EUROPEAN PERINATAL HEALTH REPORT better statistics for better health for pregnant women and their babies THE FORMAT OF THIS REPORT This report presents the EURO-PERISTAT perinatal health indicators from 25 participating EU member states and Norway as well as data from three other European projects on perinatal health (SCPE, EUROCAT, and EURONEOSTAT). It is organised into two parts. The first is a narrative section, in which the EURO-PERISTAT indicators are described along with summary tables and graphs. The contributions of the three other projects are included here. The second section consists of complete data tables on the EURO-PERISTAT indicators. The order of countries in this report follows guidelines established by the European Union. Countries are listed alphabetically following their official names in their own languages (http://publications.europa.eu/code/en/en-370100.htm) The EURO-PERISTAT indicators are presented by theme in the narrative section of this report: Characteristics of the childbearing population Health services Maternal health Fetal and neonatal health. Within each chapter, core indicators are presented before recommended indicators. In the data tables (Appendix B) all core indicators are presented first, followed by recommended indicators. EUROPEAN PERINATAL HEALTH REPORT by the EURO-PERISTAT project in collaboration with SCPE, EUROCAT & EURONEOSTAT Data from 2004 EURO-PERISTAT Project, with SCPE, EUROCAT, EURONEOSTAT. European Perinatal Health Report. 2008. Available: www.europeristat.com 1 EUROPEAN PERINATAL HEALTH REPORT TABLE OF CONTENTS Abbreviations and acronyms 8 1 EXECUTIVE SUMMARY: HEALTH AND CARE OF PREGNANT WOMEN AND BABIES IN EUROPE 9 2 SURVEILLANCE OF PERINATAL HEALTH IN EUROPE 17 2.1 Why monitor perinatal health in Europe? 18 2.2 Perinatal health indicators for Europe: The EURO-PERISTAT project 19 2.3 Other European perinatal health projects 21 2.4 Conclusions: advantages of building information systems at the European level 23 3 DATA SOURCES FOR PERINATAL HEALTH MONITORING IN EUROPE 27 3.1 EURO-PERISTAT data collection 28 3.2 Data sources 28 3.3 Data availability 32 3.4 Questions complicating international comparisons 33 3.5 Conclusions and recommendations for improving health reporting 35 4 CHARACTERISTICS OF CHILDBEARING WOMEN 41 4.1 Multiple births 43 4.2 Maternal age 46 4.3 Parity 49 4.4 Smoking during pregnancy 51 4.5 Mother’s educational level 53 4.6 Mother’s country of origin 57 5 THE CARE OF WOMEN AND BABIES DURING PREGNANCY AND THE POSTPARTUM PERIOD 61 5.1 Mode of delivery 63 5.2 Pregnancies following infertility management 68 5.3 First antenatal visit 71 5.4 Mode of onset of labour 74 5.5 Place of birth 77 5.6 Breast feeding at birth 80 5.7 Very preterm births delivered in units without a NICU 83 5.8 Positive outcomes of pregnancy: birth without obstetric intervention 86 5.9 State of the perineum 89 6 MOTHERS' HEALTH: MORTALITY AND MORBIDITY ASSOCIATED WITH CHILDBEARING 93 6.1 Maternal mortality ratios 95 6.2 Causes of maternal death 101 6.3 Severe maternal morbidity 105 2 7 BABIES’ HEALTH: MORTALITY AND MORBIDITY DURING PREGNANCY AND IN THE FIRST YEAR OF LIFE 109 7.1 Fetal mortality rate 111 7.2 Neonatal mortality rate 117 7.3 Infant mortality rate 122 7.4 Birthweight distribution 125 7.5 Gestational age distribution 129 7.6 Five-minute Apgar score 133 7.7 Deaths due to congenital anomalies 136 8 CEREBRAL PALSY, SCPE NETWORK 141 8.1 Methods and achievements of the SCPE network 142 8.2 CP prevalence rates and EURO-PERISTAT perinatal indicators 146 8.3 Trends among children at higher risk of CP 153 8.4 Conclusion 159 9 CONGENITAL ANOMALIES: EUROCAT 163 9.1 Introduction 164 9.2 Epidemiologic surveillance of congenital anomalies 164 9.3 Population coverage by EUROCAT and EURO-PERISTAT 165 9.4 Prevalence of congenital anomalies in Europe 168 9.5 Termination of pregnancy for fetal anomaly 173 9.6 Fetal and neonatal mortality associated with congenital anomaly 175 9.7 Infant survivors 179 9.8 Data developments 179 9.9 The Future 179 10 VERY LOW BIRTHWEIGHT AND GESTATIONAL AGE BABIES IN EUROPE: EURONEOSTAT 183 10.1 Introduction 184 10.2 Data collection and analysis 186 10.3 Results 187 10.4 Health services provided to VLBW/VLGA newborn infants. 193 10.5 Comments 194 APPENDICES APPENDIX A1: CONTRIBUTORS TO THE EURO-PERISTAT PROJECT 204 APPENDIX A2: CONTRIBUTORS FROM EUROCAT, SCPE, AND EURONEOSTAT 208 APPENDIX B: DATA TABLES ON EURO-PERISTAT CORE AND RECOMMENDED INDICATORS 211 APPENDIX C: DATA SOURCES FOR EURO-PERISTAT CORE AND RECOMMENDED INDICATORS 267 LIST OF APPENDIX TABLES 279 EUROPEAN PERINATAL HEALTH REPORT 3 EUROPEAN PERINATAL HEALTH REPORT AUTHORS AND ACKNOWLEDGEMENTS REPORT COORDINATORS Jennifer Zeitlin (INSERM, France) Ashna Mohangoo (TNO Quality of Life, the Netherlands). WRITING COMMITTEE FOR CHAPTERS 1 TO 7 Sophie Alexander Henrique Barros Béatrice Blondel Marie-Hélène Bouvier-Colle Simone Buitendijk Christine Cans Sophia Correia Mika Gissler Alison Macfarlane* Ashna Mohangoo*ˆ Živa Novak-Antolic Jennifer Zeitlin* Wei Hong Zhang Meagan Zimbeck * Editorial Supervision AUTHORS OF CHAPTER 8 ON CEREBRAL PALSY AND SCPE Christine Cans, Jenny Kurinczuk, Marie-Ange Mermet, Sylvie Rey, Geraldine Surman, Torstein Vik on behalf of the SCPE collaborative group (Appendix A2) AUTHORS OF CHAPTER 9 ON CONGENITAL ANOMALIES AND EUROCAT Helen Dolk, Maria Loane, Lorentz Irgens and a EUROCAT Working Group (Appendix A2). AUTHORS OF CHAPTER 10 ON THE CARE AND OUTCOME OF VERY LOW BIRTH WEIGHT BABIES AND EURONEOSTAT Adolf Valls-i-Soler, José I Pijoán, Marina Cuttini, Javier de la Cruz, Carmen R Pallás, Michael Weindling, Henry L Halliday, Carlo Corchia, Mikko Hallman, Virgilio Carnielli, Olivier Claris, Helmut Hummler Diego Rada and Agueda Azpeitia, on behalf of the EuroNeoStat Consortium (Appendix A2). EURO-PERISTAT STEERING COMMITTEE Jennifer Zeitlin (Scientific Coordinator) Gérard Bréart (Project Leader) Meagan Zimbeck (Project Coordinator) Sophie Alexander Henrique Barros István Berbik Béatrice Blondel Marie-Hélène Bouvier Colle Simone Buitendijk Christine Cans Mika Gissler Alison Macfarlane Ashna Mohangooˆ Živa Novak-Antolic 4 EURO-PERISTAT SCIENTIFIC COMMITTEE (CONTACT INFORMATION IN APPENDIX A1) Austria: Christian Vutuc Belgium: Sophie Alexander Cyprus: Pavlos Pavlou Czech Republic: Petr Velebil Denmark: Jens Langhoff Roos Estonia: Luule Sakkeus Finland: Mika Gissler France: Béatrice Blondel France: (SCPE leader) Christine Cans Germany: Nicholas Lack Greece: Aris Antlaklis Hungary: István Berbik Ireland: Sheelagh Bonham Ireland: (SCPE partner) Pat Beirn Italy: Marina Cuttini Latvia: Jautrite Karaskevica Lithuania: Aldona Gaizauskiene Lithuania: (SCPE partner) Audrone Prasauskiene Luxembourg: Yolande Wagener Malta: Miriam Gatt Netherlands: Jan Nijhuis Norway: Lorentz Irgens Poland: Katarzyna Szamotulska Portugal: Henrique Barros Slovak Republic: Ján Cap ˆ Slovenia: Živa Novak-Antolic Spain: Francisco Bolúmar Sweden: Gunilla Lindmark United Kingdom: Alison Macfarlane DATA PROVIDERS AND OTHER CONTRIBUTORS (LISTED IN APPENDIX A1) This report would not have been possible without the time and effort of data providers who produced data for this report and reviewed and commented on the tables and manuscript. DATA COLLECTION TNO Quality of Life, in the Netherands was responsible for data collection, management, and analysis. Data analysis: Ashna Mohangoo Data collection and management: Sabine Anthony, Ashna Mohangoo and Ab Rijpstra PROJECT COORDINATION The EURO-PERISTAT project was coordinated by Assistance Publique-Hôpitaux de Paris (AP-HP), Paris. FINANCING The EURO-PERISTAT project is cofinanced by the Public Health Programme of the European Commission's Directorate General of Public Health and Consumer Protection, which also provides funding for SCPE, EUROCAT, and EURONEOSTAT. Editing support was provided by JoAnn Cahn. EUROPEAN PERINATAL HEALTH REPORT 5 EUROPEAN PERINATAL HEALTH REPORT LIST OF TABLES Table 2.1 EURO-PERISTAT indicators (C=core, R=recommended, F=further development) 20 Table 3.1 Lower limits for registration of stillbirths and live births 40 Table 4.1 Estimates of proportion of women smoking during pregnancy in routine data sources and according to period for which data are collected 53 Table 4.2 Data collected on mothers’ national origin and proportion of women with live or stillbirths who were of foreign origin defined by country of birth (or foreign nationality or ethnicity or lack of permanent residence status) 59 Table 5.1 Percentage of pregnant women by timing of first antenatal visit 73 Table 5.2 Existence of “level of care” classifications for maternity units and percent of very preterm babies born in the most specialised units 83 Table 6.1 Maternal mortality ratio (numbers and ratios per 100 000 live births) in 2003-2004 98 Table 6.2 Maternal mortality ratios by mode of delivery. 100 Table 6.3 Distribution of maternal deaths according to obstetric causes (in %) by country, in 2003-2004 103 Table 6.4 Severe maternal morbidity rates 107 Table 8.1 Live births in areas covered by SCPE network registries 146 Table 8.2 Specific neonatal mortality rate by BW group per 1000 live births, 1990-1998 147 Table 8.3 Multiple birth rates and percentages of very low and low birth weights among multiple births 1990-1998 148 Table 8.4 Distribution of maternal age in birth years 1997-1998 149 Table 8.5 Distribution of births by size of maternity unit (recommended indicator) in 1997-1998 149 Table 8.6 Registries with data from SCPE database for 1990-1998 150 Table 8.7 Other registries