Obstetric interventions for babies born before 28 weeks of gestation in Europe: results of the MOSAIC study.

OBJECTIVE: To describe obstetric intervention for extremely preterm births in ten European regions and assess its impact on mortality and short term morbidity. DESIGN: Prospective observational cohort study. SETTING: Ten regions from nine countries participating in the 'Models of Organising Access to Intensive Care for Very Preterm Babies in Europe' (MOSAIC) project. POPULATION: All births from 22 to 29 weeks of gestation (n = 4146) in 2003, excluding terminations of pregnancy. METHODS: Comparison of three obstetric interventions (antenatal corticosteroids, antenatal transfer and caesarean section for fetal indication) rates at 22-23, 24-25 and 26-27 weeks to that at 28-29 weeks and the association of the level of intervention with pregnancy outcome. MAIN OUTCOME MEASURES: Use of antenatal corticosteroids, antenatal transfer and caesarean section by two-week gestational age groups as well as a composite score of these three interventions. Outcomes included stillbirth, in-hospital mortality and intraventricular haemorrhage (IVH) grades III and IV and/or periventricular leucomalacia (PVL) and bronchopulmonary dysplasia (BPD). RESULTS: There were large differences between regions in interventions for births at 22-23 and 24-25 weeks. Differences were most pronounced at 24-25 weeks; in some regions these babies received the same care as babies of 28-29 weeks, whereas elsewhere levels of intervention were distinctly lower. Before 26 weeks and especially at 24-25 weeks, there was an association between the composite intervention score and mortality. No association was observed at 26-27 weeks. For survivors at 24-25 weeks, the intervention score was associated with higher rates of BPD, but not with IVH or PVL. CONCLUSIONS: There are large differences between European regions in obstetric practices at the lower limit of viability and these are related to outcome, especially at 24-25 weeks.

[The usefulness of the hospital standardized mortality ratio as an indicator of hospital mortality]. / Het gestandaardiseerde ziekenhuissterftecijfer (HSMR) bruikbaar voor het volgen van ziekenhuissterfte.

In 2007, a patient safety programme was started to reduce hospital mortality in the Netherlands. The hospital standardized mortality ratio (HSMR) seems to be a promising indicator for monitoring the reduction of hospital mortality within hospitals. It is questionable, however, whether the HSMR can be used to compare the performance of hospitals. It has been shown that certain specialized procedures such as percutaneous transluminal coronary angioplasty (PTCA) and open heart surgery have an impact on the HSMR. Although this hampers a fair comparison between cardiac centres and general hospitals, the HSMR may still indicate whether a cardiac centre could improve its performance. Moreover, the impact of cardiac procedures on the HSMR is relatively modest, which shows that it is a robust indicator to monitor the intended decrease of hospital mortality on a national scale.

[At the limits of viability: Dutch referral policy for premature birth too reserved]. / Op de grens van levensvatbaarheid: Nederlands verwijsbeleid bij vroeggeboorte te terughoudend.

OBJECTIVE: Evaluation of policy and treatment of deliveries at the limits of viability in the Netherlands and resulting survival figures. DESIGN: Cohort study. METHOD: Within the framework of the European 'Models of organising access to intensive care for very preterm births in Europe' (MOSAIC) study, data was collected on all 512 births in 2003 (terminations excluded) following 22-31 weeks gestation in the catchment areas of the perinatal centres in Nijmegen and Utrecht, the Netherlands. RESULTS: Gynaecologists and neonatologists practised a reserved policy for the active treatment of pregnancies under 25 weeks (5/77; 6%); all infants died. At 25 weeks, an active obstetric policy was used in one quarter of pregnancies, but none of the infants survived. Even at 26 weeks pregnancy, the obstetric policy was reserved and the mortality relatively high (9/31; 29%). From the neonatal deaths, 86 out of 92 (93%) were preceded by a decision either not to start or to discontinue treatment. CONCLUSION: Dutch obstetricians and neonatologists practised a reserved policy at the limits of neonatal viability. There is more need for active antenatal transfer to perinatal centres for those at the lower limit of neonatal viability to enable well-balanced decisions to take place. The parents' wishes should always be taken into account.

Is attrition bias a problem in neonatal follow-up?

AIM: To assess whether attrition rate influences outcome in the follow-up of very preterm infants. STUDY DESIGN: In a national follow-up study of infants born alive in 1983 in the Netherlands with a gestational age less than 32 weeks and/or a birth weight less than 1500 g, outcome was assessed separately for adolescents who responded early or late to a follow-up invitation at age 14 years. Neonatal data and outcome results of earlier assessments from early and late responders were compared to those of non-responders by univariate and nominal (polytomous logistic) regression analysis. SUBJECTS: There were 723 (76%) early responders, 130 (14%) late responders and 109 (11%) non-responders. RESULTS: We found significantly more non-Dutch origin and more disabilities and school problems at age 10 years in late- and especially in non-responders. At age 14 years, the health utility index was significantly lower in late responders compared to early responders. School outcome did not show difference in relation to the response groups. CONCLUSION: The results suggest that the incidence of adverse outcome in very preterm infants is underestimated when follow-up is incomplete and hence response rate is not a negligible problem in the assessment of late outcome. Therefore, follow-up studies should include a drop-out analysis to enable comparison to other studies.

Measuring health status using the Health Utilities Index: agreement between raters and between modalities of administration.

The aim of this study was to evaluate interrater and intermodality agreement in assessing health status using the Health Utilities Index. A random sample from a Dutch cohort of 14-year-old Very Low Birth Weight children and their parents were invited to participate in a face-to-face (n = 150) or telephone (n = 150) interview. All 300 participants were also sent a questionnaire by mail. Response rate was 68%. Interrater and intermodality agreement were high for the physical HUI3 attributes and poor for the psychological attributes. Children and parents reported more dysfunction in the psychological attributes when interviewed than when completing the mailed questionnaire. High agreement on the physical attributes may have resulted from the fact that hardly any dysfunction was reported in these attributes, and poor agreement in the psychological attributes may have been a result of the fact that in these attributes much more dysfunction was reported. In measuring children's health status using the HUI3, the results and their interpretation vary with the source of information and the modality of administration. For maximum comparability between studies, written self-report questionnaires seem the preferred option.

Influence of obstetric management on outcome of extremely preterm growth retarded infants.

AIM: To describe the long term outcome of extremely preterm growth retarded infants in relation to obstetric management and various perinatal events. METHODS: A cohort study was undertaken in two tertiary care centres with different obstetric management. All infants with fetal growth retardation due to placental insufficiency and resulting in fetal distress at 26 to 32 weeks of gestation, were included for the years 1984-89. Main outcome measures were impairment, disability, or handicap at 2 years corrected age and at school age (4 1/2 to 10 1/2 years). RESULTS: One hundred and twenty five (98%) were followed up until 2 years corrected age in the outpatient department; 114 (90%) were assessed at school age. Impairments were found in 37% and disabilities or handicaps in 9% of the assessed infants, with no difference between centres. All disabled or handicapped children had already been identified by 2 years corrected age. CONCLUSIONS: Disability or handicap were related to neonatal complications (intracerebral haemorrhage or bronchopulmonary dysplasia) and not to obstetric variables, thus making antenatal prediction impossible. The incidence of disability or handicap in these growth retarded infants was comparable with that of other preterm infants.

Looking back in time: outcome of a national cohort of very preterm infants born in The Netherlands in 1983.

In 1983, Dutch pediatricians collaborated on a national level and collected perinatal data on 1338 liveborn infants with a gestational age <32 weeks and/or a birthweight <1500 g (project on preterm and small for gestational age infants, POPS). Their outcome was assessed at 2 years of age by their pediatricians, at 5 years by a team of investigators, and at 9-14 years by questionnaires completed by parents, teachers, and children themselves. The overall picture that emerges from this 14-year follow-up is that a low percentage of these very preterm infants (10%) has a severe disability or handicap at school age. Although 90% of the children are without severe disabilities at school age, many of them meet serious difficulties in everyday life and the burden of mild developmental abnormalities, behavioral and learning disorders increases with age. In adolescents, it is likely that as many as 40% of the survivors will not be able to become fully independent adults. Abnormalities found during early, standardized clinical neurological examination are highly predictive for these later problems.

The viability of the preterm infant.

Viability is the capability of the liveborn infant to survive without major handicaps. Although opinions differ in the Netherlands as to the justification of starting treatment in infants of less than 26 weeks gestation, our preliminary results indicate that mortality and major-handicap rate do not differ in infants of less than 26 weeks compared to infants of 26 and 27 weeks. However, we should encourage preventive perinatal medicine in order to reduce the alarming high rate of major handicaps in all extremely preterm infants.

Randomised clinical trial on the effect of the Dutch obstetric peer review system.

The project "Obstetric Peer Review Interventions" (Verloskundige Onderlinge Kwaliteitsspiegeling Interventies, VOKSINT) was set-up in The Netherlands in 1994. It provided annual comparison data (quality ranking, league tables) for secondary care obstetric departments adjusted for population differences, based on the data registered in the Perinatal Database of The Netherlands (Landelijke Verloskunde Registratie, LVR). The aim of the so-called VOKS reports was to influence obstetricians' interventions in such a way that they led to a more homogeneous policy. To assess this influence, a trial was set-up, with departments randomly assigned to be or not to be informed about the VOKS results. Obstetric intervention rates and the morbidity of newborns including neonatal neurological examinations (NNEs) were assessed. Obstetric intervention rates were similar in the report group and the control group. Practice in the report group became more homogeneous (adjusted for population differences) than in the control departments, but this was only statistically significant for term caesarean section.

Self-reported physical disabilities in children in the Netherlands.

PURPOSE: To assess the prevalence of self-reported physical disabilities in school children, through the Child Health Monitoring System. METHODS: In 1992/1993. data were obtained in mainstream education (n = 5484), and in 1994/1995 in special education (n = 2622). The data were weighted to calculate estimates representative of the Dutch population. RESULTS: Physical disabilities were reported in 21% [20.9%; 99% confidence interval 20.0-21.8], and 5% [4.7%; 99% confidence interval 4.3-5.2] had a severe disability. Severe physical disabilities were more frequent in the youngest age group, and certain of these disabilities may be related to normal development. In older children, accidents are an important cause of disabilities. Boys had disabilities more often than girls, especially speech disabilities. Disabilities were more common among children whose parents had a low level of education. Only a minority (14%) of the children with a severe disability, reported to be restricted in the daily pursuits. CONCLUSIONS: Physical disabilities are a common health problem in school children, but they do not usually cause a handicap.

[Determination of one national standard for children with congenital anomalies in the National Obstetrical Registry and in the National Neonatal Registry]. / Opzetten van een landelijk bestand van kinderen met congenitale afwijkingen uit de Landelijke Verloskunde Registratie en de Landelijke Neonatologie Registratie.

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.

[Consensus prevention of crib death. CBO (Central Guidance Organization for Peer Review)]. / Consensus preventie van wiegendood. Centraal Begeleidingsorgaan voor de Intercollegiale Toetsing.

The sudden and unforeseen death of a child in the first two years, usually happening during a sleeping period, is known as cot death. As cot death is a very tragic and dramatic experience for the family, it is important to reduce its incidence. In the period between 1972 and 1987, the number of cot deaths initially increased, but during the last decade a substantial reduction could be observed. This fluctuation can be connected with the position in which the baby is put to sleep. From 1970 the prone sleeping position was strongly recommended. Since then, the number of cot death cases increased. From 1987, a causal relationship between the prone sleeping position and cot death was suspected. As a result the prone sleeping position was strongly advised against. A reduction of cot death cases was then observed. By now, the role of many other factors in cot death has been perceived. The risk of cot death is increased if these factors act at the same time. Some of these factors that promote cot death come from the child's environment and can be influenced when kept in mind. Apart from the prone or side sleeping position, heat congestion, unsafe bed material and smoking in the presence of the child substantially increase the risk of cot death. The main recommendations of the committee which drew up the Dutch consensus report on prevention of cot death are therefore aimed at avoiding the above mentioned risk factors. Continuation of research is necessary to further reduce the current number of some 50 cases of cot death which happen yearly in the Netherlands.

[Evaluation of the hepatitis B prevention program in newborn infants. I. National data, 1990]. / Evaluatie van het hepatitis B-preventieprogramma bij pasgeborenen. I. Landelijke gegevens, 1990.

OBJECTIVE: To evaluate the effectiveness of the national programme for prevention of perinatal hepatitis B infections. SETTING: The regional public health laboratories and provincial immunization administrations in the Netherlands. DESIGN: Retrospective evaluation. METHODS: Starting October 1989 routine screening of pregnant women for HBsAg was performed and passive-active immunisation of infants of HBsAg-positive mothers was added to the national immunisation programme. Infants receive hepatitis B immunoglobulin at birth and hepatitis B vaccine at 3,4,5, and 11 months of age, concomitant with the DTP-polio vaccine. The effectiveness of screening and intervention in 1990 was evaluated. RESULTS: Screening covered about 85% of the pregnant population and the prevalence (0.44%) was less than expected. About 60% of the infants born to HBsAg-positive mothers were registered for vaccination. Of these infants the average coverage was 83% for immunoglobulin, and 90%, 86%, 80% and 55% for the four successive hepatitis B vaccinations. There was considerable delay in vaccine administration; frequently doses were administered later than recommended. CONCLUSION: Compliance with screening and vaccination appeared incomplete. Recommendations for the simplification of the current programme are made.

[Use of health care services by children in the first 2 years of life in The Netherlands]. / Gebruik van gezondheidszorgvoorzieningen voor kinderen in de eerste 2 levensjaren in Nederland.

OBJECTIVE: To assess consumption of medical care for infants and toddlers provided by general practitioners and specialists, and of hospital admissions for young children. DESIGN: Descriptive. SETTING: Dutch Child Health Clinics (CHC). METHOD: An aselect cohort of newborns of 1988/89 of the Social Medical Survey of children attending Child health Clinics (SMOCC) were followed for two years; at maximally 8 CHC visits data were collected on the preceding interval. RESULTS: Health problems as observed in the CHCs like hearing disorders, strabismus, congenital hip dysplasia and growth disturbances were present as a cause for consultation of a GP or specialist in one out of six. Over 95% of the children went to consult their GP, 30% to a paediatrician, 20% to another specialist. Twelve per cent of the children was admitted to hospital, 10% of these more than once. Accidents caused 10% of all visits to a doctor in primary or secondary health care. Children with any form of disability at the age of two (6%) made use of the health care system as indicated in this study about three times more frequently than the non-disabled children. CONCLUSION: Nearly every child under two visited a GP, many a specialist. Timely recognition of specific health problems at the CHC prevents delay in treatment, and limits the harm in development as well as the costs.

[Folic acid use for women desiring offspring: the family physician's response]. / Foliumzuurgebruik bij zwangerschapswens: de reactie van de huisarts.

OBJECTIVE: To establish to what extent general practitioners (GP's) are familiar with the folic acid campaign of the Netherlands Bureau for Food and Nutrition Education, display a positive attitude regarding use of folic acid tablets by women who would like to become pregnant and factually provide information on folic acid. DESIGN: Cross-sectional, descriptive. SETTING: Regions: Central Brabant, Achterhoek, Randstad and Northern Netherlands. METHOD: In 1996 a printed questionnaire was sent to 300 GP's selected at random. It contained questions about knowledge, attitude and management regarding the use of folic acid by women who would like to become pregnant and with a normal risk to have a child with a neural tube defect. RESULTS: The response was high (81%). Most GP's were familiar with the national campaign on folic acid (87%), but 18% considered themselves insufficiently informed about the education campaign and/or the folic acid recommendations. Half the GP's considered use of folic acid tablets by women who would like to become pregnant as important, while two-thirds were of the opinion that it contributed to medicalization of the pregnancy. Most GP's (82%) thought that pregnant women who had not used folic acid tablets might develop feelings of guilt. Nevertheless, 64% recommended use of folic acid tablets and 63% were willing to write a prescription if the woman asked for it. Seventy-five per cent of the GP's reported that they themselves suggested use of folic acid tablets to women who they assumed would like to become pregnant, although most stated they sometimes forgot (58%). The percentages of GP's who sometimes or always suggested folic acid tablets during a contraception advice after delivery or who advised women who would like to become pregnant to switch to a diet rich in folic acid, were much smaller (29 and 37%, respectively). CONCLUSION: Although a large number of the GP's mentioned potential problems, the majority actively cooperated in promoting use of folic acid by women who would like to become pregnant.

[Impediments to incubator home care in The Netherlands]. / Belemmeringen voor couveuse-thuiszorg in Nederland.

OBJECTIVE: To determine whether incubator home care is desirable and feasible. DESIGN: Inventory. SETTING: Four neonatal units representative of the type of care in general hospitals in the Netherlands. METHOD: The relevant data on all infants with a birth weight < or = 2000 g admitted in the last 3 months of 1996 to one of four hospitals were analysed. Conditions for incubator home care were determined (e.g. absence of need for special care, vital function monitoring or nasogastric tube feeding). RESULTS: Forty-nine infants were enrolled. Mean hospital stay was 28.7 days in an incubator plus 19.7 days in a cot. When infants were placed in a cot they usually still needed tube feeding and monitoring of vital functions and sometimes parenteral nutrition, medication or extra oxygen which made home discharge impossible. Therefore a pilot study of actual home care could not be carried out. CONCLUSION: Although early home discharge is very desirable for newborn infants, the number of infants eligible for incubator home care is so small that further attempts to organise it are not useful.

[Increase in perinatal referral to regional centers of premature birth in The Netherlands: comparison 1983 and 1993]. / Toename van perinatale verwijzing naar regionale centra bij vroeggeboorte in Nederland: vergelijking van 1983 en 1993.

OBJECTIVE: To determine changes in referral of preterm newborns. DESIGN: Descriptive. SETTING: Foundation for Perinatal Epidemiology the Netherlands, Leiden. METHODS: Data regarding hospital of birth, referral, need of intensive care and mortality of the infants < 32 weeks and (or) < 1500 g birth weight born in 1993 from the National Neonatology Register were supplemented with data from a questionnaire for hospitals not included in the register. The data were compared with those of similar infants from the 'Project on preterm and small for gestational age', born in 1983. RESULTS: In 1983, 61% of the preterm infants were treated in a perinatal centre: 39% were not referred. In 1993 these numbers were 89% and 11%, respectively. The contribution of antenatal referral increased from 29% to 47% while that of postnatal referral decreased from 41% to 25%. Mortality decreased from 25.4% in 1983 to 14.3% in 1993. CONCLUSION: Regionalization of high risk perinatal care resulted in concentration of care for preterm infants. At the same time, in-hospital mortality decreased by almost 50%.

[Sequelae of premature birth: substantial medical consumption and physical limitations; survey among parents of 10-year-olds]. / Gevolgen van vroeggeboorte: veel medische consumptie en lichamelijke beperkingen; enquête onder ouders van 10-jarigen.

OBJECTIVE: To determine health and disabilities of preterm infants at age 10. DESIGN: Prospective follow-up study. SETTING: TNO Preventive en Gezondheid, sector Jeugd. Leiden, the Netherlands. METHOD: A questionnaire on medical consumption and physical disabilities was sent to the parents of a Dutch cohort of infants born alive in 1983 with a gestational age < 32 weeks and (or) a birth weight < 1500 g. The data were compared with outcomes at 5 years of age and with a peer group in mainstream education (data collected in a representative sample from the school health care system). RESULTS: Questionnaires on 75% of the eligible children were returned. Almost 40% of the preterm children had been admitted to hospital after the age of 5. Children in special education were significantly more often treated by a physiotherapist and (or) speech therapist. Overall 45% of the children suffered from a physical disability. This was six times as frequent as in a peer group from the school health survey. Although the assessment of physical disabilities was based on a paediatric examination at age 5 and on a parental questionnaire at age 10, differences were small. CONCLUSION: Mild developmental problems and learning disabilities are frequent in preterm infants. Research of preventive methods and timely interventions are needed and should be incorporated in the facilities for neonatal intensive care.

[The significance of convulsion-like signs in the first 2 years of life]. / De betekenis van convulsieachtige verschijnselen in de eerste twee levensjaren.

OBJECTIVE: Assessment of the prevalence of convulsion-like symptoms in 1854 children of Dutch-speaking mothers of a population-based birth cohort. METHOD: At each child health clinic (CHC) visit mothers were asked whether they had noted any of the following signs: loss of consciousness, involuntary movements, eye rotation movements and apnoea, and if so, whether these appeared to be related to feeding. Registration was done by the CHC physician during eight consultations. RESULTS: Convulsion-like symptoms occurred in a quarter of the children: in 8% exclusively in relation to feeding, almost without exception in the first three months of life, in 19% also without relation to feeding, continuing until the second birthday. The latter children were more frequently admitted into hospital, even for non-neurological problems, than the former or than children without any such signs. They also have more disabilities at the age of two years. No connection with epilepsy in the family or with congenital anomalies could be demonstrated. CONCLUSION: Convulsion-like symptoms were observed in a quarter of children up to the age of two years. Special attention should be paid by the CHC team to children with signs not connected with feeding.

[Prevalence of neural tube defects in births before and after promotion of periconceptional folic acid supplementation]. / Geboorteprevalentie van neuralebuisdefecten voor en na campagne voor periconceptioneel foliumzuurgebruik.

OBJECTIVE: To describe the incidence and the expected clinical picture of neural tube defects (NTD) in years when periconceptional folic acid use increased. DESIGN: Descriptive. METHOD: Data on the prevalence of NTD in the Netherlands in 1994-1998 and on the prognosis at the time of the report obtained from the Nederlands Signalerings Centrum Kindergeneeskunde (Netherlands Paediatric Spotting Centre), where all practising physicians in the Netherlands monthly report children in whom a rare disease has been diagnosed. Prevalence figures from before and after 1996 were compared, because periconceptional use of folic acid increased since late 1996. RESULTS: In 1994-1998, 414 children with NTD were reported, 164 boys, 191 girls and 59 unreported. The prevalence of NTD was 4.6 per 10,000 live births (95% confidence interval (CI): 3.7-5.6) compared with 3.8 per 10,000 live births (95% CI: 2.9-4.6) in the period 1997-1998. Of the 414 children, 257 had a meningomyelocele; the early mortality in this group amounted to 37%. Hydrocephalus was found in 84.8% of the infants, 40.9% of the infants were believed never be able to sit, stand, and walk. CONCLUSION: The prevalence of NTD was lower in the period 1997-1998 than in the period 1994-1996 although the difference was not statistically significant.