Effect of mass media campaign to reduce socioeconomic differences in women's awareness and behaviour concerning use of folic acid: cross sectional study.
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Biomedical subjects
Publications and source records attributed to M C Cornel.
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We examined the possibilities of improving the retrospective collection of data on drug use during pregnancy. The European Registration of Congenital Anomalies (EUROCAT) has registered information on maternal drug exposure in the northern Netherlands through a question on the notification form for the registration of birth defects, filled out by physicians or midwives since 1981. Furthermore, hospital records are used and general practitioners are asked to add information on drug use. The present pilot study used pharmacy records and maternal questionnaires as well as maternal interview data to complete the data on drug exposure in the EUROCAT registration. Combined information from pharmacies, questionnaires, and interviews with the mother were used as the reference standard. Pharmacy records provided detailed data on 57% of drugs used (prescription drugs, mainly). Mothers were able to report 76% of drug groups used, but when only data on the exact name of the drug were studied, this figure was 52%. Of the drugs dispensed by the pharmacy, 6% were not used (false positives). We conclude that pharmacy records and maternal interviews are both indispensable sources of information on maternal drug exposure that provide much added value.
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BACKGROUND: While monitoring birth defects in a registry, statistically significant increases in prevalence occasionally occur. In the European Registration Of Congenital Anomalies (EUROCAT) in the Northern Netherlands 20000 births are monitored every year. For omphaloceles, a steady increase in the prevalence from 0.86 per 10000 live- and stillbirths in 1981-1983 to 3.11 per 10000 live- and stillbirths in 1994 was seen in the three northern provinces of The Netherlands. METHODS: A stepwise enquiry into this increase, which included checking for misclassification and change in coding and ascertainment when necessary, was done. All cases of omphalocele and associated or similar birth defects registered at the EUROCAT registry were retrieved and if necessary recoded. RESULTS: This study showed that the increase reported previously was not a true time trend. A few cases of e.g. diastasis recti and trisomy 18 were misclassified. The prevalence in more recent years is comparable with that in the rest of Europe, whereas it used to be lower. There was an increase in isolated omphalocele, but the numbers are small. CONCLUSIONS: The stepwise enquiry described should be a standard procedure after noticing an increasing prevalence in a registry. A better subdivision, e.g. in isolated cases versus children with multiple congenital anomalies, before monitoring can contribute to a lower number of false positive signals.
OBJECTIVE: To survey the associations between several risk factors and birth defects, in order to detect potential new teratogens. METHODS: Data of the two Dutch European Registration of Congenital Anomalies (EUROCAT) registries collected before January 1, 1998 were used to perform chi2 tests for a large number of risk factors and birth defects. Defects caused by chromosomal or monogenic disorders were analyzed separately. RESULTS: Cross-tabulations of 80 groups of birth defects with 303 risk factors were studied. Of these, 126 combinations had a p value under 0.05, and 34 had a p value under 0.001. Of these 34 associations, some are known in the literature, some were found before in the same databases and some were new associations. CONCLUSIONS: This is a good method for generating new hypotheses for associations between risk factors and birth defects. It can be a start for new, more in-depth studies of potential teratogens.
Scientists involved in the epidemiology of congenital anomalies (including genetic diseases) use many terms to describe the occurrence of these disorders amongst births, such as 'incidence', 'prevalence' and 'rate'. Yet it is clear that often 'prevalence' is the only meaningful measure for the proportion of births affected with a certain congenital or genetic disorder. 'Incidence' and 'rate' are usually inappropriate, as the assessment of the frequency of a disorder is not a matter of following up a cohort of healthy individuals until they fall ill.
Thalidomide was withdrawn from the market in the early sixties because of major teratogenic effects such as reduction defects of the limbs. Since, however, it has been found to be an effective drug in erythema nodosum leprosum. In the United States it was decided in September 1997 to admit thalidomide to the market for this indication, and in South America it has been available for this indication all the time. Thalidomide is also efficacious in other major disorders (e.g. aphtae and ulcers in aids) or its efficacy is being investigated in clinical trials (e.g. autoimmune diseases, other complications in aids). The American Food and Drug Administration has imposed conditions for the use of thalidomide. Users have to sign an informed consent and to take adequate contraceptive measures. Physicians should inform the patients and monitor side effects. Pharmacists should record and control the use.
OBJECTIVE: To determine if the birth prevalence data on congenital malformations in the national perinatal registries, the Landelijke Verloskunde Registratie (LVR) (National Obstetrical Registry) and the Landelijke Neonatologie Registratie (LNR) (National Neonatological Registry), can be combined into one nationwide database, and if so to determine the validity of this database. DESIGN: Descriptive. SETTING: TNO Prevention and Health, Leiden, the Netherlands. METHODS: Investigation of the registered number of congenital malformations in the LVR/LNR, the amount of overlapping and the possibility of combining the LVR and LNR into one nationwide database. The validity of this database was evaluated by comparing the total number of registered children with the total number expected in the Netherlands. Furthermore the total number of children registered in the nationwide database was compared with children registered by the European registration of congenital anomalies and twins (EUROCAT) in the Northern Netherlands. RESULTS: The LVR and LNR were mostly complementary with respect to the registration of congenital anomalies and could be combined to one nationwide database. For sixteen important diagnoses this nationwide database contained approximately 87% of the total number expected in the Netherlands. Comparing this database with the data of EUROCAT in the Northern Netherlands showed that one-third of these congenital malformations (n = 229 in 217 children) were registered in both systems, while 99 (43%) were only registered by EUROCAT and 50 (22%) only by the nationwide database. CONCLUSION: It was possible to create a nationwide database, which can supplement the regional EUROCAT data with nationwide data on sixteen important diagnoses of congenital malformations.
OBJECTIVE: In November 1993, Dutch health authorities advised that women planning a pregnancy should take folic acid in the periconceptional period to reduce the risk of fetal neural tube defects. In the autumn of 1995 a national campaign was organized to inform women and health care professionals in a systematic way. METHODS: We assessed the awareness and behaviour of women at their first or second antenatal visit in two surveys in the spring of 1994 and the autumn of 1995, in order to evaluate the impact of non-systematic information during that period, and to collect baseline data to evaluate the effect of the national folic acid campaign. The two surveys were carried out in the north and the west of The Netherlands. RESULTS: The proportion of women who had heard of folic acid increased from 28% to 78%. The proportion that used folic acid during any period in pregnancy increased from 7.8% to 26%. The proportion that took folic acid tablets during the whole of the recommended period increased from 0.8 to 4.4%. In the group of women who did not take folic acid, the proportion who did "not like to use anything during pregnancy" decreased, as did the proportion who did "not think it is useful". CONCLUSION: In the Netherlands, non-systemic information about periconceptional folic acid use has already led to significant changes in awareness and behaviour before the start of the national folic acid campaign.
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OBJECTIVE: To describe the epidemiological impact of prenatal diagnosis and selective abortion on the frequency of neural tube defects (NTD) in the period 1980-1992 in the Northern Netherlands in comparison with data from other European regions. DESIGN: Descriptive. SETTING: 17 'European registration of congenital anomalies' (EUROCAT) registrations, localized in 10 European countries. METHOD: Data were collected actively and retrospectively from multiple sources fed by voluntary registration of congenital anomalies in live births, stillbirths and pregnancies terminated because of congenital anomalies. RESULTS: In Europe the total birth prevalence of NTD in the period 1980-1992 ranged from 5.3 per 10,000 in Switzerland to 29.0 per 10,000 in Glasgow, a difference of a factor 5.5. In live births the difference was ninefold: ranging from 2.0 per 10,000 in Paris to 18.8 per 10,000 in Dublin. The Netherlands had a conspicuously high prevalence among live births, higher than in other regions in continental Europe. For spina bifida the live birth prevalence both in other continental regions and in Glasgow was also lower than in the Netherlands. In Glasgow serum alpha-foetoprotein screening apparently led to frequent early prenatal diagnosis of NTD and to frequent termination of pregnancy. In Paris the use of ultrasound screening appears to lead to frequent later prenatal diagnosis, as well as frequent termination of pregnancy. CONCLUSION: In the Netherlands the impact of prenatal diagnosis and selective abortion is limited, so that primary prevention (periconceptional use of folic acid) is more important than in some other European countries.
Incidence is a frequency measure for quantifying new cases of a disease, and prevalence quantifies patients who already have a particular disorder. An exception to this rule is the frequency of congenital and hereditary disorders. If this frequency is expressed as the proportion of the number of births, prevalence is appropriate. Incidence is a meaningful measure only when used to indicate the frequency with which such a disorder is diagnosed during life, as opposed to the frequency with which it originates.
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The aim of this article is to examine the performance of screening for fetal Down syndrome (DS) in the context of demographic variation in time and place, using population and fertility data for several European countries. Two screening approaches are distinguished: one on the basis of maternal serum screening with human chorionic gonadotropin (hCG) and alpha-fetoprotein (AFP) in combination with maternal age, and one on the basis of maternal age only. Screening performance, as measured by detection and false-positive ratios, is shown to be the result of the screening approach chosen and of the demographic characteristics of the population under consideration. A proper distinction between these two determinants of DS screening performance should be made, in order to distinguish between an improvement in screening performance that is brought about by a new screening approach and an improvement that is brought about by demographic change. We recommend that measures of DS screening performance be standardized for demographic variation. The methodology and demographic data presented in this article can be used for this purpose.
OBJECTIVE: To determine the live birth prevalence of neural tube defects (NTD) in the Netherlands and describe the clinical picture. DESIGN: Descriptive. SETTING: TNO Prevention and Health, Leiden, the Netherlands. METHOD: Data collected through active surveillance of NTD on a monthly basis by paediatricians throughout the country. RESULTS: From October 1993 to September 1995, 203 infants with NTD were registered. Six were diagnosed with anencephaly, 10 with encephalocele and 157 with spina bifida. On 30 children no further information was available. Seventy-nine per cent of children with spina bifida had a myelomeningocele and 11% had a meningocele. Hydrocephalus was found in 75% of all registered infants and in 81% of infants with myelomeningocele. In 18% of the latter group a kyphosis was diagnosed. In 45% of 131 children prognosis of ambulation fair: they were expected to learn to walk. In 32% prognosis for motor disorder was very poor, and unsupported sitting was considered to be unlikely. At the time of registration, when most children were less than a month old, 55 (27%) had died; in infants with a myelomeningocele this was 35%. In many children treatment had not been started, probably because the prognosis was poor. Some had not been referred to a multidisciplinary team and only one of them received a hydrocephalus valve. CONCLUSION: The prevalence of spina bifida in the Netherlands is at least 100 live-born children per year among 195,000 total births. Mortality in the first month is high and for many surviving infants a severe handicap can be expected. Preventive strategies (such as folic acid supplementation) are urgently needed.
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