Improving service coordination for children with complex needs

Although recognised by policy incentives shaping children's services, research and service development for children with complex healthcare needs have received limited attention. Both health-care professionals and families of those children affected frequently report fragmented care and unmet needs in the literature. Not only is the wellbeing of the family and health of the child jeopardised, but also the lack of consistent service coordination between diagnosis, impairment, functional need or disability, directly contributes to a lack of data for the subgroup of children with complex healthcare needs. In this scoping review, key themes are identified, proposing priorities for innovation of future services. It is clear from the literature, longitudinal data analysis providing a more accessible platform for service evaluation and improvement, specialist training for key workers, and further research around definitions and classification systems, is lacking

Prospective paediatric intensive care registry in Latvia : one year outcomes

Background: In Latvia, there is a single eight-bed paediatric intensive care unit (PICU) where all critically ill children are admitted. A recent retrospective audit of the outcomes of paediatric critical care in this unit revealed a high number of unplanned extubations and excess crude mortality. In 2017, our centre joined the UK and Ireland based Paediatric Intensive Care Audit Network (PICANet) as a pilot project to investigate the feasibility of developing a paediatric critical care registry in Latvia and in the Baltic states. Methods: Riga Stradins University Ethics Committee approved the study. Anonymized data on all patients admitted to our unit from 1 June, 2017 to 31 May 2018 were prospectively entered onto the PICANet database. Results: A total of 774 PICU admissions were analysed; 45% of admissions were elective. The median age was 59 months (IQR: 14-149). The highest admission rate was on Wednesdays representing the flow of elective surgical patients. The median length of stay was 0.95 days (IQR: 0.79-1.98). Twenty-five percent required respiratory support. The expected number of deaths estimated using the Paediatric Index of Mortality 3 (PIM 3) 15.16; 15 patients (1.94%) died resulting in Standartized Mortality Ratio (SMR) of 0.99 (95% CI 0.57-1.60). The emergency readmission rate within 48 hours after PICU discharge was 0.9%. There were 1.8 unplanned extubations per 100 invasive ventilation days. Other paediatric intensive care audit networks reported similar adjusted mortality rates but lower rates of unplanned extubations. Thirty days after PICU discharge, 653 (84.36%) patients were alive and outside hospital, 98 (12.66%) were inpatients, six (0.78%) had died, two (0.26%) were lost to the follow-up. We observed a marked peak of infant emergency respiratory admissions in February. Conclusions: This project explored the possibility of prospective paediatric critical care audit in Latvia by joining an established international network. This allowed direct comparison of outcomes between the countries. Excess mortality was not observed during one-year data collection period, however a high rate of unplanned extubations was revealed. The results allowed a better planning of elective patient flow by spreading elective cases over the week to avoid "rush hours".publishersversionPeer reviewe

Risk of bloodstream infection in children admitted to paediatric intensive care units in England and Wales following emergency inter-hospital transfer.

PURPOSE: Adherence to full sterile procedures may be compromised when central venous catheters are inserted as part of emergency resuscitation and stabilisation, particularly outside the intensive care unit. Half of emergency admissions to paediatric intensive care units (PICU) in the UK occur after stabilisation at other hospitals. We determined whether bloodstream infection (BSI) occurred more frequently in children admitted to PICU after inter-hospital transfer compared to within-hospital admissions. METHODS: Data on emergency admissions to 20 PICUs in England and Wales for children <16 years between 2003-2012 were linked from the national PICU audit database (PICANet) and national infection surveillance (LabBase2). PICU-acquired BSI was defined as any positive blood culture sampled between 2 days after admission and 2 days following discharge from PICU. RESULTS: A total of 32,861/62,515 (53%) admissions were inter-hospital transfers. Multivariable regression showed no significant difference in rates of PICU-acquired BSI by source of admission (incidence-rate ratio for inter-hospital transfer versus within-hospital admission = 0.97; 95% CI 0.87-1.07) after adjusting for other risk-factors. Rates decreased more rapidly between 2003 and 2012 for inter-hospital transfers: 17.0% (95% CI 14.9-19.0% per year) compared with 12.4% (95% CI 9.9-14.9% per year) for within-hospital admissions. The median time to first PICU-acquired BSI did not differ significantly between inter-hospital transfers (7 days; IQR 4-13) and within-hospital admissions (8 days; IQR 4-15). CONCLUSIONS: Nationally, inter-hospital transfer is no longer a significant risk factor for PICU-acquired BSI. Given the large proportion of infection occurring in the second week of admission, initiatives to further reduce PICU-acquired BSI should focus on maintaining sterile procedures after admission

GPs’ role in caring for children and young people with life-limiting conditions: a retrospective cohort study

Background: GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic diseases. Aim: To investigate the association between GP attendance patterns and hospital urgent and emergency care use. Design and setting: Retrospective cohort study using a primary care data source (Clinical Practice Research Datalink) in England. The cohort numbered 19 888. Method: CYP aged 0–25 years with an LLC were identified using Read codes (primary care) or International Classification of Diseases 10 th Revision (ICD-10) codes (secondary care). Emergency inpatient admissions and accident and emergency (A&E) attendances were separately analysed using multivariable, two-level random intercept negative binomial models with key variables of consistency and regularity of GP attendances. Results: Face-to-face GP surgery consultations reduced, from a mean of 7.12 per person year in 2000 to 4.43 in 2015. Those consulting the GP less regularly had 15% (95% confidence interval [CI] = 10% to 20%) more emergency admissions and 5% more A&E visits (95% CI = 1% to 10%) than those with more regular consultations. CYP who had greater consistency of GP seen had 10% (95% CI = 6% to 14%) fewer A&E attendances but no significant difference in emergency inpatient admissions than those with lower consistency. Conclusion: There is an association between GP attendance patterns and use of urgent secondary care for CYP with LLCs, with less regular GP attendance associated with higher urgent secondary healthcare use. This is an important area for further investigation and warrants the attention of policymakers and GPs, as the number of CYP with LLCs living in the community rises

Children in Scotland Requiring Palliative Care : identifying numbers and needs (The ChiSP Study)

This report sets out the findings from an investigation into the numbers of children and young people with life-limiting conditions in Scotland, and what current evidence tells us about their, and their families’, psychosocial support needs. The overall purpose of the study was to develop an evidence base to support and inform planning for children’s palliative care in Scotland. It is hoped that the evidence generated will be a resource to organisations with responsibility for, or delivering services to, children and young people with life-limiting conditions

Ethnic differences in the clustering and outcomes of health behaviours during pregnancy: results from the Born in Bradford cohort

OBJECTIVE. Pregnancy is a time of optimal motivation for many women to make positive behavioural changes. We aim to describe pregnant women with similar patterns of self-reported health behaviours and examine associations with birth outcomes. METHODS. We examined the clustering of multiple health behaviours during pregnancy in the Born in Bradford cohort, including smoking physical inactivity, vitamin d supplementation, and exposure to second hand smoke. Latent class analysis was used to identify groups of individuals with similar patterns of health behaviours separately for White British (WB) and Pakistani mothers. Multinomial regression was then used to examine the association between group membership and birth outcomes, which included preterm birth and mean birth weight. RESULTS. For WB mothers, offspring of those in the ‘Unhealthiest’ group had lower mean birth weight than those in the ‘Mostly healthy but inactive’ class, although no association was observed for preterm birth. For Pakistani mothers, group membership was not associated with birth weight differences, although the odds of preterm birth was higher in ‘Inactive smokers’ compared to the ‘Mostly healthy but inactive’ group. CONCLUSION. The use of latent class methods provides important information about the clustering of health behaviours which can be used to target population segments requiring behaviour change interventions considering multiple risk factors. Given the dominant negative association of smoking with the birth outcomes investigated, latent class groupings of other health behaviours may not confer additional risk information for these outcomes

Ethnic and socioeconomic variation in incidence of congenital heart defects

Introduction: Ethnic differences in the birth prevalence of congenital heart defects (CHDs) have been reported; however, studies of the contemporary UK population are lacking. We investigated ethnic variations in incidence of serious CHDs requiring cardiac intervention before 1 year of age. Methods: All infants who had a cardiac intervention in England and Wales between 1 January 2005 and 31 December 2010 were identified in the national congenital heart disease surgical audit and matched with paediatric intensive care admission records to create linked individual child records. Agreement in reporting of ethnic group by each audit was evaluated. For infants born 1 January 2006 to 31 December 2009, we calculated incidence rate ratios (IRRs) for CHDs by ethnicity and investigated age at intervention, antenatal diagnosis and area deprivation. Results: We identified 5350 infants (2940 (55.0%) boys). Overall CHD incidence was significantly higher in Asian and Black ethnic groups compared with the White reference population (incidence rate ratios (IRR) (95% CIs): Asian 1.5 (1.4 to 1.7); Black 1.4 (1.3 to 1.6)); incidence of specific CHDs varied by ethnicity. No significant differences in age at intervention or antenatal diagnosis rates were identified but affected children from non-White ethnic groups were more likely to be living in deprived areas than White children. Conclusions: Significant ethnic variations exist in the incidence of CHDs, including for specific defects with high infant mortality. It is essential that healthcare provision mitigates ethnic disparity, including through timely identification of CHDs at screening, supporting parental choice and effective interventions. Future research should explore the factors underlying ethnic variation and impact on longer-term outcomes

Co-ordinated multidisciplinary intervention to reduce time to successful extubation for children on mechanical ventilation: the SANDWICH cluster stepped-wedge RCT

BACKGROUND: Daily assessment of patient readiness for liberation from invasive mechanical ventilation can reduce the duration of ventilation. However, there is uncertainty about the effectiveness of this in a paediatric population. OBJECTIVES: To determine the effect of a ventilation liberation intervention in critically ill children who are anticipated to have a prolonged duration of mechanical ventilation (primary objective) and in all children (secondary objective). DESIGN: A pragmatic, stepped-wedge, cluster randomised trial with economic and process evaluations. SETTING: Paediatric intensive care units in the UK. PARTICIPANTS: Invasively mechanically ventilated children (aged < 16 years). INTERVENTIONS: The intervention incorporated co-ordinated multidisciplinary care, patient-relevant sedation plans linked to sedation assessment, assessment of ventilation parameters with a higher than usual trigger for undertaking an extubation readiness test and a spontaneous breathing trial on low levels of respiratory support to test extubation readiness. The comparator was usual care. Hospital sites were randomised sequentially to transition from control to intervention and were non-blinded. MAIN OUTCOME MEASURES: The primary outcome measure was the duration of invasive mechanical ventilation until the first successful extubation. The secondary outcome measures were successful extubation, unplanned extubation and reintubation, post-extubation use of non-invasive ventilation, tracheostomy, post-extubation stridor, adverse events, length of intensive care and hospital stay, mortality and cost per respiratory complication avoided at 28 days. RESULTS: The trial included 10,495 patient admissions from 18 paediatric intensive care units from 5 February 2018 to 14 October 2019. In children with anticipated prolonged ventilation (n = 8843 admissions: control, n = 4155; intervention, n = 4688), the intervention resulted in a significantly shorter time to successful extubation [cluster and time-adjusted median difference -6.1 hours (interquartile range -8.2 to -5.3 hours); adjusted hazard ratio 1.11, 95% confidence interval 1.02 to 1.20; p = 0.02] and a higher incidence of successful extubation (adjusted relative risk 1.01, 95% confidence interval 1.00 to 1.02; p = 0.03) and unplanned extubation (adjusted relative risk 1.62, 95% confidence interval 1.05 to 2.51; p = 0.03), but not reintubation (adjusted relative risk 1.10, 95% confidence interval 0.89 to 1.36; p = 0.38). In the intervention period, the use of post-extubation non-invasive ventilation was significantly higher (adjusted relative risk 1.22, 95% confidence interval 1.01 to 1.49; p = 0.04), with no evidence of a difference in intensive care length of stay or other harms, but hospital length of stay was longer (adjusted hazard ratio 0.89, 95% confidence interval 0.81 to 0.97; p = 0.01). Findings for all children were broadly similar. The control period was associated with lower, but not statistically significantly lower, total costs (cost difference, mean £929.05, 95% confidence interval -£516.54 to £2374.64) and significantly fewer respiratory complications avoided (mean difference -0.10, 95% confidence interval -0.16 to -0.03). LIMITATIONS: The unblinded intervention assignment may have resulted in performance or detection bias. It was not possible to determine which components were primarily responsible for the observed effect. Treatment effect in a more homogeneous group remains to be determined. CONCLUSIONS: The intervention resulted in a statistically significant small reduction in time to first successful extubation; thus, the clinical importance of the effect size is uncertain. FUTURE WORK: Future work should explore intervention sustainability and effects of the intervention in other paediatric populations