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.

Use of inhaled nitric oxide in the new born period: results from the European Inhaled Nitric Oxide Registry.

AIMS: The aim of this study was to present data relating to the use of inhaled nitric oxide (iNO) in newborn infants included in the European Inhaled Nitric Oxide Registry. METHODS: Demographic, clinical and therapeutic data from seven European centres are reported. Univariate analyses were performed to identify factors associated with acute response to iNO and survival without extra corporeal membrane oxygenation (ECMO). RESULTS: A total of 112 newborn infants received iNO, with 40% being less than 34 weeks gestational age. The commonest indication for iNO was secondary pulmonary hypertension. Acute response to iNO was more common in infants with a higher oxygenation index (median OI 32.7 vs 22.6, p = 0.040), although acute response did not predict survival without ECMO. Infants who survived without ECMO had a lower OI prior to therapy (median OI 24 vs 43, p = 0.009), were commenced on a higher starting dose (median dose 20 ppm vs 10 ppm p = 0.013) and received a lower maintenance dose (median dose 10 vs 17 ppm, p = 0.027) than those who died or received ECMO. CONCLUSION: Collating and reporting data about iNO therapy in neonates across a number of European centres using a web-based system is feasible. These data may be used to monitor the clinical use of iNO, identify adverse effects, generate research hypotheses and promote high standards in the clinical use of iNO.

The prognostic value of initial blood lactate concentration measurements in very low birthweight infants and their use in development of a new disease severity scoring system.

OBJECTIVES: To investigate the predictive value of the Clinical Risk Index for Babies (CRIB) score in current practise, the predictive value of blood lactate concentrations ([L]) and to develop a new clinical scoring system for very low birthweight (VLBW) babies. METHODS: The predictive ability of CRIB, [L] and the development of the new score was based on retrospective data collected from all inborn VLBW babies born between March 2001 and February 2004 in a tertiary neonatal unit. Predictive ability was determined from area under the receiver operator curve (AUC). A new score was developed and validated with a second cohort of VLBW babies. RESULTS: 408 babies were studied in the development cohort and 275 in the validation cohort. AUC for CRIB was 0.933 (95% CI 0.897-0.969). Initial [L] was significantly higher in babies who died than in those who survived (median (range) 9.2 (1.26-21.1) vs 3.64 (0.67- 17.9) mmol/l, p<0.0001) as was the highest [L] in the first 12 h (10.2 (3.37-26) vs 3.84 (1.05-20.7) mmol/l, p<0.0001). A new score was developed using; highest [L], gestation and the presence of life-threatening malformation. AUC for the new score was 0.918 (95% CI 0.876-0.961) in the development cohort and 0.859 (95% CI 0.805-0.913) in the validation cohort. CONCLUSIONS: CRIB score retains its predictive ability for mortality in VLBW babies. Early hyperlactataemia is a predictor of death in VLBW babies. The new score appears to perform as well as CRIB but requires fewer data items.