The Hermitage Amsterdam Information Accreditation Accreditation is requested by the NVK and NIP. Information Liesbeth Osterop, Communication & Public Relations Emma Children’s Hospital AMC Meibergdreef 9, Postbus 22660, 1100 DD Amsterdam Tel. + 31 20 – 566 7987 / [email protected] www.amc.nl/ekz The Dutch Neonatal Follow-Up Work Group celebrates her 20th anniversary by organising an exquisite congress on obstetric, neonatal, and long-term aspects of preterm birth. The last 20 years have shown a decrease in perinatal mortality and neonatal mortality. This improvement has led to treatment of more immature infants with lower birth weights. Evaluating perinatal and neonatal care is therefore more and more important. Although major improvements have been made to optimize preterm children's outcomes at the long-term, preterm birth is still associated with neurodevelopmental disabilities. In the morning, lectures to be given will point out the importance of long-term follow- up for obstetric care, the impact of neonatal care on long-term follow-up, important neurobehavioural interventions as well as the current state of the art on long-term outcomes of NICU graduates. In the afternoon, diverse interactive workshops offer the opportunity to increase knowledge and skills on developmental and school age assessments as well as on intervention programs designed to protect the preterm infant's brain at the neonatal ward or post discharge. Aleid van Wassenaer-Leemhuis, MD, PhD (president) Corine Koopman-Esseboom, MD, PhD Jeroen Vermeulen, MD, PhD Ria Nijhuis-van der Sanden, PPT, PhD Anneloes van Baar, PhD Nynke Weisglas-Kuperus, MD, PhD Cornelieke Aarnoudse-Moens, PhD Programme 9.00 - 9.30 hr Registration Chair: Arend Bos 9.30 - 9.45 hr ‘On 20 years follow up of very low birthweight infants in the Netherlands’ Aleid van Wassenaer-Leemhuis 9.45 - 10.25 hr ‘On the importance of child follow up in decision making in obstetrical care of high risk pregnancies’ Dwight Rouse 10.25 - 11.05 hr ‘How neonatal care has altered long term child outcome. Where next? ’ Neil Marlow 11.05 - 11.30 hr Coffee 11.30 - 12.10 hr ‘Important ingredients of neurobehavioural interventions; what will make a change for long-term child outcome’ Björn Westrup 12.10 - 12.35 hr ‘The Bayley III: a 'new' instrument to assess infant and toddler development in The Netherlands’ Anneloes van Baar 12.35 - 12.50 hr The European Foundation for the Care of Newborn Infants Silke Mader 12.50 - 14.15 hr Lunch with presentation e-posters and possibility to visit museum 14.15 - 15.15 hr Workshops 15.30 - 16.30 hr Workshops 16.30 - 17.30 hr Farewell drinks Speakers Cornelieke Aarnoudse-Moens, PhD, child neuropsychologist neonatal follow-up, Emma Children's Hospital Amsterdam AMC, The Netherlands Anneloes van Baar, PhD, professor of Pedagogics, Faculty of Social Sciences at Utrecht University. Arend Bos, MD, PhD, professor of Neonatology, University Medical Center Groningen, The Netherlands Silke Mader, Chairwoman European Foundation for the Care of Newborn Infants (EFCNI) Neil Marlow, MD, PhD, professor of Neonatology, University College, London Jaap Oosterlaan, PhD, professor of Pediatric Neuropsychology, Department of Clinical Neuropsychology, VU University Amsterdam, Amsterdam, The Netherlands Dwight Rouse, MD, MSPH, professor of Obstetrics and Gynaecology, Alpert Medical School of Brown University and Maternal-Fetal Medicine, Women & Infants Hospital of Rhode Island, USA Jeroen Vermeulen, MD, PhD, associate professor of Child Neurology, VU University Medical Center, Neuroscience Campus Amsterdam, The Netherlands Aleid van Wassenaer-Leemhuis, MD, PhD, head of neonatal follow up Emma Children’s Hospital AMC. Chair of the Dutch Neonatal Follow-up working group Nynke Weisglas-Kuperus, PhD developmental pediatrician, Sophia Children's Hospital, Erasmus Medical Center, Rotterdam, The Netherlands Björn Westrup, MD, PhD, medical director of neonatology/director of the Karolinska NIDCAP Training Center, Karolinska University Hospital, Stockholm Marie-Jeanne Wolf, Head EOP (Expertisecentrum Ontwikkelings-ondersteuning Prematuren), Amsterdam, The Netherlands Presentations 9.30 - 9.45 hr ‘On 20 years follow up of very low birthweight infants in the Netherlands’ Aleid van Wassenaer-Leemhuis The LNF working group was an initiative of pediatricians, psychologists, speech therapist and physiotherapists from all 10 NICU’s. Today we are still working together, and input is needed from all professionals and from all sites. Over the past 20 years neonatology and long term follow up care both have improved. Also, parents have an increasingly important role. On the one hand is more known how to support them, and on the other hand they give important feedback on how to improve follow up programs. Follow up care is and should remain an integral part of each NICU. ______________________________________________ _____________________________________________ _____________________________________________ 9.45 - 10.25 hr ‘On the importance of child follow up in decision making in obstetrical care of high risk pregnancies’ Dwight Rouse In my talk, I will discuss why and when long term follow-up is important, when it is less important, and that it is best accomplished with prospective planning. The perspective that I will take is that of a clincal trialist, and I will acknowledge that rarely does an obstetric trial lead to robust conclusions about long term outcome. ______________________________________________ _____________________________________________ _____________________________________________ 10.25 - 11.05 hr ‘How neonatal care has altered long term child outcome. Where next? ’ Neil Marlow Over the past 40 years outcome has improved decade on decade and continues. Careful studies are needed to show this over short time frames. I will review evidence for improving outcomes and then review more recent interventions that may help to improve outcomes. Finally I will suggest areas where interventions may target such outcomes to improve the next generation of very preterm graduates. ______________________________________________ _____________________________________________ _____________________________________________ 11.30 - 12.10 hr ‘Important ingredients of neurobehavioural interventions; what will make a change for long-term child outcome’ Björn Westrup The presentation will discuss important ingredients of neurobehavioural interventions proven to change the long-term outcome of prematurely born infants as well as the implications it has on the system of neonatal care and follow-up - a systems perspective of neonatology. ______________________________________________ _____________________________________________ _____________________________________________ 12.10 - 12.35 hr ‘The Bayley III: a 'new' instrument to assess infant and toddler development in The Netherlands’ Anneloes van Baar This presentation will inform the audience on the progress of the study to create Dutch norms for the Bayley-III-NL. The LNF actively was involved in acquiring funds and support for this project. The information will show the adaptations needed, as well as some preliminary results. ______________________________________________ _____________________________________________ _____________________________________________ 12.35 - 12.50 hr The European Foundation for the Care of Newborn Infants Silke Mader, Member of the Trustee board of EFCNI is a non-profit organization and founded from parents and professionals to improve the situation on maternal and newborn health and aftercare services in Europe. In 2010 a Benchmarking Report was published to show politicians, but also other stakeholders and decision makers the need to act. One baby in ten is born premature, but a standard of care in Europe is lacking. EFCNI wants to develop and implement standard of cares in collaboration with parent organisations and professional societies. In 2011 EFCNI published and launched a White Paper on maternal and newborn health and aftercare services in the EU Parliament. It is now time to act and EFCNI is actively asking for everybody's vote on the ene mene mini website www.ene-mene-mini.eu. ______________________________________________ _____________________________________________ _____________________________________________ Workshops Auditorium Workshop 1 Developmental assessment measures Anneloes van Baar In this workshop strengths and difficulties of different measures to assess developmental outcome, such as the Ages and Stages Questionnaires and the Bayley scales, will be discussed. ___________________________________________________ __________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ Tsjechovzaal Workshop 2 How to diagnose CP and MND Jeroen Vermeulen and Nynke Weisglas-Kuperus Neurological disabilities are a major complication of preterm birth. We will address neuromotor development, the diagnosis of the different types of cerebral palsy and functional classification for mobility with the Gross Motor Function Classification System. ___________________________________________________ __________________________________________________ __________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________