The work involved the embedding of developmentally appropriate healthcare and NICE guidance for transition (NG43, QS140, 2016) on a Trust-wide basis across a large acute Trust to improve transition and health care for young people aged 16-25.
Aim
The aim of the study was to identify remediable factors
in the care provided to people who were receiving, or
had received, long-term ventilation (LTV) up to their
25th birthday.
Method
Data were collected from a number of sources to achieve
an overall view of the care provided to this group. Data
presented in the report highlights: the number of people
identified on LTV during the study period; the clinical care
provided to a subgroup of people on LTV; the organisation
of LTV services; the views of service users, parent carers and
health and social care professionals providing the care.
Key messages
The five key messages listed here, agreed as the
primary focus for action, have been derived from 12
recommendations (see pages 11-14 and Appendix 1).
1. SERVICE PLANNING AND COMMISSIONING OF INTEGRATED CARE
Formalisation of the service planning and commissioning of
LTV services through an integrated network of care providers
is required. The aim would be to reduce variability in access
to areas such as therapy services in and out of hospital,
facilitate discharge, enable respite care and simplify how
ventilator equipment is purchased and serviced.
2. MULTIDISCIPLINARY CARE
Improved access to an appropriate multidisciplinary care
team is needed to ensure people on LTV and their parent
carers can be supported in the community as well as during
an admission to hospital.
3. EMERGENCY HEALTHCARE PLANS
Templates for Emergency Healthcare Plans should be
developed and standardised for people receiving LTV.
They should provide information about what to do and
who to contact in an emergency situation. They should
form part of hand-held records that are fully accessible to
the person receiving LTV, parent carers and the health and
social care teams.
4. DISCHARGE PLANNING
Active discharge planning should start at the point of an
admission and include all relevant members of the integrated
care network to enable a prompt and safe discharge home
or to other community services. The discharge plan should
reflect any changes in respiratory care.
5. TRANSITION FROM CHILD TO ADULT SERVICES
Transition planning should minimise disruption and
prepare for any necessary changes that will occur. Effective
leadership for planning transition of care should be
encouraged to ensure children access adult LTV services
easily. There should be no gap in the provision of LTV care.
Link to report pages here
Pediatric Critical Care Medicine: September 20, 2019 – Volume Online First – Issue
There are scarce data about the prevalence and mortality of necrotizing enterocolitis in neonates with congenital heart disease. The purpose of this study is to provide a multi-institutional description and comparison of the overall prevalence and mortality of necrotizing enterocolitis in neonates with congenital heart disease.
Retrospective multi-institutional study.
The Pediatric Health Information System database.
Neonates with congenital heart disease between 2004 and 2014.
None.
The primary study measure is the prevalence of necrotizing enterocolitis. Secondary measures include in-hospital mortality, hospital charges, ICU length of stay, hospital length of stay, and 30-day readmission. The prevalence of necrotizing enterocolitis was 3.7% (1,448/38,770) and varied significantly among different congenital heart disease diagnoses. The lowest prevalence of necrotizing enterocolitis was in transposition of the great arteries (n = 104, 2.1%). Compared with transposition of the great arteries, necrotizing enterocolitis occurred more frequently in neonates with hypoplastic left heart syndrome (odds ratio, 2.7; 95% CI, 2.1–3.3), truncus arteriosus (odds ratio, 2.6; 95% CI, 1.9–3.5), common ventricle (odds ratio, 2.1; 95% CI, 1.5–2.8), and aortic arch obstruction (odds ratio, 1.4; 95% CI, 1.1–1.7). Prematurity is a significant risk factor for necrotizing enterocolitis and for mortality in neonates with necrotizing enterocolitis, conferring varying risk by cardiac diagnosis. Unadjusted mortality associated with necrotizing enterocolitis was 24.4% (vs 11.8% in neonates without necrotizing enterocolitis; p < 0.001), and necrotizing enterocolitis increased the adjusted mortality in neonates with transposition of the great arteries (odds ratio, 2.5; 95% CI, 1.5–4.4), aortic arch obstruction (odds ratio, 1.8; 95% CI, 1.3–2.6), and tetralogy of Fallot (odds ratio, 1.6; 95% CI, 1.1–2.4). Necrotizing enterocolitis was associated with increased hospital charges (p < 0.0001), ICU length of stay (p = 0.001), and length of stay (p = 0.001).
The prevalence of necrotizing enterocolitis among neonates with congenital heart disease is 3.7% and is associated with increased in-hospital mortality, length of stay, and hospital charges. The prevalence and associated mortality of necrotizing enterocolitis in congenital heart disease vary among different heart defects.
Paediatrics and Child Health
Volume 30, Issue 2, February 2020, Pages 79-83
In the context of intense media and societal scrutiny, on a background of limited scientific evidence, the prescription of cannabis based products for medicinal use (CBPMs) has led to much stress – for clinicians and parents alike- in the medical management of children and young people. This review aims to summarize the recent legal changes to CBPMs and highlights the current evidence for the use of these products in drug-resistant epilepsy and spasticity. The review offers practical guidance for clinicians seeing families who are seeking CBPMs, and summarizes recommended indications, risks and benefits of this group of medications in the management of children with neurodisabilities.
Link to abstract here
Staff can request full text via our Article / Book request service here
BMC Pediatrics volume 20, Article number: 14 (2020)
Rapid magnetic resonance imaging (MRI) protocols may be effective in the emergency department (ED) to evaluate nontraumatic neurologic complaints. We evaluate neuroimaging (rapid MRI [rMRI]), head computerized tomography [HCT], and full MRI) use following widespread implementation of rMRI protocols in a pediatric emergency department (ED).
We conducted a retrospective study in a tertiary care pediatric ED of encounters with neuroimaging during two 9-month periods: one prior to (control period) and one after generalized availability of 4 rMRI protocols (rMRI period). The primary outcome was differences in neuroimaging rates between the two periods. Secondary outcomes included ED process measures, unsuccessful imaging, and undetected pathology, with full MRI within 14 days as the reference standard.
There were 1052 encounters with neuroimaging during the control and 1308 during the rMRI periods. Differences in neuroimaging between periods were 27.7% for rMRI (95% CI, 24.4, 31.0), − 21.5% for HCT (95% CI, − 25.5, − 17.5), and − 6.2% for full MRI (95% CI, − 9.3, − 3.1%.) Time to imaging (182 [IQR 138–255] versus 86 [IQR 52–137] minutes) as well as ED length of stay (396 [IQR 304–484] versus 257 [IQR 196–334] minutes) was longer for rMRI versus HCT (p < 0.01). Between the control and rMRI periods, there were differences in types of neuroimaging performed for patients with altered mental status, headache, seizure, shunt dysfunction, stroke, syncope, trauma, vomiting, infection, and other neurologic complaints (p < 0.05). rMRI studies were unsuccessful in 3.6% of studies versus 0.0% of HCTs (p < 0.01). The 22 unsuccessful rMRI studies were unsuccessful due to artifacts from dental hardware (n = 2) and patient motion (n = 20). None of the rMRI studies with full MRI follow-up imaging had undetected pathology; the false negative rate for the HCT exams was as high as 25%.
After routine ED use of 4 rMRI protocols, there was a more than 20% decrease in HCT use without missed diagnoses. Time to neuroimaging and length of stay were longer for rMRI than HCT, with higher rates of unsuccessful imaging. Despite these limitations, rMRI may be an alternative to HCT for nontraumatic complaints in the ED.
Link to full text here
BMC Pediatrics volume 20, Article number: 14 (2020)
Rapid magnetic resonance imaging (MRI) protocols may be effective in the emergency department (ED) to evaluate nontraumatic neurologic complaints. We evaluate neuroimaging (rapid MRI [rMRI]), head computerized tomography [HCT], and full MRI) use following widespread implementation of rMRI protocols in a pediatric emergency department (ED).
We conducted a retrospective study in a tertiary care pediatric ED of encounters with neuroimaging during two 9-month periods: one prior to (control period) and one after generalized availability of 4 rMRI protocols (rMRI period). The primary outcome was differences in neuroimaging rates between the two periods. Secondary outcomes included ED process measures, unsuccessful imaging, and undetected pathology, with full MRI within 14 days as the reference standard.
There were 1052 encounters with neuroimaging during the control and 1308 during the rMRI periods. Differences in neuroimaging between periods were 27.7% for rMRI (95% CI, 24.4, 31.0), − 21.5% for HCT (95% CI, − 25.5, − 17.5), and − 6.2% for full MRI (95% CI, − 9.3, − 3.1%.) Time to imaging (182 [IQR 138–255] versus 86 [IQR 52–137] minutes) as well as ED length of stay (396 [IQR 304–484] versus 257 [IQR 196–334] minutes) was longer for rMRI versus HCT (p < 0.01). Between the control and rMRI periods, there were differences in types of neuroimaging performed for patients with altered mental status, headache, seizure, shunt dysfunction, stroke, syncope, trauma, vomiting, infection, and other neurologic complaints (p < 0.05). rMRI studies were unsuccessful in 3.6% of studies versus 0.0% of HCTs (p < 0.01). The 22 unsuccessful rMRI studies were unsuccessful due to artifacts from dental hardware (n = 2) and patient motion (n = 20). None of the rMRI studies with full MRI follow-up imaging had undetected pathology; the false negative rate for the HCT exams was as high as 25%.
After routine ED use of 4 rMRI protocols, there was a more than 20% decrease in HCT use without missed diagnoses. Time to neuroimaging and length of stay were longer for rMRI than HCT, with higher rates of unsuccessful imaging. Despite these limitations, rMRI may be an alternative to HCT for nontraumatic complaints in the ED.
Link to full text here
BMC Pediatrics volume 20, Article number: 35 (2020)
The relationship between constipation and childhood nocturnal enuresis (NE) has been previously reported; however, this relationship remains controversial. The present study aimed to evaluate the association between constipation and childhood NE.
Data from the Longitudinal Health Insurance Database 2000 (LHID 2000) of Taiwan National Health Insurance Research Database from 2000 to 2013 were collected. A total of 2286 children were enrolled in this study: a case group of 1143 children aged 5–18 years who were diagnosed with NE (NE group) and an age- and sex-matched control group of 1143 children without NE. Conditional logistic regression and odds ratio (OR) for NE were used to examine the association between constipation and childhood NE.
The prevalence of NE in the case group (NE group, aged 5–18 years) was 1.03% from 2000 to 2013. The NE group had a higher percentage of constipation in 1 year before the diagnosis of NE. After stratification for sex, both boys and girls with constipation had higher OR for NE. With stratification for age, children aged 5–12 and 7–12 years had a higher OR for NE.
Constipation is associated with childhood NE in Taiwan, particularly in children aged 5–7 and 7–12 years.
Link to full text here
BMC Pediatrics volume 20, Article number: 36 (2020)
Neonatal seizures are difficult to diagnose and, when they are, tradition dictates first line treatment is phenobarbital. There is little data on how consultants diagnose neonatal seizures, choose when to treat or how they choose aetiological investigations or drug treatments. The purpose of this study was to assess the variation across the UK in the management of neonatal seizures and explore paediatricians’ views on their diagnosis and treatment.
An explanatory sequential mixed methods approach was used (QUAN→QUAL) with equal waiting between stages. We collected quantitative data from neonatology staff and paediatric neurologists using a questionnaire sent to neonatal units and via emails from the British Paediatric Neurology Association. We asked for copies of neonatal unit guidelines on the management of seizures. The data from questionnaires was used to identify16 consultants using semi-structured interviews. Thematic analysis was used to interpret qualitative data, which was triangulated with quantitative questionnaire data.
One hundred questionnaires were returned: 47.7% thought levetiracetam was as, or equally, effective as phenobarbital; 9.2% thought it was less effective. 79.6% of clinicians had seen no side effects in neonates with levetiracetam. 97.8% of unit guidelines recommended phenobarbital first line, with wide variation in subsequent drug choice, aetiological investigations, and advice on when to start treatment. Thematic analysis revealed three themes: ‘Managing uncertainty with neonatal seizures’, ‘Moving practice forward’ and ‘Multidisciplinary team working’. Consultants noted collecting evidence on anti-convulsant drugs in neonates is problematic, and recommended a number of solutions, including collaboration to reach consensus guidelines, to reduce diagnostic and management uncertainty.
There is wide variation in the management of neonatal seizures and clinicians face many uncertainties. Our data has helped reveal some of the reasons for current practice and decision making. Suggestions to improve certainty include: educational initiatives to improve the ability of neonatal staff to describe suspicious events, greater use of video, closer working between neonatologists and neurologists, further research, and a national discussion to reach a consensus on a standardised approach to managing neonatal epileptic seizures.
Link to full text here
BMC Pediatrics volume 20, Article number: 39 (2020)
Little is known whether children experience pain during hospital stay from the child’s own perspective or not. The existing studies tend to be based on a small number of children and therefore have limitations concerning the generalisability of the results.
The aim of this study was to describe children’s self-reported pain and experience concerning pain management during hospital stay.
This study has a quantitative cross-sectional design with descriptive statistics as data analysis.
A total of 786 questionnaires, Pain in Children in Hospital, were distributed in four countries with the response rate of 75% which was almost equal between countries. Our result showed that 87% (503/579) children at hospital self-reported pain during the past 24 h. Nearly 63% of the children reported a pain score of > 5 the last 24 h. Most of children reported that they had received a question about pain from the hospital staff, and that the staff observed and assessed their pain. Totally 95% reported that they were satisfied with their pain relief during the last 24 h.
Our study showed that when children were given the possibility to self-report pain, nearly 2/3 expressed that they had experienced pain during hospital stay. However, most of them reported satisfaction with pain management and their pain relief.
Link to full text here
BMC Pediatrics volume 20, Article number: 46 (2020)
Intrapartum-related hypoxic events are a major cause of morbidity and mortality in low resource countries. Neonates who receive proper resuscitation may go on to live otherwise healthy lives. However, even when a birth attendant is present, these babies frequently receive suboptimal ventilation with poor outcomes. The Augmented Infant Resuscitator (AIR) is a low-cost, reusable device designed to provide birth attendants real-time objective feedback on measures of ventilation quality during resuscitations and is intended for use in training and at the point of care. The goal of our study was to determine the impact and cost-effectiveness of AIR deployment in conjunction with existing resuscitation training programs in low resource settings.
We developed a simulation model of the natural history of intrapartum-related neonatal hypoxia and resuscitation deriving parameters from published literature and model calibration. Simulations estimated the number of disability-adjusted life years (DALYs) averted with use of the AIR by birth attendants if deployed at the point of care. Potential decreases in neonatal mortality and long-term subsequent morbidity from disability were modeled over a lifetime horizon. The primary outcome for the analysis was the cost per DALY averted. Model parameters were specific to the Mbeya region of Tanzania.
Implementation of the AIR strategy resulted in an additional cost of $24.44 (4.80, 73.62) per DALY averted on top of the cost of existing, validated resuscitation programs. Per hospital, this adds an extra $656 to initial training costs and averts approximately 26.84 years of disability in the cohort of children born in the first year, when projected over a lifetime. The findings were robust to sensitivity analyses. Total roll-out costs for AIR are estimated at $422,688 for the Mbeya region, averting approximately 9018 DALYs on top of existing resuscitation programs, which are estimated to cost $202,240 without AIR.
Our modeling analysis finds that use of the AIR device may be both an effective and cost-effective tool when used as a supplement to existing resuscitation training programs. Implementation of this strategy in multiple settings will provide data to improve our model parameters and potentially confirm our findings.
Link to full text here
Paediatrics 