European Standards of Care for Newborn Health project
European Standards of Care for Newborn Health project
Why European Standards of Care for Newborn Health?
Differences between European countries Infrastructure for high-risk pregnancies Organisation of medical centres Transport systems Education of healthcare professionals Follow-up and continuing care Medical treatment Level of implementation of infant- and familycentred care Nutrition NICU design
From theory… to practice Project Development of European “reference“ standards • Set up of the health system Need translation before they can be implemented on the national level • Specific country situation • Level of detail in standard „Health is a country issue in the European Union. “ Implementation of standards needs to be on the national level • National requirements for standards
Why is this project so unique? • Initiated by patient (parent) representatives for patients • Parents are involved in every step of the development process A true patient centred project • About 220 experts from more than 30 countries developed the standards • Supported by more than 150 professional healthcare societies and parent/patient organisations • Covers the complexity of neonatal care • Promotes the equitable and high levels of care
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Working together All stakeholders • support the development • actively participate in development process • endorse the final standards
Development process of the standards 36 members 220 authors Approval by chairs Peer review process Chairs voted on every single standard separately Now it‘s time to act! Support by >150 organisations
European Standards of Care for Newborn Health Project Aim Development of reference standards for a broad area of topics in newborn health
TEG Birth & transfer • Transfer of mothers/infants • Information and counselling about potential risk of preterm birth • Organisation of perinatal care
Topic Expert Group „Birth & transfer“ Chair Team Dr Dietmar Schlembach, Germany Professor Umberto Simeoni, Switzerland Members of the Topic Expert Group Prof Annette Bernloehr, Germany Dr Morten Breindahl, Sweden Prof Irene Cetin, Italy Dr Maurizio Gente, Italy Dr Štefan Grosek, Slovenia Dr Gilles Jourdain, France Prof Franz Kainer, Germany Dr Andrew Leslie, UK Livia Nagy Bonnard, Switzerland Asta Radzeviciene, Lithuania Dr Nandiran Ratnavel, UK Prof Rainer Rossi, Germany Prof Matthias Roth-Kleiner, Switzerland Prof Gerard A. H. Visser, The Netherlands
TEG Medical care & clinical practice • Covers every main medical condition of preterm and ill babies (BPD, ROP, NEC, asphyxia, sepsis, jaundice, vitamin K prophylaxis, brain injuries…)
Topic Expert Group „Medical care & clinical practice“ Chair Team Professor Luc Zimmermann, The Netherlands Professor Lena Hellström-Westas, Sweden Professor Giuseppe Buonocore, Italy Members of the Topic Expert Group Dr Kathryn Beardsall, UK Prof Frank van Bel, The Netherlands Dr James Boardman, UK Dr Kajsa Bohlin, Sweden Prof Maria Borszewska-Kornacka, Poland Dr Jeroen Dudink, The Netherlands Prof Mary Fewtrell, UK Prof Andreas Flemmer, Germany Prof Anne Greenough, UK Prof Pierre Gressens, France Prof Mikko Hallman, Finland Dr Anna-Lena Hård, Sweden Prof Ann Hellström, Sweden Prof Egbert Herting, Germany Prof Anton van Kaam, The Netherlands Prof Claus Klingenberg, Norway Prof Berthold Koletzko, Germany Dr Rene Kornelisse, The Netherlands Prof Boris Kramer, The Netherlands Dr Gianluca Lista, Italy Prof Rolf F. Maier, Germany Dr Tuuli Metsvaht, Estonia Prof Delphine Mitanchez, France Dr Deirdre Murray, Ireland Prof Eren Özek, Turkey Dr Adelina Pellicer Martínez, Spain Dr Serafina Perrone, Italy Prof Christian F. Poets, Germany Prof Heike Rabe, UK Prof Irwin Reiss, The Netherlands Prof Mario Rüdiger, Germany Prof Elie Saliba, France Prof Ola Didrik Saugstad, Norway Prof Andreas Stahl, Germany Dr Michael Steidl, Germany Dr Martin Stocker, Switzerland Dr David Sweet, UK Prof Marianne Thoresen, UK Prof Win Tin, UK Dr Justyna Tołłoczko, Poland Dr Daniele Trevisanuto, Italy Prof Máximo Vento Torres, Spain Prof Henkjan Verkade, The Netherlands Dr Eduardo Villamor, The Netherlands
TEG Care procedures • • • Taking blood samples Mouth care Nappy change Positioning support Feeding tubes Support of breastfeeding Skin protection Weighing Activities of daily living Management of temperature and humidity • Respect of sleep • Comfort to minimise stress and pain Involvement of parents as much as possible
Topic Expert Group „Care procedures“ Chair Team Monique Oude Reimer-van Kilsdonk, The Netherlands Odile Frauenfelder, The Netherlands Members of the Topic Expert Group Johann Binter, Austria Dr Fátima Camba, Spain Monica Ceccatelli, Italy Dorottya Gross, Hungary Ingrid Hankes-Drielsma, The Netherlands Eva Jørgensen, Denmark Anna Kalbér, Germany Thomas Kühn, Germany Marianne van Leeuwen, The Netherlands Dr Maria López Maestro, Spain Elsa Silva, Portugal Xenia Xenofontos, Cyprus
TEG Infant- & family-centred developmental care • Parents as primary caregiver • Continuous access throughout the 24 hours • Fostering early bonding through early contact • Skin-to-skin contact • Case management plan for each newborn infant • Parents receive care taking socioeconomic, mental health and spiritual needs into account • HCPs receive counselling in communicating with parents • Training on infant- and family-centred developmental care is ensured • Managed acoustic environment • Sensory environment
Topic Expert Group „Infant- & family-centred developmental care“ Chair Team Dr Björn Westrup, Sweden Professor Pierre Kuhn, France Members of the Topic Expert Group Dr Sari Ahlqvist-Björkroth, Finland Natascia Bertoncelli, Italy Dr Nils Bergman, Sweden Prof Zack Boukydis, Hungary (†) Sylvia Caballero, Spain Dr Charlotte Casper, France Mandy Daly, Ireland George Damhuis, The Netherlands Dr Manuela Filippa, Italy Paula Guerra, Portugal Prof Petra Hüppi, Switzerland Dr Kai König, Switzerland Birgitte Lenes-Ekeberg, Norway Siri Lilliesköld, Sweden Dr Rosario Montirosso, Italy Dr Carmen Pallás Alonso, Spain Dr Milica Rankovic-Janevski, Serbia Prof Jacques Sizun, France Dr Kari Slinning, Norway Dr Inga Warren, UK
TEG NICU design • Facilitation of parental presence and optimal working environment • Facilitation of closeness and skinto-skin care • Promotion of the family as primary care giver
Topic Expert Group „NICU design“ Chair Team Dr Atle Moen, Norway Dr Boubou Hallberg, Sweden Members of the Topic Expert Group Prof Sidarto Bambang Oetomo, The Netherlands Delphine Druart, Belgium Katarina Eglin, Germany Prof Uwe Ewald, Sweden Prof Fabrizio Ferrari, Italy Prof Peter Fröst, Sweden Teresa Garzuly-Rieser, Austria Dr Erna Hattinger-Jürgenssen, Austria Silke Mader, Germany Dr Tomasz Makaruk, Poland Dr Thilo Mohns, The Netherlands Prof Jacques Sizun, France Prof Robert White, USA
TEG Nutrition • • • Guidelines on nutritional care Parenteral nutrition Preterm formula Early enteral feeding Growth monitoring and assessment Parental knowledge about feeding Early nutrition with human milk Supplements Donor milk Breast feeding
Topic Expert Group „Nutrition“ Chair Team Professor Berthold Koletzko, Germany Professor Mary Fewtrell, UK Members of the Topic Expert Group Prof Magnus Domellöf, Sweden Prof Nicholas Embleton, UK Prof Hans van Goudoever, The Netherlands Dr Darius Gruszfeld, Poland Dr Susanne Herber-Jonat, Germany Prof Alexandre Lapillonne, France Alison Mc. Nulty, UK Dr Peter Szitanyi, Czech Republic
TEG Ethical decision making & palliative care • All relevant information are shared • Rights of infants, parents and families are respected • Shared decision-making on withholding or withdrawing life support • Interdisciplinary neonatal palliative care is applied
Topic Expert Group „Ethical decision making & palliative care“ Chair Team Professor Jos Latour, UK Professor Gorm Greisen, Denmark Members of the Topic Expert Group Elsa Afonso, Spain/UK Prof Hans-Ulrich Bucher, Switzerland Dr Laurence Caeymaex, France Dr Marina Cuttini, Italy Prof Nicholas Embleton, UK Dr Milivoj Novak, Croatia Dr Daniel Nuzum, Ireland Prof Jochen Peters, Germany Karl Rombo, Sweden Yannic Verhaest, Belgium Dr Daniel Wood, UK
TEG Follow-up & continuing care • Neurological status, motor development • Behaviour, emotional and attention problems • Comprehensive discharge management • Communication, speech, and language development • Peer and sibling relationships • Respiratory health • Cognitive assessment • Comprehensive care after discharge • Hearing screening • School readiness • Risk of recurrence • Visual assessment • Preventive responsive parenting support • Cardiometabolic risk factors • Parental mental health
Topic Expert Group „Follow-up & continuing care“ Chair Team Professor Dieter Wolke, UK/Germany Dr Aleid van Wassenaer-Leemhuis, The Netherlands Members of the Topic Expert Group Prof Laura Bosch, Spain Dr Christiaan Geldof, The Netherlands Prof Mijna Hadders-Algra, The Netherlands Prof Christoph Härtel, Germany Prof Egbert Herting, Germany Dr Bregje Houtzager, The Netherlands Dr Britta Hüning, Germany Dr Shelley Hymel, Canada Dr Julia Jäkel, USA/Germany Prof Mark Johnson, UK Prof Samantha Johnson, UK Prof Eero Kajantie, Finland Dr Anne van Kempen, The Netherlands Dr Karen Koldewijn, The Netherlands Prof Liisa Lehtonen, Finland Prof Els Ortibus, Belgium Dr Anne-Marie Oudesluys. Murphy, The Netherlands Dr Vilhelmiina Parikka, Finland Dr Veronique Pierrat, France Dr Federico Prefumo, Italy Prof Alessandra Sansavini, Italy Dr Gert van Steenbrugge, The Netherlands Dr Irma van Straaten, The Netherlands Dr Jacqueline UM Termote, The Netherlands Prof Tracy Vaillancourt, Canada Mónica Virchez Figueroa, Spain Dr Brigitte Vollmer, UK Dr Marie-Jeanne Wolf-Vereecken, The Netherlands
TEG Patient safety & hygiene practice • • • • Hand hygiene Personal hygiene Environmental hygiene Central venous catheters Nurse staffing levels Safe use of equipment Care bundles for NEC Vascular access Patient safety and quality improvement Ventilator associated pneumonia Medication errors Multidrug-resistant bacteria Monitoring of physiological functions
Topic Expert Group „Patient safety & hygiene practice“ Chair Team Professor Pierre Tissières, France Dr Onno Helder, The Netherlands Members of the Topic Expert Group Dr Susana Ares Segura, Spain Dr Alessandro Borghesi, Italy Maria Josep Cabañas Poy, Spain Prof Daniele De Luca, France Dr Cécile Dubois, France Prof Christoph Fusch, Germany Estrella Gargallo, Spain Dr Eric Giannoni, Switzerland Prof Christoph Härtel, Germany Dr Janota, Czech Republic Dr Ulrik Lausten-Thomsen, France Dr Nolwenn Le Saché, France Silke Mader, Germany Dr Paolo Manzoni, Italy Dr Josep Perapoch, Spain Prof Christian F. Poets, Germany Roland van Rens, The Netherlands Prof Rainer Rossi, Germany Dr Heleen van der Sijs, The Netherlands Dr Cynthia van der Starre, The Netherlands Nicole Thiele, Germany Dr Tobias Trips, Germany Lucie Žáčková, Czech Republic
TEG Data collection & documentation • Quality information is available • Indicators comply with published standards
Topic Expert Group „Data collection & documentation“ Chair Team Professor Gérard Bréart, France Dr Nicholas Lack, Germany Members of the Topic Expert Group Prof Mika Gissler, Finland Prof Wolfgang Göpel, Germany Prof Dominique Haumont, Belgium Dr Ashna Hindori-Mohangoo, The Netherlands Vilni Verner Holst Bloch, Norway Prof Helmut Hummler, Germany Dr Begoña Loureiro Gonzalez, Spain Dr Miklós Szabó, Hungary Dr Liis Toome, Estonia Dr Eleni Vavouraki, Greece Dr Jennifer Zeitlin, France
TEG Education & training of the multidisciplinary team working in neonatology • • Simulation training Continuing professional development Evidence-based care Competency based training for doctors and nurses • Parents receive training programme • Resuscitation training • Interprofessional education
Topic Expert Group „Education & training of the multidisciplinary team working in “ Chair Team Professor Linda Johnston, Ireland/Canada Professor Charles C. Roehr, UK/Germany Dr Agnes van den Hoogen, The Netherlands Dr Morten Breindahl, Sweden Members of the Topic Expert Group Charlotte Bouvard, France Dr Marina Boykova, Russia/USA Prof Karl Heinz Brisch, Germany Prof Duygu Gözen, Turkey Prof Moshe Hod, Israel Thomas Kühn, Germany Dr Trudi Mannix, Australia Marni Panas, Canada Dr Julia Petty, UK Dr Mirjam Schuler Barazzoni, Switzerland Natascia Simeone, Italy Dr Dalia Stoniene, Lithuania Dr Inge Tency, Belgium Nicole Thiele, Germany Dr Inga Warren, UK
Call to Action for Newborn Health in Europe
Call to Action – How it can be used?
Call to Action – How it can be used?
What has been achieved so far? • Development of 96 standards together with 220 experts from more than 30 countries • Support of 120* international and national healthcare professional societies *Status: September 2019
What has been achieved so far? Support of 51* parent organisations *Status: September 2019
Supporting industry partners Thanks to Dräger for supporting the project from 2013 till 2015. Thanks to Shire for supporting the project from 2014 till 2018. Their role: Participants at the Chair Committee meetings as silent observers, without voting rights, and no product related information sharing. We thank our industry partners for supporting the project.
What has been achieved so far? Target group and media-effective launch of the standards in Brussels – November 2018 • Bavarian representation in Brussels • Evening event • European Parliament • Afternoon session
What has been achieved so far? Publications and awards • Infant journal “Combining forces for preterm infants” (2016) • Editorial in THE LANCET “The unfinished agenda of preterm birth” (2016) • Awarded “Land of ideas” (2017) • Editorial in THE LANCET Child & Adolescent Health (2019) • Several national publications
Outlook and implementation strategy • More publications are to come • Review and extension of existing standards (Life cycle) • Development of measurement tools for outcome measures together with ICHOM in collaboration with Ludwig-Maximilians-University Munich • Implementation research: what impact will the standards implementation have? • Development of a self assessment • Toolkit: Launch at j. ENS congress in Maastricht • EFCNI Academy: Education modules in cooperation with professional societies and universities (pilot: „How to build up a human milk bank? “) • EFCNI Fellowship programme: education modules for parent representatives
Thank you very much for your attention! © Copyright Information The ideas in this presentation are the intellectual property of the foundation and remain under current copyright laws. Multiplication and/ or distribution to third parties is not permitted.
© EFCNI Thank you very much for your attention! © Copyright Information The ideas in this presentation are the intellectual property of the foundation and remain under current copyright laws. Multiplication and/ or distribution to third parties is not permitted.
European Standards of Care for Newborn Health project in a nutshell Aim: Development of standards for the key topics in neonatal health in the context of an interdisciplinary European project Focus: Preterm and ill newborn infants Method: Work in topic-specific expert groups; about 220 high-level experts of different professions, parent representatives and selected industry specialists from more than 30 countries developed 96 standards Over 170 international supporting organisations Standard development period: 2013 – 2018 Special feature: Active collaboration of different stakeholders Next steps: National implementation of the standards Project website: www. newborn-healthstandards. org
European Foundation for the Care of Newborn Infants (EFCNI) Chairwoman of the Executive Board: Silke Mader Hofmannstraße 7 A D-81379 Munich, Germany Tel: +49 (0)89 / 89083260 Fax: +49 (0)89/ 890832610 E-mail: info@efcni. org
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