Screening to improve Health in Very Preterm Infants in Europe - SHIPS
Very preterm infants face higher risks of health and developmental issues than children born at term. Follow-up programmes aim to identify any problems early in order to enable interventions and optimal management of health care needs. The Screening to Improve Health In very Preterm InfantS in Europe (SHIPS) project seeks to create new knowledge about the effectiveness of these programmes and to use these results to develop guidelines for effective follow-up. The overall aim is to improve the health and quality of life of children born very preterm.
SHIPS is a European research collaboration building 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. These children are now five years of age and their families are invited to participate in the SHIPS studies.
Via the four different SHIPS sub-studies the researchers collect data in the study regions on
- the children’s health, healthcare use and quality of life
- the children’s cognitive and motor development
- the families’ experiences of follow-up and subsequent care
- on the coverage, content and costs of the follow-up and screening programmes
Therefore, a multi-piece data collection approach was conceptualised to gather data from questionnaires filled out by parents, assessments of children’s (< 28 weeks) development by clinical psychologists, personal interviews with selected parents about their experiences of follow-up, and structured questionnaires sent to directors on follow-up programmes.
EFCNI is proud to be involved as partner adding patient perspectives and personal experiences to the research process and leading the activities for parental involvement as well as dissemination and outreach in SHIPS. A SHIPS Parent Advisory Board (PAB) with 13 members was constituted:
- Charlotte Bouvard, SOS Préma, France
- Monica Ceccatelli, Piccino Picciò Onlus/ Vivere Onlus, Italy
- Mandy Daly, Irish Neonatal Health Alliance INHA, Ireland
- Paula Cristina Guerra, XXS – Associação Portuguesa de Apoio ao Bebé Prematuro, Portugal
- Kristel Kukk, MTÜ Enneaegsed lapsed, Estonia
- Dr Tomasz Makaruk, Fundacja Wczesniak Rodzice-Rodzicom, Poland
- Livia Nagy Bonnard, Melletted a helyem – Right(s) beside you, Hungary
- Mehali Patel, BLISS, United Kingdom
- Karl Rombo, Föräldraföreningen för Prematurfödda Barn, Sweden
- Dr Gert van Steenbrugge, Vereniging van Ouders van Couveusekinderen, Netherlands
- Dr Eleni Vavouraki, ilitominon, Greece
- Yannic Verhaest, Vlaamse Vereniging voor Ouders van Couveusekinderen (VVOC), Belgium
- Mónica Virchez, Prematura, Spain
The SHIPS infographic makes complex information about preterm birth and long-term outcomes easy to understand and shareable. Select between a purple and a yellow version to present these eye catching facts in your pratice, hospital or in presentations.
Have a look at the newly launched factsheet to learn more about the aim and scope of SHIPS, its supporting partners and the structure of the project.
Call for participation
In order to improve follow-up care, SHIPS encourages parents and parent organisations to contribute to the success of the project and has sent this motivational message.
“Hi, my name is Lina. I was born extremely preterm. When I was two years old, my parents took part in the research project EPICE. Now, I am five years old and my parents were asked to participate in the next milestone which is now called SHIPS (Screening to improve Health In very Preterm InfantS in Europe). And sure, they will, since SHIPS will help to improve follow-up care for preterms like me. Your participation will make a valuable contribution. Warm regards, Lina”
SHIPS is a transdisciplinary consortium of researchers from 18 regions from 11 EU Member States and parent representatives. Expertise from obstetrics, paediatrics, epidemiology and health services research is brought into the project. The following twelve partners who coordinate all research activities in their country can be found here:
Milestones by EFCNI
- Constitution of a parental advisory board for SHIPS consisting of 16 parent representatives
- Report on feedback about user friendliness and clearness of project material and data collection tools by PAB and EFCNI
- Factsheet on SHIPS for share
- Regular personal contact between researchers and the national parent organisations on EFCNI’s Annual Parent Organisations meeting and meeting with the parental advisory board
Next steps 2018
- To implement measures to engage parents who took part in the EPICE project to participate in SHIPS until early summer 2018
- To finalise a toolkit for parent organisations supporting them in advocating for follow-up care in their countries
- To verbalise the upcoming research findings in order that they are easier to understand for non-expert target groups like the general public or parents and patients
- To conceptualise a meeting bringing together SHIPS researchers and representatives of national parent organisations to exchange on SHIPS
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 633724