Search

Multiple births (twins or higher order multiples) are increasing in developed countries and may present higher risk for cerebral palsy (CP). However, few studies can reliably investigate trends over time because these outcomes are relatively rare.Objective: We pooled data from European CP registers to investigate CP birth prevalence and its trends among single and multiple births born between 1990 and 2008.Design: Population cohort study.Setting: 12 population-based registers from the Surveillance of Cerebral Palsy in Europe collaboration.Participants: 4 446 125 single and multiple live births, of whom 8416 (0.19%) had CP of prenatal or perinatal origin.Main Outcomes: CP diagnosis ascertained in childhood using harmonised methods; CP subtype; Motor impairment severity among CP cases.Results: The rate of multiple births increased from 1990. Multiples displayed higher risk for CP (RR=4.27, 95% CI 4.00 to 4.57). For singletons and multiples alike, risk for CP was higher among births of lower gestational age (GA) or birth weight (BW). However, CP birth prevalence declined significantly among very preterm (<32 weeks) and very low BW (<1500 g) multiples. Singletons and multiples with CP displayed similar severity of motor impairment.Conclusions: Between 1990 and 2008, CP birth prevalence decreased steadily among multiples with low GA or BW. Furthermore, multiples with CP display similar profiles of severe motor impairment compared with CP singletons. Improvements in management of preterm birth since the 1990s may also have been responsible for providing better prospects for multiples. [ABSTRACT FROM AUTHOR]

Objective: To explore parents' perceptions and experience of being approached for enrolment of their preterm infant in more than one trial or study.Design: A qualitative study involving 17 in-depth semistructured interviews, with parents who had been approached for multiple studies and who subsequently consented for their infant(s) to join at least one. Parents who declined all studies were not approached.Setting and Participants: Parents of preterm infants receiving care at one of three neonatal intensive care units in the north of England.Findings: Most parents did not view concurrent participation in multiple trials or studies as a significant issue within the wider context of their infant's care. Most parents did not feel pressured into enrolling their infant into more than one study, but some suggested that participation in several provided justification for the subsequent refusal to join others, articulating feeling of guilt at saying 'no', and others appeared fatigued by multiple approaches. Parents focused on the perceived risks and benefits of each individual study and, while acknowledging that making a fully informed decision was not possible, largely agreed due to their belief in the benefits of research, trust in the health professionals caring for their baby and a range of complex personal motivations.Conclusions: Parents valued the autonomy to make decisions about participation and felt, with hindsight, that their decisions were right. Research teams could be more aware of parental feelings of guilt or gratitude that may motivate them to give consent. Similarly, the capacity of parents to fully remember details of multiple studies when they are stressed, and their infant is sick, should be taken into consideration, and continued efforts should be made to ensure ongoing consent to participation. [ABSTRACT FROM AUTHOR]

Aim: Intrauterine growth restriction (IUGR) is associated with poorer outcomes in later life. We used a monochorionic twin model with IUGR in one twin to determine its impact on growth and neurocognitive outcomes.Methods: Monochorionic twins with ≥20% birth weight discordance born in the north of England were eligible. Cognitive function was assessed using the British Ability Scales. The Strength and Difficulties Questionnaire was used to identify behavioural problems. Auxological measurements were collected. Generalised estimating equations were used to determine the effects of birth weight on cognition.Results: Fifty-one monochorionic twin pairs were assessed at a mean age of 6.3 years. Mean birth weight difference was 664 g at a mean gestation of 34.7 weeks. The lighter twin had a General Conceptual Ability (GCA) score that was three points lower (TwinL -105.4 vs TwinH -108.4, 95% CI -0.9 to -5.0), and there was a significant positive association (B 0.59) of within-pair birth weight differences and GCA scores. Mathematics and memory skills showed the largest differences. The lighter twin at school age was shorter (mean difference 2.1 cm±0.7) and lighter (mean difference 1.9 kg±0.6). Equal numbers of lighter and heavier twins were reported to have behavioural issues.Conclusions: In a monochorionic twin cohort, fetal growth restriction results in lower neurocognitive scores in early childhood, and there remain significant differences in size. Longer term follow-up will be required to determine whether growth or cognitive differences persist in later child or adulthood, and whether there are any associated longer term metabolic sequelae. [ABSTRACT FROM AUTHOR]

Introduction Published prevalence rates of congenital diaphragmatic hernia (CDH) vary. This study aims to describe the epidemiology of CDH using data from highquality, population-based registers belonging to the European Surveillance of Congenital Anomalies (EUROCAT). Methods Cases of CDH delivered between 1980 and 2009 notified to 31 EUROCAT registers formed the population-based case series. Prevalence over time was estimated using multilevel Poisson regression, and heterogeneity between registers was evaluated from the random component of the intercept. Results There were 3373 CDH cases reported among 12 155 491 registered births. Of 3131 singleton cases, 353 (10.4%) were associated with a chromosomal anomaly, genetic syndrome or microdeletion, 784 (28.2%) were associated with other major structural anomalies. The male to female ratio of CDH cases overall was 1:0.69. Total prevalence was 2.3 (95% CI 2.2 to 2.4) per 10 000 births and 1.6 (95% CI 1.6 to 1.7) for isolated CDH cases. There was a small but significant increase (relative risk (per year)= 1.01, 95% credible interval 1.00-1.01; p=0.030) in the prevalence of total CDH over time but there was no significant increase for isolated cases (ie, CDH cases that did not occur with any other congenital anomaly). There was significant variation in total and isolated CDH prevalence between registers. The proportion of cases that survived to 1 week was 69.3% (1392 cases) for total CDH cases and 72.7% (1107) for isolated cases. Conclusions This large population-based study found an increase in total CDH prevalence over time. CDH prevalence also varied significantly according to geographical location. No significant association was found with maternal age. [ABSTRACT FROM AUTHOR]

Background: Partial urorectal septum malformation (pURSM) sequence (or 'persistent cloaca') is a rare congenital anomaly characterised by a joining of the urethral, anal, and genital openings into a single common channel. This study describes the epidemiology of pURSM sequence in England and Wales including prevalence, additional anomalies, and pregnancy outcomes. Methods: All cases of pURSM sequence prospectively notified to seven congenital anomaly registers in England and Wales during 1985-2010, whether delivered as live births, spontaneous fetal deaths (>20 weeks' gestation), or elective terminations of pregnancy for fetal anomaly (TOPFA, any gestation), formed this population-based cohort. The risks of spontaneous fetal and infant death were examined by Kaplan-Meier analysis. Differences in prevalence over time, and between regions, were examined by multilevel Poisson regression. Results: 117 cases were recorded among 4 251 241 total births. Six (5%) pregnancies resulted in spontaneous fetal deaths, 53 (45%) in TOPFA, and 58 (50%) in live births. The prevalence was 2.8 (95% CI 2.3 to 3.4) per 100 000 total births, increasing significantly over time (p=0.002) and differing significantly between regions (p=0.005). 77 cases (66%) had at least one additional major congenital anomaly outside the perineum, including 67 (57%) renal, 29 (25%) musculoskeletal, 26 (23%) digestive system, and 24 (21%) cardiovascular anomalies. The risks of spontaneous fetal and infant death were estimated as 8.9% (95% CI 4.1 to 18.8) and 26.3% (95% CI 15.1 to 43.4) respectively. Conclusions: This is the largest study of the epidemiology of pURSM sequence. The information will be valuable for families and health professionals whenever a case of pURSM sequence is diagnosed. [ABSTRACT FROM AUTHOR]

The author looks at a study related to the randomized controlled trials (RCTs) in neonatal intensive care (NIC) and pediatric intensive care (PIC). Topics discussed include impact of report on the design and conduct of future RCTs in infants and children, survey of trials and centers which revealed the high mortality rates of infants who participated in NIC trails in comparison to PIC participants and health professional revealed the parental needs subsequent to trial enrolment.

Objective To investigate changes in rates of cerebral palsy (CP) by birth weight, gestational age, severity of disability, clinical subtype and maternal age in the North of England, 1991-2000. Methods Data on 908 cases of CP (816 singletons, 92 multiples) were analysed from the prospective population-based North of England Collaborative Cerebral Palsy Survey. Severity of disability, measured as a Lifestyle Assessment Score (LAS), was derived from the lifestyle assessment questionnaire. CP rates by birth weight, gestational age, birth weight standardised for gestational age and sex, severity of disability and maternal age were compared between 1991-1995 and 1996-2000 using rate ratios (RR). Results The prevalence of CP in singletons was 2.46 (95% CI 2.29 to 2.63) per 1000 neonatal survivors compared to 11.06 per 1000 (95% CI 8.81 to 13.3) in multiples (RR 4.49, 95% CI 3.62 to 5.57), with no significant change between quinquennia. The singleton CP rates were higher for lower birth weight groups than birth weight ≥2500 g; and there were no significant changes for any birth weight group between quinquennia. There were also no changes in rates of more severe disability (LAS≥30%) by birth weight, gestation or clinical subtype. For preterm and term births the patterns of Z-score of birth weight-for-gestation are similar, with CP rates increasing as Z-score deviates from the optimal weight-for-gestation, which is about 1 SD above the mean. Conclusions In contrast to increasing rates in previous years, rates of CP and more severe CP were stable by birth weight, gestational age and clinical subtype for 1991-2000. [ABSTRACT FROM AUTHOR]