European Standards of Care for Newborn Health project

1. European Standards of Care for Newborn Health project

2. Why European Standards of Care for Newborn Health?

3. Differences between European countries Infrastructure for high-risk pregnancies Transport systems Organisation of medical centres Follow-up and continuing care Education of healthcare professionals Medical treatment NICU design Nutrition Level of implementation of infant- and family-centred care

4. Fromtheory… topractice Set up of the health system Specific country situation Level of detail in standard National requirements for standards Development of European “reference“ standards Project Need translation before they can be implemented on the national level „Health is a countryissue in the European Union.“ Implementation ofstandardsneedstobe on the national level

5. Whyisthisproject so unique? Initiated by patient (parent) representativesforpatients Parents are involved in every step of the development process A true patient centred project About 220 expertsfrommore 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

6. 120 51

7. Working together All stakeholders support the development actively participate in development process endorse the final standards

8. Development processofthe standards 36 members 220 authors Approvalbychairs Peer reviewprocess Chairsvoted on everysinglestandardseparately Nowit‘s time toact! Support by >150 organisations

9. European Standards of Care forNewbornHealth Project Aim Development of reference standards for a broad area of topics in newborn health

10. TEG Birth & transfer • Transfer ofmothers/infants • Information and counsellingabout potential riskofpretermbirth • Organisation of perinatal care

11. Topic Expert Group „Birth & transfer“ Chair Team Dr Dietmar Schlembach, GermanyProfessor Umberto Simeoni, Switzerland Members ofthe Topic Expert Group Dr Andrew Leslie, UK Livia Nagy Bonnard, Switzerland Asta Radzeviciene, Lithuania Dr NandiranRatnavel, UK Prof Rainer Rossi, Germany Prof Matthias Roth-Kleiner, Switzerland Prof Gerard A.H. Visser, The Netherlands Prof Annette Bernloehr, Germany Dr Morten Breindahl, Sweden Prof Irene Cetin, Italy Dr Maurizio Gente, Italy Dr ŠtefanGrosek, Slovenia Dr Gilles Jourdain, France Prof Franz Kainer, Germany

12. TEG Medical care & clinicalpractice • Covers everymainmedicalconditionofpreterm and illbabies (BPD, ROP, NEC, asphyxia, sepsis, jaundice, vitamin K prophylaxis, braininjuries…)

13. Topic Expert Group „Medical care & clinicalpractice“ Chair Team Professor Luc Zimmermann, The NetherlandsProfessor Lena Hellström-Westas, SwedenProfessor Giuseppe Buonocore, Italy Members ofthe Topic Expert Group Dr Kathryn Beardsall, UK Prof Frank van Bel, The Netherlands Dr James Boardman, UK Dr KajsaBohlin, 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 Mario Rüdiger, Germany Prof Elie Saliba, France Prof Ola DidrikSaugstad, 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 MáximoVento Torres, Spain Prof HenkjanVerkade, The Netherlands Dr Eduardo Villamor, 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 TuuliMetsvaht, 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

14. TEG Care procedures • Takingbloodsamples • Mouth care • Nappychange • Positioningsupport • Feedingtubes • Support ofbreastfeeding • Skin protection • Weighing • Activitiesofdailyliving • Management oftemperature and humidity • Respectofsleep • Comforttominimise stress and pain •  Involvement ofparentsasmuchaspossible

15. Topic Expert Group „Care procedures“ Chair Team Monique Oude Reimer-van Kilsdonk, The NetherlandsOdile Frauenfelder, The Netherlands Members ofthe Topic Expert Group Anna Kalbér, Germany Thomas Kühn, Germany Marianne van Leeuwen, The Netherlands Dr Maria López Maestro, Spain Elsa Silva, Portugal Xenia Xenofontos, Cyprus Johann Binter, Austria Dr Fátima Camba, Spain Monica Ceccatelli, Italy DorottyaGross, Hungary Ingrid Hankes-Drielsma, The Netherlands Eva Jørgensen, Denmark

16. TEG Infant- & family-centreddevelopmental care • Parentsasprimarycaregiver • Continuousaccessthroughoutthe 24 hours • Fosteringearlybondingthroughearlycontact • Skin-to-skin contact • Case management plan foreachnewborninfant • Parentsreceive care takingsocioeconomic, mental health and spiritual needsintoaccount • HCPs receivecounselling in communicatingwithparents • Training on infant- and family-centreddevelopmental care isensured • Managedacousticenvironment • Sensoryenvironment

17. Topic Expert Group „Infant- & family-centreddevelopmental care“ Chair Team Dr Björn Westrup, SwedenProfessor Pierre Kuhn, France Members ofthe Topic Expert Group Dr Sari Ahlqvist-Björkroth, Finland NatasciaBertoncelli, 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

18. TEG NICU design • Facilitationof parental presence and optimal workingenvironment • Facilitationofcloseness and skin-to-skin care • Promotion ofthefamilyasprimary care giver

19. Topic Expert Group „NICU design“ Chair Team Dr Atle Moen, NorwayDr BoubouHallberg, Sweden Members ofthe Topic Expert Group 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 Prof SidartoBambangOetomo, The Netherlands Delphine Druart, Belgium Katarina Eglin, Germany Prof Uwe Ewald, Sweden Prof Fabrizio Ferrari, Italy Prof Peter Fröst, Sweden Teresa Garzuly-Rieser, Austria

20. TEG Nutrition • Guidelines on nutritional care • Parenteral nutrition • Pretermformula • Early enteral feeding • Growth monitoring and assessment • Parental knowledgeaboutfeeding • Early nutritionwith human milk • Supplements • Donor milk • Breastfeeding

21. Topic Expert Group „Nutrition“ Chair Team Professor Berthold Koletzko, GermanyProfessor Mary Fewtrell, UK Members ofthe Topic Expert Group Dr Susanne Herber-Jonat, Germany Prof Alexandre Lapillonne, France Alison McNulty, UK Dr Peter Szitanyi, Czech Republic Prof Magnus Domellöf, Sweden Prof Nicholas Embleton, UK Prof Hans van Goudoever, The Netherlands Dr Darius Gruszfeld, Poland

22. TEG Ethicaldecisionmaking & palliative care • All relevant informationareshared • Rightsofinfants, parents and familiesarerespected • Shareddecision-making on withholdingorwithdrawinglifesupport • Interdisciplinaryneonatal palliative care isapplied

23. Topic Expert Group „Ethicaldecisionmaking & palliative care“ Chair Team Professor Jos Latour, UKProfessor Gorm Greisen, Denmark Members ofthe Topic Expert Group Dr Daniel Nuzum, Ireland Prof Jochen Peters, Germany Karl Rombo, Sweden YannicVerhaest, Belgium Dr Daniel Wood, UK 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

24. TEG Follow-up & continuing care • Neurological status, motordevelopment • Behaviour, emotional and attentionproblems • Comprehensivedischargemanagement • Communication, speech, and languagedevelopment • Peer and siblingrelationships • Respiratoryhealth • Cognitiveassessment • Comprehensive care after discharge • Hearing screening • School readiness • Riskofrecurrence • Visual assessment • Preventiveresponsiveparentingsupport • Cardiometabolicriskfactors • Parental mental health

25. Topic Expert Group „Follow-up & continuing care“ Chair Team Professor Dieter Wolke, UK/GermanyDr Aleid van Wassenaer-Leemhuis, The Netherlands Members ofthe Topic Expert Group Prof Laura Bosch, Spain Dr Christiaan Geldof, The Netherlands Prof MijnaHadders-Algra, The Netherlands Prof Christoph Härtel, Germany Prof Egbert Herting, Germany Dr BregjeHoutzager, 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 VilhelmiinaParikka, 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

26. TEG Patient safety & hygienepractice • Hand hygiene • Personal hygiene • Environmental hygiene • Central venouscatheters • Nurse staffinglevels • Safe useofequipment • Care bundlesfor NEC • Vascularaccess • Patient safety and qualityimprovement • Ventilator associatedpneumonia • Medicationerrors • Multidrug-resistantbacteria • Monitoring ofphysiologicalfunctions

27. Topic Expert Group „Patient safety & hygienepractice“ Chair Team Professor Pierre Tissières, FranceDr OnnoHelder, The NetherlandsMembers ofthe Topic Expert Group 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 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 EstrellaGargallo, Spain Dr Eric Giannoni, Switzerland Prof Christoph Härtel, Germany Dr Jan 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

28. TEG Data collection & documentation • Quality informationisavailable • Indicatorscomplywithpublished standards

29. Topic Expert Group „Data collection & documentation“ Chair Team Professor Gérard Bréart, FranceDr Nicholas Lack, Germany Members ofthe Topic Expert Group Dr Begoña Loureiro Gonzalez, Spain Dr MiklósSzabó, Hungary Dr LiisToome, Estonia Dr Eleni Vavouraki, Greece Dr Jennifer Zeitlin, France Prof Mika Gissler, Finland Prof Wolfgang Göpel, Germany Prof Dominique Haumont, Belgium Dr AshnaHindori-Mohangoo, The Netherlands Vilni Verner Holst Bloch, Norway Prof Helmut Hummler, Germany

30. TEG Education & trainingofthemultidisciplinaryteamworking in neonatology • Simulation training • Continuing professional development • Evidence-based care • Competencybasedtrainingfordoctors and nurses • Parentsreceivetrainingprogramme • Resuscitationtraining • Interprofessional education

31. Topic Expert Group „Education & trainingofthemultidisciplinaryteamworking in “ Chair Team Professor Linda Johnston, Ireland/CanadaProfessor Charles C. Roehr, UK/GermanyDr Agnes van den Hoogen, The NetherlandsDr Morten Breindahl, SwedenMembers ofthe Topic Expert Group Dr Julia Petty, UK Dr Mirjam Schuler Barazzoni, Switzerland NatasciaSimeone, Italy Dr Dalia Stoniene, Lithuania Dr Inge Tency, Belgium Nicole Thiele, Germany Dr Inga Warren, UK Charlotte Bouvard, France Dr Marina Boykova, Russia/USA Prof Karl Heinz Brisch, Germany Prof DuyguGözen, Turkey Prof Moshe Hod, Israel Thomas Kühn, Germany Dr Trudi Mannix, Australia MarniPanas, Canada

32. Call to Action forNewbornHealth in Europe

33. Call to Action – Howitcanbeused?

34. Call to Action – Howitcanbeused?

35. Whathasbeenachieved 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

36. Whathasbeenachieved so far? Support of 51* parent organisations *Status: September 2019

37. 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. Theirrole: Participants at the Chair Committee meetingsassilentobservers, withoutvotingrights, and noproductrelatedinformationsharing. Wethankourindustrypartnersforsupportingtheproject.

38. Whathasbeenachieved so far? Target group and media-effective launch of the standards in Brussels – November 2018 • Bavarianrepresentation in Brussels • Eveningevent • European Parliament • Afternoonsession

39. Whathasbeenachieved 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

40. Outlook andimplementationstrategy • More publicationsaretocome • Review and extensionofexisting standards (Life cycle) • Development ofmeasurementtoolsforoutcomemeasurestogetherwith ICHOM in collaborationwith Ludwig-Maximilians-University Munich • Implementation research: whatimpact will the standards implementationhave? • Development of a selfassessment • Toolkit: Launch at jENS congress in Maastricht • EFCNI Academy: Education modules in cooperationwith professional societies and universities (pilot: „Howtobuild up a human milk bank?“) • EFCNI Fellowship programme: educationmodulesforparentrepresentatives

43. European Standards of Care for Newborn Health project in a nutshell Aim: Development of standards for thekeytopics in neonatal health in thecontext of an interdisciplinary European project Focus: Preterm and illnewborninfants Method: Work in topic-specific expert groups; about220 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 developmentperiod: 2013 – 2018 Special feature: Activecollaborationof different stakeholders Next steps: National implementationofthe standards Project website: www.newborn-health-standards.org