Responding to the need of indicators on perinatal health

Perinatal, infant and maternal mortality rates are among the most commonly used indicators of population health status. Perinatal health problems affect young people - babies and adults starting families – and, as such, have long term consequences. Impairments associated with perinatal events represent a long-term burden for children and their families as well as for health and social services. It is increasingly understood that a healthy pregnancy and infancy reduce the risk of common adult illnesses, such as hypertension and diabetes. This life-course approach to our health begins at conception – or perhaps before – and suggests that better management of the major morbidities associated with pregnancy, such as intrauterine growth restriction or preterm birth, may reap large dividends in overall population health.

In order to have a better surveillance of such factors, the European Commission has launched in 2001 the project PERISTAT - Indicators for monitoring and evaluating perinatal health in Europe coordinated by the INSERM (France). PERISTAT's overall project aim was to develop valid and reliable indicators for monitoring and evaluating perinatal health in the European Union. Perinatal indicators include measures of maternal, foetal and infant health during pregnancy, delivery and the post-partum period and their determinants. Civil registers, birth registers, surveys, hospital discharge data and condition specific registries are the main sources of collection of data.

This general objective consisted of four specific objectives:

1. Definition of relevant measures of perinatal health and the determinants of perinatal health;
2. Development of methods, definitions and guidelines for the construction and publication of reliable and comparable indicators;
3. Assessment of the extent to which existing data collection systems could be used to construct reliable perinatal health indicators; and
4. Creation of a data base containing perinatal health indicators currently available for EU member states

The PERISTAT project was successful in identifying a set of indicators, which drew on and consolidated previous work. A second phase EURO-PERISTAT 2 - A comprehensive health information and knowledge system for evaluating and monitoring perinatal health in Europe (Phase 2) was selected for funding in 2005 having four principal objectives:

1. Expand and adapt the PERISTAT indicators to the new Member States;
2. Establish new indicators for four themes identified for further development by PERISTAT;
3. Develop methods for compiling high quality indicators and use them to collect data from member states and new member states;
4. Design a reporting methodology to target key audiences, and use it to produce a comprehensive report on reproductive health in the perinatal period with data from the most recent period.

For more information, see web site of the PERISTAT - Indicators for monitoring and evaluating perinatal health in Europe Project.

Building on the work of the PERISTAT Projects, the Commission has selected for funding in 2007 a project for a European Report Better Statistics for Better Health for Pregnant Women and Their Babies: European Health Reports coordinated by Assistance Publique-Hôpitaux de Paris (France). This report will be the first to collect data from 2006 in all EU countries including policy-relevant analyses of maternal and child health outcomes, care provision, inequalities and migrant health and to develop an Action Plan for Sustainable Perinatal Health Reporting with recommendations about the mission, structure, operation and partners of an information network.

Prematurity, that is birth before the 37th completed week of gestation, is also a significant health problem in the EU and its prevalence is increasing, as is the rate of Very-Low-Birth-Weight (VLBW) infants. Those very immature babies, of less than 32 completed weeks of gestation and of a birth weight of less than 1 500 grams, have an increased risk for short- and long-term morbidity and mortality, and their care consumes a large and growing amount of health resources. In spite of this, no systematic recording of short and long-term morbidity data for immature infants exists at a European level. Networking is an effective way to assess quality-of-care of VLBW, promote research and disseminate health information.

In order to have a better surveillance of such problems, the European Commission has launched in 2005 the project EURONEOSTAT - European Information System to Monitor Short and Long-Term Morbidity to Improve Quality of Care and Patient-Safety for Very-Low-Birth-Weight Infants coordinated by the Fundación Vasca de Innovación e Investigación Sanitarias (Bizkaia, Spain). This project aims to develop an information system to assess quality of health care delivered to very premature infants in different units, regions and EU countries. This could contribute to improve the health status of those high-risk infants, and detect any outcome inequalities that might exist. For this the project will:

1. create and validate a set of neonatal indicators to evaluate the specific rates of neonatal and post-neonatal mobility;
2. test the hypothesis that gestational age is a better indication of short- and long-term risks than birth weight;
3. use specific health indicators given by participating units for benchmarking to identify areas with opportunities to improve quality-of-care, and monitor their success, in selected areas, they will perform inter-regional comparisons to identify outcomes affected by variability of clinical practices and health delivery systems;
4. develop and validate a minimal follow-up dataset to assess the quality of life at 24 months, and an expanded questionnaire to be tested at selected institutions or regions;
5. assess the predictive value of perinatal indicators for the health status at 24 months; and develop software and tools to collect, transfer, validate, standardise and compare the perinatal and follow-up data collected, using up-to-date ICT.

See web site of the EURONEOSTAT - European Information System to Monitor Short and Long-Term Morbidity to Improve Quality of Care and Patient-Safety for Very-Low-Birth-Weight Infants Project.

Indicators on perinatal health

The core indicators in the PERISTAT set are defined as those essential to monitoring perinatal health, and recommended indicators are those considered desirable for a more complete picture of perinatal health across the Member States. Included among the twenty-three recommended indicators are twelve that have been identified for further development. These indicators represent important aspects of perinatal health, but further work is required before they can be operationalised in the Member States.

See list of indicators and definitions on The PERISTAT working list of indicators

The Major and Chronic diseases in the European Union - Report 2007(4 MB) is a report coordinated by the DG SANCO Task Force of Major and Chronic Diseases. It describes the work done by Public Health Programme projects and EU bodies to improve information on major and chronic diseases. The Chapter on Maternal and Child Health is divided in two parts Maternal and Perinatal health and Very low gestational age and very low birth weight infants and presents relevant data on perinatal health indicators.

Population characteristics and risk factors

The relationship of maternal age to perinatal health outcomes is U-shaped, with the strongest impacts of maternal age on perinatal health being at the extremes of the maternal age distribution. For young mothers the increased risks of perinatal mortality are associated with social and health care factors, including lack on antenatal care, unwanted or hidden pregnancies, poor nutrition and lower social status. In a large number of EU countries, births to young mothers constitute only between 1.5% and 8% of all births. In others, principally countries that have recently joined the EU, these represent a greater proportion of all births (between 10% and 21%).

Differences between the newer and older Member States are also apparent with respect to childbearing at older ages. Risks of adverse outcomes increase from approximately 35 years of age. There is a trend towards later childbearing in the 15 older Member States, while this trend is so far less evident in the new Member States.

Smoking among women of childbearing age varies substantially across EU from 15% to over 40%. This information is not sufficient for monitoring the impact of smoking on perinatal outcomes, however, because many women stop smoking during pregnancy. Failure to collect these data at a national level in many countries may undermine the generalisation of smoking cessation programmes.

See Mean age of women at childbearing - Eurostat
See Live births by mother's age at last birthday- mothers with less than 19 years- Eurostat(70 KB)
See Rate of smoking among women 25-34 years & women smoking in 3rd trimester of pregnancy for selected countries(79 KB)

Infant mortality and morbidity

There has been a significant decline in the rate of neonatal mortality in the last thirty years. Data are collected by Eurostat and are available on infant mortality, causes of infant deaths as well as low birth weight, but some caution in interpretation is necessary. The infant mortality rate represents the ratio between deaths of children under one year and the number of live births in a given year. Countries, however, use different definitions for spontaneous abortion, early foetal death and late foetal death (or still-birth). A still-birth for example is, generally speaking, the product of a birth that shows no signs of life during and after the whole process of being born. But countries require different lengths of pregnancy to distinguish between early and late foetal deaths (ranging from 21 to 28 weeks). Some countries even require a certain minimum foetal length (varying between 25 and 35 centimeters), some a certain minimum weight (500 or 1,000 grams). Differences of definition lead to variations in the measurement of perinatal mortality.

See Infant mortality per 1,000 live births – Eurostat(71 KB)
See Neonatal mortality rate – Eurostat(70 KB)
See Early neonatal mortality rate – Eurostat(70 KB)
See Late foetal mortality rate – Eurostat(71 KB)
See Perinatal mortality rate – Eurostat(70 KB)
See Infant mortality by main cause of death in the EU countries & Norway(68 KB)

WHO collects data on the number of births within each 500g weight interval expressed as a proportion of all registered live and still-births. When analysed by gestational age, birth weight distributions provide an indication of growth restriction. Growth restriction is a major complication of pregnancy and is closely related to still-birth, poor neonatal outcome and future health status. Especially where data on gestational age are lacking, birth weight data are of value in their own right and are associated with health in later life.

See Percentage of live-born babies weighting 2 500 grams or more - WHO(18 KB)

Maternal mortality

Maternal mortality is currently the only PERISTAT indicator on maternal outcomes, and is calculated by WHO. The causes of maternal death can be separated into those directly attributed to pregnancy (which include thromboembolism, amniotic fluid embolism, haemorrhage, hypertension, infections/sepsis, and obstetrical complications), and ‘indirect’ causes, such as cardiac and other maternal conditions that are aggravated by pregnancy. The prevalence of “severe” maternal morbidity was defined by the Mothers Mortality and Severe morbidity (MOMS) study, as severe haemorrhage, sepsis and hypertensive disorders of pregnancy, ranged from 0.07-8.23% with a case-fatality ratio ranging from 0.02-37%.

See Maternal deaths per 100,000 live births in the EU countries for years 2003 and 2004 – WHO(75 KB)

Breastfeeding

Breastfeeding is the natural way to feed infants and young children. Breast milk alone provides all the nutrients an infant requires to grow well until about six months: carbohydrates, protein, fat, vitamins, minerals, digestive enzymes, hormones and water in a balanced mix. After the age of six months, breastfeeding, with appropriate complementary foods, continues to contribute to an optimal infant’s and young child’s growth. Breast milk contains antibodies from the mother that help defend the baby against infections. It also contains other substances that limit the growth of or kill harmful germs. Finally, breast milk passes live cells on to the baby that will enhance its defences.

The WHO Global Strategy for Infant and Young Child Feeding recommends that infants be exclusively breastfed for the first six months of life. Thereafter infants should receive nutritionally adequate and safe complementary foods while breastfeeding continues for up to two years of age or beyond. UNICEF, as well as many governments and professional associations, have endorsed and adopted the WHO recommendations. Exclusive breastfeeding for the first six months and subsequently breastfeeding with appropriate complementary foods secure optimal infants and young child’s growth, development and health.

See Breastfeeding - EUPHIX (European Union Public Health Information System)
See Figures, underlying data and maps on breastfeeding - EUPHIX (European Union Public Health Information System)
See Eurobarometer 59.0, December 2003 - European Commission(2 MB)

Vaccine-preventable diseases

Childhood vaccination is a classical prevention strategy which should be in place to ensure effective protection. In most countries the vaccination strategy includes vaccination against diphtheria, pertussis, tetanus, poliomyelitis, Hib, measles, mumps and rubella. Not all countries implement vaccination against tuberculosis and hepatitis B on a systematic basis.

See Figures, underlying data and maps on childhood vaccination - EUPHIX (European Union Public Health Information System)
See vaccine-preventable diseases - WHO
See European survey of BCG vaccination policies and surveillance in children, 2005 - Eurosurveillance
See Programme on vaccine preventable diseases – ECDC (European Centre for Disease Control)

Specific indicators on Very Low Gestational Age and Very Low Birth Weight infants

It is estimated that over 2 million Very-Low-Birth-Weight (VLBW) infants are born every year world-wide, and prevalence of prematurity is rising everywhere including most European countries, despite efforts to prevent it. One possible cause is the increased number of twin pregnancies, related to increasing maternal age and accessibility to assisted reproduction techniques. Moreover, increasing survival probabilities may lead to an increasing number of Very-Low-Gestational-Age (VLGA) babies to be considered “live-births”, rather than still-births. European health care systems are not uniform but all Member States offer government-paid access to neonatal intensive care units (NICUs), usually adjacent to perinatal centres where these babies are born, thus preventing the need for postnatal transfer of them from hospitals where they are born to neonatal intensive care units (NICUs).

A EURONEOSTAT set of standardised perinatal indicators with uniform definitions of perinatal risk and protective factors, neonatal interventions and significant short-term outcomes has been developed by the EURONEOSTAT Project. A set of indicators to assess health and neurodevelopment status at 24-months was also created by consensus.

The Major and Chronic diseases in the European Union - Report 2007(4 MB) is a report coordinated by the DG SANCO Task Force of Major and Chronic Diseases. It describes the work done by Public Health Programme projects and EU bodies to improve information on major and chronic diseases. The Chapter on Maternal and Child Health is divided in two parts Maternal and Perinatal health and Very low gestational age and very low birth weight infants and presents relevant data on perinatal health indicators.

The EuroNeoStat 2006 cohort of VLGA/VLBW infants included babies from 14 neonatal intensive care units from 10 Member States plus Russia. Mean birth weight (BW) and gestational age (GA) were 1,152 g and 28.7 weeks. The 28-day neonatal mortality rate (NMR) of VLBW/VLGA infants admitted was 10.7% and post-neonatal, pre-discharge mortality 1.8%. Babies dying in the delivery suite represented 3% of all VLBW/VLGA babies born and 20% of all neonatal deaths. Neonatal mortality is highest for those infants who have the lowest birth weight and gestational age. NMR was higher for male than female infants (13.9% vs. 10.6%).

The most important protective factor was prenatal corticosteroid use, being given to 81.4% of all babies. Caesarean section was done in 70.8% of the infant cohort. Rates of complications were: intraventricular haemorrhage grade 3-4 (9.9%), cystic periventricular leukomalacia (3.4%), pneumothorax (3.8%), chronic lung disease (20.8%), necrotising enterocolitis (4.9%), stage 3-5 retinopathy of prematurity (5.9%). While prenatal infection was present in 5.5%, nosocomial infection (or: hospital-acquired infection) was higher at a 25%. At least one major congenital anomaly occurred in 9.5% of all VLBW/VLGA babies.

VLBW/VLGA-specific neonatal mortality rates are associated with overall neonatal mortality, being an excellent indicator of the quality of perinatal care. Their weight-specific mortality rates account for about three quarters of the mortality variance observed among countries and regions.

Perinatal condition specific registries

Cerebral palsy

Cerebral Palsy (CP) is an umbrella term covering different clinical patterns such as unilateral or bilateral spastic, dystonic/choreo-athetotic, or ataxic cerebral palsy sub-types. Clinical symptoms appear during the first years of life, and it is necessary to wait until child is four years old before deciding if the condition is cerebral palsy or not.

The SCPE (Surveillance of Cerebral Palsy in Europe) network started in 1999. It's coordinated by the RHEOP (Registre des handicaps de l'enfant et Observatoire Périnatal de l'Isère, France) and funded by the European Commission (BIOMED2 Programme and, as part of the PERISTAT Project). At present the SCPE includes 24 registers in 13 countries. Most of these registers do not cover the whole country. Cerebral Palsy (CP) is an indicator chosen by PERISTAT for monitoring longer term childhood health impairments, due to its frequent association with adverse perinatal events. It is the commonest disabling condition in childhood; it occurs in 1.5 to 2.5 per 1 000 live births, and the disabling condition is permanent during the life of the affected children.

The prevalence rate of cerebral palsy is 2 per 1,000. Among children born with normal Birth Weight (BW) this rate is around 1 per 1,000, among children born with a BW 1,500 to 2,499g the rate is around 1 per 100, and among children born with a very low birthweight (<1500g) the rate is around 6 per 100. The cerebral palsy rate in VLBW decreased between 1980 to 1996 from 60.6 to 39.5 per 1000 liveborn VLBW infants.

Further work in SCPE will explore the prevalence of cerebral palsy in specific subgroups. It has been already shown that multiple born infants have a four times higher risk of developing cerebral palsy than singletons, mainly related to the higher risk of preterm birth in multiples. More boys are affected by cerebral palsy than girls, this difference has to be analysed and understood, stratified by BW groups, and studied jointly with data on neonatal mortality. It has been also shown that children from low socio-economic status are at higher risk of developing cerebral palsy later.

See Prevalence and characteristics of children with Cerebral Palsy in Europe – 2002 - SCPE(115 KB)
See Cerebral Palsy and intrauterine growth in single births – 2003 - SCPE(136 KB)
See Multiple births and Cerebral Palsy in Europe – 2004 - SCPE(88 KB)
See Cerebral Palsy of post-neonatal origin – 2004 - SCPE(97 KB)

The project Surveillance of Cerebral Palsy in Europe: best practice in monitoring, understanding inequality and dissemination of knowledge coordinated by the Fundación para la Investigación Biomédica Hospital Universitario 12 de Octubre (Madrid, Spain) has been selected for funding in 2008 and should receive co-financing from the EU Health Programme (under condition that the negotiation procedures with the European Commission are successful and that the grant agreement is signed). The project will address promotion of best practice amongst professionals for childhood conditions which impose a heavy burden on families. The work takes advantage of the existing SCPE (Surveillance of Cerebral Palsy in Europe) which provides essential and comparable epidemiological data on cerebral palsy; this collaboration is ideally placed to study inequalities in quality of care of cerebral palsy and to extend surveillance to other childhood impairments. There will be clear exposition of best clinical practice in cerebral palsy and how inequalities in health care can be reduced. There will be improved monitoring systems, capable of even wider introduction across Europe. The web site will be a comprehensive information platform for SCPE-NET partners, public and professionals.

Congenital anomalies

The EUROCAT Project (Surveillance of congenital anomalies in Europe), under the coordination of the University of Ulster, Northern Ireland (UK), is a European network of 51 registries in 28 countries for the epidemiological surveillance of congenital anomalies (birth defects). It has been funded by the European Commission since 1997. Population coverage is 1.5 million annual births, 26% of EU births, and 25% of births in all European countries represented. Some of the main objectives are to:

1. provide essential epidemiological information on congenital anomalies in Europe based on a common dataset with common coding as specified in the EUROCAT Guide and the EUROCAT Data Management Programme (EDMP) used by member registries for data input/import, validation and annual transmission to the Central Registry,
2. act as an information and resource centre for the population, health professionals and managers regarding clusters or exposures or risk factors of concern,
3. provide a ready collaborative network and infrastructure for research into the causes and prevention of congenital anomalies and the treatment and care of affected children, and
4. survey policies and practices with regard to periconceptional folic acid supplementation.

Key points from the EUROCAT congenital anomalies surveillance:

• In the period 2000-2004 the live-birth prevalence of congenital anomalies was 19.8 per 1,000 live-births.
• The total prevalence (including foetal deaths and terminations of pregnancy for foetal anomaly) was 23.7 per 1,000 births.
• There were 0.9 still-births or first week deaths with congenital anomaly for every 1,000 births.
• There were 4 terminations of pregnancy for foetal anomaly for every 1,000 births.
• Four fifths of cases of congenital anomaly survived the first week of life. 14% of cases had a chromosomal anomaly.
• Down Syndrome has been increasing in prevalence across Europe due to increasing tendency to delay childbearing among mothers. In 2000-2004, the total prevalence of Down Syndrome was 1.9 per 1,000 births, and the live-birth prevalence 0.9 per 1,000 births.
• The majority of neural tube defects could be prevented by raising periconceptional folic acid status. In 2000-2004, the total prevalence of Neural Tube Defects was 9.3 per 10,000 births, and the live-birth prevalence 2.7 per 10,000. EUROCAT registries are however ready to monitor the impact of changes in policy in a few countries which are considering folic acid fortification of a staple food. A EUROCAT survey showed a high level of support among spina bifida parent/patient support groups in Europe for fortification.
• The abdominal wall anomaly gastroschisis has been increasing in prevalence in most European countries. Young mothers are at greatest risk, but the increase in prevalence is occurring across all age groups. In 2000-2004, the total prevalence was 2.2 per 10,000 births, similar to omphalocele (2.1 per 10,000 births).
• The prevalence of oral clefts 2000-2004 was 13.3 per 10,000 births. Geographic variation between European countries has been found for both cleft palate and particularly cleft lip, the latter being more common in northern countries.
• EUROCAT contributes with data on oral clefts to the WHO International Craniofacial Database.
• Cornelia de Lange syndrome has been the first of a list of syndromes to be fully described in terms of its epidemiology in Europe with EUROCAT data. Its prevalence was found to be 1.2 per 100,000 births.
• A collaborative project with SCPE (Surveillance of Cerebral Palsy in Europe) has found a high rate of congenital anomalies among children with cerebral palsy.

A EUROCAT survey showed a wide variation in prenatal screening policies in Europe, as well as variation in laws regarding termination of pregnancy (whether legal or not, and up to what gestational age). Analysis of data showed that screening policy has a significant impact on prenatal detection rates, but there is still wide variation between countries with similar policy, indicating other cultural and organisational factors intervening.

Recently, EUROCAT updated its report on neural tube defects (NTD) rates in 18 European countries in the context of folic acid policy and practices. The report, available on the EUROCAT website, demonstrates that more countries have begun issuing advice to women to take periconceptional folic acid. No country has yet introduced mandatory fortification of food with folic acid, however, although the policy is being advised in several countries. The decline rate in neural tube defects remains disappointing.

See EUROCAT Prevalence Data 1980-2006 by congenital anomaly subgroups
See EUROCAT Final Activity Report. For period March 2004 to August 2007
See EUROCAT Prenatal Screening Policies in Europe
See EUROCAT Prevention of Neural Tube Defects by Periconceptional Folic Acid Supplementation in Europe

The International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) established in 1974 is a non profit International Organisation affiliated to WHO. The organisation brings together birth defect surveillance and research programmes from around the world with the aim of investigating and preventing birth defects and lessening the impact of their consequences. They collect and analyses data on congenital malformations from ICBDSR member registries for surveillance and research purposes. It also promotes and manages several collaborative studies of congenital malformations, ranging from epidemiologic studies on selected malformations, to the evaluation of prevention policies across countries, to the study of genetic and environmental determinants of folate status and their relationship to the occurrence of congenital malformations.

See International Clearinghouse for Birth Defects Surveillance and Research Report - 2006

Responding to the need of health indicators on child health

In order to respond to the need on specific health indicators on child population the European Commission selected for funding in 2002 the project Bold CHILD - Child Health Indicators of Life and Development, coordinated by the Centre for Health Planning and Management at Keele University (UK). Child health is a large topic; the development of a number of well-known indicators including infant mortality is significant. Other topics such as child abuse, and unhealthy behaviour such as tobacco use, substance abuse, or excessive alcohol consumption need further development. In essence, the philosophy of the project has been that: health status measures alone are not sufficient to describe the whole range of phenomena of health and development, not least as many address negative aspects such as mortality and morbidity, which measure damage already suffered by a generation of children. Positive aspects of health and well-being are also important to measure, and there is a need sought to achieve a balance. Health process measures have their own value, but where addressing therapeutic services many such measures in essence focus on minimising damage to children whose health is already compromised. Measurement of positive processes is also important, if challenging. Measures of determinants are most valuable, as they give a chance of reducing or protecting against risk and thus damage to health. This view taken by the project has helped shape the approach to the final selection of indicators.

The United Nations Convention on the Rights of the Child confirms the importance this 0-17 years inclusive age group definition and the rights to health and welfare in this total period. Teenage and adolescent health has its own needs and characteristics, which should not be lost through statistical conventions.

The WHO European strategy for child and adolescent health and development, was adopted by the WHO Regional Committee in September 2005. The purpose of this strategy is to assist Member States in formulating their own policies and programmes. It identifies the main challenges to child and adolescent health and development and, most importantly, provides guidance based on evidence and experience gathered over recent years.

The World Health Report 2005 – Make Every Mother and Child Count, states that almost 11 million children under five years of age will die from causes that are largely preventable. Among them are 4 million babies who will not survive the first month of life. At the same time, more than half a million women will die in pregnancy, childbirth or soon after. The report says that reducing this toll in line with the Millennium Development Goals depends largely on every mother and every child having the right to access to health care from pregnancy through childbirth, the neonatal period and childhood.

With the goal of a strategic approach to increase awareness, commitment and action towards improving maternal and perinatal health in the European region, the WHO Europe adopted in 2007 the document Improving maternal and perinatal health: European strategic approach for making pregnancy safer.

Health surveys in infant populations

The Health Behaviour in School-aged Children (HBSC) study is a collaborative cross-national research survey supported by WHO/Europe. It is conducted by a multi-disciplinary network of researchers from 36 countries and regions in the WHO European Region and North America, and coordinated by the University of Edinburgh (Scotland, UK). The study seeks new insight into adolescents' health, health behaviour and lifestyles in a social context. It surveys young people aged 11, 13 and 15 years. The study began in 1982 and the first cross-national survey was conducted in 1983/84. The most recent one was in 2005/2006. Data have been collected every four years by means of a common research protocol.

The international data file from the 2005/2006 survey contains data from more than 200,000 young people. Sampling is conducted in accordance with the structure of national education systems within countries and is sometimes stratified by region or school type. The primary sampling unit is the school class or the whole school where a sample frame of classes is not available, classes then being randomly selected.

The report clearly shows that boys and girls differ in terms of reported health behaviors and health outcomes. The survey provides comparable and detailed data on health outcomes, health behaviors, risk behaviors and social contexts, including for instance on perceived health and well-being, smoking and cannabis use, alcohol drinking, sexual health, physical activity, eating habits, overweight, body dissatisfaction, dieting and weight control, oral health, bullying and fighting, injuries, relations with parents and young people’s life circumstances.

Key findings from the HBSC 2005/2006 survey:

• Young people’s rating of their own health varies widely between countries and regions. Fair or poor self-rated health is more common among older children and girls. Young people in northern Europe and those from less affluent families are more likely to report fair or poor health.
• All three age-groups show large cross-national differences in weekly smoking. At age 15, 7–37% of boys and 7–48% of girls are weekly smokers, most of them smoking daily. The most striking feature of weekly smoking behaviour is the increase between ages 13 and 15 and the emerging variation in rates across countries.
• Weekly drinking is widespread among both boys and girls but with considerable variation across countries and regions. It increases substantially between ages 13 and 15 and is more common among boys.
• Cannabis use varies across countries for 15-year-olds, ranging from 3% to 34% (who have ever used cannabis in their lifetime). On average, boys are more likely to use cannabis than girls: 8% and 6%, respectively, have used it in the last 30 days, and rates are most similar for boys and girls where overall country rates are highest
• While the average percentage of young people aged 15 having had sexual intercourse is 24% for girls and 30% for boys, levels vary widely between the countries and regions: from 5% to 66% of girls and 13% to 55% of boys. On average, among the sexually active, 72% of girls and 81% of boys report using a condom during their last sexual intercourse. Use of the contraceptive pill among the sexually active 15-year-olds surveyed is highest in Western Europe and lowest in eastern and southern Europe.
• Young people are recommended to participate in one hour or more of at least moderate physical activity every day. Less than half of young people do so in almost every country and region. Across all countries and regions and all age-groups, girls are less active than boys and the gender gap increases with age.
• Daily fruit consumption varies significantly between countries, is highest for 11- year-olds and declines with age. Boys are less likely than girls to report eating fruit, as are those from less affluent families in almost all countries. The daily consumption of soft drinks also varies cross-nationally and tends to be higher among older adolescents.
• Girls are more likely than boys to see themselves as a bit or much too fat, and this negative body image becomes more prevalent with age. Feeling too fat is more apparent among girls living in northern and Western Europe. Rates of dieting and weight-control behaviour are higher in girls than boys at all ages, the gender gap widening with age. Attempting to lose weight seems to be a common feature of girls’ lifestyles by the age of 13 (with rates up to 32% for girls).
• The data presented on overweight and obesity are derived from self-reported height and weight information used to calculate body mass index, not from actual measurements, and so need to be treated with some caution. The general term "overweight" includes two groups: those who are considered obese and those who are considered overweight but not obese. The proportions of 13- and 15-year-old boys and girls who are overweight range from 4% to 35% across countries and regions.
• Regular (more than once a day) tooth brushing is not the norm in all countries. Tooth brushing increases with age, and is higher among girls. Boys and girls from more affluent families universally brush their teeth more often. Across the three age-groups, the range among boys and girls is between 20%.
• The proportions of boys and girls who sustained injuries requiring medical attention once or more in the previous 12 months increase between the ages of 11 and 15, with consistent gender and socioeconomic differences. At age 15, the rates for boys range from 28% to 65%, while for girls they range from 21% to 50%. Injury rates are higher among those from more affluent families, and those from northern Europe.

See 2005/06 International Report: Inequalities in Young People's Health - HBSC
See Young people's health in context. Health Behaviour in School-aged Children (HBSC) study: international report from the 2001/2002 survey

The cooperating sister projects KIDSCREEN and DISABKIDS were funded by the European Commission within the Fifth Framework Programme (FP5). Both projects were part of the Quality of Life and Management of Living Resources programme.

The KIDSCREEN instruments are a family of generic quality of life measures that have been designed for children and adolescent aged between 8 to 18 years. It was developed simultaneously in several European countries taking children's concepts of health and well-being into consideration. KIDSCREEN can be used as a screening, monitoring and evaluation tool in representative national and European health surveys. Three KIDSCREEN instruments are available in child and adolescent as well as parent / proxy versions: KIDSCREEN-52 (long version) covering ten HRQoL dimensions, KIDSCREEN-27 (short version) covering five HRQoL dimensions and the KIDSCREEN-10 Index as a global HRQoL score. Scores can be calculated for each dimension. T-values and percentages will be available for several countries stratified by age and gender.

Health-related quality of life (HRQoL) measurement can provide useful data for health services research. The measurement of HRQoL is currently more advanced in adult than in child populations, though a substantial number of generic and disease-specific questionnaires now exist to measure HRQOL in younger respondents.

The DISABKIDS project aimed at enhancing the quality of life and independence of children with chronic health conditions and their families. Central to this pursuit was the development of a set of health related quality of life (HRQoL) questionnaires that are standardised for the whole of Europe. The DISABKIDS Core Instruments measure general quality of life and the level of distress caused by a chronic disease and can be supplement by condition-specific modules for asthma, arthritis, cerebral palsy, cystic fibrosis, dermatitis, diabetes, and epilepsy.

Child disease specific networks

Incidence of Childhood Cancer

The Automated Childhood Cancer Information System (ACCIS) is a project managed by the IARC (International Agency on Research on Cancer) and supported by the European Commission, with the objective of collection, presentation, interpretation and dissemination of data on childhood cancer in Europe. The ACCIS database contains some 160,000 records on childhood and adolescent cancer cases registered over the last 30 years in 78 European population-based cancer registries, covering 2.6 billion person-years. To provide valid indicators of incidence and survival, the submitted datasets are verified using automatic check procedures. The tumours are classified according to the International Classification of Childhood Cancer.

See ACCIS Summary tables of incidence and survival on childhood cancer

Incidence of Childhood Diabetes

To study the epidemiology of childhood-onset type 1 insulin-dependent diabetes in Europe, in 1988 the EURODIAB (The Epidemiology and prevention of Diabetes) Project established prospective geographically-defined registers of new cases diagnosed in persons under 15 years of age. This report is based on 16,362 cases registered during the period 1989-94 by 44 centres representing most European countries and Israel and covering a population of about 28 million children. The standardised average annual incidence rate during the period 1989-94 ranged from 6.2 cases per 100,000 per year in Northern Greece to 40.2 cases per 100,000 per year in two regions of Finland. Pooled over centres and sexes, the rates of increase were 6.3% for children aged 0-4 years, 3.1% for 5-9 years, and 2.4% for 10-14 years. The results confirm a very wide range of incidence rates within EU and show that the increase in incidence during the period, varying from country to country. The rapid rate of increase in children aged under 5 is of particular concern.

In 1993, a new phase, EURODIAB ACE (Aetiology of childhood diabetes on an epidemiological basis), began. Its aim was to use the by now well-established network to research the nature of childhood diabetes in detail using genetic and immunological methods. The ACE study set out to monitor the frequency of diabetes in children and to describe trends in the incidence of the disease throughout Europe. This study also included teams of scientists from Central and Eastern Europe - in total about 40 different groups worked together, representing a study population of almost 30 million children. The current phase of the project, EURODIAB TIGER (Type I Genetic Epidemiology Resource), is taking the work forward to gain significant clues as to which causal factors are the most important. TIGER scientists are currently collecting material from 2,000 patients and their immediate relatives. These samples will be screened and analysed for the distribution of specific genetic and immune markers. This provides the centralised facility that does all the laboratory work.

SWEET (Better control in paediatric and adolescent diabetes in the EU: working to create Centres of Reference) is a project selected for funding by the Public Health Programme in 2007 coordinated by the International Society for Paediatric and Adolescent Diabetes (ISPAD). The objectives of the project are to improve secondary prevention, diagnosis and control of type 1 and type 2 diabetes in children and adolescents by supporting the development of centres of reference (CORs) for paediatric and adolescent diabetes services across the EU. The main expected outcome of the SWEET Project will be a Paediatric Diabetes Toolbox including: (i) Recommendations for minimum treatment and care; (ii) Recommendations for patient education programmes; (iii) Recommendations for training programmes for health professionals; and (iv) Definition and criteria of Centres of References for paediatric and adolescent diabetes.

The incidence of childhood diabetes is one of the indicators of the European Core Indicators in Diabetes (EUCID) project. Not all EUCID countries have data available. Within the EU there are considerable differences. Some countries had only data on type 1 diabetes and some only of the total of type 1 and type 2. The incidence of type 2 diabetes in these children is growing, but appears not to be a considerable percentage in 2005 for the countries where data were available.

See Crude and standardised Incidence by the age structure of the European population (IARC-1976) of diabetes amongst children 0-14 years old in the EU – EUCID Project(97 KB)

Prevalence of Childhood Asthma

A large international study initiated to gain new insights into the aetiology of asthma and allergic disorders in children through standardized comparisons of diverse child populations worldwide was the International Study of Asthma and Allergies in Childhood (ISAAC). 463,801 children participated in this study, aged 13-14 years in 155 collaborating centres in 56 countries. In the Phase I of ISAAC the prevalence of symptoms of asthma, allergic rhino-conjunctivitis and atopic eczema in 6-7 and 13-15 years old were assessed and > 20 fold differences in prevalences between centres were found. The information was collected by a self administered questionnaire. Phase II of ISAAC (in a large number of countries) assessed the prevalence of objective markers of atopic diseases and investigates atopic determinants. In this phase children from 9 to 11 were included. In this study bronchial responsiveness was assessed using inhaled hyperosmolar (4.5%) saline.

Prevalence of Autistic Spectrum Disorders

The hallmark feature of autism is impaired social interaction. Parents are usually the first to notice symptoms of autism in children. Even in infancy, a baby with autism may be unresponsive to people, or focus intently on one item to the exclusion of others for long periods. A child with autism may appear to develop normally and then withdraw and become indifferent to social contact. Many children with autism have a reduced sensitivity to pain, but are abnormally sensitive to sensations such as sound, touch, or other sensory stimulation. These unusual sensitivities may contribute to behavioural symptoms such as a resistance to being cuddled or hugged.

See Autistic Spectrum Disorders – European Commission

Mental health

An EU High-Level Conference "Together for Mental Health and Well-being", taking place on 13 June 2008 in Brussels, established the European Pact for Mental Health and Well-being"(126 KB)  Deutsch (de) français (fr) magyar (hu) . The Pact is a symbol of the determination of conference participants to exchange and work together on mental health opportunities and challenges.

The Pact focuses on four priority themes: Prevention of Suicide and Depression, Mental Health in Youth and Education, Mental Health in Workplace Settings and Mental Health in Older People. Combating Stigma and Social Exclusion is a priority which runs through across all thematic areas. The Pact will be implemented through a series of thematic conferences on each of the priorities during 2009-2010.

See Mental health – European Commission

The School children’s mental health in Europe Project coordinated by the Fondation d’entreprise MGEN pour la santé Publique (France) was selected for funding by the Public Health Programme in 2006. The objectives are to develop, test and validate a kit of scientifically tested instruments for measuring mental health in 6- to 11-year-old children in seven participating EU countries and to compare mental health, use of care and risk factors across these countries. The project will consist of two phases. The first one will be to select available and scientifically sound instruments to measure children’s mental health using information from the parents, teachers and the children themselves, and to validate these instruments against clinicians’ judgement in the diverse languages and participating countries (100 children per country); the second phase will entail a pilot survey in primary schools in each of the participating countries (1500 children per country). Primary schools are an ideal setting for performing such surveys since in a short period of time data can be collected from children, teachers and parents to whom self-administered questionnaire can be given.

Children's Health and the Environment

Health is influenced by a variety of factors, the main ones being genetic inheritance and the economic, social, psychological and physical environment. These factors interact in complex ways, which are specific for each disease and for specific individuals and population groups. Children are at risk of exposure to more than 15,000 synthetic chemicals, nearly all of them developed over the past 50 years, and to a variety of physical agents. In addition, developing organisms are more vulnerable to environmental contaminants for several reasons, including greater and longer exposure and particular susceptibility windows. Alongside this is an unprecedented increase in the incidence of asthma; some childhood cancers also show an upward trend; injuries still represent a high burden for children and young adults; and there is increasing concern regarding the neurotoxicity, immunotoxicity and endocrine-disrupting properties of substances that are widely dispersed in the environment.

The third Ministerial Conference on Environment and Health in 1999 in London emphasised the need to develop child-focused environmental protection policies and to establish child specific monitoring tools. On this basis an action plan on children's environmental health in Europe was prepared, the so called "Children's Environment and Health Action Plan for Europe" (CEHAPE). The plan was presented and adopted at the fourth Ministerial Conference on Health and Environment in June 2004 in Budapest.

The CEHAPE sets out a series of regional development goals Ministers have commit themselves to. On the basis of the CEHAPE, countries will develop national action plans addressing the priority goals.

See Children's Environment and Health Action Plan for Europe – European Commission

See also Children's health and environment: A review of evidence. A joint report from the European Environment Agency and the WHO Regional Office for Europe

The CHEST - Children's Health, Environment and Safety Training Project coordinated by the INCHES (International Network on Children's Health, Environement and Safety, NL) was selected for funding by the European Commission in 2003 in order to produce a training manual which will be the basis for training new professionals in the field of children's environmental health. This manual will de disseminated to all relevant institutes dealing with training professionals related to environmental health.

The European Child Safety Alliance is a programme of the European Association for Injury Prevention and Safety Promotion (EuroSafe) lead and managed by the European Child Safety Alliance Director with funding of the European Commission, the Consumer Safety Institute in the Netherlands and Johnson and Johnson Europe. This project will achieve safer daily living for children throughout Europe. This includes advocating for consistency of standards, policies, and legislation used throughout Europe that impact on children’s safety, as well as assisting all Europeans to be informed consumers in order to ensure the right choices for children. Ideally families would have a selection of child safety products that are accessible, affordable and easy to use.

Rare diseases

Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Most of them are genetic diseases resulting from environmental exposures during pregnancy or later in life, often in combination with genetic susceptibility, the others being rare cancers, auto-immune diseases, congenital malformations, toxic and infectious diseases among other categories. There is also a great diversity in the age at which the first symptoms occur but half of Rare Diseases can appear at birth or during childhood. The European Commission is supporting some specific networks on paediatric rare diseases.

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