European benchmarking report

A child’s risk of dying is highest in the first month of life - a time when safe childbirth and effective neonatal care are essential to their survival. Four million neonatal deaths occur every year around the world – that is 450 every hour.  Prematurity - a baby born before 37 weeks of gestation - is the single, major cause associated with infant mortality and morbidity in both developed and developing countries. In Europe, the prevalence rate of premature birth ranges from 5.5 to 11.4% - an average of 7.1% of all live births.

The EU Benchmarking Report, presented for the first time in the European Parliament on 6th May 2010 in Brussels, and updated in November 2011 with the inclusion of Ireland into the comparison, provides a compelling picture of the impact on prematurity across 14 European countries. It reveals a troubling lack of coordinated national and European policy initiatives to improve the quality of treatment and care of preterm infants. Such care would help to reduce both the number of preterm babies and to prevent long-term complications. In publishing this report, EFCNI has one clear objective: to give a voice to one of Europe’s most vulnerable, yet overlooked patient groups - preterm infants.

Download here the report "Too little, too late? Why Europe should do more for preterm infants".

Download here the report "Country Highlights", a summary of the findings for the individual countries.

Download here the Irish Benchmarking report.

Download here the German translation of selected parts of the report.

Download here the Italian translation of selected parts of the report.

Download here the Spanish Benchmarking report.

Methodology - structure and scope

Based on desk research and interviews with healthcare authorities, doctors, nurses and parent associations, the report provides statistics, policies and trends in 14 European countries chosen as a representative cross-section of EU member states. These include the following countries:

Austria, Belgium, Czech Republic, Denmark, France, Germany, Italy, Ireland, Netherlands, Poland, Portugal, Spain, Sweden and United Kingdom.

For each country, the report aims to assess the following areas of relevance to prematurity:

i) Prevalence and cost
ii) Government health policy agenda (general)
iii) Neonatal health policy
iv) Prevention and screening
v) Medical treatment and care, after-care and long-term care
vi) Social and financial support
vii) 
Outlook and planned activities

Editorial Board

An editorial board of ten neonatology and gynaecology experts oversaw the quality of the report’s content and endorsed the EFCNI policy recommendations. 

Matthias Keller
EFCNI Foundation Board, Department of Pediatrics, University Essen

Hugo Lagercrantz
Karolinska Institutet, Astrid Lindgren Children´s Hospital, Stockholm, Sweden

Mario Merialdi
Department of Reproductive Health and Research, World Health Organisation, Geneva, Switzerland

Ola D Saugstad
Department of Pediatric Research, Oslo University Hospital, Rikshospitalet, University of Oslo, Norway

The board was led by Dr. Matthias Keller and Prof. Dr. Hugo Lagercrantz and  supported by Prof. Dr. Ursula Felderhoff-Mueser, Prof. Dr. Olaf Dammann, Prof. Dr. Neil Marlow, Prof. Dr. Petra Hüppi, Prof. Dr. Giuseppe Buonocore, Prof. Dr. Christian Poets, Prof. Dr. Georg Simbruner, Prof. Dr. Hercilia Guimaraes and Silke Mader

 

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Key findings

There is currently no single source of up-to-date, comparable European data on the prevalence, mortality and morbidity associated with preterm births.

Official national sources of information about preterm birth do not appear to be available to decision-makers in a number of countries to support the development of neonatal policies

Data on preterm birth, including risk factors, management and outcomes of neonatal healthcare is not collected and analysed consistently across EU member states - reliable statistics are scarce and, where they do exist, are often inconsistent

Even in the absence of rigorous data collection, available data suggest a clear trend of increasing prevalence of preterm births in all of the EU countries (with the exception of Sweden).

Existing data also highlight considerable inequalities in the preterm birth rates in European countries, with wide variations both between and within countries.

Data collection systems are often voluntary resulting in significant variation in the level of detail, the indicators used (e.g. different weekly categories v. weight), the definition of the indicators themselves and the definition of prematurity.

With regard to costs, there is an absence of reliable and comprehensive cost data in countries demonstrating the health-economic impact of prematurity (with the exception of Denmark).

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European data

Prevalence of preterm birth varies across the 14 countries covered by the report from 5.5 % in Ireland  to 11.4% in Austria representing an average 7.1% for the region. It also shows that the number of preterm births is rising. For example, in Portugal prematurity increased by 32% over the period 2004 to 2008 (from 6.8% in 2004 to 9.0% in 2008); Austria saw a similar rise from 8.1% in 1991 to 11.1% in 2008 and Spain registered an increase in the number of preterm infants from 17,000 in 1997 to 40,281 cases in 2007. In the UK the number of extremely preterm births rose by 30% between 1995 and 2006.

A decreasing mortality rate among preterm infants is observed in most European countries.

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Prevalence and cost

The statistical data collected from the 13 European countries demonstrate the significant and growing prevalence and cost of prematurity in Europe. While much of the data is not easily comparable, due to the different reporting mechanisms and methodologies, there is still a clear indication of the size and growth of this extremely vulnerable patient group as well as the short and long term financial burden it represents to European economies.

According to the 2008 European Perinatal Health Report, which is based on data from 2004, as well as statistics collected from national sources, the following observations can be made:

According to data from 2004, preterm birth rates in the 14 European countries range from 5.5% (Ireland) to 11.4% (Austria). At least 8 of the 14 European countries have preterm birth rates of 7% and above. The lowest preterm birth rates can be observed in countries such as Ireland, Sweden, France and Portugal, although these still account for over 5% of live births. In the last five years, there has been a considerable increase in preterm births – for example, in Portugal, the rate has risen from 6.8% in 2004 to 9.0% in 2008 – an increase of 32%. Very preterm births (births before 32 weeks of gestational age) are estimated to account for approximately 1% of all live births.

A decreasing mortality rate among preterm infants is observed in most European countries. Some countries have begun to improve data collection to assess the health risks and implications of prematurity in the short and longer term (e.g. Czech Republic, Netherlands, Sweden, UK). A few countries have also put in place structured programmes to evaluate the quality of neonatal healthcare services (e.g. Sweden, UK).  Underneath is an overview of key findings prevalence and costs:

  1. There is currently no single source of up-to-date, comparable European data on the prevalence, mortality and morbidity associated with premature births.
  2. Official national sources of prematurity data do not appear to be available to decision-makers in a number of countries to support the development of neonatal policies.
  3. Data on prematurity including risk factors, management and outcomes of neonatal healthcare is not collected and analysed consistently across EU member states - reliable statistics are scarce and, where they do exist, are often inconsistent.
  4. Even in the absence of rigorous data collection, available data suggest a clear trend of increasing prevalence of premature births in all of the EU countries (with the exception of Sweden).
  5. Existing data also highlight considerable inequalities in the preterm birth rates in European countries, with wide variations both between and within countries.
  6. Data collection systems are often voluntary resulting in significant variation in the level of detail, the indicators used (e.g. different weekly categories v. weight), the definition of the indicators themselves and the definition of prematurity.

With regard to costs, there is an absence of reliable and comprehensive cost data in countries demonstrating the health-economic impact of prematurity (with the exception of Denmark).

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Policies on prematurity

While the available data suggest a considerable and growing number of preterm births across the European region, there is, nevertheless, a notable absence of targeted national policies aimed at reducing the prevalence and improving the health outcomes associated with prematurity. There are currently only two countries in Europe with a targeted national policy for neonatal health and premature infants (Portugal and UK). Several countries have general national plans for maternal and infant health, although they contain no specific provisions for premature infants (, e.g. Spain). A number of countries have no dedicated maternal, infant or neonatal health program in place (Austria, Germany, Sweden).  

Neonatal and premature infant health currently ranks low on the political agendas of EU member states – very few countries have targeted policies focused on premature infants. Instead, there is a relatively fragmented approach to policies on premature birth. In this respect, preterm birth remains a secondary priority for action. In some countries e.g. UK, Spain, Czech Republic, current economic pressures are considered to be a key factor influencing the future development and effective implementation of neonatal health policies. In some cases, the reluctance of policy makers to make premature infant health a priority can be partly attributed to a fear of costly interventions and the diversion of funds from other maternal and perinatal health problems.

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Prevention and screening

With regard to the prevention of prematurity, our research also revealed an absence of national policies and programs targeted at pregnant mothers at risk of premature birth. Prevention programs targeted specifically at premature birth are generally voluntary and are not consistently organized in each country. Programs are often dependent on hospital guidelines or on the individual practice of healthcare professionals. Education and awareness campaigns are implemented in some countries by parent associations and public authorities. However their scope and impact remain rather limited. There is a general lack of information to parents about the risk factors, warning symptoms and/or recommended lifestyles to prevent premature births.

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Medical treatment and care

Care for premature infants is frequently organised at different levels without a common definition of the expertise and particular healthcare interventions that should exist at every level. A number of initiatives have been implemented in several countries to promote the specialisation of the care provided by neonatal units, while this is also considered to pose a challenge in ensuring equal access to specialised care and safe transfers when needed. Quality control and management programs to ensure high standards of quality in neonatal services remain very limited. When data exist, comparability remains very difficult The need for specialised training of doctors and nurses and for increased multidisciplinary staffing for neonatal units, including psychologists and social workers to provide support to parents, is highlighted as an urgent need by parents and professionals in a number of countries including Germany, Spain, France and the UK. More consistent guidelines, specialised training for professionals and financial resources to ensure effective and wide follow up are demanded by both parents and professionals in all EU member states.

Follow-up is not organised in a structured manner for all premature children. Some countries have organised follow up checks for very premature infants, while structured follow up for other premature infants appears to be infrequent and, in most cases, inexistent.

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Parental involvement and education

Family-centred care is widely recognised a key objective in all countries. However, insufficient resources mean that widespread implementation is limited as it requires investment in capacity and staff training.  Policies towards parents and family in NICUs have improved over recent years, although there still appears to be a number of barriers, particularly in some southern European countries.

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Financial & Social Support

Overall, social policies aimed at protecting premature infants and their families are also lacking in the majority of EU member states. In general, there is no specific social and/or financial support provided to families with a premature infant, unless the child has been recognised as having a specific disability (with Spain being an exception to some extent). Awareness about the existing support schemes is proven to be very poor amongst the general population. Very few countries have put in place services aimed at providing guidance and orientation to parents. The level of access to support services is often associated to the education level and the socio-economic context of the family.  Selected countries offer an extended period of maternity and/or parental leave to the families of premature infants; however the majority offer no additional benefits on top of the standard period of leave.

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Outlook and planned activities

Very few countries are reported to be planning new policy initiatives in the area of premature infant and neonatal health in the coming months. Neonatal stakeholders view the situation quite negatively and are not optimistic about the prospect of significant changes in the near future.

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Summary and conclusion

Based on findings of the report important issues to be considered for policies at EU and  national  levels  can be deduced. The European Union should:

  1. Recognise the growing challenge of prematurity in Europe and its significant impact on infant morbidity and mortality and acknowledge the health and social inequalities linked to prematurity which exist across the EU’s member states. Premature infant health is currently absent in the development of EU health and social policies - a surprising observation given the significant and rising prevalence of preterm births and related health complications in Europe.
  2. Demonstrate the EU’s commitment to improving neonatal health through the development and implementation of coordinated EU health and social policies. The EU has an essential role to play in raising neonatal health standards across Europe. While respecting member state responsibility for healthcare delivery, the EU should contribute through the development of targeted health and social policies, by providing a forum for the sharing of best practice among countries and supporting the development and implementation of national neonatal policies. 
  3. Address the lack of comparable European data on prematurity, including prevalence, mortality, acute morbidity, long-term impairment, healthcare service management and health outcomes and support the creation and strengthening of data collection systems with common measurement criteria. Reliable epidemiology and quality outcomes data, are necessary to develop meaningful, evidence-based health policies at EU level and to support complementary efforts at the national level. While there have been attempts to create independent European networks with the aim of improving data collection, such initiatives remain limited and require improved coordination as well as more sustainable, long-term funding and a broader scope in order to make a real impact.
  4. Increase the standard of neonatal care across Europe by supporting the development and implementation of a European medical guideline and quality standard for the prevention, treatment and long-term care of premature infants. As evidenced by the results of our research documented in this report, the policies and practices in place for the prevention, treatment and long-term care of premature infants vary considerably across Europe, with a considerable impact on the quality of care, health and social outcomes.
  5. Prioritise and allocate EU funding to promote coordinated European neonatal and perinatal research to improve the prevention, treatment, care and outcomes of preterm births and support the establishment of European research centers and networks. In longer-term, the 8th Framework Program should include perinatology and neonatology as a key priority area for future EU-funded health research. 
  6. Support the development of a European postgraduate training program in Peri- and Neonatology in order to increase the quality and availability of trained healthcare professionals. In the majority of EU member states, there is a shortage of trained neonatal healthcare and research professionals (specialised nurses and doctors, as well as scientists) to meet the specific needs of a growing number of preterm births.

The high global neonatal mortality represents one of the most burning human right issues in our time. Also in Europe neonatal mortality can be further reduced. We know how to do it. The present report may contribute in this effort by reducing prematurity one of the major factors contributing to neonatal death.

The EU Benchmarking Report 2009/2010 is supported by an educational grant from Abbott.

 
© 2018 EFCNI - European Foundation for the Care of Newborn Infants
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