were classified as SA. For all cancers there were no statistically significant differences between White and SA groups using any indicator, however for lymphomas significant differences were only evident using one of the ?Combined? indicators (IRR=1.36 (95%CI 1.08, 1.71)) and for CNS tumours incidence was lower using three of the four indicators. For the other ethnic group the IRR for all cancers ranged from 0.78 (0.65, 0.94) to 1.41 (1.23, 1.62). Conclusions: Using different methods of assigning ethnicity can result in different estimates of ethnic variation in cancer incidence. Combining ethnicity from multiple sources results in a more complete estimate of ethnicity than the use of one single source