Uncharted territory: a narrative review of parental involvement in decision-making about late preterm and early term delivery.

Almost 30% of live births in England and Wales occur late preterm or early term (LPET) and are associated with increased risks of adverse health outcomes throughout the lifespan. However, very little is known about the decision-making processes concerning planned LPET births or the involvement of parents in these. This aim of this paper is to review the evidence on parental involvement in obstetric decision-making in general, to consider what can be extrapolated to decisions about LPET delivery, and to suggest directions for further research.A comprehensive, narrative review of relevant literature was conducted using Medline, MIDIRS, PsycInfo and CINAHL databases. Appropriate search terms were combined with Boolean operators to ensure the following broad areas were included: obstetric decision-making, parental involvement, late preterm and early term birth, and mode of delivery.This review suggests that parents' preferences with respect to their inclusion in decision-making vary. Most mothers prefer sharing decision-making with their clinicians and up to half are dissatisfied with the extent of their involvement. Clinicians' opinions on the limits of parental involvement, especially where the safety of mother or baby is potentially compromised, are highly influential in the obstetric decision-making process. Other important factors include contextual factors (such as the nature of the issue under discussion and the presence or absence of relevant medical indications for a requested intervention), demographic and other individual characteristics (such as ethnicity and parity), the quality of communication; and the information provided to parents.This review highlights the overarching need to explore how decisions about potential LPET delivery may be reached in order to maximise the satisfaction of mothers and fathers with their involvement in the decision-making process whilst simultaneously enabling clinicians both to minimise the number of LPET births and to optimise the wellbeing of women and babies.

Neonatal health care costs of very preterm babies in England: a retrospective analysis of a national birth cohort.

OBJECTIVES: Babies born between 27+0 and 31+6 weeks of gestation represent the largest group of very preterm babies requiring National Health Service (NHS) care; however, up-to-date, cost figures for the UK are not currently available. This study estimates neonatal costs to hospital discharge for this group of very preterm babies in England. DESIGN: Retrospective analysis of resource use data recorded within the National Neonatal Research Database. SETTING: Neonatal units in England. PATIENTS: Babies born between 27+0 and 31+6 weeks of gestation in England and discharged from a neonatal unit between 2014 and 2018. MAIN OUTCOME MEASURES: Days receiving different levels of neonatal care were costed, along with other specialised clinical activities. Mean resource use and costs per baby are presented by gestational age at birth, along with total costs for the cohort. RESULTS: Based on data for 28 154 very preterm babies, the annual total costs of neonatal care were estimated to be £262 million, with 96% of costs attributable to routine daily care provided by units. The mean (SD) total cost per baby of this routine care varied by gestational age at birth; £75 594 (£34 874) at 27 weeks as compared with £27 401 (£14 947) at 31 weeks. CONCLUSIONS: Neonatal healthcare costs for very preterm babies vary substantially by gestational age at birth. The findings presented here are a useful resource to stakeholders including NHS managers, clinicians, researchers and policymakers.

Exploring variation in quality of care and clinical outcomes between neonatal units: a novel use for the UK National Neonatal Audit Programme (NNAP).

Neonatology is a relatively new specialty, in which much of the practice remains non-evidence based. Variation in the quality of care delivered is recognised but measuring this is challenging. One possible indicator of this is variation in practice. For more than a decade, the National Neonatal Audit Project (NNAP) has described variation in practice between UK neonatal units in relation to its annually reviewed audit measures. These are based on evidence based national standards or developed by a consensus method and have become de facto measures defining good quality of neonatal healthcare within the UK. In this article we explore the practicality of using the NNAP to look for associations between quality of care and outcomes. This would not be to validate the measures but could help towards a better understanding of the reasons underlying recognised variation in outcomes, even between neonatal units of the same designation.

National priority setting partnership using a Delphi consensus process to develop neonatal research questions suitable for practice-changing randomised trials in the United Kingdom.

INTRODUCTION: Methodologically robust clinical trials are required to improve neonatal care and reduce unwanted variations in practice. Previous neonatal research prioritisation processes have identified important research themes rather than specific research questions amenable to clinical trials. Practice-changing trials require well-defined research questions, commonly organised using the Population, Intervention, Comparison, Outcome (PICO) structure. By narrowing the scope of research priorities to those which can be answered in clinical trials and by involving a wide range of different stakeholders, we aim to provide a robust and transparent process to identify and prioritise research questions answerable within the National Healthcare System to inform future practice-changing clinical trials. METHODS AND ANALYSIS: A steering group comprising parents, doctors, nurses, allied health professionals, researchers and representatives from key organisations (Neonatal Society, British Association of Perinatal Medicine, Neonatal Nurses Association and Royal College of Paediatrics and Child Health) was identified to oversee this project. We will invite submissions of research questions formatted using the PICO structure from the following stakeholder groups using an online questionnaire: parents, patients, healthcare professionals and academic researchers. Unanswered, non-duplicate research questions will be entered into a three-round eDelphi survey of all stakeholder groups. Research questions will be ranked by mean aggregate scores. ETHICS AND DISSEMINATION: The final list of prioritised research questions will be disseminated through traditional academic channels, directly to key stakeholder groups through representative organisations and on social media. The outcome of the project will be shared with key research organisations such as the National Institute for Health Research. Research ethics committee approval is not required.

Development of a Smoke-Free Home Intervention for Families of Babies Admitted to Neonatal Intensive Care.

Neonatal intensive care units (NICUs) have a disproportionately higher number of parents who smoke tobacco compared to the general population. A baby's NICU admission offers a unique time to prompt behaviour change, and to emphasise the dangerous health risks of environmental tobacco smoke exposure to vulnerable infants. We sought to explore the views of mothers, fathers, wider family members, and healthcare professionals to develop an intervention to promote smoke-free homes, delivered on NICU. This article reports findings of a qualitative interview and focus group study with parents whose infants were in NICU (n = 42) and NICU healthcare professionals (n = 23). Thematic analysis was conducted to deductively explore aspects of intervention development including initiation, timing, components and delivery. Analysis of inductively occurring themes was also undertaken. Findings demonstrated that both parents and healthcare professionals supported the need for intervention. They felt it should be positioned around the promotion of smoke-free homes, but to achieve that end goal might incorporate direct cessation support during the NICU stay, support to stay smoke free (relapse prevention), and support and guidance for discussing smoking with family and household visitors. Qualitative analysis mapped well to an intervention based around the '3As' approach (ask, advise, act). This informed a logic model and intervention pathway.

New techniques, new challenges-The dilemma of pain management for less invasive surfactant administration?

Recent years have seen the increasing use of noninvasive respiratory support in preterm infants with the aim of minimizing the risk of mechanical ventilation and subsequent bronchopulmonary dysplasia. Respiratory distress syndrome is the most common respiratory diagnosis in preterm infants, and is best treated by administration of surfactant. Until recently, this has been performed via an endotracheal tube using premedication, which has often included opiate analgesia; subsequently, the infant has been ventilated. Avoidance of mechanical ventilation, however, does not negate the need for surfactant therapy. Less invasive surfactant administration (LISA) in spontaneously breathing infants is increasing in popularity, and appears to have beneficial effects. However, laryngoscopy is necessary, which carries adverse effects and is painful for the infant. Conventional methods of premedication for intubation tend to reduce respiratory drive, which increases the likelihood of ventilation being required. This has led to intense debate about the best strategy for providing appropriate treatment, taking into account both the respiratory needs of the infant and the need to alleviate procedural pain. Currently, clinical practice varies considerably and there is no consensus with respect to optimal management. This review seeks to summarize the benefits, risks, and challenges associated with this new approach.

Systematic Review of Behaviour Change Techniques within Interventions to Reduce Environmental Tobacco Smoke Exposure for Children.

Children are particularly vulnerable to environmental tobacco smoke (ETS). There is no routine support to reduce ETS in the home. We systematically reviewed trials to reduce ETS in children in order to identify intervention characteristics and behaviour change techniques (BCTs) to inform future interventions. We searched Medline, EMBASE, CINAHL, PsycINFO, ERIC, Cochrane Central Register of Controlled Trials, and Cochrane Tobacco Addiction Group Specialised Register from January 2017 to June 2020 to update an existing systematic review. We included controlled trials to reduce parent/caregiver smoking or ETS in children <12 years that demonstrated a statistically significant benefit, in comparison to less intensive interventions or usual care. We extracted trial characteristics; and BCTs using Behaviour Change Technique Taxonomy v1. We defined "promising" BCTs as those present in at least 25% of effective interventions. Data synthesis was narrative. We included 16 trials, of which eight were at low risk of bias. All trials used counselling in combination with self-help or other supporting materials. We identified 13 "promising" BCTs centred on education, setting goals and planning, or support to reach goals. Interventions to reduce ETS in children should incorporate effective BCTs and consider counselling and self-help as mechanisms of delivery.

The impact of level of neonatal care provision on outcomes for preterm babies born between 27 and 31 weeks of gestation, or with a birth weight between 1000 and 1500 g: a review of the literature.

OBJECTIVE: There is evidence that birth and care in a maternity service associated with a neonatal intensive care unit (NICU) is associated with improved survival in preterm babies born at <27 weeks of gestation. We conducted a systematic review to address whether similar gains manifested in babies born between 27+0 and 31+6 weeks (hereafter 27 and 31 weeks) of gestation, or in those with a birth weight between 1000 and 1500 g. METHODS: We searched Embase, Medline and CINAHL databases for studies comparing outcomes for babies born between 27 and 31 weeks or between 1000 and 1500 g birth weight, based on designation of the neonatal unit where the baby was born or subsequently cared for (NICU vs non-NICU setting). A modified QUIPS (QUality In Prognostic Studies) tool was used to assess quality. RESULTS: Nine studies compared outcomes for babies born between 27 and 31 weeks of gestation and 11 studies compared outcomes for babies born between 1000 and 1500 g birth weight. Heterogeneity in comparator groups, birth locations, gestational age ranges, timescale for mortality reporting, and description of morbidities facilitated a narrative review as opposed to a meta-analysis. CONCLUSION: Due to paucity of evidence, significant heterogeneity and potential for bias, we were not able to answer our question-does place of birth or care affect outcomes for babies born between 27 and 31 weeks? This supports the need for large-scale research to investigate place of birth and care for babies born in this gestational age range.

Parental and health professional evaluations of a support service for parents of excessively crying infants.

BACKGROUND: The 'Surviving Crying' study was designed to develop and provisionally evaluate a support service for parents of excessively crying babies, including its suitability for use in the United Kingdom (UK) National Health Service (NHS). The resulting service includes three materials: a website, a printed booklet, and a Cognitive Behaviour Therapy (CBT) programme delivered to parents by a qualified professional. This study aimed to measure whether parents used the materials and to obtain parents' and NHS professionals' evaluations of whether they are fit for purpose. Parents were asked about participating in a randomised controlled trial (RCT) to evaluate the materials fully in health service use. METHODS: Participants were 57 parents with babies they judged to be crying excessively and 96 NHS Health Visitors (HVs). Parental use and parents' and HVs' ratings of the Surviving Crying materials were measured. RESULTS: Thirty four parents reported using the website, 24 the printed booklet and 24 the CBT sessions. Parents mostly accessed the website on mobile phones or tablets and use was substantial. All the parents and almost all HVs who provided data judged the materials to be helpful for parents and suitable for NHS use. If offered a waiting list control group, 85% of parents said they would have been willing to take part in a full RCT evaluation of the Surviving Crying package. DISCUSSION AND CONCLUSIONS: The findings identify the need for materials to support parents of excessively crying babies within national health services in the UK. The Surviving Crying support package appears suitable for this purpose and a full community-level RCT of the package is feasible and likely to be worthwhile. Limitations to the study and barriers to delivery of the services were identified, indicating improvements needed in future research. TRIAL REGISTRATION: Study Registration no. ISRCTN84975637 .

Optimising neonatal service provision for preterm babies born between 27 and 31 weeks gestation in England (OPTI-PREM), using national data, qualitative research and economic analysis: a study protocol.

INTRODUCTION: In England, for babies born at 23-26 weeks gestation, care in a neonatal intensive care unit (NICU) as opposed to a local neonatal unit (LNU) improves survival to discharge. This evidence is shaping neonatal health services. In contrast, there is no evidence to guide location of care for the next most vulnerable group (born at 27-31 weeks gestation) whose care is currently spread between 45 NICU and 84 LNU in England. This group represents 12% of preterm births in England and over onr-third of all neonatal unit care days. Compared with those born at 23-26 weeks gestation, they account for four times more admissions and twice as many National Health Service bed days/year. METHODS: In this mixed-methods study, our primary objective is to assess, for babies born at 27-31 weeks gestation and admitted to a neonatal unit in England, whether care in an NICU vs an LNU impacts on survival and key morbidities (up to age 1 year), at each gestational age in weeks. Routinely recorded data extracted from real-time, point-of-care patient management systems held in the National Neonatal Research Database, Hospital Episode Statistics and Office for National Statistics, for January 2014 to December 2018, will be analysed. Secondary objectives are to assess (1) whether differences in care provided, rather than a focus on LNU/NICU designation, drives gestation-specific outcomes, (2) where care is most cost-effective and (3) what parents' and clinicians' perspectives are on place of care, and how these could guide clinical decision-making. Our findings will be used to develop recommendations, in collaboration with national bodies, to inform clinical practice, commissioning and policy-making. The project is supported by a parent advisory panel and a study steering committee. ETHICS AND DISSEMINATION: Research ethics approval has been obtained (IRAS 212304). Dissemination will be through publication of findings and development of recommendations for care. TRIAL REGISTRATION NUMBER: NCT02994849 and ISRCTN74230187.

Early childhood health and morbidity, including respiratory function in late preterm and early term births.

Late preterm (LP) and early term (ET) infants have generally been considered in the same way as their healthy full term (FT) counterparts. It is only in the last decade that an increased risk of later poor health in children born LP has been recognised; evidence for health outcomes following ET birth is still emerging. However, reports are largely consistent in highlighting an increased risk, which lessens approaching FT but is measurable and persists into adolescence and beyond. The most thoroughly explored area to date is respiratory morbidity. This article reviews the body of available evidence for effects of LP birth on pulmonary function and ongoing morbidity, and other areas where an increased risk of health problems has been identified in this population. Implications for delivery of health care are considered and areas for further research are highlighted.

Outcomes of infants born near term: not quite ready for the "big wide world"?

Until recently, there has been a strongly held belief on the part of neonatal and pediatric clinicians that outcomes for infants born close to term are not different from those of babies born at full term. In the last decade, however, this assumption has been challenged by reports suggesting that this is not correct, and highlighting differences in morbidity and mortality both in the short and long term. This has led to development of new terminology to more accurately reflect the impact of immaturity associated with birth at 32-33 weeks (moderately preterm) and 34-36 weeks (late preterm) of gestation. These babies account for around 5-7% of all births and more than 75% of the preterm births in developed countries, so this new recognition of the associated increase in adverse outcomes may have a substantial impact on health care services. This review article will discuss the changing perceptions and concepts of gestational age in the preterm population, and explore the recent and emerging evidence around neonatal, early childhood, school-age, adolescent and adult outcomes for babies who are born moderately preterm and late preterm. It highlights important neonatal and childhood morbidities and will summarize associated health care, developmental and educational problems of affected children. The implications for the provision of ongoing primary and secondary health care, educational and social support to this large and heterogeneous group of individuals will be discussed.

Specialist health care services use in a European cohort of infants born very preterm.

AIM: Children born very preterm require additional specialist care because of the health and developmental risks associated with preterm birth, but information on their health service use is sparse. We sought to describe the use of specialist services by children born very preterm in Europe. METHOD: We analysed data from the multi-regional, population-based Effective Perinatal Intensive Care in Europe (EPICE) cohort of births before 32 weeks' gestation in 11 European countries. Perinatal data were abstracted from medical records and parents completed a questionnaire at 2 years corrected age (4322 children; 2026 females, 2296 males; median gestational age 29wks, interquartile range [IQR] 27-31wks; median birthweight 1230g, IQR 970-1511g). We compared parent-reported use of specialist services by country, perinatal risk (based on gestational age, small for gestational age, and neonatal morbidities), maternal education, and birthplace. RESULTS: Seventy-six per cent of the children had consulted at least one specialist, ranging across countries from 53.7% to 100%. Ophthalmologists (53.4%) and physiotherapists (48.0%) were most frequently consulted, but individual specialists varied greatly by country. Perinatal risk was associated with specialist use, but the gradient differed across countries. Children with more educated mothers had higher proportions of specialist use in three countries. INTERPRETATION: Large variations in the use of specialist services across Europe were not explained by perinatal risk and raise questions about the strengths and limits of existing models of care. WHAT THIS PAPER ADDS: Use of specialist services by children born very preterm varied across Europe. This variation was observed for types and number of specialists consulted. Perinatal risk was associated with specialist care, but did not explain country-level differences. In some countries, mothers' educational level affected use of specialist services.

UTILIZACIÓN DE SERVICIOS DE SALUD ESPECIALIZADOS EN UN ESTUDIO DE COHORTE EUROPEO DE NIÑOS NACIDOS MUY PREMATUROS: OBJETIVO: Niños nacidos muy prematuramente requieren cuidados especializados adicionales debido a su salud y a los riesgos asociados con la prematuros, sin embargo la información sobre el uso de servicios de salud es escasa. Buscamos describir la utilización de servicios especializados por niños nacidos muy prematuramente, en Europa. MÉTODO: Analizamos datos de una cohorte de nacimientos ocurridos antes de las 32 semanas de gestación tomados del Effective Perinatal Intensive Care in Europe (EPICE), basado en la población y multirregional, en 11 países europeos. Los datos perinatales fueron extraídos de las historias clínicas y los padres completaron un cuestionario a los 2 años de edad corregida (4.322 niños; 2026 sexo femenino, 2.296 masculino; edad gestacional mediana 29 semanas, rango intercuartílico (IQR) 27-31 semanas; mediana de peso de nacimiento 1.230 gr, IQR 970-1.511 gr). Comparamos el uso de servicios especializados (según informe de los padres) por país, riesgo perinatal (basado en edad gestacional, bajo peso para edad gestacional y morbilidades neonatales), educación materna y lugar de nacimiento. RESULTADOS: En total 65% de los niños habían consultado por lo menos a un especialista, con un rango entre países de 53,7% a 100%. Los especialistas más frecuentemente consultados fueron Oftalmólogos (53,4%) y Fisioterapeutas (48%) pero los especialistas consultados por cada individuo variaron mucho según el país. El riesgo perinatal se asoció al uso de especialista, pero el gradiente varió entre los países. Niños de madres con mayor nivel educativo tuvieron mayor proporción de uso de especialistas en tres países. INTERPRETACIÓN: Las grandes variaciones en el uso de servicios especializados en Europa no fueron explicadas por el riesgo perinatal y arrojan cuestionamientos sobre las fortalezas y limitaciones de los modelos de cuidados existentes.

USO DE SERVIÇOS DE SAÚDE ESPECIALIZADOS EM UMA COORTE EUROPÉIA DE LACTENTES NASCIDOS MUITO PREMATUROS: OBJETIVO: Crianças nascidas muito prematuras requerem cuidado especializado adicional por causa dos riscos à saúde e ao desenvolvimento associados ao nascimento premature, mas informações sobreo uso de serviços de saúde são escassas. Procuramos descrever o uso de serviços especializados por crianças nascidas muito prematuras na Europa. MÉTODO: Analisamos dados de uma coorte populacional multi-regional, do Cuidado Intensivo Neonatal Efetivo na Europa (EPICE), com lactentes nascidos antes de 32 semanas de gestação em 11 países europeus. Dados perinatais foram extraídos dos registros médicos, e os pais completaram um questionário com 2 anos de idade corrigida (4.322 crianças; 2.026 do sexo feminino, 2.296 do sexo masculino; idade gestacional mediana 29semanas, intervalo interquartile [IIQ] 27-31sem; peso ao nascimento mediano 1,230g, IIQ 970-1511g). Comparamos o uso de serviços especializados reportados pelos pais por país, risco perinatal (com base na idade gestacional, pequeno para a idade gestacional e morbidades neonatais), educação materna e local de nascimento. RESULTADOS: Setenta e seis por cento das crianças consultou pelo menos um especialista, variando entre países de 53,7 a 100%. Oftalmologistas (53,4%) e fisioterapeutas (48,0%) foram os mais frequentemente consultados, mas os especialistas individuais variaram bastante por país. O risco perinatal se associou com uso de serviços especializados, mas o gradient diferiu entre países. Crianças com mães mais educadas tinham maior proporção de uso de especialistas em três países. INTERPRETAÇÃO: Grandes variações no uso de serviços especializados na Europa não foram explicadas pelo risco perinatal, e levantam questões sobre as forças e limitações dos modelos de cuidado existentes.

Persistent pain in neonates: challenges in assessment without the aid of a clinical tool.

AIM: Evaluation of comfort and pain in neonates is important for management. Specific signs of persistent pain in neonates remain undefined; few validated clinical tools assess persistent pain. We sought to determine (i) difficulty perceived by staff and parents in assessing comfort/persistent pain in babies, (ii) strategies employed when no clinical tool is used and (iii) variation between clinicians' assessments. METHODS: Parent and staff questionnaires addressed difficulty in assessing pain/comfort in neonates and strategies used in making assessments. RESULTS: A total of 47 of 50 (94%) parents and 83 of 91 (91%) staff participated; 50% of staff reported it was moderately/very difficult to assess persistent pain, and 13% very easy; 75% of parents found it moderately/very easy and 23% difficult to assess their baby's comfort; 15% of parents thought staff found pain assessment difficult. Staff described 94 different factors indicative of comfort and 139 factors of persistent pain. Terminology differed widely and was often nonspecific; 67% of staff described forming a 'general impression'. CONCLUSION: Pain assessment is challenging for staff. Most parents feel confident in assessing their babies' comfort, but may overestimate the ease with which staff can do so. Indicators of persistent pain/comfort are poorly defined; staff use differing, subjective assessments, which may complicate communication between carers.

Differentiating the Preterm Phenotype: Distinct Profiles of Cognitive and Behavioral Development Following Late and Moderately Preterm Birth.

OBJECTIVES: To explore patterns of comorbidity in cognitive and behavioral outcomes at 2 years' corrected age among children born late or moderately preterm (LMPT) and to identify predictors of different patterns of comorbidity. STUDY DESIGN: Geographical, prospective population-based cohort study of 1139 infants born LMPT (320/7 to 366/7 weeks' gestation) and 1255 infants born at term (370/7 to 426/7 weeks' gestation). Parent questionnaires were obtained to identify impaired cognitive and language development, behavioral problems, delayed social-emotional competence, autistic features, and clinically significant eating difficulties at 24 months corrected age for 638 (57%) children born LMPT and 765 (62%) children born at term. RESULTS: Latent class analysis revealed 2 profiles of development among the term group: optimal (84%) and a profile of social, emotional, and behavioral impairments termed "nonoptimal" (16%). These 2 profiles were also identified among the LMPT group (optimal: 67%; nonoptimal: 26%). In the LMPT group, a third profile was identified (7%) that was similar to the phenotype previously identified in infants born very preterm. Nonwhite ethnicity, socioeconomic risk, and not receiving breast milk at hospital discharge were risk factors for nonoptimal outcomes in both groups. Male sex, greater gestational age, and pre-eclampsia were only associated with the preterm phenotype. CONCLUSIONS: Among children born LMPT with parent-reported cognitive or behavioral impairments, most had problems similar to the profile of difficulties observed in children born at term. A smaller proportion of children born LMPT had impairments consistent with the "very preterm phenotype" which are likely to have arisen through a preterm pathway. These results suggest that prematurity may affect development through several etiologic pathways in the late and moderately preterm population.