The availability of perinatal health indicators in Europe

doi:10.1016/j.ejogrb.2003.09.003

European Journal of Obstetrics & Gynecology and Reproductive Biology

Volume 111, Supplement 1, 28 November 2003, Pages S15-S32

https://doi.org/10.1016/j.ejogrb.2003.09.003 Get rights and content

Abstract

This paper uses the results of the PERISTAT feasibility study to assess the extent to which the participating countries of Europe were able to provide data to construct the core and recommended indicators of perinatal health defined in the project. After describing the approaches used for data collection in participating countries, this paper describes the extent to which they were able to provide the data requested to construct the indicators. It documents data sources within each country and their characteristics. The paper then discusses influences on the agenda, particularly the extent to which data collection occurs as a by-product of other processes such as civil registration and the administration of health care and how these processes can both enable and impede data collection. It closes by suggesting how data collection in Europe can be improved in order to widen the scope of the agenda for compiling perinatal indicators.

Section snippets

The availability of perinatal health indicators in Europe

This paper describes the feasibility study undertaken to assess the extent to which the participating countries of Europe were able to provide data to construct the core and recommended indicators defined in the PERISTAT project. It discusses the results of this and relates them to the ways in which data are collected within the countries.

After describing the approach made to participating countries, this paper describes the extent to which they were able to provide the data we requested to

How the indicator data were compiled

In order to collect the aggregated data required to construct the indicators, the members of the Scientific Advisory Committee were first asked to provide information about the routine data collection systems in their countries, including both routine administrative and clinical systems and periodic sample surveys. For each system, the information provided included the name of the statistical, clinical or other organisation running it and the contact details of a person within the organisation

Data collection within participating countries

Information about data collection systems identified by participants and used to contribute data to PERISTAT are summarised in Table 1, Table 2, Table 3, Table 4, Table 5. The systems are summarised and tabulated by country in Appendix A. These do not necessarily cover all relevant data available in each country. In some countries, there may be sources which were not identified or were known but not used. In some cases, requests for data from specific sources may not have been successful,

Availability of data to construct PERISTAT indicators

The extent to which countries were able to provide the data for the proposed indicators is summarised in Fig. 1. A black square for a data item indicates that the data were fully available at a national level. Horizontal stripes indicate that some but not all the data were available and vertical stripes indicate that the data were available either for one or more but not all regions or components of a country or for a sample.

As can be seen, coverage varied widely. The Nordic countries, Ireland

Discussion

The extent to which data could be provided depended firstly on whether the data items needed were recorded within a country. Most of the data items will have been recorded somewhere, on paper even if not on a computer. Other factors played an equally important part in determining whether this information became translated into national statistics. These included where and how the data were recorded locally, whether they found their way into national systems, the quality and coverage of these

Conclusions and recommendations

The work done in the PERISTAT project has been considerable. As well as leading to data which can be compared internationally, it has identified major gaps in the data collected in the participating countries. Like so many projects of this type, it has produced a list of subjects for further work in addition to its own results.

In comparison with other international indicator sets, described in article 1 in this issue, the gaps in the data available to construct the PERISTAT indicators seem

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Endocrine disruptors are ubiquitous chemicals contaminants in the environment, wildlife, and humans. Their adverse effects on reproduction are well-documented. There is growing evidence that they can contribute to the current emergence of chronic diseases.
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Twenty-five out of 680 studies were included in the analysis. All pollutants were widely detected in maternal and new borns samples. Most of the studies have shown associations between bisphenol A, brominated flame retardants and perfluorinated compounds and lower birth weight. The effects on gestational age were less documented and have shown no clear connection. Results for phthalates were more ambiguous. Only one non-instructive study was found on parabens.
Due to the inherent methological bias on endocrine disruptors research, further additional studies on environmental health must be investigated. It seems necessary to adopt preventive health measures first for vulnerable population.
The European perinatal health report: Delivering comparable data for examining differences in maternal and infant health
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A multilayered approach for the analysis of perinatal mortality using different classification systems
2009, European Journal of Obstetrics and Gynecology and Reproductive Biology
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This in turn requires a complete perinatal mortality registration. The inadequacies in the perinatal mortality registration have been described elsewhere [1]. Apart from the registration problem there is also the lasting discussion on perinatal period definitions; there are marked differences in these definitions in and between countries hampering an adequate comparison of perinatal mortality [2,3].
Many classification systems for perinatal mortality are available, all with their own strengths and weaknesses: none of them has been universally accepted. We present a systematic multilayered approach for the analysis of perinatal mortality based on information related to the moment of death, the conditions associated with death and the underlying cause of death, using a combination of representatives of existing classification systems. We compared the existing classification systems regarding their definition of the perinatal period, level of complexity, inclusion of maternal, foetal and/or placental factors and whether they focus at a clinical or pathological viewpoint. Furthermore, we allocated the classification systems to one of three categories: ‘when’, ‘what’ or ‘why’, dependent on whether the allocation of the individual cases of perinatal mortality is based on the moment of death (‘when’), the clinical conditions associated with death (‘what’), or the underlying cause of death (‘why’). A multilayered approach for the analysis and classification of perinatal mortality is possible by using combinations of existing systems; for example the Wigglesworth or Nordic Baltic (‘when’), ReCoDe (‘what’) and Tulip (‘why’) classification systems. This approach is useful not only for in depth analysis of perinatal mortality in the developed world but also for analysis of perinatal mortality in the developing countries, where resources to investigate death are often limited.
Epidemiology of prematurity - How valid are comparisons of neonatal outcomes?
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Conversely, a stillborn delivery that would not require reporting due to the gestational age may be over-reported as a live birth, at the parents' request, in order to require birth registration. Whilst the WHO definition of the perinatal period as beginning at 22 weeks' gestation has been adopted by many countries thus minimising these registration differences, there are still exceptions, including the UK (which only registers stillbirths from 24 weeks' gestation), Denmark (which registers stillbirths from 28 weeks' gestation) and Germany (which has a lower birth weight cut-off of 500 g for all births).10 Direct comparisons of routine neonatal mortality statistics between European countries should, therefore, be interpreted with caution.
Direct comparisons of neonatal outcomes at any level (unit, regional or international), require detailed validation and standardisation to ensure ‘like for like’ evaluation. Reported variation in neonatal performance may be either real or the result of one or more artefacts of the data collection. These issues need to be understood in order for an accurate interpretation to be made. Such artefacts are a particular feature of national data collection systems and can lead to serious misinterpretation. For example, very preterm deliveries have a major impact on neonatal mortality rates in developed countries with births before 33 weeks of gestation accounting for between 35% and 70% of neonatal deaths. Variation in the rate of very preterm delivery rates and differing practices regarding registration of these infants can have a major effect on the recorded neonatal mortality rate.
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Compared to deterministic MRL, probabilistic MRL has lower specificity, but higher sensitivity [9,10]. So far, perinatal epidemiology in the Netherlands was either based on data from selective professional registries or on civil registries with limited content [1]. Previous attempts to link the registries by deterministic MRL failed by high rates of missing values, high number of typing errors, and in particular by conflicting information in the records as to the referral status [1,12].
To describe the technical approach and subsequent validation of the probabilistic linkage of the three anonymous, population-based Dutch Perinatal Registries (LVR1 of midwives, LVR2 of obstetricians, and LNR of pediatricians/neonatologists). These registries do not share a unique identification number.
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Many studies commenting the differences in perinatal mortality over time focused their attention on the impact of prenatal diagnosis [6,9]. Even the PERISTAT project, which involved many countries in Europe, considered 97 indicators to picture the perinatal health in developed countries [10,11] but failed in defining the actual situation, probably due to the multitude of confounding aspects [4]. Moreover, they analysed such a short period (1 year) that it was not possible to measure perinatal health outcomes properly, as they need a longer time frame.
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We reviewed the data recorded in the past 50 years in Italy on perinatal and infant mortality. Each single class of mortality rate (according to WHO definitions) was assessed on temporal trends allowing a critical speculative analysis, mainly focusing on the last 20 years, in an attempt to evaluate the impact of prenatal diagnosis.
Infant mortality rate (IMR) constantly decreased in the study period whereas early neonatal mortality rate progressively diminished in a 5-year comparison till the early 1990s. Perinatal mortality showed a linear negative trend until the 1980s, after which the decrease steadied at about 23% in the following 5-year period. Infant mortality attributable to congenital anomalies throughout a 20-year span (1980–2000) was steady at about 23% although a progressive reduction in general infant mortality was reported.
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The availability of perinatal health indicators in Europe

Abstract

Section snippets

The availability of perinatal health indicators in Europe

How the indicator data were compiled

Data collection within participating countries

Availability of data to construct PERISTAT indicators

Discussion

Conclusions and recommendations

Obstet. Gynecol.

BJOG

Midwifery

The reliability of perinatal and neonatal mortality rates: differential under-reporting in linked professional registers vs. Dutch civil registers

Pediatr. Perinat. Epidemiol.

The Greek national perinatal survey: I: Design, methodology, case ascertainment

Paediatr. Perinat. Epidemiol.

Identifying problems with data collection at a local level: survey of NHS maternity units in England

BMJ

Rising multiple maternity rates and medical management of subfertility: better information is needed

Eur. J. Public Health

The MOMS Group. Classification differences and maternal mortality: a European study

Int. J. Epidemiol.