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    <title>Bonsel, G.J.</title>
    <link>http://repub.eur.nl/res/aut/13525/</link>
    <description>List of Publications</description>
    <language>en</language>
    <image>
      <url>http://repub.eur.nl/static-eur/img/logo.png</url>
      <title>RePub, Erasmus University Rotterdam</title>
      <link>http://repub.eur.nl</link>
    </image>
    <item>
      <title>Inequalities in perinatal and maternal health (Article)</title>
      <link>http://repub.eur.nl/res/pub/39361/</link>
      <pubDate>2013-04-01T00:00:00Z</pubDate>
      <description>Purpose of Review: To describe inequalities in perinatal and maternal mortality, and morbidity from an international high-income country perspective. Measures of inequalities are socioeconomic status, ethnic background, and living area. Recent Findings: Despite decreasing overall perinatal and maternal mortality in high-income countries, perinatal and maternal health inequalities persist. Inequalities in fetal, neonatal, and maternal adverse outcome relate to specific groups of risk factors. They commonly have a background in so-called structural risk factors, that is low level of education and income, being a migrant and living in disadvantaged areas. Structural risk factors therefore drive inequalities, and simultaneously represent the common perspective to judge perinatal and maternal health gaps. The effect of risk factors is further magnified in urban areas through risk accumulation.As mother and child share their background, neonatal, and maternal adverse health outcome patterns coincide, resulting in similar inequalities and similar epidemiological trends. The structural background explains the difficulty of improving this. Summary: Inequalities in perinatal and maternal outcome persist in women from lower socioeconomic groups, from specific ethnic groups, and from those living in deprived areas. In view of the lifelong consequences, these marked social disparities pose an important challenge for the political decision makers and the healthcare system. </description>
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      <title>Social deprivation and adverse perinatal outcomes among Western and non-Western pregnant women in a Dutch urban population (Article)</title>
      <link>http://repub.eur.nl/res/pub/39626/</link>
      <pubDate>2013-04-01T00:00:00Z</pubDate>
      <description>Social deprivation is considered a key factor in adverse perinatal outcomes. Rotterdam, the second largest city in The Netherlands, has large inequalities in perinatal health and a high number of deprived neighbourhoods. Social deprivation is measured here through a composite variable: 'Social Index' (SI). We studied the impact of the SI (2008-2009; 5 categories) in terms of perinatal mortality, congenital anomalies, preterm birth, small for gestational age (SGA) and low 5-minute Apgar score as registered in The Netherlands Perinatal Registry (Rotterdam 2000-2007, n = 56,443 singleton pregnancies). We applied ethnic dichotomisation as Western (European/North-American/Australian) vs. Non-Western (all others) ethnicity was expected to interact with the impact of SI. Tests for trend and multilevel regression analysis were applied. Gradually decreasing prevalence of adverse perinatal outcomes was observed in Western women from the lowest SI category (low social quality) to the highest SI category (high social quality). In Western women the low-high SI gradient for prevalence of spontaneous preterm birth (per 1000) changed from 57.2 to 34.1, for iatrogenic preterm birth from 35.2 to 19.0, for SGA from 119.6 to 59.4, for low Apgar score from 10.9 to 8.2, and for perinatal mortality from 14.9 to 7.6. These trends were statistically confirmed by Chi2-tests for trend (p &lt; 0.001). For non-Western women such trends were absent. These strong effects for Western women were confirmed by significant odds ratios for almost all adverse perinatal outcomes estimated from multilevel regression analysis. We conclude social deprivation to play a different role among Western vs. non-Western women. Our results suggest that improvements in social quality may improve perinatal outcomes in Western women, but alternative approaches may be necessary for non-Western groups. Suggested explanations for non-Western 'migrant' groups include the presence of 'protective' effects through knowledge systems or intrinsic resilience. Implications concern both general and targeted policies. © 2013 Elsevier Ltd.</description>
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      <title>Living in deprived urban districts increases perinatal health inequalities (Article)</title>
      <link>http://repub.eur.nl/res/pub/40013/</link>
      <pubDate>2013-03-01T00:00:00Z</pubDate>
      <description>Objective: Analyses of the effects of place of residence, socioeconomic status and ethnicity on perinatal mortality and morbidity in the Netherlands. Methods: Epidemiological analysis of all singleton deliveries &gt; 22 gestational weeks (871,889 live born and 5927 stillborn) from the Dutch National Perinatal Registry 2002-2006. Multiple logistic regression analysis was used to determine whether place of residence (deprived neighborhood, or not) contributed to the adverse perinatal outcome (defined as perinatal mortality, preterm birth, small for gestational age, congenital abnormalities or Apgar score &lt;7, 5min after birth), additional to individual pregnancy characteristics, demographic characteristics, ethnic background and socioeconomic class. Results: Incidence of adverse perinatal outcome was 16.7%. After adjustment the excess risk for perinatal mortality in deprived districts was 21%, for preterm birth 16%, for small-for-gestational age 11%, and for Apgar score &lt;7 after 5min 11%. Conclusions: Perinatal inequalities appear impressive in both urban and nonurban areas, with a significant additive risk of living in a deprived neighborhood. Excess risk for perinatal mortality generally outranges that for morbidity, suggesting both an etiological and prognostic pathway for neighborhood effects. A distinct pattern exists for congenital anomalies, for which first trimester adverse selection effects may be responsible. </description>
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      <title>An urban perinatal health programme of strategies to improve perinatal health (Article)</title>
      <link>http://repub.eur.nl/res/pub/31073/</link>
      <pubDate>2012-11-01T00:00:00Z</pubDate>
      <description>Promotion of a healthy pregnancy is a top priority of the health care policy in many European countries. Perinatal mortality is an important indicator of the success of this policy. Recently, it was shown that the Netherlands has relatively high perinatal death rates when compared to other European countries. This is in particular true for large cities where perinatal mortality rates are 20-50% higher than elsewhere. Consequently in the Netherlands, there is heated debate on how to tackle these problems. Without the introduction of measures throughout the entire perinatal health care chain, pregnancy outcomes are difficult to improve. With the support of health care professionals, the City of Rotterdam and the Erasmus University Medical Centre have taken the initiative to develop an urban perinatal health programme called 'Ready for a Baby'. The main objective of this municipal 10-year programme is to improve perinatal health and to reduce perinatal mortality in all districts to at least the current national average of 10 per 1000. Key elements are the understanding of the mechanisms of the large health differences between women living in deprived and nondeprived urban areas. Risk guided care, orientation towards shared-care and improvement of collaborations between health care professionals shapes the interventions that are being developed. Major attention is given to the development of methods to improve risk-selection before and during pregnancy and methods to reach low-educated and immigrant groups. </description>
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      <title>Determinants of the intention of preconception care use: lessons from a multi-ethnic urban population in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/34897/</link>
      <pubDate>2012-08-08T00:00:00Z</pubDate>
      <description>Objectives: To investigate the determinants of the intention of preconception care use of women in a multi-ethnic urban population. Methods: The ASE-model-a health behaviour model-was used as an explanatory framework. A representative sample was taken from the municipal population registers of two districts in Rotterdam, the Netherlands, 2009-2010. 3,225 women (aged 15-60 years) received a questionnaire, which was returned by 631: 133 Dutch, 157 Turkish and Moroccan, and 341 Surinamese and Antillean. Descriptive, univariate and multivariate analyses were performed. Results: The multiple logistic analyses showed that intention to attend preconception care was significantly higher in women with a Turkish and Moroccan background (β 1.02, P = 0.006), a higher maternal age (β 0.04, P = 0.008) and a positive attitude (β 0.50, P &lt; 0.001). Having no relationship (β -1.16, P = 0.004), multiparity with previous adverse perinatal outcome (β -1.32, P = 0.001), a high educational level (β -1.23, P = 0.03), having paid work (β -0.72, P = 0.01) and experienced barriers level (β -0.15, P = 0.003) were associated with less intention to use preconception care. Conclusions: Modifiable determinants as attitude and barriers can be addressed to enhance preconception care attendance. </description>
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      <title>Posttraumatic stress symptoms and health-related quality of life: A two year follow up study of injury treated at the emergency department (Article)</title>
      <link>http://repub.eur.nl/res/pub/35014/</link>
      <pubDate>2012-01-09T00:00:00Z</pubDate>
      <description>Background: Among injury victims relatively high prevalence rates of posttraumatic stress disorder (PTSD) have been found. PTSD is associated with functional impairments and decreased health-related quality of life (HRQoL). Previous studies that addressed the latter were restricted to injuries at the higher end of the severity spectrum. This study examined the association between PTSD symptoms and health-related quality of life (HRQoL) in a comprehensive population of injury patients of all severity levels and external causes.Methods: We conducted a self-assessment survey which included items regarding demographics of the patient, accident type, sustained injuries, EuroQol health classification system (EQ-5D) and Health Utilities Index (HUI) to measure functional outcome and HRQoL, and the Impact of Event Scale (IES) to measure PTSD symptoms. An IES-score of 35 or higher was used as indication for the presence of PTSD. The survey was completed by 1,781 injury patients two years after they were treated at the Emergency Department (ED), followed by either hospital admission or direct discharge to the home environment.Results: Symptoms indicative of PTSD were associated with more problems on all EQ-5D and HUI3 domains of functional outcome and a considerable utility loss in both hospitalized (0.23-0.24) and non-hospitalized (0.32-0.33) patients. Differences in reported problems between patients with IES scores higher or lower than 35 were largest for EQ-5D health domains pain/discomfort (82% versus 28%) and anxiety/depression (53% versus 11%) and HUI domains emotion (92% versus 33%) and pain (84% versus 38%). After adjusting for potential confounders, PTSD remained strongly associated with adverse HRQoL.Conclusions: Among patients treated at an ED posttraumatic stress symptoms indicative of PTSD were associated with a considerable decrease in HRQoL in both hospitalized and non-hospitalized patients. PTSD symptoms may therefore raise a major barrier for full recovery of injury patients of even minor levels of severity. </description>
    </item> <item>
      <title>??? (Article)</title>
      <link>http://repub.eur.nl/res/pub/38356/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>Mede vanwege de hoge Rotterdamse perinatale sterfte en -morbiditeit is in 2008 het meerjarig programma Klaar voor een
Kind van start gegaan. Hiermee wil de Gemeente Rotterdam in samenwerking met het Erasmus MC en de GGD Rotterdam
Rijnmond de perinatale sterfte en -morbiditeit binnen Rotterdam verminderen. Gebruik makend van de Perinatale
Registratie Nederland 2000-2007 (n=56.443 eenling zwangerschappen) is gekeken naar het voorkomen van perinatale
sterfte en ziekte in de verschillende Rotterdamse deelgemeenten, zowel absoluut als gestandaardiseerd. Hierbij lag het
accent op de zogenoemde ‘Big4’ aandoeningen: aangeboren afwijkingen, vroeggeboorte, laag geboortegewicht gelet op de
zwangerschapsduur en een lage Apgar score. Daarnaast zijn ook enkele kenmerken met betrekking tot de zwangere en haar
zwangerschap bekeken. Binnen Rotterdam blijken er grote verschillen te bestaan in perinatale sterfte en -morbiditeit tussen
verschillende deelgemeenten. De achtergrond verschilt hoogstwaarschijnlijk per deelgemeente. Waar het in de ene deelgemeente
veelal een gecombineerd probleem is van zorgfactoren en omgevingsfactoren zal het in de andere deelgemeente
voornamelijk een kwestie zijn van kenmerken van de zwangere zelf (bijvoorbeeld leefstijl, leeftijd of etniciteit). Deze
gegevens zijn van groot belang bij het ontwikkelen van beleid gericht op deelgemeente specifieke problemen ter vermindering
van de perinatale sterfte en -morbiditeit binnen de stad Rotterdam.</description>
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      <title>Planned Home Compared With Planned Hospital Births in the Netherlands: Intrapartum and Early Neonatal Death in Low-Risk Pregnancies (Letter To Editor)</title>
      <link>http://repub.eur.nl/res/pub/38368/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>We read with interest the article by van
der Kooy et al reporting on planned
home compared with planned hospital
births.1 We previously have reported
on the same question in the same cohort
and found no difference between
the two groups. 2 The authors state that
previous studies have compared outcomes
after exclusion of pregnant
women who, in view of the delivery
guidelines, should not deliver at home.
Second, they state that previous studies
did not apply case-mix analysis, assuming
risk equivalence of the home and
hospital groups.</description>
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      <title>Contribution of Primary Pelvic Organ Prolapse to Micturition and Defecation Symptoms (Article)</title>
      <link>http://repub.eur.nl/res/pub/38402/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>Objective. To investigate the contribution of Pelvic Organ Prolapse (POP) to micturition and defecation symptoms. Method. Cross-sectional study including 64 women presenting with POP symptoms and 50 controls without POP complaints. Subjects were evaluated using POP-Quantification system, Urinary Distress Inventory, and Defecation Distress Inventory. The MOS SF-36 health survey and the Center for Epidemiological Studies Depression scale were used to measure self-perceived health status and depressive symptoms, respectively. Results. POP in terms of POP-Q had a moderate impact on the symptom observing vaginal protrusion (explained variance 0.31). It contributed modestly to obstructive voiding and overactive bladder symptoms (explained variance 0.09, resp., 0.14) but not to urinary incontinence. Constipation was more likely explained by clinical depression than by pelvic floor defects (explained variance 0.13, resp., 0.05). Conclusion. Stage of POP and specific prolapse symptoms are associated but such a strong association does not exist between POP and micturition or defecation symptoms.</description>
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      <title>Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L) (Article)</title>
      <link>http://repub.eur.nl/res/pub/33985/</link>
      <pubDate>2011-12-01T00:00:00Z</pubDate>
      <description>This article introduces the new 5-level EQ-5D (EQ-5D-5L) health status measure. EQ-5D currently measures health using three levels of severity in five dimensions. A EuroQol Group task force was established to find ways of improving the instrument's sensitivity and reducing ceiling effects by increasing the number of severity levels. The study was performed in the United Kingdom and Spain. Severity labels for 5 levels in each dimension were identified using response scaling. Focus groups were used to investigate the face and content validity of the new versions, including hypothetical health states generated from those versions. Selecting labels at approximately the 25th, 50th, and 75th centiles produced two alternative 5-level versions. Focus group work showed a slight preference for the wording 'slight-moderate-severe' problems, with anchors of 'no problems' and 'unable to do' in the EQ-5D functional dimensions. Similar wording was used in the Pain/Discomfort and Anxiety/Depression dimensions. Hypothetical health states were well understood though participants stressed the need for the internal coherence of health states. A 5-level version of the EQ-5D has been developed by the EuroQol Group. Further testing is required to determine whether the new version improves sensitivity and reduces ceiling effects. </description>
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      <title>Obstetrical outcome valuations by patients, professionals, and laypersons: Differences within and between groups using three valuation methods (Article)</title>
      <link>http://repub.eur.nl/res/pub/34340/</link>
      <pubDate>2011-11-12T00:00:00Z</pubDate>
      <description>Background: Decision-making can be based on treatment preferences of the patient, the doctor, or by guidelines based on lay people's preferences. We compared valuations assigned by three groups: patients, obstetrical care professionals, and laypersons, for health states involving both mother and (unborn) child. Our aim was to compare the valuations of different groups using different valuation methods and complex obstetric health outcome vignettes that involve both maternal and neonatal outcomes.Methods: Patients (n = 24), professionals (n = 30), and laypersons (n = 27) valued the vignettes using three valuation methods: visual analogue scale (VAS), time trade-off (TTO), and discrete choice experimentation (DCE). Each vignette covered five health attributes: maternal health ante partum, time between diagnosis and delivery, process of delivery, maternal outcome, and neonatal outcome. We used feasibility questionnaires, Generalization theory, test-retest reliability and within-group reliability to compare the valuation patterns between groups and methods. We assessed relative weights from each valuation method to test for consistency across groups.Results: Test-retest reliability was equal across groups, but different across methods: highest for VAS (ICC = 0.61-0.73), intermediate for TTO (ICC = 0.24-0.74) and lowest for DCE (kappa = 0.15-0.37). Within-group reliability was highest in all groups with VAS (ICC = 0.70-0.73), intermediate with DCE (kappa = 0.56-0.76) and lowest with TTO (ICC = 0.20-0.66). Effects of groups were smaller than effects of methods. Differences between groups were largest for severe health states.Conclusion: Based on our results, decision making among laypersons should use TTO or DCE; patients should use VAS or TTO. </description>
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      <title>Planned home compared with planned hospital births in the netherlands: Intrapartum and early neonatal death in low-risk pregnancies (Article)</title>
      <link>http://repub.eur.nl/res/pub/33222/</link>
      <pubDate>2011-11-01T00:00:00Z</pubDate>
      <description>Objective: The purpose of our study was to compare the intrapartum and early neonatal mortality rate of planned home birth with planned hospital birth in community midwife-led deliveries after case mix adjustment. Methods: The perinatal outcome of 679,952 low-risk women was obtained from the Netherlands Perinatal Registry (2000-2007). This group represents all women who had a choice between home and hospital birth. Two different analyses were performed: natural prospective approach (intention-to-treat-like analysis) and perfect guideline approach (per-protocol-like analysis). Unadjusted and adjusted odds ratios (ORs) were calculated. Case mix was based on the presence of at least one of the following: congenital abnormalities, small for gestational age, preterm birth, or low Apgar score. We also investigated the potential risk role of intended place of birth. Multivariate stepwise logistic regression was used to investigate the potential risk role of intended place of birth. Results: Intrapartum and neonatal death at 0-7 days was observed in 0.15% of planned home compared with 0.18% in planned hospital births (crude relative risk 0.80, 95% confidence interval [CI] 0.71-0.91). After case mix adjustment, the relation is reversed, showing nonsignificant increased mortality risk of home birth (OR 1.05, 95% CI 0.91-1.21). In certain subgroups, additional mortality may arise at home if risk conditions emerge at birth (up to 20% increase). Conclusion: Home birth, under routine conditions, is generally not associated with increased intrapartum and early neonatal death, yet in subgroups, additional risk cannot be excluded. </description>
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      <title>Eliciting willingness to pay in obstetrics: Comparing a direct and an indirect valuation method for complex health outcomes (Article)</title>
      <link>http://repub.eur.nl/res/pub/34142/</link>
      <pubDate>2011-11-01T00:00:00Z</pubDate>
      <description>Objective: To compare direct and indirect willingness to pay (WTP) elicitation methods in terms of feasibility, reliability, and comparability. The application is obstetrics, where always both a mother's and a child's health are at stake. Methods: An open-ended contingent valuation method (CVM) as a direct WTP elicitation method, and the discrete choice experiment (DCE) as an indirect WTP elicitation method. Vignettes to be valued were based on clinical patient data. Participants were 88 laypersons who received their questionnaires by postal mail. Results: The DCE task was completed faster (p = 0.006) and was regarded easier (p&lt;0.001) than the CVM task. Test-retest for CVM was substantial (ICC = 0.76), and for DCE moderate (k = 0.49). Female sex (p&lt;0.001), age ≥50 years (p = 0.013), higher income (p&lt;0.001), and higher education (p&lt;0.001) were associated with higher WTP. Correlation between CVM and DCE was 0.79 (Kendall's Tau-b; p&lt;0.001). The implied WTP as derived with DCE was between 2.3 and 10.2 times higher than with CVM. The relationship between the WTPs was linear. Conclusion: It is yet unclear what lies behind the numbers of DCE. DCE has no methodological benefits over the conventional CVM when eliciting WTP for complex health outcomes in obstetrics. Copyright </description>
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      <title>Cost-effectiveness of additional blood screening tests in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/31102/</link>
      <pubDate>2011-09-05T00:00:00Z</pubDate>
      <description>Background: During the past decade, blood screening tests such as triplex nucleic acid amplification testing (NAT) and human T-cell lymphotropic virus type I or I (HTLV-I/II) antibody testing were added to existing serologic testing for hepatitisB virus (HBV), human immunodeficiency virus (HIV), and hepatitisC virus (HCV). In some low-prevalence regions these additional tests yielded disputable benefits that can be valuated by cost-effectiveness analyses (CEAs). CEAs are used to support decision making on implementation of medical technology. We present CEAs of selected additional screening tests that are not uniformly implemented in the EU. Study Design And Methods: Cost-effectiveness was analyzed of: 1) HBV, HCV, and HIV triplex NAT in addition to serologic testing; 2) HTLV-I/II antibody test for all donors, for first-time donors only, and for pediatric recipients only; and 3) hepatitisA virus (HAV) for all donations. Disease progression of the studied viral infections was described in five Markov models. Results: In the Netherlands, the incremental cost-effectiveness ratio (ICER) of triplex NAT is €5.20 million per quality-adjusted life-year (QALY) for testing minipools of six donation samples and €4.65 million/QALY for individual donation testing. The ICER for anti-HTLV-I/II is €45.2 million/QALY if testing all donations, €2.23 million/QALY if testing new donors only, and €27.0 million/QALY if testing blood products for pediatric patients only. The ICER of HAV NAT is €18.6 million/QALY. Conclusion: The resulting ICERs are very high, especially when compared to other health care interventions. Nevertheless, these screening tests are implemented in the Netherlands and elsewhere. Policy makers should reflect more explicit on the acceptability of costs and effects whenever additional blood screening tests are implemented. </description>
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      <title>Health-related quality of life after induction of labor versus expectant monitoring in gestational hypertension or preeclampsia at term (Article)</title>
      <link>http://repub.eur.nl/res/pub/34181/</link>
      <pubDate>2011-08-01T00:00:00Z</pubDate>
      <description>Objective. Gestational hypertension (GH) and preeclampsia (PE) are major contributors to maternal and neonatal morbidity and mortality. In GH or PE, labor may be either induced or monitored expectantly. We studied maternal health-related quality of life (HR-QoL) after induction of labor versus expectant monitoring in GH or PE at term. We performed the HR-QoL study alongside a multicenter randomized controlled trial comparing induction of labor to expectant monitoring in women with GH or PE after 36 weeks. Methods. We used written questionnaires, covering background characteristics, condition-specific issues, and validated measures: the Short-Form (SF-36), European Quality of Life (EuroQoL 6D3L), Hospital Anxiety and Depression Scale (HADS), and Symptom Checklist (SCL-90). Measurements were at the following time points: baseline, 6 weeks postpartum, and 6 months postpartum. A multivariate mixed model with repeated measures was defined to assess the effect of the treatments on the physical component score (PCS) and mental component score (MCS) of the SF-36. Analysis was by intention to treat. Results. We analyzed the data of 491 randomized and 220 nonrandomized women. We did not find treatment effect on long-term HR-QoL (PCS: p = 0.09; MCS: p = 0.82). The PCS improved over time (p &lt; 0.001) and was better in nonrandomized patients (p = 0.02). Conclusion. Despite a clinical benefit of induction of labor, long-term HR-QoL is equal after the induction of labor and expectant management in women with GH or PE beyond 36 weeks of gestation. </description>
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      <title>Manifest disease, risk factors for sudden cardiac death, and cardiac events in a large nationwide cohort of predictively tested hypertrophic cardiomyopathy mutation carriers: Determining the best cardiological screening strategy (Article)</title>
      <link>http://repub.eur.nl/res/pub/33685/</link>
      <pubDate>2011-05-01T00:00:00Z</pubDate>
      <description>Aims We investigated the presence of a clinical diagnosis of hypertrophic cardiomyopathy (HCM), risk factors for sudden cardiac death (SCD), and cardiac events during follow-up in predictively tested-not known to have a clinical diagnosis of HCM before the DNA test-carriers of a sarcomeric gene mutation and associations with age and gender to determine the best cardiological screening strategy. Methods and results One hundred and thirty-six (30%) of 446 mutation carriers were diagnosed with HCM at one or more cardiological evaluation(s). Male gender and higher age were associated with manifest disease. Incidence of newly diagnosed manifest HCM was &lt;10% per person-year under the age of 40 years and &gt; 10% in older carriers, although numbers were small in carriers &lt;15 years. Twenty-three percent of carriers, with and without manifest disease, had established risk factor(s) for SCD (no significant difference). During an average follow-up of 3.5±1.7 years two carriers, both with manifest disease, died suddenly (0.13% per person-year). A high-risk status for SCD (≥2 risk factors and manifest HCM) was present in 17 carriers during follow-up (2.4% per person-year). Age but not gender was associated with a high-risk status for SCD. Conclusion Thirty percent of carriers had or developed manifest HCM after predictive DNA testing and risk factors for SCD were frequently present. Our data suggest that the SCD risk is low and risk stratification for SCD can be omitted in carriers without manifest disease and that frequency of cardiological evaluations can possibly be decreased in carriers between 15 and 40 years as long as hypertrophy is absent. </description>
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      <title>Results from simulated data sets: Probabilistic record linkage outperforms deterministic record linkage (Article)</title>
      <link>http://repub.eur.nl/res/pub/33963/</link>
      <pubDate>2011-05-01T00:00:00Z</pubDate>
      <description>Objective: To gain insight into the performance of deterministic record linkage (DRL) vs. probabilistic record linkage (PRL) strategies under different conditions by varying the frequency of registration errors and the amount of discriminating power. Study Design and Setting: A simulation study in which data characteristics were varied to create a range of realistic linkage scenarios. For each scenario, we compared the number of misclassifications (number of false nonlinks and false links) made by the different linking strategies: deterministic full, deterministic N-1, and probabilistic. Results: The full deterministic strategy produced the lowest number of false positive links but at the expense of missing considerable numbers of matches dependent on the error rate of the linking variables. The probabilistic strategy outperformed the deterministic strategy (full or N-1) across all scenarios. A deterministic strategy can match the performance of a probabilistic approach providing that the decision about which disagreements should be tolerated is made correctly. This requires a priori knowledge about the quality of all linking variables, whereas this information is inherently generated by a probabilistic strategy. Conclusion: PRL is more flexible and provides data about the quality of the linkage process that in turn can minimize the degree of linking errors, given the data provided. </description>
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      <title>The effect of comorbidity on health-related quality of life for injury patients in the first year following injury: Comparison of three comorbidity adjustment approaches (Article)</title>
      <link>http://repub.eur.nl/res/pub/26446/</link>
      <pubDate>2011-04-24T00:00:00Z</pubDate>
      <description>Background: Three approaches exist to deal with the impact of comorbidity in burden of disease studies - the maximum limit approach, the additive approach, and the multiplicative approach. The aim of this study was to compare the three comorbidity approaches in patients with temporary injury consequences as well as comorbid chronic conditions with nontrivial health impacts.Methods: Disability weights were assessed using data from the EQ-5D instrument developed by the EuroQol Group and derived from a postal survey among 2,295 injury patients at 2.5 and 9 months after being treated at an emergency department. We compared the observed and predicted EQ-5D disability weights in comorbid cases using data from injury patients with and without comorbidity who were restored from their injuries at 9 months follow-up. The predicted disability weights were calculated using the maximum limit approach, additive approach, and multiplicative approach. The intraclass correlation coefficient (ICC) was used to test whether the values of the observed disability weights and the three model-predicted disability weights were correlated.Results: The EQ-5D disability weight of injury patients increased significantly with the number of comorbid diseases. The ICCs of the additive, multiplicative, and maximum limit models were 0.817, 0.778, and 0.674, respectively. Although the 95% confidence intervals of the ICCs of the three models overlap, the maximum limit model seems to fit less well than the additive and multiplicative models. For mild to moderate chronic disease (disability weight below 0.21), the association between predicted and observed disability weights was low.Conclusions: Comorbidity has a high impact on disability measured with EQ-5D. Ignoring the effect of comorbidity restricts the use of the burden of disease concept in multimorbid populations. Gains from health care or interventions may be easily overestimated if a substantial number of patients suffer from additional conditions. The results of this study found that in accounting for comorbidity effects, all three models showed a strong association between the predicted and observed morbid disability weight, though the maximum limit model seems to fit less well than the additive and multiplicative models. The three models do not fit well in the case of mild to moderate pre-existing disease. </description>
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      <title>Maternal health-related quality of life after induction of labor or expectant monitoring in pregnancy complicated by intrauterine growth retardation beyond 36 weeks (Article)</title>
      <link>http://repub.eur.nl/res/pub/34082/</link>
      <pubDate>2011-04-06T00:00:00Z</pubDate>
      <description>Objective: Pregnancies complicated by intrauterine growth retardation (IUGR) beyond 36 weeks of gestation are at increased risk of neonatal morbidity and mortality. Optimal treatment in IUGR at term is highly debated. Results from the multicenter DIGITAT (Disproportionate Intrauterine Growth Intervention Trial At Term) trial show that induction of labor and expectant monitoring result in equal neonatal and maternal outcomes for comparable cesarean section rates. We report the maternal health-related quality of life (HR-QoL) that was measured alongside the trial at several points in time. Methods: Both randomized and non-randomized women were asked to participate in the HR-QoL study. Women were asked to fill out written validated questionnaires, covering background characteristics, condition-specific issues and the Short Form (SF-36), European Quality of Life (EuroQoL 6D3L), Hospital Anxiety and Depression scale (HADS), and Symptom Check List (SCL-90) at baseline, 6 weeks postpartum and 6 months postpartum. We compared the difference scores of all summary measures between the two management strategies by ANOVA. A repeated measures multivariate mixed model was defined to assess the effect of the management strategies on the physical (PCS) and mental (MCS) components of the SF-36. Analysis was by intention to treat. Results: We analyzed data of 361 randomized and 198 non-randomized patients. There were no clinically relevant differences between the treatments at 6 weeks or 6 months postpartum on any summary measures; e.g., on the SF-36 (PCS: P = .09; MCS: P = .48). The PCS and the MCS were below norm values at inclusion. The PCS improved over time but stayed below norm values at 6 months, while the MCS did not improve. Conclusion: In pregnancies complicated by IUGR beyond 36 weeks, induction of labor does not affect the long-term maternal quality of life. </description>
    </item> <item>
      <title>Maternal vitamin B-12 and folate status during pregnancy and excessive infant crying (Article)</title>
      <link>http://repub.eur.nl/res/pub/33875/</link>
      <pubDate>2011-04-01T00:00:00Z</pubDate>
      <description>Background: The etiology of excessive infant crying is largely unknown. We hypothesize that excessive infant crying may have an early nutritional origin during fetal development. Aims: This study is the first to explore whether (1) maternal vitamin B-12 and folate status during pregnancy are associated with excessive infant crying, and (2) whether and how maternal psychological well-being during pregnancy affects these associations. Study design: Women were approached around the 12th pregnancy week to complete a questionnaire (n = 8266) and to donate a blood sample (n = 4389); vitamin B-12 and folate concentrations were determined in serum. Infant crying behavior was measured through a postpartum questionnaire (± 3 months; n = 5218). Subjects: Pregnant women living in Amsterdam and their newborn child. Outcome measures: Excessive infant crying, defined as crying ≥3 h/day on average in the past week. Results: Multiple logistic regression analysis was performed for 2921 (vitamin B-12) and 2622 (folate) women.Vitamin B-12 concentration (categorized into quintiles) was associated with excessive infant crying after adjustment for maternal age, parity, ethnicity, education, maternal smoking and psychological problems (OR[95%CI]: Q1 = 3.31[1.48-7.41]; Q2 = 2.50[1.08-5.77]; Q3 = 2.59[1.12-6.00]; Q4 = 2.77[1.20-6.40]; Q5 = reference). Stratified analysis suggested a stronger association among women with high levels of psychological problems during pregnancy. Folate concentration was not associated with excessive infant crying. Conclusions: First evidence is provided for an early nutritional origin in excessive infant crying. A low maternal vitamin B-12 status during pregnancy could, in theory, affect infant crying behavior through two potential mechanisms: the methionine-homocysteine metabolism and/or the maturation of the sleep-wake rhythm. </description>
    </item> <item>
      <title>Urban perinatal health inequalities (Article)</title>
      <link>http://repub.eur.nl/res/pub/34393/</link>
      <pubDate>2011-04-01T00:00:00Z</pubDate>
      <description>Objective. Large urban areas have higher perinatal mortality rates. In attaining a better understanding, we conducted an analysis on a neighborhood level in Rotterdam, the second largest city of The Netherlands. Methods. Perinatal outcome of all single pregnancies (50,000) was analyzed for the period of 2000-2006. The prevalences of perinatal mortality and perinatal morbidity were determined for every neighborhood. Results. Large perinatal health inequalities exist between neighborhoods in the city of Rotterdam with perinatal mortality rates as high as 37 per 1000 births. The highest risks were observed in deprived neighborhoods. Conclusion. We observed high levels of perinatal health inequalities in the city of Rotterdam which have not been previously described in the Western world. Accumulation of medical risk factors as well as socioeconomic and urban risk factors seems to be a likely contributor. </description>
    </item> <item>
      <title>Validation of self-reported folic acid use in a multiethnic population: results of the Amsterdam Born Children and their Development study (Article)</title>
      <link>http://repub.eur.nl/res/pub/22797/</link>
      <pubDate>2011-02-16T00:00:00Z</pubDate>
      <description>OBJECTIVE: To assess folic acid supplementation rates and validate the self-reporting of folic acid supplement use among pregnant women in a multiethnic cohort. DESIGN: Secondary analysis of a prospective cohort study. SETTING: Self-reported folic acid supplement use in the Amsterdam Born Children and their Development study cohort was compared with serum folate concentrations using non-parametric trend analysis and linear and logistic regression. SUBJECTS: A total of 4234 pregnant women of various ethnic backgrounds. RESULTS: Serum folate levels showed a significant positive linear trend as reported use of folic acid increased (P &lt; 0·001), which was supported by linear regression (r = 0·49). Odds of having low serum folate concentration decreased with reported early start of folic acid intake. Young, multiparous or non-Western women reported less pre-conception folic acid intake. Non-Western women showed lower serum folate concentrations. The overall rate of over-reporting, i.e. serum folate concentrations ≤20 nmol/l while reporting the use of folic acid supplements, was 20·7 %. Women of Surinamese and Moroccan ancestry had higher odds of over-reporting (OR = 2·3; 95 % CI 1·5, 3·5 and OR = 2·3; 95 % CI 1·3, 4·0, respectively). The odds for Surinamese women remained significant after adjusting for the onset of supplement use, parity and age (OR = 1·7; 95 % CI 1·1, 2·6). CONCLUSIONS: Although self-reporting is a valid method for assessing folic acid supplement use in a multiethnic population, some participants do over-report. Surinamese and possibly Moroccan women appear to over-report more often. Rates of supplementation are low, especially in non-Western women. This suggests the need for intensifying current campaigns or perhaps even additional advice to start or continue to use folic acid post-conceptionally.</description>
    </item> <item>
      <title>Survival after transfusion in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/22926/</link>
      <pubDate>2011-02-01T00:00:00Z</pubDate>
      <description>Background Cost-effectiveness analyses of blood safety interventions require estimates of the life expectancy after blood product transfusion. These are best derived from survival after blood transfusion, per age group and blood component type.Study design and methods In the PROTON (PROfiles of TransfusiON recipients) study transfusion recipient data was collected from a hospital sample covering 28% of the total blood use between 1996 and 2006 in the Netherlands. The dataset includes date of transfusion, blood component type transfused and recipient identification details. PROTON data were individually matched to mortality data of the Netherlands. Survival after first transfusion and after any transfusion was calculated, per blood component type and age group. PROTON mortality rates were compared to mortality rates in the general population. The results were used to estimate survival beyond the study period and to estimate life expectancy after transfusion.Results Of all 2 405 012 blood product transfusions in the PROTON dataset, 92% was matched to the national Dutch Municipal Population Register, which registers all deaths. After 1 year, survival after any transfusion was 65.4%, 70.4% and 53.9% for RBC, FFP and PLT respectively. After 5 years, this was 46.6%, 58.8% and 39.3% for RBC, FFP and PLT, respectively. Ten years after transfusion, mortality rates of recipients are still elevated in comparison with the general population.Conclusion Mortality rates of transfusion recipients are higher than those of the general population, but the increase diminishes over time. The mortality rates found for the Netherlands are lower than those found in comparable studies for other countries.</description>
    </item> <item>
      <title>Individual accumulation of heterogeneous risks explains perinatal inequalities within deprived neighbourhoods (Article)</title>
      <link>http://repub.eur.nl/res/pub/26523/</link>
      <pubDate>2011-02-01T00:00:00Z</pubDate>
      <description>Dutch' figures on perinatal mortality and morbidity are poor compared to EU-standards. Considerable within-country differences have been reported too, with decreased perinatal health in deprived urban areas. We investigated associations between perinatal risk factors and adverse perinatal outcomes in 7,359 pregnant women participating in population-based prospective cohort study, to establish the independent role, if any, for living within a deprived urban neighbourhood. Main outcome measures included perinatal death, intrauterine growth restriction (IUGR), prematurity, congenital malformations, Apgar at 5 min &lt; 7, and pre-eclampsia. Information regarding individual risk factors was obtained from questionnaires, physical examinations, ultrasounds, biological samples, and medical records. The dichotomous Dutch deprivation indicator was additionally used to test for unexplained deprived urban area effects. Pregnancies from a deprived neighbourhood had an increased risk for perinatal death (RR 1.8, 95% CI [1.1; 3.1]). IUGR, prematurity, Apgar at 5 min &lt; 7, and pre-eclampsia also showed higher prevalences (P &lt; 0.05). Residing within a deprived neighbourhood was associated with increased prevalence of all measured risk factors. Regression analysis showed that the observed neighbourhood related differences in perinatal outcomes could be attributed to the increased risk factor prevalence only, without a separated role for living within a deprived neighbourhood. Women from a deprived neighbourhood had significantly more 'possibly avoidable' risk factors. To conclude, women from a socioeconomically deprived neighbourhood are at an increased risk for adverse pregnancy outcomes. Differences regarding possibly avoidable risk factors imply that preventive strategies may prove effective. </description>
    </item> <item>
      <title>Perinatale gezondheid in Rotterdam; nulmeting periode 2000-2007 (Research Report)</title>
      <link>http://repub.eur.nl/res/pub/39248/</link>
      <pubDate>2011-01-01T00:00:00Z</pubDate>
      <description>Inleiding
Rotterdam heeft binnen Nederland een relatief hoog perinataal sterftecijfer. Onder perinatale
sterfte verstaan we sterfte vanaf 22 weken zwangerschapsduur tot en met de eerste 7 dagen
na de geboorte. Dit bleek reeds in 2008 toen De Graaf et al. beschreven dat vrouwen in de
vier grote steden een sterk verhoogde kans hebben op perinatale sterfte en daarmee samenhangende
perinatale ziekte. De belangrijkste vier perinatale ziekten, die vaak voorlopers zijn
van perinatale sterfte, zijn aangeboren afwijkingen, vroeggeboorte, laag geboortegewicht
gelet op de zwangerschapsduur, en een lage Apgar score (een slechte start bij de geboorte).
In vervolg op de bevindingen voor Rotterdam is in 2008 het Aanvalsplan Perinatale Sterfte
Rotterdam van start gegaan. Dit is een meerjarig programma waarin de Gemeente
Rotterdam in samenwerking met het Erasmus MC en de GGD Rotterdam Rijnmond tot doel
heeft de perinatale sterfte en perinatale ziekte binnen Rotterdam te verminderen. Een eerste
stap hierbij is het nauwkeurig in kaart brengen van perinatale ziekten en sterfte, en de
factoren die mogelijk hiervoor verantwoordelijk zijn. Deze factoren kunnen gebonden zijn
aan zwangeren zelf, met hun omgeving te maken hebben of met de zorg te maken hebben.</description>
    </item> <item>
      <title>Perinatale gezondheid in Rotterdam; nulmeting periode 2000-2007 (Research Report)</title>
      <link>http://repub.eur.nl/res/pub/39249/</link>
      <pubDate>2011-01-01T00:00:00Z</pubDate>
      <description>Inleiding
Rotterdam heeft binnen Nederland een relatief hoog perinataal sterftecijfer. Onder perinatale
sterfte verstaan we sterfte vanaf 22 weken zwangerschapsduur tot en met de eerste 7 dagen
na de geboorte. Dit bleek reeds in 2008 toen De Graaf et al. beschreven dat vrouwen in de
vier grote steden een sterk verhoogde kans hebben op perinatale sterfte en daarmee samenhangende
perinatale ziekte. De belangrijkste vier perinatale ziekten, die vaak voorlopers zijn
van perinatale sterfte, zijn aangeboren afwijkingen, vroeggeboorte, laag geboortegewicht
gelet op de zwangerschapsduur, en een lage Apgar score (een slechte start bij de geboorte).
In vervolg op de bevindingen voor Rotterdam is in 2008 het Aanvalsplan Perinatale Sterfte
Rotterdam van start gegaan. Dit is een meerjarig programma waarin de Gemeente
Rotterdam in samenwerking met het Erasmus MC en de GGD Rotterdam Rijnmond tot doel
heeft de perinatale sterfte en perinatale ziekte binnen Rotterdam te verminderen. Een eerste
stap hierbij is het nauwkeurig in kaart brengen van perinatale ziekten en sterfte, en de
factoren die mogelijk hiervoor verantwoordelijk zijn. Deze factoren kunnen gebonden zijn
aan zwangeren zelf, met hun omgeving te maken hebben of met de zorg te maken hebben.</description>
    </item> <item>
      <title>Perinatale gezondheid in Rotterdam; nulmeting periode 2000-2007 (Research Report)</title>
      <link>http://repub.eur.nl/res/pub/39250/</link>
      <pubDate>2011-01-01T00:00:00Z</pubDate>
      <description>Inleiding
Rotterdam heeft binnen Nederland een relatief hoog perinataal sterftecijfer. Onder perinatale
sterfte verstaan we sterfte vanaf 22 weken zwangerschapsduur tot en met de eerste 7 dagen
na de geboorte. Dit bleek reeds in 2008 toen De Graaf et al. beschreven dat vrouwen in de
vier grote steden een sterk verhoogde kans hebben op perinatale sterfte en daarmee samenhangende
perinatale ziekte. De belangrijkste vier perinatale ziekten, die vaak voorlopers zijn
van perinatale sterfte, zijn aangeboren afwijkingen, vroeggeboorte, laag geboortegewicht
gelet op de zwangerschapsduur, en een lage Apgar score (een slechte start bij de geboorte).
In vervolg op de bevindingen voor Rotterdam is in 2008 het Aanvalsplan Perinatale Sterfte
Rotterdam van start gegaan. Dit is een meerjarig programma waarin de Gemeente
Rotterdam in samenwerking met het Erasmus MC en de GGD Rotterdam Rijnmond tot doel
heeft de perinatale sterfte en perinatale ziekte binnen Rotterdam te verminderen. Een eerste
stap hierbij is het nauwkeurig in kaart brengen van perinatale ziekten en sterfte, en de
factoren die mogelijk hiervoor verantwoordelijk zijn. Deze factoren kunnen gebonden zijn
aan zwangeren zelf, met hun omgeving te maken hebben of met de zorg te maken hebben.</description>
    </item> <item>
      <title>Aiming at multidisciplinary consensus: What should be detected in prenatal diagnosis? (Article)</title>
      <link>http://repub.eur.nl/res/pub/21629/</link>
      <pubDate>2010-11-01T00:00:00Z</pubDate>
      <description>Objective: To determine expert consensus on which chromosomal abnormalities should and should not be detected in prenatal diagnosis, and for which abnormalities disagreement remains after structured discussion. Methods: An expert panel of 24 prenatal experts (8 clinical cytogeneticists, 8 clinical geneticists and 8 obstetricians) rated 15 chromosomal abnormalities sampled from a nationwide study on rapid aneuploidy detection (RAD). In two individual anonymous rating rounds and one group meeting, the participants rated PRO or AGAINST detection and stated their main argument. The 15 chromosomal abnormalities were described in detail by a stylized vignette containing an obstetrical history, the indication for prenatal diagnosis and the range of possible outcomes of the chromosomal abnormality. Consensus was defined to be present if at least 80% of the experts agreed. Results: Consensus was reached in 12 out of 15 cases. In ten cases, there was agreement PRO detection and in two cases experts agreed AGAINST detection. At the end of the third round, dissensus remained on three abnormalities. Conclusion: Experts largely agreed on detecting chromosomal abnormalities with severe consequences and AGAINST detection in case of irrelevant clinical consequences. For chromosomal abnormalities with mild or uncertain outcomes, dissensus remained. None of the currently available tests corresponds to these demands.</description>
    </item> <item>
      <title>Long term costs and effects of reducing the number of twin pregnancies in IVF by single embryo transfer: The TwinSing study (Article)</title>
      <link>http://repub.eur.nl/res/pub/28451/</link>
      <pubDate>2010-10-20T00:00:00Z</pubDate>
      <description>Background: Pregnancies induced by in vitro fertilisation (IVF) often result in twin gestations, which are associated with both maternal and perinatal complications. An effective way to reduce the number of IVF twin pregnancies is to decrease the number of embryos transferred from two to one. The interpretation of current studies is limited because they used live birth as outcome measure and because they applied limited time horizons. So far, research on long-term outcomes of IVF twins and singletons is scarce and inconclusive. The objective of this study is to investigate the short (1-year) and long-term (5 and 18-year) costs and health outcomes of IVF singleton and twin children and to consider these in estimating the cost-effectiveness of single embryo transfer compared with double embryo transfer, from a societal and a healthcare perspective.Methods/Design: A multi-centre cohort study will be performed, in which IVF singletons and IVF twin children born between 2003 and 2005 of whom parents received IVF treatment in one of the five participating Dutch IVF centres, will be compared. Data collection will focus on children at risk of health problems and children in whom health problems actually occurred. First year of life data will be collected in approximately 1,278 children (619 singletons and 659 twin children). Data up to the fifth year of life will be collected in approximately 488 children (200 singletons and 288 twin children). Outcome measures are health status, health-related quality of life and costs. Data will be obtained from hospital information systems, a parent questionnaire and existing registries. Furthermore, a prognostic model will be developed that reflects the short and long-term costs and health outcomes of IVF singleton and twin children. This model will be linked to a Markov model of the short-term cost-effectiveness of single embryo transfer strategies versus double embryo transfer strategies to enable the calculation of the long-term cost-effectiveness.Discussion: This is, to our knowledge, the first study that investigates the long-term costs and health outcomes of IVF singleton and twin children and the long-term cost-effectiveness of single embryo transfer strategies versus double embryo transfer strategies. </description>
    </item> <item>
      <title>Individualized choice in prenatal diagnosis: The impact of karyotyping and standalone rapid aneuploidy detection on quality of life (Article)</title>
      <link>http://repub.eur.nl/res/pub/21300/</link>
      <pubDate>2010-10-01T00:00:00Z</pubDate>
      <description>Objective: To assess the reasons and perceptions of women who are offered a choice between karyotyping and standalone rapid aneuploidy detection (RAD) and to compare the impact of both tests on anxiety and health-related quality of life. Methods: In this prospective comparative study, women undergoing amniocentesis on behalf of their age or for an increased Down syndrome risk were offered a choice between karyotyping (group 1, n = 68) and standalone RAD (group 2, n = 61). Follow-up was 9 weeks post amniocentesis. Results: The most commonly cited reason for choosing karyotyping was obtaining as much information as possible, while for choosing standalone RAD, it was the short waiting time. Prenatal screening (OR 7.09), no knowledge of karyotyping (OR 4.2), and an intermediate perceived risk for chromosomal abnormalities (OR 3.6) were associated with choosing standalone RAD. There were no systematic differences in time of karyotyping and standalone RAD in terms of anxiety (P = 0.11), generic physical and mental health (P = 0.94, 0.52; P = 0.66, 0.07), personal perceived control (PPC; P = 0.69), and stress (P = 0.66). Conclusion: Offering a choice between karyotyping and standalone RAD does not influence anxiety, stress, PPC, or generic health. Individual choice in prenatal diagnosis meets individual needs and thereby could reduce anxiety and stress.</description>
    </item> <item>
      <title>Screening in pregnancy for fetal or neonatal alloimmune thrombocytopenia: Systematic review (Article)</title>
      <link>http://repub.eur.nl/res/pub/28511/</link>
      <pubDate>2010-10-01T00:00:00Z</pubDate>
      <description>Please cite this paper as: Kamphuis M, Paridaans N, Porcelijn L, De Haas M, van der Schoot C, Brand A, Bonsel G, Oepkes D. Screening in pregnancy for fetal or neonatal alloimmune thrombocytopenia: systematic review. BJOG 2010;117:1335-1343. Background: Fetal and neonatal alloimmune thrombocytopenia (FNAIT) is a potentially devastating disease, which may lead to intracranial haemorrhage (ICH), with neurological damage as a consequence. In the absence of screening, FNAIT is only diagnosed after bleeding symptoms, with preventive options limited to a next pregnancy. Objectives: To estimate the population incidence of FNAIT and its consequences to prepare for study design of a screening programme. Search strategy: An electronic literature search using MEDLINE, EMBASE and Cochrane database, and references of retrieved articles. No language restrictions were applied. Selection criteria: Prospective studies on screening for human platelet antigen 1a (HPA-1a) alloimmunisation in low-risk pregnant women. Data collection and analysis: Two reviewers independently assessed studies for inclusion and extracted data. Main outcome data were prevalence of HPA-1a negativity, HPA-1a immunisation, platelet count at birth and perinatal ICH. We aimed to compare outcome with and without intervention. Main results: HPA-1a alloimmunisation occurred in 294/3028 (9.7%) pregnancies at risk. Severe FNAIT occurred in 71/227 (31%) immunised pregnancies, with perinatal ICH in 7/71 (10%). True natural history data were not found because interventions were performed in most screen-positive women. Authors' conclusions Screening for HPA-1a alloimmunisation detects about two cases in 1000 pregnancies. The calculated risk for perinatal ICH of 10% in pregnancies with severe FNAIT is an underestimation because studies without interventions were lacking. Screening of all pregnancies together with effective antenatal treatment such as intravenous immunoglobulin may reduce the mortality and morbidity associated with FNAIT. </description>
    </item> <item>
      <title>Risk stratification for sudden cardiac death in hypertrophic cardiomyopathy: Dutch cardiologists and the care of mutation carriers (Article)</title>
      <link>http://repub.eur.nl/res/pub/33161/</link>
      <pubDate>2010-10-01T00:00:00Z</pubDate>
      <description>Background. Patients with hypertrophic cardiomyopathy (HCM) and HCM mutation carriers are at risk of sudden cardiac death (SCD). Both groups should therefore be subject to regular cardiological testing - including risk stratification for SCD - according to international guidelines. We evaluated Dutch cardiologists' knowledge of and adherence to international guidelines on risk stratification and prevention of SCD in mutation carriers with and without manifest HCM. Methods. A questionnaire was sent to 1109 Dutch cardiologists (in training) containing case-based questions. Results. The response rate was 21%. Own general knowledge on HCM care was rated as insufficient by 63% of cardiologists. The percentage of correct answers (i.e. in agreement with international guidelines), on the case-based questions ranged from 37 to 96%, being lowest in cases with an unknown number of risk factors for SCD. A substantial portion of correct answers was based on the correct answer 'ask an expert opinion'. Significantly more correct answers were provided in cases with manifest HCM. There was little difference between the answers of cardiologists with different self-reported levels of knowledge, with different numbers of HCM patients in their practice or with different numbers of carriers without manifest HCM. Conclusion. Knowledge on risk stratification and preventive therapy was mediocre, and knowledge gaps exist, especially on HCM mutation carriers without manifest disease. Fortunately, experts are frequently asked for their opinion which might bring patient care to an adequate level. Hopefully, our results will stimulate cardiologists to follow developments in this field, thereby increasing quality of care for HCM patients and mutation carriers. (Neth Heart J 2009:17:464-9.). </description>
    </item> <item>
      <title>Increased adverse perinatal outcome of hospital delivery at night (Article)</title>
      <link>http://repub.eur.nl/res/pub/20495/</link>
      <pubDate>2010-08-01T00:00:00Z</pubDate>
      <description>Objective To determine whether delivery in the evening or at night and some organisational features of maternity units are related to perinatal adverse outcome. Design A 7-year national registry-based cohort study. Setting All 99 Dutch hospitals. Population From nontertiary hospitals (n = 88), 655 961 singleton deliveries from 32 gestational weeks onwards, and, from tertiary centres (n = 10), 108 445 singleton deliveries from 22 gestational weeks onwards. Methods Multiple logistic regression analysis of national perinatal registration data over the period 2000-2006. In addition, multilevel analysis was applied to investigate whether the effects of time of delivery and other variables systematically vary across different hospitals. Main outcome measures Delivery-related perinatal mortality (intrapartum or early neonatal mortality) and combined delivery-related perinatal adverse outcome (any of the following: intrapartum or early neonatal mortality, 5-minute Apgar score below 7, or admission to neonatal intensive care). Results After case mix adjustment, relative to daytime, increased perinatal mortality was found in nontertiary hospitals during the evening (OR, 1.32; 95% CI, 1.15-1.52) and at night (OR, 1.47; 95% CI, 1.28-1.69) and, in tertiary centres, at night only (OR, 1.20; 95% CI, 1.06-1.37). Similar significant effects were observed using the combined perinatal adverse outcome measure. Multilevel analysis was unsuccessful; extending the initial analysis with nominal hospital effects and hospital-delivery time interaction effects confirmed the significant effect of night in nontertiary hospitals, whereas other organisational effects (nontertiary, tertiary) were taken up by the hospital terms. Conclusion Hospital deliveries at night are associated with increased perinatal mortality and adverse perinatal outcome. The time of delivery and other organisational features representing experience (seniority of staff, volume) explain hospital-to-hospital variation.</description>
    </item> <item>
      <title>Development of the EQ-5D-Y: A child-friendly version of the EQ-5D (Article)</title>
      <link>http://repub.eur.nl/res/pub/28133/</link>
      <pubDate>2010-08-01T00:00:00Z</pubDate>
      <description>Purpose: To develop a self-report version of the EQ-5D for younger respondents, named the EQ-5D-Y (Youth); to test its comprehensibility for children and adolescents and to compare results obtained using the standard adult EQ-5D and the EQ-5D-Y. Methods: An international task force revised the content of EQ-5D and wording to ensure relevance and clarity for young respondents. Children's and adolescents' understanding of the EQ-5D-Y was tested in cognitive interviews after the instrument was translated into German, Italian, Spanish and Swedish. Differences between the EQ-5D and the EQ-5D-Y regarding frequencies of reported problems were investigated in Germany, Spain and South Africa. Results: The content of the EQ-5D dimensions proved to be appropriate for the measurement of HRQOL in young respondents. The wording of the questionnaire had to be adapted which led to small changes in the meaning of some items and answer options. The adapted EQ-5D-Y was satisfactorily understood by children and adolescents in different countries. It was better accepted and proved more feasible than the EQ-5D. The administration of the EQ-5D and of the EQ-5D-Y causes differences in frequencies of reported problems. Conclusions: The newly developed EQ-5D-Y is a useful tool to measure HRQOL in young people in an age-appropriate manner.</description>
    </item> <item>
      <title>Feasibility, reliability, and validity of the EQ-5D-Y: Results from a multinational study (Article)</title>
      <link>http://repub.eur.nl/res/pub/28218/</link>
      <pubDate>2010-08-01T00:00:00Z</pubDate>
      <description>Purpose: To examine the feasibility, reliability, and validity of the newly developed EQ-5D-Y. Methods: The EQ-5D-Y was administered in population samples of children and adolescents in Germany, Italy, South Africa, Spain, and Sweden. Percentages of missing values and reported problems were calculated. Test-retest reliability was determined. Spearman's rank correlation coefficients with other generic measures of HRQOL were calculated. Known groups' validity was examined by comparing groups with a priori expected differences in HRQOL. Results: Between 91 and 100% of the respondents provided valid scorings. Sweden had the lowest proportion of reported problems (1-24.9% across EQ-5D-Y dimensions), with the highest proportions in South Africa (2.8-47.3%) and Italy (4.3-39.0%). Percentages of agreement in test-retest reliability ranged between 69.8 and 99.7% in the EQ-5D-Y dimensions; Kappa coefficients were up to 0.67. Correlation coefficients with other measures of self-rated health indicated convergent validity (up to r = - 0.56). Differences between groups classified according to presence of chronic conditions, self-rated overall health and psychological problems provided preliminary evidence of known groups' validity. Conclusions: Results provide preliminary evidence of the instrument's feasibility, reliability and validity. Further study is required in clinical samples and for possible future applications in economic analyses.</description>
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      <title>The PROTON study: Profiles of blood product transfusion recipients in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/27541/</link>
      <pubDate>2010-07-01T00:00:00Z</pubDate>
      <description>Background: Transfusion recipient data are needed for correct estimation of cost-effectiveness in terms of recipient outcomes after transfusion. Also, such data are essential for monitoring blood use, estimation of future blood use and benchmarking. Study Design and Methods: A sample of 20 of 93 Dutch hospitals was selected. Datasets containing all blood product transfusions between 1996 and 2006 were extracted from hospital blood bank computer systems, containing transfusion date, blood product type and recipient characteristics such as gender, address, date of birth. The datasets were appended and matched to national hospitalization datasets including primary discharge diagnoses (ICD-9). Using these data, we estimated distributions of blood recipient characteristics in the Netherlands. Results: The dataset contains information on 290 043 patients who received 2 405 012 blood products (1 720 075 RBC, 443 697 FFP, 241 240 PLT) from 1996 to 2006. This is 28% of total blood use in the Netherlands during this period. Comparable diagnosis and age distributions of all hospitalizations indicate included hospitals to be representative, per hospital category, for the Netherlands. Of all red blood cells (RBC), fresh-frozen plasma (FFP) and platelets (PLT), respectively 1·7%, 2·5% and 4·5% were transfused to neonates. Recipients of 65 years or older received 57·6% of RBC, 41·4% of FFP and 29·0% of PLT. Most of the blood products were transfused to patients with diseases of the circulary system (25·1%) or neoplasms (22·0%). Conclusion: Transfusion data from a limited sample of hospitals can be used to estimate national distributions of blood recipient characteristics. </description>
    </item> <item>
      <title>Underutilization of prescribed drugs use among first generation elderly immigrants in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/28502/</link>
      <pubDate>2010-06-24T00:00:00Z</pubDate>
      <description>Background. In developed countries, health care utilization among immigrant groups differs where the dominant interpretation is unjustified overutilization due to lack of acculturation. We investigated utilization of prescribed drugs in native Dutch and various groups of immigrant elderly. Methods. Cross-sectional study using data from the survey "Social Position, Health and Well-being of Elderly Immigrants" (the Netherlands, 2003). Ethnicity-matched interviewers conducted the survey among first generation immigrants aged 55 years and older. Outcome measure is self-reported use of prescribed drugs. Utilization is explained by need, and by enabling and predisposing factors, in particular acculturation; analysis is conducted by multiple logistic regression. Results. The study population consisted of immigrants from Turkey (n = 307), Morocco (n = 284), Surinam (n = 308) and the Netherlands Antilles (n = 300), and a native Dutch reference group (n = 304). Prevalence of diabetes mellitus (DM), COPD and musculoskeletal disorders was relatively high among immigrant elderly. Drug utilization in especially Turkish and Moroccan elderly with DM and COPD was relatively low. Drugs use for non-mental chronic diseases was explained by more chronic conditions (OR 2.64), higher age (OR 1.03), and modern attitudes on male-female roles (OR 0.74) and religiosity (OR 0.89). Ethnicity specific effects remained only among Turkish elderly (OR 0.42). Drugs use for mental health problems was explained by more chronic conditions (OR 1.43), better mental health (OR 0.95) and modern attitudes on family values (OR 0.59). Ethnicity specific effects remained only among Moroccan (OR 0.19) and Antillean elderly (OR 0.31). Explanation of underutilization of drugs among diseased with diabetes and musculoskeletal disorders are found in number of chronic diseases (OR 0.74 and OR 0.78) and regarding diabetes also in language proficiency (OR 0.66) and modern attitudes on male-female roles (OR 1.69). Conclusions. Need and predisposing factors (acculturation) are the strongest determinants for drugs utilization among elderly immigrants. Significant drugs underutilization exists among migrants with diabetes and musculoskeletal disorders. </description>
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      <title>Social time preferences for health and money elicited with a choice experiment (Article)</title>
      <link>http://repub.eur.nl/res/pub/20725/</link>
      <pubDate>2010-06-01T00:00:00Z</pubDate>
      <description>Objectives: In economic evaluations future health and monetary outcomes are commonly discounted at equal and constant rates. The theoretical foundation of this practice is being debated and appropriate discount rates for costs and health effects are sought. Here, we have derived social discount rates for health, money, and environmental benefits by means of a choice experiment. Methods: All choices were framed from a social perspective. We investigated differences in time preference by domain (health, monetary benefits, environmental benefits), time delay (5, 10, and 40 years), and respondent characteristics. Respondents were 173 health-care professionals and 34 health policymakers. Choice titration was used to determine when the respondent was indifferent between future and present benefits. Results: At least two-thirds of respondents preferred an intervention with immediate benefits to delayed benefits in the different domains. The median (mean) yearly discount rates for health benefits were 2.7% (10.7%), 1.3% (3.5%), and 1.1% (2.3%) assuming a 5, 10, and 40 years delay, respectively. Social time preference for monetary benefits was significantly stronger, with median (mean) yearly discount rates of 6.6% (18.7%) and 4.8% (11.2%) assuming a 5 and 10 years delay, respectively. The social time preference with regard to environmental benefits was similar to the monetary benefits. Social time preference for the different domains was significantly correlated at the individual level. Conclusions: The empirically derived social time preference is in line with current theoretical arguments for a lower discount rate for health benefits than for monetary benefits. Moreover, the implied median discount rates for health were lower than those commonly used or advocated in guidelines.</description>
    </item> <item>
      <title>Maternal cortisol and offspring birthweight: Results from a large prospective cohort study (Article)</title>
      <link>http://repub.eur.nl/res/pub/27990/</link>
      <pubDate>2010-06-01T00:00:00Z</pubDate>
      <description>Maternal psychosocial problems may affect fetal growth through maternal cortisol. This large prospective cohort study examined among 2810 women (1) the association of maternal cortisol levels with offspring birthweight and small for gestational age (SGA) risk and (2) the mediating role of maternal cortisol on the relation between maternal psychosocial problems and fetal growth. Pregnant women in Amsterdam were approached during their first prepartum visit (±13 weeks gestation). Total maternal cortisol level was determined in serum and maternal psychosocial indicators were collected through a questionnaire. Maternal cortisol levels were negatively related to offspring birthweight (B=-0.35; p&lt;001) and positively to SGA (OR=1.00; p=027); after adjustment (for gestational age at birth, infant gender, ethnicity, maternal age, parity, BMI, and smoking), these effects were statistically insignificant. Post hoc analysis revealed a moderation effect by time of day: only in those women who provided a blood sample ≤09:00. h (n=94), higher maternal cortisol levels were independently related to lower birthweights (B=-0.94; p=025) and a higher SGA risk (OR. = 1.01; p=032). Maternal psychosocial problems were not associated with cortisol levels. In conclusion, although an independent association between maternal cortisol levels in early pregnancy and offspring birthweight and SGA risk was not observed, exploratory post hoc analysis suggested that the association was moderated by time of day, such that the association was only present in the early morning. The hypothesis that maternal psychosocial problems affect fetal growth through elevated maternal cortisol levels could not be supported. </description>
    </item> <item>
      <title>The impact of rapid aneuploidy detection (RAD) in addition to karyotyping versus karyotyping on maternal quality of life (Article)</title>
      <link>http://repub.eur.nl/res/pub/19754/</link>
      <pubDate>2010-05-01T00:00:00Z</pubDate>
      <description>Objective: To assess the impact of rapid aneuploidy detection (RAD) combined with fetal karyotyping versus karyotyping only on maternal anxiety and health-related quality of life. Methods: Women choosing to undergo amniocentesis were selected into group 1, i.e. receiving a karyotype result only (n = 132) or to group 2, i.e. receiving both the result of RAD and karyotyping (n = 181). Results: There were no systematic differences in time of RAD combined with karyotyping versus karyotyping only in terms of anxiety (P = 0.91), generic physical health (P = 0.76, P = 0.46), generic mental health (P = 0.52, P = 0.72), personal perceived control (P = 0.91) and stress (P = 0.13). RAD combined with karyotyping reduced anxiety and stress two weeks earlier compared to karyotyping only. Conclusion: RAD as add-on to karyotyping reduces anxiety and stress in the short term but it does not influence overall anxiety, stress, personal perceived control, and generic mental and physical health when compared to a karyotype-only strategy.</description>
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      <title>The yield of risk stratification for sudden cardiac death in hypertrophic cardiomyopathy myosin-binding protein C gene mutation carriers: focus on predictive screening (Article)</title>
      <link>http://repub.eur.nl/res/pub/23135/</link>
      <pubDate>2010-04-01T00:00:00Z</pubDate>
      <description>Abstract. 
AIMS:  We investigated the presence of a clinical diagnosis of hypertrophic cardiomyopathy (HCM) and of risk factors for sudden cardiac death (SCD) at the first cardiological evaluation after predictive genetic testing in asymptomatic carriers of an MYBPC3 gene mutation.
METHODS AND RESULTS: Two hundred and thirty-five mutation carriers were cardiologically evaluated on the presence of HCM and risk factors. A clinical diagnosis of HCM was made in 53 carriers (22.6%). Disease penetrance at 65 years was incomplete for all types of MYBPC3 gene mutations. Women were affected less often than men (15 and 32% respectively, P = 0.003) and disease penetrance was lower in females than in males (13 and 30% at 50 years, respectively, P = 0.024). One risk factor was present in 87 carriers and 9 had two or more risk factors. Twenty-five carriers (11%) with one or more risk factors and manifest HCM could be at risk for SCD.
CONCLUSION: At first cardiological evaluation almost one-quarter of asymptomatic carriers was diagnosed with HCM. Risk factors for SCD were frequently present and 11% of carriers could be at risk for SCD. Predictive genetic testing in HCM families and frequent cardiological evaluation on the presence of HCM and risk factors for SCD are justified until advanced age.</description>
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      <title>Risk stratification for sudden cardiac death in hypertrophic cardiomyopathy: systematic review of clinical risk markers (Article)</title>
      <link>http://repub.eur.nl/res/pub/23437/</link>
      <pubDate>2010-03-01T00:00:00Z</pubDate>
      <description>Abstract.  We performed a systematic literature review of recommended 'major' and 'possible' clinical risk markers for sudden cardiac death (SCD) in hypertrophic cardiomyopathy (HCM). We searched the Medline, Embase and Cochrane databases for articles published between 1971 and 2007. We included English language reports on HCM patients containing follow-up data on the endpoint (sudden) cardiac death using survival analysis. Analysis was undertaken using the quality of reporting of meta-analyses (QUORUM) statement checklist. The quality was checked using a quality assessment form from the Cochrane Collaboration. Thirty studies met inclusion criteria and passed quality assessment. The use of the six major risk factors (previous cardiac arrest or sustained ventricular tachycardia, non-sustained ventricular tachycardia, extreme left ventricular hypertrophy, unexplained syncope, abnormal blood pressure response, and family history of sudden death) in risk stratification for SCD as recommended by international guidelines was supported by the literature. In addition, left ventricular outflow tract obstruction seems associated with a higher risk of SCD. Our systematic review provides sound evidence for the use of the six major risk factors for SCD in the risk stratification of HCM patients. Left ventricular outflow tract obstruction could be included in the overall risk profile of patients with a marked left ventricular outflow gradient under basal conditions.</description>
    </item> <item>
      <title>Obtaining insurance after DNA diagnostics: a survey among hypertrophic cardiomyopathy mutation carriers. (Article)</title>
      <link>http://repub.eur.nl/res/pub/19722/</link>
      <pubDate>2010-02-01T00:00:00Z</pubDate>
      <description>Hypertrophic cardiomyopathy (HCM) is a common hereditary heart disease associated with increased mortality. Disclosure of DNA test results may have social implications such as low access to insurance. In the Netherlands, insurance companies are restricted in the use of genetic information of their clients by the Medical Examination Act. A cross-sectional survey was used to assess the frequency and type of problems encountered by HCM mutation carriers applying for insurance, and associations with carriers’ characteristics. The response rate was 86% (228/264). A total of 66 carriers (29%) applied for insurance of whom 39 reported problems (59%) during an average follow-up of 3 years since the DNA test result. More problems were encountered by carriers with manifest disease (P&lt;0.001) and carriers with symptoms of HCM (P=0.049). Carriers identified after predictive DNA testing less frequently experienced problems (P=0.002). Three carriers without manifest HCM reported problems (5%  of applicants). Frequently reported problems were higher premium (72%), grant access to medical records (62%), and complete rejection (33%). In conclusion, HCM mutation carriers frequently encounter problems when applying for insurances, often in the case of manifest disease, but the risk assessment of insurance companies is largely justified. Still, 5% of carriers encounter potentially unjustified problems, indicating the necessity to monitor the application of the existing laws and regulations by insurance companies and to educate counselees on the implications of these laws and regulations.</description>
    </item> <item>
      <title>Lijnen in de Perinatale Sterfte (Research Report)</title>
      <link>http://repub.eur.nl/res/pub/23454/</link>
      <pubDate>2010-01-01T00:00:00Z</pubDate>
      <description>Voorwoord: 
De laatste jaren is er groeiende aandacht voor de gezondheid van zwangere vrouwen en hun pasgeboren kinderen. Een belangrijke aanleiding is geweest dat de sterfte van kinderen rondom de geboorte -perinatale sterfte- in Nederland hoger blijkt dan in de ons omringende landen en ook minder snel dan daar daalt.
De betrokken beroepsgroepen, de overheid en daarnaast ook de media hebben in de discussie over de mogelijke oorzaken geparticipeerd. Zowel het functioneren van de typisch Nederlandse verloskundige ketenzorg, de risico’s van vrouwen door ziekte, leefstijl en sociaal-maatschappelijke status waaronder de woonomgeving, als de relatief grote verschillen in perinatale gezondheid tussen bevolkingsgroepen waren daarbij onderwerp van gesprek</description>
    </item> <item>
      <title>Rapportage eerste jaar pilotstudie preconceptiezorg in deelgemeente Noord (Research Report)</title>
      <link>http://repub.eur.nl/res/pub/39245/</link>
      <pubDate>2010-01-01T00:00:00Z</pubDate>
      <description>Inleiding: Nederland kent hoge perinatale sterftecijfers met grote verschillen tussen etnische, sociaaleconomische en tussen mensen al dan niet wonen in een grote stad of in een zogenoemde prachtwijk (De Graaf et al.; NTVG 2008;152:2734). Zwangere vrouwen die in een grote stad wonen hebben vaker een slechte zwangerschapsuitkomst. Verklaringen hiervoor zijn dat in grote steden meer allochtone ouders en ouders met een lage sociaaleconomische status wonen, meer ouders woonachtig zijn in een prachtwijk, en in de grote steden meer sprake is van cumulatie van diverse risico’s. Ongunstige perinatale uitkomsten komen binnen de vier grote steden in Rotterdam het meest voor. In Rotterdam vormt het wonen in een prachtwijk een extra risico, vooral voor autochtone ouders. De Nederlandse situatie gaf de minister aanleiding tot de installatie van de Stuurgroep Zwangerschap en Geboorte die binnen het huidige kader verbeteringsvoorstellen voorbereidt met de beroepsgroepen. Hij kondigde verder in 2008 aan dat - in dit verband - meer voorlichting aan toekomstige ouders speerpunt van beleid werd. In Rotterdam werd op grond van de cijfers in 2008 het Aanvalsplan Perinatale Sterfte (Denktas et al, TSG 2009;87:199; www.klaarvooreenkind.nl) ontwikkeld en omgedoopt tot het programma Klaar voor een Kind dat op 1 januari 2009 van start is gegaan. De gemeente Rotterdam investeert in de ontwikkeling en start-up van nieuwe preventieprogramma’s. De GGD Rotterdam-Rijnmond en het Erasmus MC coördineren het programma via het KveK-programmabureau. Dit regisseert de activiteiten (ontwikkeling, onderzoek, implementatie, afstemming, beleid). Het programma Klaar voor een Kind voorziet in verschillende projecten en de Pilotstudie Preconceptiezorg in deelgemeente Noord is de eerste die in uitvoering
is genomen.</description>
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      <title>Risk stratification for sudden cardiac death in hypertrophic cardiomyopathy: Dutch cardiologists and the care of mutation carriers (Article)</title>
      <link>http://repub.eur.nl/res/pub/22598/</link>
      <pubDate>2009-12-01T00:00:00Z</pubDate>
      <description>Abstract

Background. Patients with hypertrophic cardiomyopathy (HCM) and HCM mutation carriers are at risk of sudden cardiac death (SCD). Both groups should therefore be subject to regular cardiological testing - including risk stratification for SCD - according to international guidelines. We evaluated Dutch cardiologists' knowledge of and adherence to international guidelines on risk stratification and prevention of SCD in mutation carriers with and without manifest HCM.Methods. A questionnaire was sent to 1109 Dutch cardiologists (in training) containing case-based questions.Results. The response rate was 21%. Own general knowledge on HCM care was rated as insufficient by 63% of cardiologists. The percentage of correct answers (i.e. in agreement with international guidelines), on the case-based questions ranged from 37 to 96%, being lowest in cases with an unknown number of risk factors for SCD. A substantial portion of correct answers was based on the correct answer 'ask an expert opinion'. Significantly more correct answers were provided in cases with manifest HCM. There was little difference between the answers of cardiologists with different self-reported levels of knowledge, with different numbers of HCM patients in their practice or with different numbers of carriers without manifest HCM.Conclusion. Knowledge on risk stratification and preventive therapy was mediocre, and knowledge gaps exist, especially on HCM mutation carriers without manifest disease. Fortunately, experts are frequently asked for their opinion which might bring patient care to an adequate level. Hopefully, our results will stimulate cardiologists to follow developments in this field, thereby increasing quality of care for HCM patients and mutation carriers.</description>
    </item> <item>
      <title>Ethnic background and differences in health care use: a national cross-sectional study of native Dutch and immigrant elderly in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/19437/</link>
      <pubDate>2009-10-01T00:00:00Z</pubDate>
      <description>BACKGROUND: Immigrant elderly are a rapidly growing group in Dutch society; little is known about their health care use. This study assesses whether ethnic disparities in health care use exist and how they can be explained. Applying an established health care access model as explanatory factors, we tested health and socio-economic status, and in view of our research population we added an acculturation variable, elaborated into several sub-domains. METHODS: Cross-sectional study using data from the "Social Position, Health and Well-being of Elderly Immigrants" survey, conducted in 2003 in the Netherlands. The study population consisted of first generation immigrants aged 55 years and older from the four major immigrant populations in the Netherlands and a native Dutch reference group. The average response rate to the survey was 46% (1503/3284; country of origin: Turkey n = 307, Morocco n = 284, Surinam n = 308, the Netherlands Antilles n = 300, the Netherlands n = 304). RESULTS: High ethnic disparities exist in health and health care utilisation. Immigrant elderly show a higher use of GP services and lower use of physical therapy and home care. Both self-reported health status (need factor) and language competence (part of acculturation) have high explanatory power for all types of health services utilisation; the additional impact of socio-economic status and education is low. CONCLUSION: For all health services, health disparities among all four major immigrant groups in the Netherlands translate into utilisation disparities, aggravated by lack of language competence. The resulting pattern of systematic lower health services utilisation of elderly immigrants is a challenge for health care providers and policy makers.</description>
    </item> <item>
      <title>Decreasing perinatal mortality in the Netherlands, 2000-2006: A record linkage study (Article)</title>
      <link>http://repub.eur.nl/res/pub/17526/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>Background: The European PERISTAT-1 study showed that, in 1999, perinatal mortality, especially fetal mortality, was substantially higher in The Netherlands than in other European countries. The aim of this study was to analyse the recent trend in Dutch perinatal mortality and the influence of risk factors. Methods: A nationwide retrospective cohort study of 1 246 440 singleton births in 2000-2006 in The Netherlands. The source data were available from three linked registries: the midwifery registry, the obstetrics registry and the neonatology/paediatrics registry. The outcome measure was perinatal mortality (fetal and early neonatal mortality). The trend was studied with and without risk adjustment. Five clinical distinct groups with different perinatal mortality risks were used to gain further insight. Results: Perinatal mortality among singletons declined from 10.5 to 9.1 per 1000 total births in the period 2000-2006. This trend remained significant after full adjustment (odds ratio 0.97; 95% CI 0.96 to 0.98) and was present in both fetal and neonatal mortality. The decline was most prominent among births complicated by congenital anomalies, among premature births (32.0-36.6 weeks) and among term births. Home births showed the lowest mortality risk. Conclusions: Dutch perinatal mortality declined steadily over this period, which could not be explained by changes in known risk factors including high maternal age and nonwestern ethnicity. The decline was present in all risk groups except in very premature births. The mortality level is still high compared with European standards.</description>
    </item> <item>
      <title>Karyotyping or rapid aneuploidy detection in prenatal diagnosis? the different views of users and providers of prenatal care (Article)</title>
      <link>http://repub.eur.nl/res/pub/24821/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>Developments in prenatal diagnosis raise the question which test strategy should be implemented. However, preferences of women and caregivers are underexposed. This study investigates what kind of prenatal test pregnant women and caregivers prefer and if differences between the groups exist, using self-report questionnaires. Women preferred either karyotyping (50%) or rapid aneuploidy detection (43%). Caregivers opted for the latter (78%). A test targeted on Down syndrome was the least preferred in both groups. We recommend the use of individualised choice for genetic test in prenatal diagnosis, overcoming the existing differences in preferences between women and caregivers. </description>
    </item> <item>
      <title>Risk factors for RhD immunisation despite antenatal and postnatal anti-D prophylaxis (Article)</title>
      <link>http://repub.eur.nl/res/pub/24822/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>Objective To identify risk factors for Rhesus D (RhD) immunisation in pregnancy, despite adequate antenatal and postnatal anti-D prophylaxis in the previous pregnancy. To generate evidence for improved primary prevention by extra administration of anti-D Ig in the presence of a risk factor. Design Case-control study. Setting Nation-wide evaluation of the Dutch antenatal anti-D-prophylaxis programme. Population Cases: 42 RhD-immunised parae-1, recognised by first-trimester routine red cell antibody screening in their current pregnancy, who received antenatal and postnatal anti-D Ig prophylaxis (gifts of 1000 iu) in their first pregnancy. Controls: 339 parae-1 without red cell antibodies. Methods Data were collected via obstetric care workers and/or personal interviews with women. Main outcome measure Significant risk factors for RhD immunisation in multivariate analysis. Results Independent risk factors were non-spontaneous delivery (assisted vaginal delivery or caesarean section) (OR 2.23; 95% CI:1.04-4.74), postmaturity (≥42 weeks of completed gestation: OR 3.07; 95% CI:1.02-9.02), pregnancy-related red blood cell transfusion (OR 3.51; 95% CI:0.97-12.7 and age (OR 0.89/year; 95% CI:0.80-0.98). In 43% of cases, none of the categorical risk factors was present. Conclusions In at least half of the failures of anti-D Ig prophylaxis, a condition related to increased fetomaternal haemorrhage (FMH) and/or insufficient anti-D Ig levels was observed. Hence, RhD immunisation may be further reduced by strict compliance to guidelines concerning determination of FMH and accordingly adjusted anti-D Ig prophylaxis, or by routine administration of extra anti-D Ig after a non-spontaneous delivery and/or a complicated or prolonged third stage of labour. </description>
    </item> <item>
      <title>The effect of neighbourhood income and deprivation on pregnancy outcomes in Amsterdam, The Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/24898/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>Background: Studies suggest that the neighbourhoods in which people live influence their health. The main objective of this study was to investigate the associations of neighbourhood-level income and unemployment/social security benefit on pregnancy outcomes: preterm delivery, small for gestational age (SGA), pregnancy-induced hypertension (PIH) and miscarriage/perinatal death in Amsterdam. Methods: A random sample of 7883 from 82 neighbourhoods in Amsterdam. Individual-level data from the Amsterdam Born Children and their Development (ABCD) study were linked to data on neighbourhood-level factors. Multilevel logistic regression was used to estimate odds ratios and neighbourhood-level variance. Results: After adjustment for individual-level factors, women living in low-income neighbourhoods (third, second and first quartiles) were more likely than women living in high-income neighbourhoods (fourth quartile) to have SGA births: OR 1.32 (95% CI 1.04 to 1.68), 1.42 (1.11 to 1.82) and 1.62 (1.25 to 2.08) respectively. Women living in the quartile of neighbourhoods with the highest unemployment/social security benefit were more likely than those living in the quartile with the lowest unemployment/social security benefit to have SGA births 1.36 (1.08 to 1.72). The neighbourhood-level variance was significant only for SGA births. No significant associations were found between neighbourhood-level factors and other pregnancy outcomes. Conclusion: The findings suggest that neighbourhood income and deprivation are related to SGA births. More research is needed to explore possible mechanisms underlying poor neighbourhood environment and pregnancy outcomes, in particular through stress mechanisms. Such information might be necessary to help improve maternal and fetal health.</description>
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      <title>Alternative approaches to derive disability weights in injuries: do they make a difference? (Article)</title>
      <link>http://repub.eur.nl/res/pub/16352/</link>
      <pubDate>2009-07-31T00:00:00Z</pubDate>
      <description>BACKGROUND: In burden of disease studies, several approaches are used to assess disability weights, a scaling factor necessary to compute years lived with disability (YLD). The aim of this study was to quantify disability weights for injury consequences with two competing approaches, (a) standard QALY/DALY model (SQM) which derives disability weights from patient survey data and (b) the annual profile model (APM) which derives weights for the same patient data valued by a panel. METHODS: Disability weights were assessed using (a) EQ-5D data from a postal survey among 8,564 injury patients 2(1/2), 5, and 9 months after attending the Emergency Department, and (b) preferences of 143 laymen elicited with the time trade-off method. RESULTS: Compared with APM, SQM disability weights were consistently higher. YLD calculated with SQM disability weights was more than three times higher compared with YLD calculated with APM disability weights, for mild injuries with short duration, this increase was six fold. CONCLUSIONS: The APM seems the preferred method in burden of injury studies that includes mild conditions with a rapid course, since the SQM approach might overestimate the impact of the latter. The APM, however, might underestimate the impact of injury consequences, especially in case of severe injuries.</description>
    </item> <item>
      <title>Genetic counseling and cardiac care in predictively tested hypertrophic cardiomyopathy mutation carriers: the patients' perspective (Article)</title>
      <link>http://repub.eur.nl/res/pub/19407/</link>
      <pubDate>2009-07-01T00:00:00Z</pubDate>
      <description>Hypertrophic cardiomyopathy (HCM) is a common hereditary heart disease associated with sudden cardiac death. Predictive genetic counseling and testing are performed using adapted Huntington guidelines, that is, psychosocial care and time for reflection are not obligatory and the test result can be disclosed by telephone or mail. Proven mutation carriers detected by predictive DNA testing are advised to undergo regular cardiac follow-up according to international guidelines. We evaluated the opinion of 143 predictively tested HCM mutation carriers on received cardiogenetic care using questionnaires (response rate 86%). Predictive genetic counseling and DNA testing were evaluated on four domains: information provision, satisfaction with counseling, social pressure in DNA testing and regret of DNA testing. Opinions on cardiac follow-up were assessed pertaining to communication, nervous anticipation, reassurance, and general disadvantages. Genetic counseling was valued positively and only four carriers would rather not have known that they were a mutation carrier. A majority received their DNA test result by mail or telephone, and almost all were satisfied. Only 76% of carriers received regular cardiac follow-up. Those who did, had a positive attitude regarding the cardiac visits. General disadvantages of the visits were valued as low, especially by older carriers, men and carriers with manifest HCM. We conclude that our adapted Huntington guidelines are well accepted and that cardiogenetic care is generally appreciated by predictively tested HCM mutation carriers. To better understand the cause of the substantial portion of mutation carriers not receiving regular cardiac follow-up, although recommended in international guidelines, further research is needed.</description>
    </item> <item>
      <title>Feasibility, Reliability, and Validity of Three Health-State Valuation Methods Using Multiple-Outcome Vignettes on Moderate-Risk Pregnancy at Term (Article)</title>
      <link>http://repub.eur.nl/res/pub/19441/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>ABSTRACT Objectives: Preference-based health-state valuation methods such as discrete choice experiment (DCE) are claimed to be superior than attitude-based valuation methods like visual analogue scale (VAS) and time trade-off (TTO). We compared VAS, TTO, and DCE in terms of feasibility, reliability, and validity using vignettes depicting moderate-risk pregnancy at term. Methods: People from the community (n = 97) participated in both a panel session and an individual home assignment. Each participant valuated 46 vignettes with VAS, TTO, and DCE. Each vignette consisted of five attributes: maternal health antepartum, time between diagnosis and delivery, process of delivery, maternal outcome, and neonatal outcome. The questionnaire included Feasibility, which we evaluated by questionnaire. Test-retest reliability and interobserver consistency were assessed by intraclass correlation (ICC), and variance consistency by generalization theory. Convergent validity was determined with ICC and Cohen's kappa; construct validity was determined with linear regression, multinomial logit modeling, and Kendall's Tau-b correlation (tau). Results: The DCE was reported as most feasible (DCE: 87% vs. VAS: 69% vs. TTO: 42%). Test-retest reliability was high overall and equal (VAS: ICC = 0.77; TTO: ICC = 0.79; DCE: kappa = 0.78). The VAS had the highest interobserver reliability (ICC = 0.73). Convergent validity between VAS and DCE was high (kappa = 0.79) and there was sufficient construct validity between VAS and DCE (tau = 0.68). The TTO yielded less optimal results. Generally, neonatal and maternal outcomes weighed most, whereas process outcomes weighed least in moderate-risk pregnancy at term. Conclusions: In our context of multidimensional health states with complex trade-offs, DCE was superior to TTO and performed equal to VAS, with DCE displaying slightly higher user feasibility.</description>
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      <title>Associations between dietary patterns and semen quality in men undergoing IVF/ICSI treatment (Article)</title>
      <link>http://repub.eur.nl/res/pub/24680/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>Background: This study investigates whether dietary patterns, substantiated by biomarkers, are associated with semen quality. Methods: In 161 men of subfertile couples undergoing in vitro fertilization treatment in a tertiary referral clinic in Rotterdam, the Netherlands, we assessed nutrient intakes and performed principal component factor analysis to identify dietary patterns. Total homocysteine (tHcy), folate, vitamin B12 and B6 were measured in blood and seminal plasma. Semen quality was assessed by sperm volume, concentration, motility, morphology and DNA fragmentation index (DFI). Linear regression models analyzed associations between dietary patterns, biomarkers and sperm parameters, adjusted for age, body mass index (BMI), smoking, vitamins and varicocele. Results: The 'Health Conscious' dietary pattern shows high intakes of fruits, vegetables, fish and whole grains. The 'Traditional Dutch' dietary pattern is characterized by high intakes of meat, potatoes and whole grains and low intakes of beverages and sweets. The 'Health Conscious' diet was inversely correlated with tHcy in blood (β = -0.07, P = 0.02) and seminal plasma (β = -1.34, P = 0.02) and positively with vitamin B6 in blood (β = 0.217, P = 0.01). An inverse association was demonstrated between the 'Health Conscious' diet and DFI (β = -2.81, P = 0.05). The 'Traditional Dutch' diet was positively correlated with red blood cell folate (β = 0.06, P = 0.04) and sperm concentration (β = 13.25, P = 0.01). Conclusions: The 'Health Conscious' and 'Traditional Dutch' dietary pattern seem to be associated with semen quality in men of subfertile couples.</description>
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      <title>Ethnic differences in early pregnancy maternal n-3 and n-6 fatty acid concentrations: An explorative analysis (Article)</title>
      <link>http://repub.eur.nl/res/pub/25174/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>Ethnicity-related differences in maternal n-3 and n-6 fatty acid status may be relevant to ethnic disparities in birth outcomes observed worldwide. The present study explored differences in early pregnancy n-3 and n-6 fatty acid composition of maternal plasma phospholipids between Dutch and ethnic minority pregnant women in Amsterdam, the Netherlands, with a focus on the major functional fatty acids EPA (20:5n-3), DHA (22:6n-3), dihomo - linolenic acid (DGLA; 20:3n-6) and arachidonic acid (AA; 20:4n-6). Data were derived from the Amsterdam Born Children and their Development (ABCD) cohort (inclusion January 2003 to March 2004). Compared with Dutch women (n 2443), Surinamese (n 286), Antillean (n 63), Turkish (n 167) and Moroccan (n 241) women had generally lower proportions of n-3 fatty acids (expressed as percentage of total fatty acids) but higher proportions of n-6 fatty acids (general linear model; P&lt;0001). Ghanaian women (n 54) had higher proportions of EPA and DHA, but generally lower proportions of n-6 fatty acids (P&lt;0001). Differences were most pronounced in Turkish and Ghanaian women, who, by means of a simple questionnaire, reported the lowest and highest fish consumption respectively. Adjustment for fish intake, however, hardly attenuated the differences in relative EPA, DHA, DGLA and AA concentrations between the various ethnic groups. Given the limitations of this observational study, further research into the ethnicity-related differences in maternal n-3 and n-6 fatty acid patterns is warranted, particularly to elucidate the explanatory role of fatty acid intake v. metabolic differences.</description>
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      <title>Clinical-decision taking in primary pelvic organ prolapse; the effects of diagnostic tests on treatment selection in comparison with a consensus meeting (Article)</title>
      <link>http://repub.eur.nl/res/pub/19448/</link>
      <pubDate>2009-05-27T00:00:00Z</pubDate>
      <description>INTRODUCTION AND HYPOTHESIS: The objective of the study was to establish the effects of additional diagnostic tests compared to a consensus outcome on treatment selection in primary pelvic organ prolapse. METHODS: Three expert gynecologists individually defined a management plan in 53 patients after magnetic resonance imaging, defecography, urodynamic, and anorectal function test information was provided. These management plans were compared with basic treatment advices in the absence of any test and with consensus advices (opinion-based references). The experts assigned a subjective score (assigned diagnostic value [ADV], 0-100%) to rate the test's relative importance. RESULTS: On average, additional diagnostic testing resulted in a revised initial management plan in 38% of the cases; 24% of the individual management plans did not meet the consensus reference. Overall defecography was regarded most valuable (ADV range 19-65%) vs. magnetic resonance imaging rated least (ADV range 0-37%). CONCLUSIONS: Although additional diagnostic tests frequently led to adaptations of basic treatment proposals, consensus was not reached in a fourth of the cases.</description>
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      <title>Regional perinatal mortality differences in the Netherlands; Care is the question (Article)</title>
      <link>http://repub.eur.nl/res/pub/24952/</link>
      <pubDate>2009-05-06T00:00:00Z</pubDate>
      <description>Background. Perinatal mortality is an important indicator of health. European comparisons of perinatal mortality show an unfavourable position for the Netherlands. Our objective was to study regional variation in perinatal mortality within the Netherlands and to identify possible explanatory factors for the found differences. Methods. Our study population comprised of all singleton births (904,003) derived from the Netherlands Perinatal Registry for the period 2000-2004. Perinatal mortality including stillbirth from 22+0weeks gestation and early neonatal death (0-6 days) was our main outcome measure. Differences in perinatal mortality were calculated between 4 distinct geographical regions North-East-South-West. We tried to explain regional differences by adjustment for the demographic factors maternal age, parity and ethnicity and by socio-economic status and urbanisation degree using logistic modelling. In addition, regional differences in mode of delivery and risk selection were analysed as health care factors. Finally, perinatal mortality was analysed among five distinct clinical risk groups based on the mediating risk factors gestational age and congenital anomalies. Results. Overall perinatal mortality was 10.1 per 1,000 total births over the period 2000-2004. Perinatal mortality was elevated in the northern region (11.2 per 1,000 total births). Perinatal mortality in the eastern, western and southern region was 10.2, 10.1 and 9.6 per 1,000 total births respectively. Adjustment for demographic factors increased the perinatal mortality risk in the northern region (odds ratio 1.20, 95% CI 1.12-1.28, compared to reference western region), subsequent adjustment for socio-economic status and urbanisation explained a small part of the elevated risk (odds ratio 1.11, 95% CI 1.03-1.20). Risk group analysis showed that regional differences were absent among very preterm births (22+0- 25+6weeks gestation) and most prominent among births from 32+0gestation weeks onwards and among children with severe congenital anomalies. Among term births (37+0weeks) regional mortality differences were largest for births in women transferred from low to high risk during delivery. Conclusion. Regional differences in perinatal mortality exist in the Netherlands. These differences could not be explained by demographic or socio-economic factors, however clinical risk group analysis showed indications for a role of health care factors.</description>
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      <title>Anonymous non-response analysis in the ABCD cohort study enabled by probabilistic record linkage (Article)</title>
      <link>http://repub.eur.nl/res/pub/24780/</link>
      <pubDate>2009-05-01T00:00:00Z</pubDate>
      <description>Selective non-response is an important threat to study validity as it can lead to selection bias. The Amsterdam Born Children and their Development study (ABCD-study) is a large cohort study addressing the relationship between life style, psychological conditions, nutrition and sociodemographic background of pregnant women and their children's health. Possible selective non-response and selection bias in the ABCD-study were analysed using national perinatal registry data. ABCD-study data were linked with national perinatal registry data by probabilistic medical record linkage techniques. Differences in the prevalence of relevant risk factors (sociodemographic and care-related factors) and birth outcomes between respondents and non-respondents were tested using Pearson chi-squared tests. Selection bias (i.e. bias in the association between risk factors and specific outcomes) was analysed by regression analysis with and without adjustment for participation status. The ABCD non-respondents were significantly younger, more often non-western, and more often multiparae. Non-respondents entered antenatal care later, were more often under supervision of an obstetrician and had a spontaneous delivery more often. Non-response however, was not significantly associated with preterm birth (odds ratio 1.10; 95% CI 0.93, 1.29) or low birthweight (odds ratio 1.16; 95% CI 0.98, 1.37) after adjustment for sociodemographic risk factors. The associations found between risk factors and adverse pregnancy outcomes were similar for respondents and non-respondents. Anonymised record linkage of cohort study data with national registry data indicated that selective non-response was present in the ABCD-study, but selection bias was acceptably low and did not influence the main study questions. </description>
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      <title>Monitoring viral incidence rates: Tools for the implementation of European Union regulations (Article)</title>
      <link>http://repub.eur.nl/res/pub/24804/</link>
      <pubDate>2009-05-01T00:00:00Z</pubDate>
      <description>Background and Objectives European legislation requires manufacturers of plasma products to report epidemiological data on human immunodeficiency virus, hepatitis B virus and hepatitis C virus in donor populations. The incidence rates of such infections are directly related to the risk of infection transmission. We propose two statistical tests to evaluate these incidence rates. Materials and Methods Infection data of the four Dutch blood collection centres from 2003 through 2006 were analysed. For transversal comparison of centres and detection of increased incidence rates, a new statistical test was developed (outlier test). For longitudinal detection of trends in incidence rates, a generic test for trend is proposed. The power and risk of non-detection are evaluated for both tests. Results Application of the outlier test did not reveal any significantly increased incidence rates among centres in The Netherlands. The test for trend showed no significant increase in incidence rates in individual centres, but on national level a statistically significant increase in hepatitis C virus incidence was observed (P-value of 0·01). Conclusion The proposed tests allow signalling of outlier centres and trends in incidence rates both at individual centre and at national levels. Graphical support and the use of as much relevant historical data as possible is recommended. The statistical tests described are generic and can be applied by any blood establishment and plasma fractionation institute. </description>
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      <title>Quality of life and psychological distress in hypertrophic cardiomyopathy mutation carriers: a cross-sectional cohort study (Article)</title>
      <link>http://repub.eur.nl/res/pub/19406/</link>
      <pubDate>2009-04-01T00:00:00Z</pubDate>
      <description>Hypertrophic cardiomyopathy (HCM) is a common hereditary heart disease associated with heart failure and sudden death. Quality of life and psychological distress were found to be impaired in HCM patients but have never been assessed in mutation carriers, with or without manifest HCM. We aimed to assess quality of life and psychological distress, using standardized questionnaires, and to identify sociodemographic, clinical, risk and illness perception related predictors thereof in 228 HCM mutation carriers. HCM carriers' overall quality of life and distress scores did not differ from the Dutch population. Quality of life and distress were worst in carriers with manifest HCM before DNA testing and best in predictively tested carriers without HCM. The latter group had even significantly better quality of life than the general population. Substantial determinants of impaired physical quality of life were symptoms (beta = 5.2, P = 0.001) and stronger belief in serious consequences of carriership (beta = 3.5, P &lt; 0.001); determinants of impaired mental quality of life were physical comorbidity (beta = 3.0, P = 0.020) and a higher perceived risk of symptoms (beta = 0.9, P = 0.001). Female gender (beta = 1.4, P = 0.004) and stronger emotional reactions (beta = 1.2, P = 0.002) were associated with more anxiety. Less understanding of carriership (beta = 0.9, P = 0.007) and stronger belief in serious consequences (beta = 0.8, P = 0.008) increased depression. Levels of quality of life and distress were not impaired compared to the Dutch population. Illness and risk perception related variables were major determinants of quality of life and distress. Because these variables can be addressed and adjusted during pre- and post-test counseling, genetic counseling should focus on these determinants.</description>
    </item> <item>
      <title>Psychosocial problems and continued smoking during pregnancy (Article)</title>
      <link>http://repub.eur.nl/res/pub/24244/</link>
      <pubDate>2009-04-01T00:00:00Z</pubDate>
      <description>The present study examined the association of several psychosocial problems with continued smoking during pregnancy. Based on a population-based cohort study among pregnant women in Amsterdam (n = 8266), women who smoked before pregnancy were included in this study (n = 1947). Women completed a questionnaire around the 12th week of gestation. Based on whether they smoked in the past week, participants were categorized as quitters or non-quitters. Depressive symptoms (CES-D), anxiety (STAI), pregnancy-related anxiety, job strain, parenting stress and physical/sexual violence were measured. Multiple logistic regression analyses were performed. After adjustment for sociodemographic and smoking-related covariates, low and high levels of pregnancy-related anxiety, exposure to physical/sexual violence, and high job strain were significantly associated with continued smoking during pregnancy. Intensive and comprehensive smoking cessation programs are required for pregnant women, which includes the management of psychosocial problems. </description>
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      <title>Risk factors for the presence of non-rhesus D red blood cell antibodies in pregnancy (Article)</title>
      <link>http://repub.eur.nl/res/pub/24818/</link>
      <pubDate>2009-04-01T00:00:00Z</pubDate>
      <description>Objective To identify risk factors for the presence of non-rhesus D (RhD) red blood cell (RBC) antibodies in pregnancy. To generate evidence for subgroup RBC antibody screening and for primary prevention by extended matching of transfusions in women &lt;45 years. Design Case-control study. Setting Nationwide evaluation of screening programme for non-RhD RBC antibodies. Population Cases: consecutive pregnancies (n = 900) with non-RhD immunisation identified from 1 September 2002 to 1 June 2003 and 1 October 2003 to 1 July 2004; controls (n = 968): matched for obstetric caregiver and gestational age. Methods Data collection from the medical records and/or from the respondents by a structured phone interview. Main outcome measures Significant risk factors for non-RhD immunisation in multivariate analysis. Results Significant independent risk factors: history of RBC transfusion (OR 16.7; 95% CI: 11.4-24.6), parity (para-1 versus para-0: OR 1.3; 95% CI: 1.0-1.7; para-2 versus para-0: OR 1.4; 95% CI: 1.0-2.0; para &gt;2 versus para-0: OR 3.2; 95% CI: 1.8-5.8), haematological disease (OR 2.1; 95% CI: 1.0-4.2), history of major surgery (OR 1.4; 95% CI: 1.1-1.8). For the clinically most important antibodies, anti-K, anti-c and other Rh-nonD-antibodies RBC transfusion was the most important risk factor, especially for anti-K (OR 96.4; 95%-CI: 56.6-164.1); 83% of the K-sensitised women had a history of RBC transfusion. Pregnancy-related risk factors were a prior male child (OR 1.7; 95% CI: 1.2-2.3) and caesarean section (OR 1.7; 95% CI: 1.1-2.7). Conclusions RBC transfusion is by far the most important independent risk factor for non-RhD immunisation in pregnancy, followed by parity, major surgery and haematological disease. Pregnancy-related risk factors are a prior male child and caesarean section. Subgroup screening for RBC antibodies, with exclusion of RhD-positive para-0 without clinical risk factors, is to be considered. This approach will be equally sensitive in detecting severe Haemolytic Disease of the Fetus and Newborn compared with the present RBC antibody screening programme without preselection. Primary prevention by extending preventive matching of transfusions in women younger than 45 will prevent more than 50% of pregnancy immunisations. </description>
    </item> <item>
      <title>Risk factors for the presence of non-rhesus D red blood cell antibodies in pregnancy (Article)</title>
      <link>http://repub.eur.nl/res/pub/19580/</link>
      <pubDate>2009-01-01T00:00:00Z</pubDate>
      <description>Objective To identify risk factors for the presence of non-rhesus D (RhD) red blood cell (RBC) antibodies in pregnancy. To generate evidence for subgroup RBC antibody screening and for primary prevention by extended matching of transfusions in women &lt;45 years.

Design Case–control study.

Setting Nationwide evaluation of screening programme for non-RhD RBC antibodies.

Population Cases: consecutive pregnancies (n = 900) with non-RhD immunisation identified from 1 September 2002 to 1 June 2003 and 1 October 2003 to 1 July 2004; controls (n= 968): matched for obstetric caregiver and gestational age.

Methods Data collection from the medical records and/or from the respondents by a structured phone interview.

Main outcome measures Significant risk factors for non-RhD immunisation in multivariate analysis.

Results Significant independent risk factors: history of RBC transfusion (OR 16.7; 95% CI: 11.4–24.6), parity (para-1 versus para-0: OR 1.3; 95% CI: 1.0–1.7; para-2 versus para-0: OR 1.4; 95% CI: 1.0–2.0; para &gt;2 versus para-0: OR 3.2; 95% CI: 1.8–5.8), haematological disease (OR 2.1; 95% CI: 1.0–4.2), history of major surgery (OR 1.4; 95% CI: 1.1–1.8). For the clinically most important antibodies, anti-K, anti-c and other Rh-nonD-antibodies RBC transfusion was the most important risk factor, especially for anti-K (OR 96.4; 95%-CI: 56.6–164.1); 83% of the K-sensitised women had a history of RBC transfusion. Pregnancy-related risk factors were a prior male child (OR 1.7; 95% CI: 1.2–2.3) and caesarean section (OR 1.7; 95% CI: 1.1–2.7).

Conclusions RBC transfusion is by far the most important independent risk factor for non-RhD immunisation in pregnancy, followed by parity, major surgery and haematological disease. Pregnancy-related risk factors are a prior male child and caesarean section. Subgroup screening for RBC antibodies, with exclusion of RhD-positive para-0 without clinical risk factors, is to be considered. This approach will be equally sensitive in detecting severe Haemolytic Disease of the Fetus and Newborn compared with the present RBC antibody screening programme without preselection. Primary prevention by extending preventive matching of transfusions in women younger than 45 will prevent more than 50% of pregnancy immunisations.</description>
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      <title>Disability adjusted life years and minimal disease: Application of a preference-based relevance criterion to rank enteric pathogens (Article)</title>
      <link>http://repub.eur.nl/res/pub/16609/</link>
      <pubDate>2008-12-29T00:00:00Z</pubDate>
      <description>Background: Burden of disease estimates, which combine mortality and morbidity into a single measure, are used increasingly for priority setting in disease control, prevention and surveillance. However, because there is no clear exclusion criterion for highly prevalent minimal disease in burden of disease studies its application may be restricted. The aim of this study was to apply a newly developed relevance criterion based on preferences of a population panel, and to compare burden of disease estimates of five foodborne pathogens calculated with and without application of this criterion. Methods: Preferences for twenty health states associated with foodborne disease were obtained from a population panel (n = 107) with the Visual Analogue Scale and the Time Trade-off (TTO) technique. The TTO preferences were used to derive the relevance criterion: if at least 50% of a panel of judges is willing to trade-off time in order to be restored to full health the health state is regarded as relevant, i.e. TTO median is greater than 0. Subsequently, the burden of disease of each of the five foodborne pathogens was calculated both with and without the relevance criterion. Results: The panel ranked the health states consistently. Of the twenty health states, three did not meet the preference-based relevance criterion. Application of the relevance criterion reduced the burden of disease estimate of all five foodborne pathogens. The reduction was especially significant for norovirus and rotavirus, decreasing with 94% and 78% respectively. Conclusion: Individual preferences elicited with the TTO from a population panel can be used to empirically derive a relevance criterion for burden of disease estimates. Application of this preference-based relevance criterion results in considerable changes in ranking of foodborne pathogens.</description>
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      <title>Perinatale uitkomsten in de vier grote steden en de prachtwijken in Nederland (Article)</title>
      <link>http://repub.eur.nl/res/pub/23573/</link>
      <pubDate>2008-12-13T00:00:00Z</pubDate>
      <description>Doel. Het verband tussen woonwijk, etniciteit en ongunstige perinatale uitkomsten analyseren bij zwangeren in de 4 grootste steden (Amsterdam, Rotterdam, Den Haag en Utrecht; G4) en in de rest van Nederland.
Opzet. Descriptief, retrospectief.
Methode. De perinatale uitkomst van 877.816 eenlingzwangerschappen in Nederland in de periode 2002-2006, vastgelegd in de Perinatale Registratie Nederland, werd geanalyseerd op etniciteit van de zwangere (westers of niet-westers) en op woonwijk (achterstandswijk (‘prachtwijk’) of niet) in de G4-steden en daarbuiten. Een ongunstige perinatale uitkomst was gedefinieerd als perinatale sterfte, congenitale afwijkingen, dysmaturiteit, vroeggeboorte, een apgar-score na 5 minuten &lt; 7 en/of opname op een neonatale intensivecareunit.
Resultaten. Het perinatale sterftecijfer was in de G4-steden hoger dan in de rest van Nederland (11,1 versus 9,3‰; p &lt; 0,001; 95%-BI van het verschil: 1,2-2,4‰). Hetzelfde gold voor het totaal van ongunstige perinatale uitkomsten (154,9 versus 138,9‰). In de G4-steden was de perinatale sterfte in de groep niet-westerse vrouwen hoger dan in de groep westerse vrouwen (13,2 versus 9,5‰). Het wonen in een prachtwijk gaat gepaard met een hogere perinatale sterfte dan in een niet-prachtwijk (13,5 versus 9,3‰). De relatieve risico’s van het wonen in een prachtwijk zijn groter bij westerse dan bij niet-westerse vrouwen.
Conclusie. Vrouwen in de G4-steden hebben een sterk verhoogde kans op een ongunstige perinatale uitkomst. Wonen in een prachtwijk vormt een nog groter risico, vooral voor westerse zwangeren. Deze bevindingen zijn van belang voor het vaststellen van nieuwe strategieën ter verbetering van de perinatale uitkomst.</description>
    </item> <item>
      <title>Anorectal function testing and anal endosonography in the diagnostic work-up of patients with primary pelvic organ prolapse (Article)</title>
      <link>http://repub.eur.nl/res/pub/19446/</link>
      <pubDate>2008-12-01T00:00:00Z</pubDate>
      <description>AIM: To study the pathophysiology of defecation disorders in patients with primary pelvic organ prolapse (POP) and the diagnostic potential of anorectal function testing (AFT) including endosonography in the work-up of these patients. METHODS: 59 Patients were evaluated with a validated questionnaire, clinical examination, AFT and endosonography. RESULTS: Women with POP showed lower squeezing pressure, postponed first sensation and desire, lower capacity and prolonged pudendal nerve terminal latency time compared to healthy controls (all p &lt; 0.01). Manometric findings did not differ significantly between patients with and without constipation. Patients with fecal incontinence had significantly lower resting and squeezing pressures than patients without fecal incontinence and an increased risk of an external sphincter defect (odds ratio = 12.75, 95% confidence interval 2.40-66.67). Although digital rectal examination could quantify absent, decreased and normal squeezing pressure, the positive predictive value for external sphincter defects was low (0.32). CONCLUSION: AFT indicates the presence of neuromuscular damage of the anorectal region in patients with POP. AFT is not useful in the work-up of patients with POP and constipation, because it fails to discriminate between symptomatic and asymptomatic patients. In cases of fecal incontinence, AFT and endosonography are helpful to distinguish between functional and anatomical problems.</description>
    </item> <item>
      <title>Women's attitude towards prenatal screening for red blood cell antibodies, other than RhD (Article)</title>
      <link>http://repub.eur.nl/res/pub/30331/</link>
      <pubDate>2008-11-11T00:00:00Z</pubDate>
      <description>Background: Since July 1998 all Dutch women (± 200,000/y) are screened for red cell antibodies, other than anti-RhesusD (RhD) in the first trimester of pregnancy, to facilitate timely treatment of pregnancies at risk for hemolytic disease of the fetus and newborn (HDFN). Evidence for benefits, consequences and costs of screening for non-RhD antibodies is still under discussion. The screening program was evaluated in a nation-wide study. As a part of this evaluation study we investigated, according to the sixth criterium of Wilson and Jüngner, the acceptance by pregnant women of the screening program for non-RhD antibodies. Methods: Controlled longitudinal survey, including a prenatal and a postnatal measurement by structured questionnaires. Main outcome measures: information satisfaction, anxiety during the screening process (a.o. STAI state inventory and specific questionnaire modules), overall attitude on the screening program. Univariate analysis was followed by standard multivariate analysis to identify significant predictors of the outcome measures. Participants: 233 pregnant women, distributed over five groups, according to the screening result. Results: Satisfaction about the provided information was moderate in all groups. All screen- positive groups desired more supportive information. Anxiety increased in screen- positives during the screening process, but decreased to basic levels postnatally. All groups showed a strongly positive balance between perceived utility and burden of the screening program, independent on test results or background characteristics. Conclusion: Women highly accept the non-RhD antibody screening program. However, satisfaction about provided information is moderate. Oral and written information should be provided by obstetric care workers themselves, especially to screen-positive women. </description>
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      <title>Correlation between posterior vaginal wall defects assessed by clinical examination and by defecography (Article)</title>
      <link>http://repub.eur.nl/res/pub/30022/</link>
      <pubDate>2008-08-25T00:00:00Z</pubDate>
      <description>To estimate the accuracy of clinical examination and the indications for defecography in patients with primary posterior wall prolapse. Fifty-nine patients with primary pelvic organ prolapse were evaluated with a questionnaire, clinical examination and defecography. Defecography was used as reference standard. There was no relation between bowel complaints and posterior wall prolapse evaluated by clinical examination (p = 0.33), nor between bowel complaints and rectocele (p = 0.19) or enterocele (p = 0.99) assessed by defecography. The diagnostic accuracy of clinical examination in diagnosing rectocele was 0.42, sensitivity was 1.0 and specificity was 0.23. The diagnostic accuracy of clinical examination in diagnosing enterocele was 0.73, with a sensitivity of 0.07 and a specificity of 0.95. Clinical examination is not accurate to assess anatomic defects of the posterior vaginal wall. Defecography is recommended as a helpful diagnostic tool in the work-up of patients with posterior vaginal wall prolapse if surgical repair is considered. </description>
    </item> <item>
      <title>Uptake of genetic counselling and predictive DNA testing in hypertrophic cardiomyopathy (Article)</title>
      <link>http://repub.eur.nl/res/pub/30115/</link>
      <pubDate>2008-07-24T00:00:00Z</pubDate>
      <description>Hypertrophic cardiomyopathy is a common autosomal dominant disease, associated with heart failure and arrhythmias predisposing to sudden cardiac death. After the detection of the causal mutation in the proband predictive DNA testing of relatives is possible (cascade screening). Prevention of sudden cardiac death in patients with a high risk by means of an implantable cardioverter defibrillator is effective. In 97 hypertrophic cardiomyopathy families with a sarcomere gene mutation we retrospectively determined uptake of genetic counselling and predictive DNA testing in relatives within 1 year after the detection of the causal mutation in the proband. Uptake of genetic counselling was 39% and did not differ significantly by proband's or relative's gender, nor by young age of the relative (&lt;18 years) or a family history positive for sudden cardiac death. In second-degree relatives, eligible for predictive DNA testing when the first-degree relative had died, uptake was 27.5% (P=0.047). Uptake of predictive genetic testing was 39%; conditional uptake of predictive genetic testing was 99%. Uptake of genetic counselling in hypertrophic cardiomyopathy is comparable to uptake in oncogenetics. Conditional uptake of predictive DNA testing, however, is much higher. Because sudden cardiac death can be prevented uptake of genetic counselling in hypertrophic cardiomyopathy should be as high as possible. To achieve this research into the determinants of uptake is needed.</description>
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      <title>Ethnic differences in term birthweight: The role of constitutional and environmental factors (Article)</title>
      <link>http://repub.eur.nl/res/pub/29517/</link>
      <pubDate>2008-07-01T00:00:00Z</pubDate>
      <description>It is not clear to what extent ethnic differences in the term birthweight distribution are constitutional or pathological. This study explored term birthweight heterogeneity between ethnic groups and the explanatory role of constitutional and environmental factors. As part of a prospective cohort study, the Amsterdam Born Children and their Development study, 8266 pregnant women filled out a questionnaire during early pregnancy. Ethnic groups were categorised as: native Dutch group; first and second generation Surinamese, Antillean, Turkish, Moroccan, Ghanaian and other non-Dutch groups. Only singleton livebirths with ≥37.0 weeks of gestation and with complete data were included for analysis (n = 7118). We performed linear regression analyses to estimate the association between ethnicity and, for gestational age, standardised birthweight at term, adjusted for constitutional (fetal gender, parity, maternal age, maternal height) and environmental (education, cohabitation status, maternal body mass index, smoking, alcohol consumption, depression, work stress) determinants respectively. Mean birthweight ranged from 3223 g (second generation Surinamese newborns) to 3548 g (Dutch newborns). Adjustment for constitutional factors substantially reduced the ethnic differences in birthweight, while adjustment for environmental factors provided little additional explanation. Surinamese [first generation: regression coefficient (b) = -98.3 g, P &lt; 0.001; second generation: b = -159.3 g, P &lt; 0.001], first generation Antillean (b = -102.0 g, P = 0.037), and Ghanaian newborns (b = -120.7 g, P = 0.001) remained significantly smaller than Dutch newborns after adjustment for all determinants. Term birthweight differences between Dutch newborns and Turkish, Moroccan and other non-Dutch newborns were largely explained by constitutional rather than environmental determinants, limiting the need for prevention. Surinamese, Antillean and Ghanaian (mainly black) newborns remained unexplainably smaller after adjustment, leaving the possibility of either unknown constitutional or pathological underlying mechanisms. </description>
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      <title>Feasibility and reliability of the annual profile method for deriving QALYs for short-term health conditions (Article)</title>
      <link>http://repub.eur.nl/res/pub/29556/</link>
      <pubDate>2008-07-01T00:00:00Z</pubDate>
      <description>Introduction. When health varies over time, the standard quality-adjusted life year model operates under the assumptions of time utility independence within each health state and additive independence between health states. These assumptions can be relaxed by an integral assessment of disease severity over time. The authors present the annual profile method (APM), which values health profiles on a 1-year base, and test the APM for feasibility, consistency, and test-retest reliability. Methods. A population panel, general practitioners, medical advisers, and a panel of the Dutch Consumers Association valued vignettes for 46 disease stages using the visual analog scale (VAS) and time tradeoff (TTO) methods. Vignettes contained disease-specific information, a generic description (EQ-6D5L), a description of the disease course over time, and a visual representation of the disease. Feasibility was tested by missing and inconsistent responses. Consistency between and within panels was tested with a generalizability study, analysis of variance, and standard correlation coefficients. Test-retest reliability was tested with a generalizability study and intra-class correlation coefficients. Results. Missing and inconsistent responses were &lt; 2.6%. The valuations were consistent across panels, with generalizability coefficients of 0.78 (VAS) and 0.64 (TTO). Within the main population panel, internal consistency was satisfactory and the influence of background characteristics negligible. Test-retest reliability was high, with generalizability coefficients of 0.90 (VAS) and 0.72 (TTO). Conclusion. Feasibility and reliability of the APM for realistic health profiles are good to excellent. The APM is a promising step to bridge the gap between the quality-adjusted life year methodology and clinical reality.</description>
    </item> <item>
      <title>Which aspects of non-clinical quality of care are most important? Results from WHO's general population surveys of "health systems responsiveness" in 41 countries (Article)</title>
      <link>http://repub.eur.nl/res/pub/29522/</link>
      <pubDate>2008-05-01T00:00:00Z</pubDate>
      <description>Quality of care research has reached some agreement on concepts like structure, process and outcome, and non-clinical versus clinical processes of care. These concepts are commonly explored through surveys measuring patient experiences, yet few surveys have focused on patient, or "user", priorities across different quality dimensions. Population surveys on priorities can contribute to, although not replace participation in, policy decision making. Using 105,806 survey interview records from the World Health Organization's (WHO's) general population surveys in 41 countries, this paper describes the relative importance of eight domains in the non-clinical quality of care concept WHO calls "health systems responsiveness". Responsiveness domains are divided into interpersonal domains (dignity, autonomy, communication and confidentiality) and structural domains (quality of basic amenities, choice, access to social support networks and prompt attention). This paper explores variations in domain importance by country-level variables (country of residence, human development, health system expenditure, and "geographic zones") and by subpopulations defined by sex, age, education, health status, and utilization. Most respondents selected prompt attention as the most important domain. Dignity was selected second, followed by communication. Access to social support networks was identified as the least important domain. In general, convergence in rankings was stronger across subpopulations within countries than across countries. Yet even across diverse countries, there was more convergence than divergence in views. These results provide a ranking of quality of care criteria for consideration during health reform processes further to the usual emphasis on clinical quality and supply-side efficiency. </description>
    </item> <item>
      <title>Ethnic differences in preterm birth and its subtypes: The effect of a cumulative risk profile (Article)</title>
      <link>http://repub.eur.nl/res/pub/30342/</link>
      <pubDate>2008-05-01T00:00:00Z</pubDate>
      <description>Objective: To explore the effect of potentially explanatory risk factors on ethnic differences in the prevalence of preterm birth (PTB) and its subtypes. Design: Prospective population-based cohort study. Setting and population: Pregnant women from Amsterdam attending their first antenatal visit for obstetric care. A total of 8266 women participated (response rate 67%). Ethnicity was based on the country of birth of the pregnant woman's mother: the Netherlands, Surinam, the Antilles, Turkey, Morocco, Ghana and other non-Dutch countries. Exclusion criteria were multiple births and gestational age at delivery less than 24 weeks. Methods: Risk factors were obtained using a multilingual questionnaire and from the Dutch Perinatal Registration. Risk factors were summed into a cumulative risk score. Multiple logistic regression analyses were performed. Main outcome measures: Odds ratios with 95% CIs were calculated for total, spontaneous and iatrogenic (medically indicated) preterm births for the ethnic minority groups versus the Dutch reference group. Results: After adjustment for all risk factors, the Surinamese (OR 1.6, 95% CI 1.2-2.4), Ghanaian (OR 2.0, 95% CI 1.1-3.6) and Antillean (OR 1.6, 95% CI 0.8-3.3) women had a higher risk of PTB compared with the Dutch women, in particular for iatrogenic preterm birth (OR 2.1, 95% CI 1.0-4.4; OR 3.2, 95% CI 1.0-10.4; OR 3.6, 95% CI 1.1-11.2, respectively). The ethnic minority groups had a higher cumulative risk score (ranging from 2.1 to 3.7) compared with the Dutch group (1.8). Adjustment for the cumulative risk score considerably decreased the risk of PTB among the Surinamese (OR 1.2, 95% CI 0.9-1.7), Ghanaian (OR 1.3, 95% CI 0.8-2.3) and Antillean (OR 1.2, 95% CI 0.6-2.4) women. Conclusions: A cumulation of risk factors, mainly observed among the ethnic minority groups, contributes to the explanation of ethnic differences in PTB prevalence. </description>
    </item> <item>
      <title>Fetal RHD typing: Is fetal RHD typing in all RhD negative women cost effective? (Letter To Editor)</title>
      <link>http://repub.eur.nl/res/pub/23518/</link>
      <pubDate>2008-04-01T00:00:00Z</pubDate>
      <description></description>
    </item> <item>
      <title>Design and evaluation of a regional perinatal audit (Article)</title>
      <link>http://repub.eur.nl/res/pub/29693/</link>
      <pubDate>2008-04-01T00:00:00Z</pubDate>
      <description>Objective: To describe the experiences of a regional audit of perinatal deaths, including the experiences of the audit members, to discuss similarities and differences with other, existing perinatal audits and to summarize the implications for future implementation. Study design: Perinatal audit with blinded regional auditors. Consecutive cases of perinatal death were analysed for the presence of substandard care. A random selection of cases was reviewed by an external audit panel. The prevalence of substandard care in the Amsterdam audit was compared with other, existing audits. A survey among audit members was executed. Results: Care providers from all Amsterdam hospitals, as well as general practitioners and independent midwives cooperated. One hundred thirty-seven perinatal deaths were reviewed. In 25% of all perinatal death cases, substandard care factors were present. After 23 completed weeks substandard care factors were present in 35% of cases, and in 52% of intrapartum deaths. These figures are comparable with other, non-regional oriented audits. The review of the external panel was also comparable to the review of the regional audit committee. All audit members felt secure to discuss freely the presence of substandard care. Conclusion: First systematic experiences with a regional perinatal audit are described. We conclude that a regional perinatal audit is executable. Cooperation of regional care providers is good. Review of substandard care factors is comparable to other, non-regional oriented perinatal audits. </description>
    </item> <item>
      <title>Quantification of the level descriptors for the standard EQ-5D three-level system and a five-level version according to two methods (Article)</title>
      <link>http://repub.eur.nl/res/pub/30011/</link>
      <pubDate>2008-04-01T00:00:00Z</pubDate>
      <description>Objectives: Our aim was to compare the quantitative position of the level descriptors of the standard EQ-5D three-level system (3L) and a newly developed, experimental five-level version (5L) using a direct and a vignette-based indirect method. Methods: Eighty-two respondents took part in the study. The direct method represented a visual analog scale (VAS) rating of the nonextreme level descriptors for each dimension and each instrument separately. The indirect method required respondents to score 15 health scenarios with 3L, 5L and a VAS scale. Investigated were: (1) equidistance (Are 3L and 5L level descriptors distributed evenly over the VAS continuum?); (2) isoformity (Do the identical level descriptors on 3L and 5L yield similar results?); and (3) consistency between dimensions (Do the positions of similar level descriptors differ across dimensions within instruments?). Results: Equidistance without transformation was rejected for all dimensions for both 3L and 5L but satisfied for 5L after transformation. Isoformity gave mixed results. Consistency between dimensions was satisfied for both instruments and both methods. Discussion: The level descriptors have similar distributions across comparable dimensions within each system, but the pattern differs between 3L and 5L. This methodological study provides evidence of increased descriptive power and a broadened measurement continuum that encourages the further development of an official five-level EQ-5D. </description>
    </item> <item>
      <title>One-year infant outcome in women with early-onset hypertensive disorders of pregnancy (Article)</title>
      <link>http://repub.eur.nl/res/pub/30293/</link>
      <pubDate>2008-01-01T00:00:00Z</pubDate>
      <description>Objectives: To evaluate the role of plasma volume expansion on 1-year infant outcome after severe hypertensive disorders of pregnancy and to determine prognostic factors for adverse neurodevelopmental infant outcome. Design: Randomised controlled trial, observational prognostic study. Setting: Two university hospitals in Amsterdam, The Netherlands. Population: One hundred and seventy-two infants alive of 216 mothers with severe hypertensive disorders of pregnancy who were randomised for a temporising management strategy with or without plasma volume expansion. Methods: At 1 year of corrected age, a neurological examination according to Bayley (mental development index [MDI] and psychomotor development index [PDI]) and Touwen was performed. Main outcome measures: Adverse neurodevelopmental infant outcome was defined as a MDI/PDI score below 70 and/or an abnormal Touwen. Risk factors for adverse neurodevelopmental outcome were explored by univariate and multivariate analyses. Results: Adverse neurodevelopmental infant outcome was observed in 31 infants (18%). There were no differences between the randomisation groups. In multivariate analysis, an association with abnormal umbilical artery/middle cerebral artery Doppler ratio higher than the median, major neonatal morbidity, higher education of the parents, multiparity and Caucasian ethnicity was observed. Conclusion: Nearly 70% of the infants were alive at 1 year without adverse neurodevelopmental outcome. Maternal plasma volume expansion during pregnancy has no effect on 1-year infant outcome. The prediction of adverse outcome at 1 year by perinatal parameters is limited. </description>
    </item> <item>
      <title>Measuring quality of health care from the user's perspective in 41 countries: Psychometric properties of WHO's questions on health systems responsiveness (Article)</title>
      <link>http://repub.eur.nl/res/pub/36407/</link>
      <pubDate>2007-09-01T00:00:00Z</pubDate>
      <description>Objective: To evaluate, for different populations, psychometric properties of questions on "health systems responsiveness", a concept developed by World Health Organization (WHO) to describe non-clinical and non-financial aspects of quality of health care. Data sources/study setting/data collection: The 2000-2002 WHO Multi-Country Study comprised 70 general population surveys. Forty-one surveys were interviewer-administered, from which we extracted respondent records indicating ambulatory and inpatient health services use (excluding long-term institutions) in the previous 12 months (50,876 ambulatory and 7,964 hospital interviews). Study design: We evaluated feasibility, reliability, and construct validity using 33 items with polytomous response options, comparing responses from populations identified by countries, sex, age, education, health and income. Principal findings: Average item missing rates ranged from 0 to 16%. Domain-specific alpha coefficients exceeded 0.7 in 7 (of 9) cases. Average intertemporal reliability was acceptable in 6 (of 10) sites, where Kappas ranged from 0.54 to 0.79, but low in 4 sites (K &lt; 0.5). Kappa statistics were higher for male, educated and healthier populations than for female, less educated and less healthy populations. Factor solutions confirmed the domain structure of 7 domains (only 7 were operationalized for ambulatory settings). As in other studies, higher incomes and age was associated with more positive responsiveness reports and ratings. Conclusions: Quality issues addressed by WHO's questions are understood and reported adequately across diverse populations. More research is needed to interpret user-assessed quality of care comparisons across population groups within and between countries. </description>
    </item> <item>
      <title>When outcome is a balance: Methods to measure combined utility for the choice between induction of labour and expectant management in mild risk pregnancy at term (Article)</title>
      <link>http://repub.eur.nl/res/pub/36894/</link>
      <pubDate>2007-07-04T00:00:00Z</pubDate>
      <description>Background: When the primary and secondary outcomes of clinical studies yield ambiguous or conflicting recommendations, preference or valuation studies may help to overcome the decision problem. The present preference study is attached to two clinical studies (DIGTAT, ISRCT10363217; HYPITAT, ISRCT08132825) that evaluate induction of labour versus expectant management in term pregnancies with a mild risk profile. The purpose of the present study is to compare four methods of valuation/preference measurement. Methods: Multidimensional health state descriptions ('vignettes') defined by attributes and levels are presented to different response groups: laypersons, (ex-) patients, and medical experts. Valuations/ preferences are measured with the Visual Analogue Scale (VAS), Time Trade-Off (TTO), Willingness to Pay (WTP) and Discrete Choice Experiment (DCE) techniques. These methods are compared in terms of feasibility, reliability and validity. Anticipated results: By comparing the four techniques, we aim to answer (1) which of the techniques is most feasible, reliable and valid for use in multidimensional decision problems; (2) which of the techniques can be recommended for use in economic evaluations, and (3) do different response groups produce systematically different valuations, and if so, how can these be used to interpret preference results and to contribute to the development of clinical guidelines. </description>
    </item> <item>
      <title>Individual differences in the use of the response scale determine valuations of hypothetical health states: An empirical study (Article)</title>
      <link>http://repub.eur.nl/res/pub/36912/</link>
      <pubDate>2007-05-23T00:00:00Z</pubDate>
      <description>Background. The effects of socio-demographic characteristics of the respondent, including age, on valuation scores of hypothetical health states remain inconclusive. Therefore, we analyzed data from a study designed to discriminate between the effects of respondents' age and time preference on valuations of health states to gain insight in the contribution of individual response patterns to the variance in valuation scores. Methods. A total of 212 respondents from three age groups valued the same six hypothetical health states using three different methods: a Visual Analogue Scale (VAS) and two variants of the Time trade-off (TTO). Analyses included a generalizability study, principal components analysis, and cluster analysis. Results. Valuation scores differed significantly, but not systematically, between valuation methods. A total of 36.8% of variance was explained by health states, 1.6% by the elicitation method, and 0.2% by age group. Individual differences in the use of the response scales (e.g. a tendency to give either high or low TTO scores, or a high or low scoring tendency on the VAS) were the main source of remaining variance. These response patterns were not related to age or other identifiable respondent characteristics. Conclusion. Individual response patterns in this study were more important determinants of TTO or VAS valuations of health states than age or other respondent characteristics measured. Further valuation research should focus on explaining individual response patterns as a possible key to understanding the determinants of health state valuations. </description>
    </item> <item>
      <title>Individual differences in the use of the response scale determine valuations of hypothetical health states: an empirical study (Article)</title>
      <link>http://repub.eur.nl/res/pub/10787/</link>
      <pubDate>2007-01-01T00:00:00Z</pubDate>
      <description>ABSTRACT: BACKGROUND: The literature remains inconclusive about the effects of socio-demographic characteristics of the respondent, including age, on valuation scores of hypothetical health states. We analyzed data from a study designed to discriminate between the effects of respondents age and time preference on valuations of health states to get insight in the contribution of individual response patterns to the variance in valuation scores. METHODS: 212 respondents from different age groups valued six hypothetical health states with three methods: a Visual Analogue Scale (VAS) and two variants of the Time trade-off (TTO). Analyses included a generalizability study, principal components analysis and cluster analysis. RESULTS: Valuation scores differed significantly but not systematically between valuation methods. A total of 36.8% of variance was explained by health states, 1.6% by elicitation method and 0.2% by age group. Individual differences in the use of the response scales, e.g. a tendency to give either high or low TTO-scores, or a high or low scoring tendency on the VAS were the main source of remaining variance. These response patterns were not related to age or other identifiable respondent characteristics. CONCLUSIONS: We conclude that individual response patterns were more important determinants of TTO or VAS valuations of health states than age or other measured respondent characteristics. Further valuation research should focus on explaining individual response patterns as a possible key to understanding the determinants of health state valuations.</description>
    </item> <item>
      <title>Estimating clinical morbidity due to ischemic heart disease and congestive heart failure: the future rise of heart failure (Article)</title>
      <link>http://repub.eur.nl/res/pub/8596/</link>
      <pubDate>1994-01-01T00:00:00Z</pubDate>
      <description>OBJECTIVES. Many developed countries have seen declining mortality rates
          for heart disease, together with an alleged decline in incidence and a
          seemingly paradoxical increase in health care demands. This paper presents
          a model for forecasting the plausible evolution of heart disease
          morbidity. METHODS. The simulation model combines data from different
          sources. It generates acute coronary event and mortality rates from
          published data on incidences, recurrences, and lethalities of different
          heart disease conditions and interventions. Forecasts are based on
          plausible scenarios for declining incidence and increasing survival.
          RESULTS. Mortality is postponed more than incidence. Prevalence rates of
          morbidity will decrease among the young and middle-aged but increase among
          the elderly. As the milder disease states act as risk factors for the more
          severe states, effects will culminate in the most severe disease states
          with a disproportionate increase in older people. CONCLUSIONS. Increasing
          health care needs in the face of declining mortality rates are no
          contradiction, but reflect a tradeoff of mortality for morbidity. The
          aging of the population will accentuate this morbidity increase.</description>
    </item> <item>
      <title>Long-term follow-up after attempted angioplasty of saphenous vein grafts: the Thoraxcenter experience 1981-1988 (Article)</title>
      <link>http://repub.eur.nl/res/pub/4414/</link>
      <pubDate>1991-01-01T00:00:00Z</pubDate>
      <description>Between 1981 and 1988, 107 percutaneous transluminal coronary angioplasty (PTCA) procedures, including repeat PTCA, were performed in 84 patients with previous coronary artery bypass grafting (CABG). Fifty-nine patients underwent a first angioplasty of the vein graft alone, and 25 underwent a first PTCA of the graft and one or more native vessels. Seventeen patients underwent two procedures, four patients three procedures and one patient four procedures. In 84 first angioplasties, 133 lesions were attempted; 40 lesions in native vessels and 93 graft lesions (28 ostial stenoses, 33 shaft stenoses, and 32 stenoses at the distal anastomosis). Three patients died during their hospital stay. Two patients underwent emergency CABG. Seven patients sustained an acute myocardial infarction (AMI), among whom five underwent a PTCA of an occluded vessel. The clinical primary success rate per patient was 82%. After five years, 70% of patients were alive. At a median follow-up of 2.1 years, 41% of patients were alive and event-free (no AMI, no repeat CABG, no repeat PTCA). Symptomatic improvement was maintained in 36% of patients. Angioplasty of grafts may be an alternative to re-operation in selected patients with previous bypass surgery.</description>
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