EPICure at Two and a Half Years

The second part of this study, compromising the assessments at 2.5 years, was co-ordinated by Professor Neil Marlow in liaison with Professor Kate Costeloe and Dr. Alan Gibson. Dr. Nick Wood and Mrs Heather Palmer co-ordinated the study from Nottingham. 

Dr Clare Lawson performed all the training in developmental assessment and Ms Enid Hennesy advised on the statistics. This part of the study was funded by Serono Laboratories UK Ltd and Bliss.

This phase of the study was supervised by a steering group:

Professor P J Steer (Chairman) Professor N Marlow
Professor K Costeloe Professor P Pharoh
Dr. A Gibson Professor A Wilkinson
Dr. I Laing Dr. M. Lewins

 

It was decided that each child would be examined by an independent paediatrician to determine health status in terms of presence of disability, medical and neurological morbidity, developmental performance and behaviour. In addition, hospital admissions and community support needed would be determined. This would facilitate an assessment of the burden of morbity to the child and family after an extremely preterm birth.

Ten paediatricians were recruited to perform the assessments. They were selected to provide full cover of the United Kingdom and Eire. These assessors were:

Paediatrician Area Paediatrician Area
Dr. Amanda Bennett North West Dr. Lindsay Logie Scotland
Dr. Michele Cruwys NW Thames Dr. Bala Mallya DW Thames
Dr. Moira Dick SE Thames Dr. Ruth Macgregor Yorkshire / North East
Dr. Sandra Egan / Dr. Ximena Poblete NE Thames Dr. Jane Schulte South West
Dr. Alison Livingstone Northern Ireland / Eire Dr. Nicholas Wood (EPICure Research Fellow) Trent / Central

 

Prior to starting assessments a training course was arranged to provide a standardised approach to neurological examination and developmental assessment.

Each child had a formal medical and neurological (Amiel-Tison) examination, together with a state of the art developmental assessment. All parents were asked to complete a questionnaire concerning their home life and their perceptions of their child's behaviour. During the 10 months of the study the examiners provided random video assessments which were scored by an independent psychologist to ensure each doctor was consistent in their testing.

A formal report detailing the neurological and developmental assessment was passed to the local lead paediatricians for each child, and a summary was sent to the parents.

Assessments

We traced all the babies when they were 2.5 years old, and found that 6 of the 314 babies had died since discharge from intensive care leaving a cohort of 308 children. Some had moved abroad with their families (our funds did not stretch to trips to these locations unfortunately!), which left 302 children available for follow up. 283 families accepted our invitation to an assessment (92%).

Everyone was asked to come to a clinic / hospital for an assessment by one of the EPICure assessment team. For a few who could not get to clinic we visited the child at home.

We tried to see everyone as close to 2.5 years after they were supposed to be born as possible. We also had information from your local paediatricians as to how well your child was doing at one year of age so where we couldn't see children at 2.5 we at least knew how well they were doing at one year.