scholarly journals Outcomes in Paediatric Intensive Care Units for Children with Life-Limiting Conditions: A national data linkage study

Author(s):  
Lorna Fraser ◽  
Sarah Fleming ◽  
Roger Parslow

ABSTRACT ObjectiveTo identify children with a Life-Limiting Condition (LLC) who have had an admission to a Paediatric Intensive Care Unit (PICU) in England and their outcomes. ApproachData for all children who had had a PICU admission in the UK between 1st Jan 2004 and 31st March 2015 were identified from the PICANet dataset. Linkage to inpatient Hospital Episode Statistics (HES) data was undertaken by the NHS Health and Social Care Information Centre for all children who had been resident in England. Their standard algorithm using NHS number, date of birth, sex and postcode was used. All inpatient HES episodes from the financial years 1997/98-2014/15 were received. Although the data quality is high in the PICANet dataset, comorbidities are variably coded therefore identifying whether a child has a LLC or not is not possible. A previously developed ICD10 coding framework was used to identify individuals with one or more of these LLC codes in the inpatient HES dataset. ResultsA total of 199,548 PICU admissions in the UK for 135,759 individuals occurred during the time period of the study. Data for 43,565 admissions (32,025 individuals) were excluded due to not having been resident in England or poor quality demographic data. Data on 103,734 individuals (155,983 admissions) were sent for linkage. Successful linkage occurred in 102,722 individuals (99.4%). Individuals who could not be linked were excluded from the analysis.51.0% of these children had a LLC and these children accounted for 62.7% of the PICU admissions. The crude PICU death rate in the children with a LLC was 5.0% (n=4826) compared to 3.1% (n=1786) in those without a LLC. The OR of death in a model adjusted for diagnostic group, sex, age, and expected risk of mortality for children with a LLC was 2.11 (95%CI 1.97-2.27). ConclusionsChildren with a LLC account for a large proportion of all PICU admissions in England. Although only one in twenty of these children die in PICU, as death may be expected in this population of children more integration of specialist palliative care with PICU services may allow more choice for children and families.

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e046794
Author(s):  
Ofran Almossawi ◽  
Amanda Friend ◽  
Luigi Palla ◽  
Richard Feltbower ◽  
Bianca De Stavola

IntroductionIn the general population, female children have been reported to have a survival advantage. For children admitted to paediatric intensive care units (PICUs), mortality has been reported to be lower in males despite the higher admission rates for males into intensive care. This apparent sex reversal in PICU mortality is not well studied. To address this, we propose to conduct a systematic literature review to summarise the available evidence. Our review will study the reported differences in mortality between males and females aged 0–17, who died in a PICU, to examine if there is a difference between the two sexes in PICU mortality, and if so, to describe the magnitude and direction of this difference.Methods and analysisStudies that directly or indirectly addressed the association between sex and mortality in children admitted to intensive care will be eligible for inclusion. Studies that directly address the association will be eligible for data extraction. The search strings were based on terms related to the population (children in intensive care), the exposure (sex) and the outcome (mortality). We used the databases MEDLINE (1946–2020), Embase (1980–2020) and Web of Science (1985–2020) as these cover relevant clinical publications. We will assess the reliability of included studies using the risk of bias in observational studies of exposures tool. We will consider a pooled effect if we have at least three studies with similar periods of follow up and adjustment variables.Ethics and disseminationEthical approval is not required for this review as it will synthesise data from existing studies. This manuscript is a part of a larger data linkage study, for which Ethical approval was granted. Dissemination will be via peer-reviewed journals and via public and patient groups.PROSPERO registration numberCRD42020203009.


2021 ◽  
pp. 147775092110366
Author(s):  
Harika Avula ◽  
Mariana Dittborn ◽  
Joe Brierley

The field of Paediatric Bioethics, or ethical issues applied to children's healthcare, is relatively new but has recently gained an increased professional and public profile. Clinical ethics support to health professionals and patients who face ethical challenges in clinical practice varies between and within institutions. Literature regarding services available to paediatricians is sparse in specialist tertiary centres and almost absent in general paediatrics. We performed a mixed-methods study using online surveys and focus groups to explore the experiences of ethical and legal dilemmas and the support structures available to (i) paediatric intensive care teams as a proxy for specialist children's centres and (ii) paediatricians working in the general setting in the UK. Our main findings illustrate the broad range of ethical and legal challenges experienced by both groups in daily practice. Ethics training and the availability of ethics support were variable in structure, processes, funding and availability, e.g., 70% of paediatric intensive care consultants reported access to formal ethics advice versus 20% general paediatricians. Overall, our findings suggest a need for ethics support and training in both settings. The broad experience reported of ethics support, where it existed, was good – though improvements were suggested. Many clinicians were concerned about their relationship with children and families experiencing a challenging ethical situation, partly as a result of high-profile recent legal cases in the media. Further research in this area would help collect a broader range of views to inform clinical ethics support's development to better support paediatric teams, children and their families.


2012 ◽  
Vol 97 (10) ◽  
pp. 866-869 ◽  
Author(s):  
Dora Wood ◽  
Philip McShane ◽  
Peter Davis

PurposeTracheostomy is a common intervention for adults admitted to intensive care; many are performed early and most are percutaneous. Our study aimed to elucidate current practice and indications for children in the UK admitted to paediatric intensive care and undergoing tracheostomy.DesignA questionnaire covering unit guidelines, practice, and the advantages and disadvantages of tracheostomy was sent to all UK paediatric intensive care units (PICUs) participating in the Paediatric Intensive Care Audit Network (PICANet). These results were combined with data from PICANet on all children in the UK reported to have had a tracheostomy performed during a PICU admission between 2005 and 2009 inclusive.ResultsOver 5 years, 1613 children had tracheostomies performed during their PICU admission (2.05% of all admissions). The death rate was 5.58% with tracheostomy versus 4.72% overall, but differences were not significant when risk-adjusted using the Paediatric Index of Mortality 2 (PIM2). All 29 units participating in PICANet responded to the survey. Prolonged invasive ventilation was an indication for tracheostomy in 25/29 units, but the definition varied between 14 and 90 days, and most respondents considered timing on an individual basis. Children undergoing tracheostomy during PICU admission account for 9% of PICU bed days in the UK.ConclusionsIn contrast with current adult UK practice, tracheostomy for children admitted to intensive care is infrequent, performed late following admission and usually surgical. Practice varies significantly. The death rate for children having a tracheostomy performed was not significantly higher than for children admitted to PICU who did not undergo tracheostomy.


2017 ◽  
Vol 103 (6) ◽  
pp. 540-547 ◽  
Author(s):  
Lorna K Fraser ◽  
Roger Parslow

ObjectiveTo determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes.DesignNational cohort, data-linkage study.SettingPICUs in England.PatientsChildren 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 measuresRandom-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.ResultsOverall, 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)).ConclusionsChildren 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.


BMJ Open ◽  
2017 ◽  
Vol 7 (11) ◽  
pp. e017784 ◽  
Author(s):  
Sangeerthana Rajagopal ◽  
Scott J Booth ◽  
Terry P Brown ◽  
Chen Ji ◽  
Claire Hawkes ◽  
...  

ObjectivesThe Out-of-Hospital Cardiac Arrest Outcomes (OHCAO) project aims to understand the epidemiology and outcomes of out-of-hospital cardiac arrest (OHCA) across the UK. This data linkage study is a subproject of OHCAO. The aim was to establish the feasibility of linking OHCAO data to National Health Service (NHS) patient demographic data and Office for National Statistics (ONS) date of death data held on the NHS Personal Demographics Service (PDS) database to improve OHCAO demographic data quality and enable analysis of 30-day survival from OHCA.Design and settingData were collected from 1 January 2014 to 31 December 2014 as part of a prospective, observational study of OHCA attended by 10 English NHS Ambulance Services. 28 729 OHCA cases had resuscitation attempted by Emergency Medical Services and were included in the study. Data linkage was carried out using a data linkage service provided by NHS Digital, a national provider of health-related data. To assess data linkage feasibility a random sample of 3120 cases was selected. The sample was securely transferred to NHS Digital to be matched using OHCAO patient demographic data to return previously missing demographic data and provide ONS date of death data.ResultsA total of 2513 (80.5%) OHCAO cases were matched to patients in the NHS PDS database. Using the linkage process, missing demographic data were retrieved for 1636 (72.7%) out of 2249 OHCAO cases that had previously incomplete demographic data. Returned ONS date of death data allowed analysis of 30-day survival status. The results showed a 30-day survival rate of 9.3%, reducing unknown survival status from 46.1% to 8.5%.ConclusionsIn this sample, data linkage between the OHCAO registry and NHS PDS database was shown to be feasible, improving demographic data quality and allowing analysis of 30-day survival status.


2012 ◽  
Vol 109 (7) ◽  
pp. 1304-1322 ◽  
Author(s):  
Lyvonne Tume ◽  
Bernie Carter ◽  
Lynne Latten

The aim of the present study was to describe the present knowledge of healthcare professionals and the practices surrounding enteral feeding in the UK and Irish paediatric intensive care unit (PICU) and propose recommendations for practice and research. A cross-sectional (thirty-four item) survey was sent to all PICU listed in the Paediatric Intensive Care Audit Network (PICANET) database (http://www.picanet.org.uk) in November 2010. The overall PICU response rate was 90 % (27/30 PICU; 108 individual responses in total). The overall breakdown of the professional groups was 59 % nursing staff (most were children's nurses), 27 % medical staff, 13 % dietitians and 1 % physician assistants. Most units (96 %) had some written guidance (although brief and generic) on enteral nutrition (EN); 85 % of staff, across all professional groups (P= 0·672), thought that guidelines helped to improve energy delivery in the PICU. Factors contributing to reduced energy delivery included: fluid-restrictive policies (60 %), the child just being ‘too ill’ to feed (17 %), surgical post-operative orders (16 %), nursing staff being too slow in starting feeds (7 %), frequent procedures requiring fasting (7 %) and haemodynamic instability (7 %). What constituted an ‘acceptable’ level of gastric residual volume (GRV) varied markedly across respondents, but GRV featured prominently in the decision to both stop EN and to determine feed tolerance and was similar for all professional groups. There was considerable variation across respondents about which procedures required fasting and the duration of this fasting. The present survey has highlighted the variability of the present enteral feeding practices across the UK and Ireland, particularly with regard to the use of GRV and fasting for procedures. The present study highlights a number of recommendations for both practice and research.


2018 ◽  
Vol 68 (674) ◽  
pp. e594-e603 ◽  
Author(s):  
Claire Friedemann Smith ◽  
Alice C Tompson ◽  
Nicholas Jones ◽  
Josh Brewin ◽  
Elizabeth A Spencer ◽  
...  

BackgroundDirect access (DA) testing allows GPs to refer patients for investigation without consulting a specialist. The aim is to reduce waiting time for investigations and unnecessary appointments, enabling treatment to begin without delay.AimTo establish the proportion of patients diagnosed with cancer and other diseases through DA testing, time to diagnosis, and suitability of DA investigations.Design and settingSystematic review assessing the effectiveness of GP DA testing in adults.MethodMEDLINE, Embase, and the Cochrane Library were searched. Where possible, study data were pooled and analysed quantitatively. Where this was not possible, the data are presented narratively.ResultsThe authors identified 60 papers that met pre-specified inclusion criteria. Most studies were carried out in the UK and were judged to be of poor quality. The authors found no significant difference in the pooled cancer conversion rate between GP DA referrals and patients who first consulted a specialist for any test, except gastroscopy. There were also no significant differences in the proportions of patients receiving any non-cancer diagnosis. Referrals for testing were deemed appropriate in 66.4% of those coming from GPs, and in 80.9% of those from consultants; this difference was not significant. The time from referral to testing was significantly shorter for patients referred for DA tests. Patient and GP satisfaction with DA testing was consistently high.ConclusionGP DA testing performs as well as, and on some measures better than, consultant triaged testing on measures of disease detection, appropriateness of referrals, interval from referral to testing, and patient and GP satisfaction.


2020 ◽  
Author(s):  
Ofran Almossawi ◽  
Scott O'Brien ◽  
Roger Parslow ◽  
Simon Nadel ◽  
Luigi Palla

Abstract Rationale 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 vary by sex and are generally found to be higher in males. A significant proportion of childhood deaths in the UK occur in Paediatric Intensive Care Units (PICU). Objectives We aimed to study the association of sex with infant mortality in PICUs. Methods We obtained data for all infant admissions to UK-PICUs from 01/01/2005 to 31/12/2015. We assessed the causal relationship between sex and mortality and selected appropriate variables for adjustment. We fitted a cause specific hazard ratio (CSHR) model, and a logistic model to estimate the adjusted effect of sex on mortality in PICU. Pre-defined subgroups were children less than 56 days old, and those with a primary diagnosis of infection. Measurements and Main Results Within the 71,243 admissions, there were 1,411/29,520 (4.8%) female deaths, and 1,809/41,723 (4.3%) male deaths. The adjusted male to female CSHR was 0.87 (95%-CI 0.81 to 0.92) representing a 13% higher risk of death for females over males. Similarly, the adjusted OR for male to female mortality is 0.87 (95%-CI, 0.81 to 0.94). Subgroup analysis yielded similar findings. Conclusions Female sex is associated with higher mortality in infants needing PICU admission, despite similar severity of illness to males. There was no effect of age or infection status. This suggests that females and males differ in the pathophysiology of critical illness and/or their response to treatment.


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