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Perinatal medicine and ethics and law joint session

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G127 VARIATIONS IN PRACTICE AMONG PAEDIATRIC CONSULTANTS WHEN REPORTING NEONATAL DEATHS TO THE CORONER

S. Chonat1, M. Clements1, R. Lakshman1, R. Iles2.1West Suffolk Hospital, Bury St Edmunds, UK; 2Addenbrooke’s Hospital, Cambridge, UK

Aims: We wished to explore the opinion of paediatric consultants regarding their personal practice when referring cases of unexpected neonatal death to the coroner.

Method: An email questionnaire was sent to the lead consultants of 221 neonatal units in the UK. The questionnaire described two clinical scenarios of unexpected neonatal death associated with birth asphyxia. Consultants were asked to indicate if they would cite a cause of death, or refer the case to the coroner. They were also invited to add personal comments.

Results: Replies were obtained from 62 consultants, (28%). Sixty six per cent of respondents indicated that they would refer an unexplained neonatal death to the coroner. Twenty one per cent were unsure. Seven per cent would definitely not refer. A potential regional variation was identified. Personal comments included indications of directives from the local coroner’s office, the desire to avoid blame or litigation, and the wish to avoid parental distress. Some expressed an opinion that there was no role for the coroner in these cases.

Abstract G127

Conclusion: This questionnaire received replies from only 28% of its target population; however it is clear that there is a lack of consensus regarding the referral of cases of unexplained neonatal death to the coroner. Potential regional variations in practice were identified. Local guidance may originate from the coroners office. There is a need for national guidelines regarding the referral of unexplained neonatal death.

G128 CONSENT FOR RESEARCH IN NEONATES: INTERNATIONAL DIFFERENCES

Y. Freer1, E. Boyle1, N. McIntosh1, S. Anand2, S. Teunisse3.1University of Edinburgh, Edinburgh, UK; 2University of Arkansas, Arkansas, USA; 3University of Aberdeen, Aberdeen, UK

Background: Good research governance requires participants to be aware of the nature of the study, what it involves for them personally, what the risks/benefits might be and any compensation arrangements in the event of mishap. With understanding of the various aspects, subjects are able to freely make a decision on whether or not to consent to the study. Documentation style varies with some being more lengthy and complex than others.

Aims: We wished to examine the effects of different styles of consent documentation on parental understanding of the study and their willingness to allow their infant to participate.

Methods: This study was carried out as a randomised controlled trial. Two versions of a study information leaflet previously used in a international multicentred trial (NEOPAIN) were tested in one NICU. Parents were randomised to: information sheet A (USA version) with or without verbal explanation or information sheet B (UK version) without or without verbal explanation. Within 24 hours of reading the documentation, they completed a questionnaire. They were asked if the presented statements were correct or incorrect, if the amount of information was appropriate and if they would consent to the study.

Results: Forty one parents consented to the study; 10 in each group except for group B, n = 11. The results are first presented by leaflet version. Percentage of statements answered correctly were: information sheet A = 72% and information sheet B = 77% (p = 0.07). Parents were more likely to mark the statements as being correct if they had received additional verbal information A – 66%, A plus explanation – 80%, B – 70% and B plus explanation – 86% (p = 0.001). 65% of parents receiving the USA information sheet felt that the amount of information was about right with 29% feeling it was too much; 70% of those receiving the UK version felt that the amount of information was about right with 30% feeling it was too little. Parents receiving the UK information sheet were more likely than those receiving the USA version to agree to their infant taking part in the study (55% v 41% respectively).

Conclusions: The principles of consent are maintained without the need for lengthy documentation. Simplicity of information does not reduce parental understanding about a complex research study. Offering verbal information supports understanding. Uncomplicated information results in improved enrolment.

G129 THE ECONOMIC IMPACT OF EXTREMELY PRETERM BIRTH IN CHILDHOOD

S. Petrou2, M. Bracewell1, J. Henderson2, N. Marlow1.1University of Nottingham, Nottingham, UK; 2National Perinatal Epidemiology Unit, Oxford, UK

Background: There is increasing awareness of disabilities in survivors following extremely preterm birth. Previous economic assessments of preterm birth have focussed on short term health service costs across the broad spectrum of preterm births. We aimed to estimate the societal costs of extreme preterm birth during early school years.

Methods: Unit costs were applied to estimates of health, social, and broader resource use made by 241 children born at 20 through 25 completed weeks of gestation in the United Kingdom and Republic of Ireland and a comparison group of 160 children born at full term. Societal costs per child during the sixth year after birth were estimated and subjected to a rigorous sensitivity analysis. The effects of gestational age at birth on annual societal costs were analysed, first in a simple linear regression and then in a multiple linear regression.

Results: Mean societal costs over the 12 month period were £9541 (standard deviation £11,678) for the extreme preterm group and £3883 (£1098) for the term group, generating a mean cost difference of £5658 (bootstrap 95% confidence interval: £4203, £7256) that was statistically significant (p<0.001). After adjustment for clinical and socio-demographic covariates, sex-specific extreme preterm birth was a strong predictor of high societal costs.

Conclusion: The results of this study should facilitate the effective planning of services and may be used to inform the development of future economic evaluations of interventions aimed at preventing extreme preterm birth or alleviating its effects.

G130 INFANTS BORN AT THE THRESHOLD OF VIABILITY: CHANGES IN SURVIVAL AND RESOURCE USE OVER 10 YEARS

J. Dorling, L. Draper, B. Manktelow, D. Field.University of Leicester, Leicester, UK

Aims: To document changing patterns of survival and resource utilisation in infants born before 26 completed weeks of gestation in the decade 1994–2003.

Methods: Data were determined from the Trent Neonatal Survey (TNS) and the Confidential Enquiry of Stillbirths and Deaths in Infancy (CESDI) for all infants born before 26 weeks gestation in 1994 to 2003.

Results: There was no change in the proportion of infants dying in delivery rooms, but a significant improvement was seen in the number of infants surviving to discharge (p<0.0001). 193 (47%) of 411 admitted infants survived to discharge in 1999–2003 compared to 131 (33%) of 400 admitted infants in 1993–98. None of the 23 infants born at 22 weeks gestation survived admission to a neonatal unit. For the 23 week gestation infants, a modest improvement in survival to discharge was seen in 1999–2003 (13 of 60 (22%) v 9 of 67 (13%) in 1993–1998). A substantial increase in the provided days of neonatal care was seen in 1999–2003 compared to 1994–1998: 23834 v 15364 days, with ventilation days increasing slightly: 6805 v 5175 days, and CPAP increasing dramatically: 5536 v 1390 (p = 0.0003).

Conclusions: Data from the Trent Neonatal Survey demonstrate improving survival of infants born before 26 completed weeks of gestation. There was no change in the proportion of infants dying in the delivery room indicating little change in the attitude to resuscitating these infants. A substantial increase was seen in the number of days of care and CPAP provided to this cohort of infants. These changes are an important consideration for the planning of future neonatal intensive care service provision.

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