Managing mothers' and fathers' uncertainty during their journey through early neurodevelopmental follow-up for their high-risk infants-A qualitative account.

BACKGROUND: Early diagnosis of cerebral palsy is possible by 5 months corrected age for 'at-risk' infants, using diagnostic tools such as the Hammersmith Infant Neurological Examination (HINE), Prechtl's General Movements Assessment (GMA) and magnetic resonance imaging (MRI). This is an uncertain and stressful time for parents where provision of appropriate information and support is essential. AIM: To explore parents' views and experiences in relation to the new early neurodevelopmental follow-up of 'at-risk' infants. METHODS: Thirteen in-depth one-to-one qualitative interviews were conducted by the primary researcher, with eight parents (six mothers and two fathers) of 'at-risk' infants eligible for a follow-up clinic where the GMA and HINE were performed at 12-week corrected age. Interviews used a pre-piloted topic guide and took place before and after the clinic. Interviews were audio-recorded, transcribed verbatim and analysed using inductive coding and thematic analysis using the framework approach. FINDINGS: Seven themes were identified: (1) attempting to manage uncertainty, (2) taking priority, (3) trusting professionals, (4) independence in the parent role, (5) feeling understood, (6) patterns of care and (7) individuality. Parents reported experiencing uncertainty about their current situation and future. Adequate preparation for and timing of information are vital. When uncertainty is poorly managed, parents' wellbeing suffers. Individual parents' perspectives and infants' developmental trajectories differ, and information should be tailored specifically for this. CONCLUSION: A parent's understanding of the journey through neurodevelopmental care for their high risk infants is initially very limited. Implementing a counselling service for parents to access psychological support and digital reminder system for clinic appointments, as well as providing more tailored information through trusted professionals, could all improve future parents' experiences.

A journey through follow-up for neurodevelopmentally at-risk infants-A qualitative study on views of parents and professionals in Liverpool.

BACKGROUND: With improving neonatal intensive care, more preterm babies or those with hypoxic-ischaemic encephalopathy are surviving the newborn period. These babies are at high risk of neurodevelopmental delay. No studies to date have looked at the views of parents and professionals in relation to the processes of follow-up for these infants. METHODS: We conducted a qualitative study in order to understand the views of parents of preterm babies or those with hypoxic-ischaemic encephalopathy as well as the views of professionals who manage and support these families. Parents were recruited through general neonatal follow-up clinics, neonatal nurse liaison services and community child health clinics and professionals through the neonatal unit and neurodevelopmental paediatrics services. We conducted in-depth interviews using an open-ended topic guide, which were audio recorded, transcribed and coded. We conducted a thematic content analysis where themes were inductively highlighted and grouped by consensus in order to conclude on major themes and subthemes. RESULTS: Three major themes were identified for parents and professionals. These were the following: (a) What is the future, (b) What is the journey and (c) Who can help me? Parents wanted better information earlier about the prognosis and diagnoses through face to face, honest consultations with follow-up information available on the Internet. The most important requirements for follow-up clinics were honesty, reassurance, consistent pathways of follow-up and the need for a lead professional in the process. Alongside the follow-up process, there was a need for support groups and psychological support CONCLUSIONS: This study highlights the desire by parents for early information on the likely long-term outlook for their babies but the need to ensure that the information and support, which is given, is provided appropriately and with consideration in order to provide the best care of the whole family.

Changes in the sublingual microcirculation and endothelial adhesion molecules during the course of severe meningococcal disease treated in the paediatric intensive care unit.

PURPOSE: The sublingual microcirculation can be visualised in real time using sidestream dark-field (SDF) imaging. Endothelial activation mediated through adhesion molecules may alter flow patterns in the microcirculation. We studied sublingual microcirculatory disturbances in children with meningococcal disease (MCD) and simultaneously measured plasma levels of adhesion molecules. METHOD: Twenty children admitted to the paediatric intensive care unit (PICU) with MCD were studied. Forty healthy children were controls. The sublingual microcirculation was assessed at admission and at timed intervals until extubation. The microvascular flow index (MFI), capillary density (CD), proportion of perfused vessels (PPV) and perfused vessel density (PVD) were measured using SDF imaging. Plasma intercellular adhesion molecule-1 (ICAM-1), vascular cell adhesion molecule-1 (VCAM-1), E-selectin and P-selectin were measured at admission and at timed intervals during the course of PICU treatment. RESULTS: Significant reductions in MFI, CD, PPV and PVD were found in children with MCD compared with controls (p < 0.005). These differences had resolved prior to extubation. Initial MFI values predicted the duration of mechanical ventilation, irrespective of the stage of illness at the time of presentation to PICU. There were negative correlations between the ICAM-1, VCAM-1 and E-selectin levels and the microcirculatory MFI and PPV values at the time of admission to PICU (p < 0.005). CONCLUSIONS: Microcirculatory dysfunction is present in children with severe MCD with improvement alongside clinical recovery. Microcirculatory dysfunction correlated with markers of endothelial activation. Sublingual SDF imaging is feasible in children ventilated on PICU for severe sepsis and may prove useful in studies assessing illness severity and therapy.

Multivariate analyses of factors that affect neonatal screening thyroid stimulating hormone.

AIMS: All screening programmes in the UK use a primary thyroid stimulating hormone (TSH) screen for congenital hypothyroidism. Recent attention has been paid to aspects of screening, such as the relation between blood spot TSH levels and birth weight or gestational age. The aim of our study was to determine the factors affecting screening neonatal TSH levels. METHODS: We conducted a retrospective analysis of blood spot screening TSH levels of all infants screened at a single regional screening laboratory. RESULTS: There were 6498 infants screened during a 12-week period. Screening TSH level showed negative correlation with gestational age and birth weight. Multiple linear regression analysis revealed low birth weight as the only independent factor affecting screening TSH level. CONCLUSIONS: Low birth weight infants appear to be at risk of thyroidal dysfunction. Our study showed that there were clinically significant but weak correlation between higher screening TSH levels and low birth weight. The clinical importance of these findings requires larger prospective studies to further elucidate the relevance of these factors affecting TSH screening levels.

Meningococcal disease in children in Merseyside, England: a 31 year descriptive study.

Meningococcal disease (MCD) is the leading infectious cause of death in early childhood in the United Kingdom, making it a public health priority. MCD most commonly presents as meningococcal meningitis (MM), septicaemia (MS), or as a combination of the two syndromes (MM/MS). We describe the changing epidemiology and clinical presentation of MCD, and explore associations with socioeconomic status and other risk factors. A hospital-based study of children admitted to a tertiary children's centre, Alder Hey Children's Foundation Trust, with MCD, was undertaken between 1977 to 2007 (n = 1157). Demographics, clinical presentations, microbiological confirmation and measures of deprivation were described. The majority of cases occurred in the 1-4 year age group and there was a dramatic fall in serogroup C cases observed with the introduction of the meningococcal C conjugate (MCC) vaccine. The proportion of MS cases increased over the study period, from 11% in the first quarter to 35% in the final quarter. Presentation with MS (compared to MM) and serogroup C disease (compared to serogroup B) were demonstrated to be independent risk factors for mortality, with odds ratios of 3.5 (95% CI 1.18 to 10.08) and 2.18 (95% CI 1.26 to 3.80) respectively. Cases admitted to Alder Hey were from a relatively more deprived population (mean Townsend score 1.25, 95% CI 1.09 to 1.41) than the Merseyside reference population. Our findings represent one of the largest single-centre studies of MCD. The presentation of MS is confirmed to be a risk factor of mortality from MCD. Our study supports the association between social deprivation and MCD.

Diagnostic efficacy of activated partial thromboplastin time waveform and procalcitonin analysis in pediatric meningococcal sepsis.

OBJECTIVE: A biphasic activated partial thromboplastin time waveform predicts sepsis and disseminated intravascular coagulation in adults. This has not been previously investigated in children. Our aim is to ascertain whether there are changes in the activated partial thromboplastin time waveform in children with meningococcal disease and to compare its diagnostic use with procalcitonin. SETTING: Alder Hey Children's National Health Service Foundation Trust, Liverpool, UK. PATIENTS: Thirty-six children admitted to the hospital for the treatment of suspected meningococcal disease had activated partial thromboplastin time waveform and procalcitonin analysis performed at admission. The light transmittance level at 18 secs was used to quantitate the waveform. Severity of disease was assessed using the Glasgow Meningococcal Septicaemia Prognostic Score, Pediatric Risk of Mortality III score, and the Pediatric Logistic Organ Dysfunction score. MEASUREMENTS AND MAIN RESULTS: Twenty-four children had proven meningococcal disease, 12 had a presumed viral illness, and 20 control subjects were recruited. Transmittance level at 18 secs was lower in children with meningococcal disease and those with a viral illness (p < .0001) and control subjects (p < .0005). Sensitivity and specificity was 0.91 and 0.96 for transmittance level at 18 secs and 0.92 and 1 for procalcitonin in identifying meningococcal disease. There was a significant difference in procalcitonin between children with meningococcal disease and those with a viral illness and control subjects (p < .0005). A negative correlation was found between transmittance level at 18 secs and length of hospital stay (p < .0001), C-reactive protein (p < .0001), procalcitonin (p < .0001), Glasgow Meningococcal Septicaemia Prognostic Score (p < .01), Pediatric Risk of Mortality III score (p < .0001), and Pediatric Logistic Organ Dysfunction score score (p < .0001). CONCLUSION: The activated partial thromboplastin time waveform is abnormal in children with meningococcal disease and may be a useful adjunct in the diagnosis and management of sepsis in children.

Peripheral haemodynamics in newborns: best practice guidelines.

Peripheral haemodynamics refers to blood flow, which determines oxygen and nutrient delivery to the tissues. Peripheral blood flow is affected by vascular resistance and blood pressure, which in turn varies with cardiac function. Arterial oxygen content depends on the blood haemoglobin concentration (Hb) and arterial pO2; tissue oxygen delivery depends on the position of the oxygen-dissociation curve, which is determined by temperature and the amount of adult or fetal haemoglobin. Methods available to study tissue perfusion include near-infrared spectroscopy, Doppler flowmetry, orthogonal polarisation spectral imaging and the peripheral perfusion index. Cardiac function, blood gases, Hb, and peripheral temperature all affect blood flow and oxygen extraction. Blood pressure appears to be less important. Other factors likely to play a role are the administration of vasoactive medications and ventilation strategies, which affect blood gases and cardiac output by changing the intrathoracic pressure.

Estimating Individual-Level Risk in Spatial Epidemiology Using Spatially Aggregated Information on the Population at Risk.

We propose a novel alternative to case-control sampling for the estimation of individual-level risk in spatial epidemiology. Our approach uses weighted estimating equations to estimate regression parameters in the intensity function of an inhomogeneous spatial point process, when information on risk-factors is available at the individual level for cases, but only at a spatially aggregated level for the population at risk. We develop data-driven methods to select the weights used in the estimating equations and show through simulation that the choice of weights can have a major impact on efficiency of estimation. We develop a formal test to detect non-Poisson behavior in the underlying point process and assess the performance of the test using simulations of Poisson and Poisson cluster point processes. We apply our methods to data on the spatial distribution of childhood meningococcal disease cases in Merseyside, U.K. between 1981 and 2007.

Cause of death in infants of women with pregestational diabetes mellitus and the relationship with glycemic control.

BACKGROUND: Perinatal mortality remains high among infants of mothers with type 1 and type 2 diabetes mellitus. Although high glucose levels have been implicated, the mechanism is not well understood. AIMS: 1) to identify the causes of stillbirth and neonatal death in infants of women with type 1 and type 2 diabetes; 2) to determine whether the causes of perinatal mortality are the same for women with type 1 and type 2 diabetes; and 3) to ascertain the relationship between perinatal mortality and maternal glycemic control. MATERIALS AND METHODS: The case notes of women with type 1 and type 2 diabetes mellitus who had a stillbirth or neonatal death were identified and examined by 2 reviewers independently. RESULTS: Ninety-three perinatal deaths were identified (59 women with type 1 diabetes; 34 women with type 2 diabetes). There were 73 stillbirths, 12 were early neonatal deaths, and 8 were late neonatal deaths. Eighteen deaths were attributed to congenital anomalies, 64 to antepartum asphyxia, 4 to intrapartum asphyxia, 3 to postnatal hyaline membrane disease, 2 to postnatal infection, 1 was unclassifiable, and 1 case had no details available. Median postmenstrual age at death was 34 weeks for both women with type 1 and type 2 diabetes. Congenital anomalies were less common in women with type 1 diabetes than those with type 2 diabetes (rate ratio, 0.37 [95% confidence interval, 0.15-0.95]). The relationship between preconceptional and maximal maternal glycosylated hemoglobin (HbA1c) concentrations and birth weight was curvilinear: at low HbA1c levels, the fetal weight was normal; when HbA1c levels were moderately raised, there was macrosomia; very high HbA1c levels were associated with severe intrauterine growth restriction. CONCLUSION: We describe a relationship between HbA1c and fetal weight. We consider that this provides evidence that hyperglycemia not only causes fetal macrosomia but also an angiopathy affecting the utero-placental blood vessels and consequent fetal hypoxia. These observations provide further evidence that good pre- and periconceptional glycemic control is likely to be of great importance in improving the outcome of pregnancies of women with diabetes.

Improvements in the outcome of children with meningococcal disease.

Recent years have seen a marked reduction in the mortality of children with meningococcal disease in paediatric intensive care units (PICU); the reasons for this improvement are multifactorial. The mortality rates for critically ill children overall have improved and reasons for this are probably increased centralisation of PICU services and that fewer critically ill children are now looked after on adult units. Specific treatment pathways for sepsis have improved with the publication of clinical guidelines for children and initiatives such as the Surviving Sepsis Campaign. There is a continuing need to focus on the care delivered to children before reaching PICU and to minimise the morbidity suffered by survivors of this disease.