european newborn health standards a unique project lead by ......euro-peristat project. european...
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Dr. Johanna Walz, Head of Scientific Affairs,
European Foundation for the Care of Newborn Infants
21 March 2019
European newborn health standards –
a unique project lead by parents
EFCNI – a strong network for maternal and newborn health
A strong partnership with…
• >100 national parent / patient
organisations worldwide
• >20 global healthcare societies
• >30 European healthcare societies
• >80 national healthcare societies
• Supranational organisations
(WHO, …)
• European institutions (EU
parliament, commission, EMA,…)
• G7 preparation-meetings
• First pan-European organisation to represent the
interests of preterm and ill newborn infants and
their families
• Combine forces of parents, healthcare experts,
scientists reducing preterm birth rates and
improving outcomes
• Fields of activities
• Preconception and maternal care
• Treatment and care
• Continuing care
European newborn health standards –
a unique project lead by parents
1. Why European standards?
2. The development process and content of the standards
3. What will come next?
Big differences in the care of preterm infants in Europe
In terms of:
• Preterm rates
• Mortality and morbidity rates
• Care and treatment practices
• Involvement of parents
Lack of:
• National programmes
• Harmonised standards of care
• Standards in research
Euro-Peristat Project. European Perinatal Health Report. Core indicators of the health and care of pregnant women and babies in
Europe in 2015. November 2018. Available www.europeristat.com
Early and late neonatal mortality rates at and after 22 weeks of gestations in 2015
European newborn health standards –
a unique project lead by parents
1. Why European standards?
2. The development process and content of the standards
3. What will come next?
Start of the project in the European Parliament
• Official kick-off on the 7th of April 2014 in the EU parliament in Brussels
• Symbolic signing of the cooperation and participation in the project of
politicians, presidents of various societies and parent representatives
European Standards of Care for Newborn Health - from theory…to practice
Project
Development of
European “reference“
standards
„Health is a country issue.“
Implementation of
standards needs to be on a
national level
Need “translation” before they can
be implemented on a national
level
Translation:
• Set up of the health system
• Specific country situation
• National requirements for standards
Development process of the standards
36 members 220 authors
Peer review process Approval by chairs
Chairs voted on every
single standard
separately
Support by >150
organisations
Now it‘s time
to act!
Structure of the standards
96 standards, online available via:
https://newborn-health-standards.org/
Neonatal care – devided into 11 areas = 11 Topic Expert Groups (TEGs)
Prof Dieter Wolke,
UK/Germany
Dr Aleid van
Wassenaer-Leemhuis,
The Netherlands
Example: TEG Follow-up and continuing care, 15 standards
https://newborn-health-standards.org/
Example: TEG Follow-up and continuing care, 15 standards
• Hearing screening (before 1 m)
• Visual assessment with focus on visual
information processing dysfunctions (by
3,5-4 y, repeated by 5-6 y)
• Cardiometabolic risk factors are monitored
(until adulthood)
• Screening of parental mental health (6 m &
2 y after discharge)
• School readiness assessment; teachers
receive training about potential special
educational needs (6-12 m prior to school)
In the first 2
years,
repeated at
transition to
school
During
follow-up
Around
discharge
• Comprehensive discharge management plan
• Comprehensive and integrated care after
discharge
• Preventive responsive parenting support
• Assessment of neurological status and motor
development
• Behaviour, emotional and attention problems
• Communication, speech, and language
development
• Cognitive assessment
• Peer and sibling relationships
• Respiratory health
• Counselling of parents about risk of recurrence
What has been achieved so far?
Development of 96 standards together with 220 experts from more than 30
countries
https://newborn-health-standards.org/
Support of 108 international and national healthcare professional societies
What has been achieved so far?
Support of 50 parent organisations
Dräger was a project partner from 2013 to 2015
Shire was a project partner from 2014 to 2018
Industry partners:
What has been achieved so far?
Target group and media-effective launch of the standards in Brussels – 11.2018
• Afternoon session in the
European Parliament
• Evening event in the Bavarian
representation
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 (2018)
• Several national publications
What has been achieved so far?
European newborn health standards –
a unique project lead by parents
1. Why European standards?
2. The development process and content of the standards
3. What will come next?
Development process of the standards
Now it‘s
time to act!
Make an impact – foster a change of mind, planned next steps
• 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 jENS 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
Join us and support the implementation of the standards!
https://newborn-health-standards.org/
Belgian experts already involved in the project:
• Delphine Druart
• Prof Dominique Haumont
• Prof Els Ortibus
• Dr Inge Tency
• Yannic Verhaest
• Prof Luc Zimmermann
Thank you for your attention!
EFCNI
European Foundation
for the Care of
Newborn Infants
Chairwoman of the Executive Board: Silke Mader
Hofmannstraße 7A
D-81379 Munich, Germany
Tel: +49 (0)89 / 89083260
Fax: +49 (0)89/ 890832610
E-mail: [email protected]
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