Screening to Improve Health in Very Preterm Infants in Europe
Screening to Improve Health in Very Preterm Infants in Europe (SHIPS) is a European research project about follow-up programmes for children born preterm About 50,000 infants in the EU survive very preterm birth annually and are at much higher risk of cerebral palsy, visual and auditory deficits, impaired cognitive ability, psychiatric disorders and behavioural problems than infants born at term. Follow-up programmes for very preterm infants – defined as programmes to systematically assess and to provide preventive services to infants deemed to be at risk because of their very preterm birth – aim to enable timely referral for diagnostic and therapeutic interventions and optimal management and coordination of care. Follow-up screening and prevention programmes are considered to be essential for the health of very preterm children as witnessed by their widespread availability in neonatal units, paediatric hospitals and within regional health agencies in Europe as well as in other high income countries. Yet despite this belief and the strong justifications for providing systematic follow-up care to very preterm children, and the resources consumed by these programmes, comprehensive evaluations of these programmes have not been undertaken. Evaluations are needed to measure whether benefits are achieved in different settings, to assess cost-effectiveness, to identify barriers and to suggest ways to overcome them.
The objective of the SHIPS project is thus to describe and to evaluate the impact of follow-up programmes for very preterm infants in Europe. The project builds on the EPICE cohort which includes 6792 infants born before the 32nd week of gestation in 2011 and 2012 in 19 regions in 11 European countries. In France, the project is carried out in collaboration with the EPIPAGE 2 project. Three regions in the EPIPAGE 2 Study also participate in the EPICE cohort and the project SHIPS (Burgundy, Ile-de-France and Nord-Pas-de-Calais).
The project implements 4 studies:
1. Screening Organisation, Process and Content Study investigates the characteristics of regional and unit-based follow-up screening and prevention programmes for very preterm infants, including their mission, target population, duration of follow-up, organisation, content and resource use via a structured questionnaires to key informants about follow-up programmes in each region.
2. Study of Health and Wellbeing at 5 assesses reported health and child development, family wellbeing and use of health services with a parental questionnaire administered by post, telephone or an online questionnaire when the child is 5 years of age. Children’s behaviour, social and emotional outcomes, cognitive outcomes and health related quality of life will also be measured using validated instruments. Parents will also be asked for their opinions about the care received by their children and the additional support they would have liked to receive during the early childhood period. The study population is very preterm children born at less than 32 weeks of gestational age who survived to 5 years of age.
3. Neurodevelopmental Assessment Study, in which a team of trained examiners carries out in-depth assessments of children’s cognitive and motor development at 5 years of age for a sub-set of children at higher risk of adverse outcomes, using a battery of standardised tests that measure general cognitive ability (IQ), working memory, processing speed, visuo-motor integration and gross motor coordination. The study population will include very preterm children who were born below 28 weeks of gestation, because of the inverse relationship between gestational age at birth and neurodevelopmental disability.
4. Qualitative Study with parents aims to understand families’ experiences of follow-up and subsequent care, and to identify the key factors perceived by parents as characterizing high performing versus low performing screening and intervention services using in-depth semi-structured personal interviews. The study population will include parents having children with and without severe impairments at 5 years of age.
The projects are carried out by a multidisciplinary research consortium, including obstetricians, pediatricians, psychologists, epidemiologists, health service researchers, health economists and parent representatives from 10 regions in 11 EU countries. The consortium also includes an external scientific committee and a committee with representatives from parental associations.
Equipe Epopé (INSERM), France (Jennifer Zeitlin), project coordinator
University of Leicester (ULEIC), United Kingdom (Elizabeth S Draper)
Philipps Universitaet Marburg (UNIMAR), Germany (Rolf F Maier)
Stichting Katholieke Universiteit (RUNMC), Netherlands (Arno van Heijst)
Uniwersytet Medyczny im Karola Marcinkowskiego w Poznaniu (UMP), Poland (Janusz Gadzinowski)
Universiteit Antwerpen (UA), Belgium (Josef Lebeer)
Universidade do Porto (FMUP), Portugal (Henrique Barros)
Region Hovedstaden (REGION H), Denmark (Klaus Borch)
Karolinska Institutet (KI), Sweden (Ulrika Aden)
Tartu Ulikool (UT), Estonia (Heili Varendi)
Ospedale Pediatrico Bambino Gesu (OPBG), Italy (Marina Cuttini)
The University of Warwick (UW), United Kingdom (Stavros Petrou)
European Foundation for the Care of Newborn Infants (EFCNI), Germany (Silke Mader)
European Commission Horizon 2020 (N°633724)