Changing Place of Death in Children who died after discharge from Paediatric Intensive Care Units : a national, data linkage study

Background: Although child mortality is decreasing, more than half of all deaths in childhood occur in children with a life-limiting condition whose death may be expected. Aim: To assess trends in place of death and identify characteristics of children who died in the community after discharge from paediatric intensive care unit. Design: National data linkage study. Setting/participants: All children resident in England and Wales when admitted to a paediatric intensive care unit in the United Kingdom (1 January 2004 and 31 December 2014) were identified in the Paediatric Intensive Care Audit Network dataset. Linkage to death certificate data was available up to the end of 2014. Place of death was categorised as hospital (hospital or paediatric intensive care unit) or community (hospice, home or other) for multivariable logistic modelling. Results: The cohort consisted of 110,328 individuals. In all, 7709 deaths occurred after first discharge from paediatric intensive care unit. Among children dying, the percentage in-hospital at the time of death decreased from 83.8% in 2004 to 68.1% in 2014; 852 (0.8%) of children were discharged to palliative care. Children discharged to palliative care were eight times more likely to die in the community than children who died and had not been discharged to palliative care (odds ratio = 8.06 (95% confidence interval = 6.50–10.01)). Conclusions: The proportion of children dying in hospital is decreasing, but a large proportion of children dying after discharge from paediatric intensive care unit continue to die in hospital. The involvement of palliative care at the point of discharge has the potential to offer choice around place of care and death for these children and families

Long-term psychosocial impact reported by childhood critical illness survivors: a systematic review

Aim: To undertake a qualitative systematic review that explores psychological and social impact, reported directly from children and adolescents at least 6 months after their critical illness. Background: Significant advances in critical care have reduced mortality from childhood critical illness, with the majority of patients being discharged alive. However, it is widely reported that surviving critical illness can be traumatic for both children and their family. Despite a growing body of literature in this field, the psychological and social impact of life threatening critical illness on child and adolescent survivors, more than 6 months post event, remains under-reported. Data sources: Searches of six online databases were conducted up to February 2012. Review methods: Predetermined criteria were used to select studies. Methodological quality was assessed using a standardized checklist. An adapted version of the thematic synthesis approach was applied to extract, code and synthesize data. Findings: Three studies met the inclusion criteria, which were all of moderate methodological quality. Initial coding and synthesis of data resulted in five descriptive themes: confusion and uncertainty, other people’s narratives, focus on former self and normality, social isolation and loss of identity, and transition and transformation. Further synthesis culminated in three analytical themes that conceptualize the childhood survivors’ psychological and social journey following critical illness. Conclusions: Critical illness in childhood can expose survivors to a complex trajectory of recovery, with enduring psychosocial adversity manifesting in the long term. Nurses and other health professionals must be aware and support the potential multifaceted psychosocial needs that may arise. Parents and families are identified as fundamental in shaping psychological and social well-being of survivors. Therefore intensive care nurses must take opportunities to raise parents’ awareness of the journey of survival and provide appropriate support. Further empirical research is warranted to explore the deficits identified with the existing literature

A qualitative feasibility study to inform a randomised controlled trial of fluid bolus therapy in septic shock

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. Objective The Fluids in Shock (FiSh) Trial proposes to evaluate whether restrictive fluid bolus therapy (10 mL/ kg) is more beneficial than current recommended practice (20 mL/kg) in the resuscitation of children with septic shock in the UK. This qualitative feasibility study aimed to explore acceptability of the FiSh Trial, including research without prior consent (RWPC), potential barriers to recruitment and participant information for a pilot trial. Design Qualitative interview study involving parents of children who had presented to a UK emergency department or been admitted to a paediatric intensive care unit with severe infection in the previous 3 years. Participants Twenty-one parents (seven bereaved) were interviewed 16 (median) months since their child’s hospital admission (range: 1–41). results All parents said they would have provided consent for the use of their child’s data in the FiSh Trial. The majority were unfamiliar with RWPC, yet supported its use. Parents were initially concerned about the change from currently recommended treatment, yet were reassured by explanations of the current evidence base, fluid bolus therapy and monitoring procedures. Parents made recommendations about the timing of the research discussion and content of participant information. Bereaved parents stated that recruiters should not discuss research immediately after a child’s death, but supported a personalised postal’opt-out’ approach to consent. conclusions Findings show that parents whose child has experienced severe infection supported the proposed FiSh Trial, including the use of RWPC. Parents’ views informed the development of the pilot trial protocol and site staff training. trial registration number ISRCTN15244462—results

Characteristics of Severe Acute Respiratory Syndrome Coronavirus-2 Infection and Comparison With Influenza in Children Admitted to U.K. PICUs

Objectives: Severe acute respiratory syndrome coronavirus-2 affects adults disproportionately more than children. A small proportion of children with severe acute respiratory syndrome coronavirus-2 required admission to a PICU. We describe the nationwide U.K. PICU experience of severe acute respiratory syndrome coronavirus-2 infection during the first wave of the pandemic and compare this with the critical care course of the 2019 influenza cohort. Design: Prospective nationwide cohort study of characteristics of severe acute respiratory syndrome coronavirus-2–positive children. Data collection utilized routine Pediatric Intensive Care Audit Network and severe acute respiratory syndrome coronavirus-2–specific data. Setting: All U.K. PICUs. Patients: Children less than 18 years old, admitted to U.K. PICUs between March 14, 2020, and June 13, 2020, and a positive severe acute respiratory syndrome coronavirus-2 polymerase chain reaction. Children admitted to U.K. PICUs in 2019 with influenza provided comparison. Interventions: None. Measurements and Main Results: We identified 76 PICU admissions among 73 children with a positive severe acute respiratory syndrome coronavirus-2 polymerase chain reaction test. Prevalence of PICU admissions per million was 5.2 for children versus 260 for adults. Ten children (14%) were identified on routine screening. Seventeen children (23%) had pediatric inflammatory multisystem syndrome temporally associated with severe acute respiratory syndrome coronavirus-2. Seventeen (23%) had coinfections. Invasive ventilation was required in seven of 17 children (41%) with pediatric inflammatory multisystem syndrome temporally associated with severe acute respiratory syndrome coronavirus-2 versus 38 of 56 other severe acute respiratory syndrome coronavirus-2 positive children (68%), with 77% requiring vasoactive support versus 43%, respectively. Seven children (10%) died. In comparison with influenza children, severe acute respiratory syndrome coronavirus-2 children were older (median [interquartile range]: 10 [1–13] vs 3 yr [1–8 yr]), more often Black or Asian (52% v 18%), higher weight z score (0.29 [–0.80 to 1.62] vs –0.41 [–1.37 to 0.63]), and higher deprivation index (3.3 [–1 to 6.3] vs 1.2 [–1.8 to 4.4]). Comorbidities, frequency of organ supports, and length of stay were similar. Conclusions: This nationwide study confirms that PICU admissions with severe acute respiratory syndrome coronavirus-2 infections were infrequent. We have reported similarities and differences in sociodemographic characteristics, organ support interventions, and outcomes of children affected by severe acute respiratory syndrome coronavirus-2 compared with influenza

Data linkage errors in hospital administrative data when applying a pseudonymisation algorithm to paediatric intensive care records.

OBJECTIVES: Our aim was to estimate the rate of data linkage error in Hospital Episode Statistics (HES) by testing the HESID pseudoanonymisation algorithm against a reference standard, in a national registry of paediatric intensive care records. SETTING: The Paediatric Intensive Care Audit Network (PICANet) database, covering 33 paediatric intensive care units in England, Scotland and Wales. PARTICIPANTS: Data from infants and young people aged 0-19 years admitted between 1 January 2004 and 21 February 2014. PRIMARY AND SECONDARY OUTCOME MEASURES: PICANet admission records were classified as matches (records belonging to the same patient who had been readmitted) or non-matches (records belonging to different patients) after applying the HESID algorithm to PICANet records. False-match and missed-match rates were calculated by comparing results of the HESID algorithm with the reference standard PICANet ID. The effect of linkage errors on readmission rate was evaluated. RESULTS: Of 166,406 admissions, 88,596 were true matches (where the same patient had been readmitted). The HESID pseudonymisation algorithm produced few false matches (n=176/77,810; 0.2%) but a larger proportion of missed matches (n=3609/88,596; 4.1%). The true readmission rate was underestimated by 3.8% due to linkage errors. Patients who were younger, male, from Asian/Black/Other ethnic groups (vs White) were more likely to experience a false match. Missed matches were more common for younger patients, for Asian/Black/Other ethnic groups (vs White) and for patients whose records had missing data. CONCLUSIONS: The deterministic algorithm used to link all episodes of hospital care for the same patient in England has a high missed match rate which underestimates the true readmission rate and will produce biased analyses. To reduce linkage error, pseudoanonymisation algorithms need to be validated against good quality reference standards. Pseudonymisation of data 'at source' does not itself address errors in patient identifiers and the impact these errors have on data linkage.Economic and Social Research Council (ESRC) National Centre for Research Methods (NCRM), grant number ES/F035098/1

CATheter Infections in CHildren (CATCH): a randomised controlled trial and economic evaluation comparing impregnated and standard central venous catheters in children.

BACKGROUND: Impregnated central venous catheters (CVCs) are recommended for adults to reduce bloodstream infection (BSI) but not for children. OBJECTIVE: To determine the effectiveness of impregnated compared with standard CVCs for reducing BSI in children admitted for intensive care. DESIGN: Multicentre randomised controlled trial, cost-effectiveness analysis from a NHS perspective and a generalisability analysis and cost impact analysis. SETTING: 14 English paediatric intensive care units (PICUs) in England. PARTICIPANTS: Children aged  1.2 per 1000 CVC-days. CONCLUSIONS: The primary outcome did not differ between impregnated and standard CVCs. However, antibiotic-impregnated CVCs significantly reduced the risk of BSI compared with standard and heparin CVCs. Adoption of antibiotic-impregnated CVCs could be beneficial even for PICUs with low BSI rates, although uncertainty remains whether or not they represent value for money to the NHS. Limitations - inserting clinicians were not blinded to allocation and a lower than expected event rate meant that there was limited power for head-to-head comparisons of each type of impregnation. Future work - adoption of impregnated CVCs in PICUs should be considered and could be monitored through linkage of electronic health-care data and clinical data on CVC use with laboratory surveillance data on BSI. TRIAL REGISTRATION: ClinicalTrials.gov NCT01029717. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 18. See the NIHR Journals Library website for further project information

Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit

The involvement of patients and the public in the development, implementation and evaluation of health care services and research is recognized to have tangible benefits in relation to effectiveness and credibility. However, despite >96% of children and young people surviving critical illness or injury, there is a paucity of published reports demonstrating their contribution to informing the priorities for aftercare services and outcomes research. We aimed to identify the service and research priorities for Paediatric Intensive Care Unit survivors with children and young people, their families and other stakeholders. We conducted a face‐to‐face, multiple‐stakeholder consultation event, held in the Midlands (UK), to provide opportunities for experiences, views and priorities to be elicited. Data were gathered using write/draw and tell and focus group approaches. An inductive content analytical approach was used to categorize and conceptualize feedback. A total of 26 individuals attended the consultation exercise, including children and young people who were critical care survivors; their siblings; parents and carers; health professionals; academics; commissioners; and service managers. Consultation findings indicated that future services, interventions and research must be holistic and family‐centred. Children and young people advisors reported priorities that focused on longer‐term outcomes, whereas adult advisors identified priorities that mapped against the pathways of care. Specific priorities included developing and testing interventions that address unmet communication and information needs. Furthermore, initiatives to optimize the lives and longer‐term functional and psycho‐social outcomes of Paediatric Intensive Care Unit survivors were identified. This consultation exercise provides further evidence of the value of meaningful patient and public involvement in identifying the priorities for research and services for Paediatric Intensive Care Unit survivors and illuminates differences in proposed priorities between children, young people and adult advisors