Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study.

BACKGROUND: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. METHODS: Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. RESULTS: Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. CONCLUSIONS: Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.

Consultant-led UK paediatric palliative care services: professional configuration, services, funding.

OBJECTIVES: To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK. METHODS: Two-part online survey. RESULTS: Survey 1: All 17 medical leads from hospital-based or hospice-based SPPC teams responded to the survey (100% response rate).Only six services met the NICE guidance for minimum SPPC team.All services reported providing symptom management, specialist nursing care, end-of-life planning and care, and supporting discharges and transfers to home or hospice for the child's final days-hours. Most services also provided care coordination (n=14), bereavement support (n=13), clinical psychology (n=10) and social work-welfare support (n=9). Thirteen had one or more posts partially or fully funded by a charity.Survey 2: Nine finance leads provided detailed resource/funding information, finding a range of statutory and charity funding sources. Only one of the National Health Service (NHS)-based services fully funded by the NHS. CONCLUSIONS: One-third of services met the minimum criteria of professional team as defined by NICE. Most services relied on charity funding to fund part or all of one professional post and only one NHS-based service received all its funding directly from the NHS.

End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom [version 1; peer review: 2 approved].

Background: Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The current National Institute for Health and Care Excellence (NICE) guidance provides recommendations about what should be offered, but these are based on low quality evidence. The ENHANCE study aims to identify and investigate the different models of existing end-of-life care provision for infants, children, and young people in the UK, including an assessment of the outcomes and experiences for children and parents, and the cost implications to families and healthcare providers. Methods: This mixed methods study will use three linked workstreams and a cross-cutting health economics theme to examine end-of-life care models in three exemplar clinical settings: infant, children and young adult cancer services (PTCs), paediatric intensive care units (PICUs), and neonatal units (NNUs).Workstream 1 (WS1) will survey current practice in each setting and will result in an outline of the different models of care used. WS2 is a qualitative comparison of the experiences of staff, parents and patients across the different models identified. WS3 is a quantitative assessment of the outcomes, resource use and costs across the different models identified. Discussion: Results from this study will contribute to an understanding of how end-of-life care can provide the greatest benefit for children at the end of their lives. It will also allow us to understand the likely benefits of additional funding in end-of-life care in terms of patient outcomes.

Early removal versus expectant management of central venous catheters in neonates with bloodstream infection.

BACKGROUND: Uncertainty exists regarding the management of newborn infants with a bloodstream infection and a central venous catheter in place. The central venous catheter may act as a nidus for infecting organisms and observational studies have suggested that early removal of the catheter is associated with a lower incidence of persistent or complicated infection. However, since central venous catheters provide secure vascular access to deliver nutrition and medications, the possible harms of early removal versus expectant management also need to be considered. OBJECTIVES: To determine the effect of early removal versus expectant management of central venous catheters on morbidity and mortality in newborn infants with bloodstream infections. SEARCH METHODS: We used the standard search strategy of the Cochrane Neonatal Review Group. This included searches of the Cochrane Central Register of Controlled Trials (CENTRAL 2015, Issue 11), MEDLINE (1966 to October 2015), EMBASE (1980 to October 2015), CINAHL (1982 to October 2015), conference proceedings and previous reviews. SELECTION CRITERIA: Randomised and quasi-randomised controlled trials that compared early removal versus expectant management of central venous catheters in neonates with bloodstream infections. DATA COLLECTION AND ANALYSIS: We used the standard methods of the Cochrane Neonatal Review Group. MAIN RESULTS: We did not identify any eligible randomised controlled trials. AUTHORS' CONCLUSIONS: There are no trial data to guide practice regarding early removal versus expectant management of central venous catheters in newborn infants with bloodstream infections. A simple and pragmatic randomised controlled trial is needed to resolve the uncertainty about optimal management in this common and important clinical scenario.

The effect of parenteral lipid emulsions on pulmonary hemodynamics and eicosanoid metabolites in preterm infants: a pilot study.

BACKGROUND: Soy-based intravenous fat emulsion (IVFE) is known to cause a rise in pulmonary artery pressure in the preterm infant, thought to be mediated through eicosanoid metabolites of linoleic acid. We compared the effect of soy-based IVFE and an olive-oil-based IVFE containing less than half the content of linoleic acid on pulmonary artery pressure and eicosanoid metabolites in preterm infants receiving parenteral nutrition. METHODS: In this pilot study at a regional neonatal intensive care unit (ICU), infants received either a soy-based or olive-oil-based IVFE as part of an otherwise identical feeding protocol. Pulmonary artery pressure and urinary thromboxane B2 and prostaglandin F1 alpha were measured at baseline and maximum lipid infusion. RESULTS: There was a greater fall in pulmonary artery pressure in the olive-oil-based IVFE group compared with the soy-based IVFE group. A decrease in urine thromboxane/prostaglandin F1 alpha ratio was seen only in the olive-oil-based IVFE group. CONCLUSIONS: In the parenterally fed preterm infant, an olive-oil-based IVFE may have a beneficial effect on pulmonary artery pressure when compared with soy-based IVFE. Effects on pulmonary vascular tone are likely to be mediated through alterations in eicosanoid metabolism. A randomized trial is warranted to compare the effects of different lipid emulsions.

Epidemiology and aetiology of neonatal seizures.

Neonatal seizures constitute the most frequent and distinctive neurological symptom in the neonatal period. Seizures in the neonatal period differ considerably from those observed later in life with respect to their aetiological profile and clinical presentation. In addition, the aetiological profile in preterm infants is different from that seen in term infants. Hypoxic-ischaemic encephalopathy is the most frequent cause of neonatal seizures in term babies followed by focal ischaemia (stroke), cerebral malformations and metabolic disturbances. In preterm neonates, intraventricular haemorrhage and infections cause most of the seizures reported in this group. Better neuroimaging techniques have reduced the number of undiagnosed cases, and the institution of newer neuroprotective strategies has influenced the outcome.

Early removal versus expectant management of central venous catheters in neonates with bloodstream infection.

BACKGROUND: Uncertainty exists regarding the management of central venous catheters (CVCs) in neonates with bloodstream infections. Early CVC removal may reduce the risk of persistent or complicated infection and its associated morbidity and mortality. However, since CVCs provide secure vascular access to deliver nutrition and medications, the possible harms of early removal versus expectant management need to be considered. OBJECTIVES: To determine the effect of early removal versus expectant management of CVCs on morbidity and mortality in neonates with bloodstream infections.. SEARCH STRATEGY: We used the standard search strategy of the Cochrane Neonatal Review Group. This included searches of the Cochrane Central Register of Controlled Trials ((CENTRAL), The Cochrane Library, 2011, Issue 1), MEDLINE (1966 to January 2011), EMBASE (1980 to January 2011), CINAHL (1982 to January 2011), conference proceedings, and previous reviews. SELECTION CRITERIA: Randomised and quasi-randomised controlled trials that compared early removal versus expectant management of CVCs in neonates with bloodstream infections. DATA COLLECTION AND ANALYSIS: We used the standard methods of the Cochrane Neonatal Review Group. MAIN RESULTS: We did not identify any eligible randomised controlled trials. AUTHORS' CONCLUSIONS: There are no trial data to guide practice regarding early removal versus expectant management of CVCs in neonates with bloodstream infections. While observational data generally indicate that early removal is associated with a lower incidence of persistent or complicated infection, caution should be exercised in applying these findings to practice because of inherent biases in the study design. A simple and pragmatic randomised controlled trial is needed to resolve the uncertainty about optimal management in this common and important clinical scenario.

Climate change and child health.

Postindustrial human activity has contributed to rising atmospheric levels of greenhouse gases causing global warming and climate change. The adverse effects of climate change affect children disproportionately, especially in the developing world. Urgent action is necessary to mitigate the causes and adapt to the negative effects of climate change. Paediatricians have an important role in managing the effects of climate change on children and promoting sustainable development.

Fetal and perinatal consequences of maternal obesity.

In many industrialised countries, one in five women booking for antenatal care is obese. As well as affecting maternal health, maternal obesity may have important adverse consequences for fetal, neonatal and long-term health and well-being. Maternal obesity is associated with a higher risk of stillbirth, elective preterm birth and perinatal mortality. The incidence of severe birth defects, particularly neural tube and structural cardiac defects, appears to be higher in infants of obese mothers. Fetal macrosomia associated with maternal obesity and gestational diabetes predisposes infants to birth injuries, perinatal asphyxia and transitional problems such as neonatal respiratory distress and metabolic instability. Maternal obesity may also result in long-term health problems for offspring secondary to perinatal problems and to intrauterine and postnatal programming effects. Currently, the available interventions to prevent and treat maternal obesity are of limited proven utility and further research is needed to define the effects of maternal weight management interventions on fetal and neonatal outcomes.