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IMPROVING HEALTH FOR VERY PRETERM CHILDREN IN EUROPE

PARENTS

We would like to thank all parents and children who created the EPICE cohort and participated in the 2 year follow-up. Now we are looking forward to you being part of SHIPS, the follow-up at 5 years of age. Here you will find information about the study, participation and results. More information will be posted as the study moves along. If you have any questions about the study, you are welcome to contact the SHIPS team. For access to the parent information sheet from 2 year follow-up, see here.

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Participating in the follow-up at 5

The SHIPS project aims to improve the follow-up care of children born prematurely. To do so, we are studying different follow-up programmes in Europe and their possible impact on the EPICE children and families. To better understand their impact, we also want to know about your child’s health and development, and what kind of health care he or she has used.

The follow-up at 5 consists of a questionnaire to be filled in by the parent, and a health assessment of your child.

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Questionnaire

If you have chosen to participate in the study, we will ask you to fill in a questionnaire that takes about 25-35 minutes to complete. In the questionnaire we ask about your child’s health status, quality of life, health service use and overall development. We also ask questions about your own well-being and family situation.

Health assessment

Some of the children in the cohort – those who are born before 28 weeks of gestation – will also be invited to a health assessment. A research clinician will carry out some tests to see how your child develops, and to detect possible difficulties in your child, such as movement difficulties. The tests include games such as naming pictures and drawing lines.

We will not test any drugs nor therapeutic medications this study, and the participation will not cause any disadvantages or risks for you or your child. It is completely free and voluntary to participate in the study, and you can stop your and your child’s participation at any time.

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  Parent involvement and outreach

To make the best study possible, it is important to have parents involved, not only as participants, but also in the development of the study. It is equally important that parents of preterm babies are informed about the study results and findings. EFCNI, the European Foundation for the Care of Newborn Infants is the first pan-European organisation and network to represent the interests of preterm and newborn infants and their families. They gather together parents, healthcare experts, policy-makers, scientists, and other stakeholders within the healthcare system with the common goal of improving long-term health of preterm and newborn children by ensuring the best possible prevention, treatment, care and support. EFCNI is contributing to the SHIPS project by providing a link between researchers and parents. They constituted a parental advisory board involving parent representatives from all over Europe. The parental advisory board gives feedback about SHIPS communication tools, questionnaires and informational materials. News about the SHIPS study and its findings can also be found on the EFCNI website, social media channels, or by signing up to the EFCNI newsletter here.

Results

Researchers from each of the 18 SHIPS countries are currently analysing the results from the EPICE cohort and 2 year follow-up. You will find the first results here as soon as they are published.