Community Research and Development Information Service - CORDIS

H2020

SHIPS Report Summary

Project ID: 633724
Funded under: H2020-EU.3.1.2.

Periodic Reporting for period 1 - SHIPS (Screening to improve Health In very Preterm infantS in Europe)

Reporting period: 2015-09-01 to 2017-02-28

Summary of the context and overall objectives of the project

The Screening to Improve Health In very Preterm InfantS in Europe (SHIPS) project aims to improve follow-up programmes for children born very preterm in Europe by studying their impact on the children and their families. The project builds on the EPICE - a European cohort of very preterm infants born in 2011/2012. The cohort includes all stillbirths and live births between 22 and 31 weeks of gestation born in all the maternity units of the 19 regions in the 11 countries that participated in the EPICE project.

Very preterm birth is associated with motor and cognitive impairment in later life. About 50,000 infants in the EU survive very preterm birth every year and these children are at higher risk of cerebral palsy, visual and auditory deficits, impaired cognitive ability and behavioural problems than infants born at term. At initial discharge from hospital, the prognosis for each infant is unknown. Many children, even those with risk factors for poor outcome, will experience no health problems in childhood, whereas others may face serious challenges.

Follow-up screening and prevention programmes aim to identify problems early, enable interventions to improve outcome and to allow optimal management of health care. Despite the recognised importance of these programmes, little is known about their actual application and impact. These programmes consume significant resources because of the multidisciplinary staff required for clinical and developmental assessments and interventions, the coordination required to maintain contact with children after discharge and the time input from families.

The SHIPS project assesses the impact of these screening programmes by following the EPICE cohort at 5 years of age. It collects information on health, healthcare care and quality of life of these very preterm children and their families as well as on programme coverage, ability to meet needs, health equity and costs at the population level.

The project also aims to generate new knowledge about assessment tools and methods. This new knowledge will be used to develop European guidelines for follow-up screening and prevention programmes for very preterm infants, with input from clinicians, researchers, policy-makers, representatives of user groups and families.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

During this reporting period, protocols for three of the four SHIPS studies were developed: the Health and Wellbeing at 5 study, the Neurodevelopmental Assessment Study and the Study on Existing Follow-up and Prevention Programmes. This involved producing necessary study materials (consent forms and study information letters), all approved by the regional authoritative institutions in order to be able to launch the data collection. The identification of the study population (addresses and vital statuses) was accomplished and finished by nearly all partners, who all started, or were about to start data collection at the end of the first reporting period. The study on existing follow-up programmes was also at its final phase in the end of February 2017.

The development of a protocol for the Neurodevelopmental Assessment Study included extensive work on identifying an appropriate test battery and to ensure comparability across the participation regions (described in our deliverable reports). As part of this work, valuable results have already been obtained about the national regulatory environments across the study countries, with some recommending assessments of all children at 5 years of age and others having no recommendations. Many of the existing recommendations are recent, showing that this is an area where the consensus on best practice is evolving and where the possibility of learning from other countries is high.

Furthermore, we have, as part of work package 3, collected information that will enable more detailed analysis on existing follow-up and their content, and analysing these recommendations in more detail in order to provide support to clinicians and policy makers.
Apart from successfully preparing and launching the SHIPS studies and obtaining the first study results, a SHIPS logo was created and a webpage was published. Several communication activities to raise awareness were also disseminated by the European Foundation for the Care of Newborn Infants (EFCNI) to promote the study.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

The main focus –and greatest challenge– of our work during this period was to create a protocol for our studies based on validated instruments in order to collect standardised information on the health and development of children at 5 years of age across European countries. As part of this process, we uncovered the inadequacy of the current state-of-the-art as none of the instruments to assess child development at 5 years of age are available –much less validated– in all countries. This result, which has been described in detail in deliverable 4.1 and will be the focus of a scientific publication, is one of the first important outputs of our study. This result calls attention to the need for harmonisation of current tools and can orient action to improve policy and practice.

We also documented the wide range of policy approaches to follow-up in the European countries that are participating in SHIPS. This work, carried out in WP3, described existing policies and provided detailed information about the content and methods of these programmes. This profile of existing programmes in Europe, designed using a framework derived from a comprehensive scoping review of data needed to describe follow-up based on the published literature, constitutes a valuable resource for clinicians and policy makers who need to make decisions about follow-up programmes.

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