The SHIPS studies
The SHIPS project uses a mixed-method approach to generate data about existing follow-up programmes. To produce the data needed, 4 new studies will be implemented:
The Study of Health and Wellbeing at 5 will assess reported health and child development, family wellbeing and use of health services, both as routine follow-up and as emergency visits and hospitalization, with a parental questionnaire administered by post or telephone when the child is 5 years of age. Health related quality of life will also be measured using a validated instrument. 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
The Neurodevelopmental Assessment Study includes only a sub-set of children who were born below 28 weeks of gestation, because of the higher risk of neurodevelopmental disability. A team of trained examiners will carry out in-depth assessments of these children’s cognitive and motor development at 5 years of age, using a battery of standardised tests that measure general cognitive ability (IQ), working memory, processing speed, visuo-motor integration and gross motor coordination.
The 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 characterising high performing versus low performing screening and intervention services using in-depth semi-structured personal interviews. The study population will include parents reporting high and low satisfaction with their post-discharge care and having children with and without severe impairments at 5 years of age.
The Screening Organisation, Process and Content Study will study the characteristics ofregional 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 questionnaire sent to directors of follow-up programmes in participating regions (between 1 and 20 per region). This study will complement data collected in the EPICE project (7 questions about follow-up in each neonatal unit) and will assess changes in programmes since 2012. We will also collect available programme statistics on the follow-up of the infants in the EPICE cohort