EPICure Study Research Articles

Screening for autism in preterm children: diagnostic utility of the Social Communication Questionnaire

ObjectivePreterm survivors are at high risk for autism spectrum disorders (ASD). The diagnostic utility of the Social Communication Questionnaire (SCQ) in screening for ASD was assessed in extremely preterm children...

Extremely preterm births: end-of-life decisions in European countries

ObjectiveTo explore the influence of end-of-life decisions (EoL-D) on survival and mortality data in the light of differences reported among European countries.DesignWe collected the published data of several epidemiological studies:...

Lung function and respiratory symptoms at 11 years in children born extremely preterm: the EPICure study.

The long-term respiratory sequelae of infants born extremely preterm (EP) and now graduating from neonatal intensive care remains uncertain. To assess the degree of respiratory morbidity and functional impairment at 11 years in children born EP (i.e., at or less than 25 completed weeks of gestation) in relation to neonatal determinants and current clinical status. Pre- and postbronchodilator spirometry were undertaken at school in children born EP and classroom control subjects. Physical examination and respiratory health questionnaires were completed. Multivariable regression was used to estimate the predictive power of potential determinants of lung function. Spirometry was obtained in 182 of 219 children born EP (129 with prior bronchopulmonary dysplasia [BPD]) and 161 of 169 classmates, matched for age, sex, and ethnic group. Children born EP had significantly more chest deformities and respiratory symptoms than classmates, with twice as many (25 vs. 13%; P < 0.01) having a current diagnosis of asthma. Baseline spirometry was significantly reduced (P < 0.001) and bronchodilator responsiveness was increased in those born EP, the changes being most marked in those with prior BPD. EP birth, BPD, current symptoms, and treatment with beta-agonists are each associated independently with lung function z-scores (adjusted for age, sex, and height) at 11 years. Fifty-six percent of children born EP had abnormal baseline spirometry and 27% had a positive bronchodilator response, but less than half of those with impaired lung function were receiving any medication. After extremely preterm birth, impaired lung function and increased respiratory morbidity persist into middle childhood, especially among those with BPD. Many of these children may not be receiving appropriate treatment.

Psychiatric Disorders in Extremely Preterm Children: Longitudinal Finding at Age 11 Years in the EPICure Study

To investigate the prevalence and risk factors for psychiatric disorders in extremely preterm children. All babies born <26 weeks gestation in the United Kingdom and Ireland from March through December 1995 were recruited to the EPICure Study. Of 307 survivors at 11 years of age, 219 (71%) were assessed alongside 153 term-born classmates. Parents completed a structured psychiatric interview about their child, and teachers completed a corresponding questionnaire from which DSM-IV diagnoses were assigned for 219 (100%) extremely preterm children and 152 (99%) classmates. An IQ test and a physical evaluation were also administered. Longitudinal data were available for extremely preterm children. Extremely preterm children were more than three times more likely to have a psychiatric disorder than classmates (23% vs. 9%; odds ratio [OR] = 3.2; 95% confidence interval [CI] = 1.7, 6.2). Risk was significantly increased for: attention-deficit/hyperactivity disorder (ADHD; 11.5% vs. 2.9%; OR = 4.3; CI = 1.5 to 13.0), with increased risk for ADHD inattentive subtype (OR = 10.5; CI = 1.4 to 81.1) but not ADHD combined subtype (OR = 2.1; CI = 0.5 to 7.9); emotional disorders (9.0% vs. 2.1%; OR = 4.6; CI = 1.3 to 15.9), with increased risk for anxiety disorders (OR = 3.5; CI = 1.0 to 12.4); and autism spectrum disorders (8.0% vs. 0%; p = .000). Psychiatric disorders were significantly associated with cognitive impairment (OR = 3.5; CI = 1.8 to 6.4). Parent-reported behavioral problems at 2.5 and 6 years were independent predictors of psychiatric disorders at 11 years. Extremely preterm children are at increased risk for ADHD, emotional disorders, and autism spectrum disorders at 11 years of age. The mechanism of association with psychiatric disorder may include both cognitive impairment and early traumatic experiences that have an impact on both child and parent. Early screening for cognitive and behavioral problems may identify those at greatest risk.

The EPICure study: maximal exercise and physical activity in school children born extremely preterm

RationaleEvidence regarding exercise capacity and physical activity in children born extremely preterm (EP) is limited. Since survivors remain at high risk for developing bronchopulmonary dysplasia (BPD) and long-term pulmonary sequelae,...

Costs and Health Utilities Associated with Extremely Preterm Birth: Evidence from the EPICure Study

To estimate costs and health utilities associated with extremely preterm birth at approximately 11 years of age using evidence from a whole population study (the EPICure study). The study population comprised surviving children born at 20 through 25 completed weeks of gestation in all 276 maternity units in the United Kingdom and Republic of Ireland from March through December 1995 and a control group of classmates born at full term, matched for age, sex, and ethnic group. Estimates of utilization of health, social, and education services were combined with unit costs derived from primary and secondary sources. Generalized liner regression was used to estimate the impact of extremely preterm birth on public sector costs during the 11th year of life. Suboptimal levels of function for each of the eight attributes of the Health Utilities Index Mark III (cognition, vision, hearing, speech, ambulation, dexterity, emotion, and pain) and multiplicative multi-attribute utility scores were compared between the extremely preterm children and their classmates. Tobit regressions were performed to explore the effects of gestational age at birth on the Health Utilities Index Mark III multiattribute utility score. Mean (standard deviation [SD]) public sector costs over the 12-month period were 6484 UK pounds (5548 pounds) for the combined extremely preterm group and 4007 pounds (2537 pounds) for their classmates, generating a mean cost difference of 2477 UK pounds(bootstrap 95% confidence interval [CI] 1605 pounds, 3360 pounds) that was statistically significant (P < 0.001). The generalized linear models revealed that compared to birth at term, birth at < or =23 completed weeks, 24(+0)-24(+6) weeks and 25(+0)-25(+6) weeks gestation increased public sector costs by an average of 2417 UK pounds (95% CI 60 pounds, 4774 pounds; P = 0.044), 1528 UK pounds (95% CI 129 pounds, 2927 pounds; P = 0.032) and 1501 UK pounds (95% CI 428 pounds, 2574 pounds; P = 0.006), respectively. In all eight attributes of the Health Utilities Index Mark III, there were significantly higher proportions of suboptimal levels of function among the extremely preterm children (P < or = 0.05). The mean (SD) multiattribute utility score for the extremely preterm children as a cohort was 0.789 (0.264), compared to 0.956 (0.102) for the classmates born at term, a mean difference in utility score of 0.167 (95% CI 0.124, 0.209) that was statistically significant (P < 0.001). The Tobit regressions revealed that, compared to birth at term, birth at < or =23 completed weeks, 24(+0)-24(+6) weeks and 25(+0)-25(+6) weeks gestation reduced the Health Utilities Index Mark III multi-attribute utility score by an average of 0.312 (95% CI 0.169, 0.455; P < 0.001), 0.337 (95% CI 0.235, 0.439; P < 0.001) and 0.243 (95% CI 0.159, 0.327; P < 0.001), respectively. The results of this study should be used to inform the development of future economic evaluations of interventions aimed at preventing extremely preterm birth or alleviating its effects.

Single‐centre vs. population‐based outcome data of extremely preterm infants at the limits of viability

In response to the disappointing outcome data of the population-based EPICure study published in 2000, we compared the outcome of infants 22 0/7 to 25 6/7 weeks of gestational age (GA) in a single tertiary care centre 2000-2004 with that of EPICure. EPICure tools and definitions, including 30 months' Bayley Scales. Of 83 infants <26 weeks born alive, more were admitted to intensive care--82% vs. 68% (p < 0.0001)--and more infants survived to discharge (57% vs. 26%, p < 0.0001; 69% vs. 39%, p < 0.01, of those admitted to intensive care). More infants, as a percentage of live births, survived without severe (41%, 34/83 vs. 20%, 233/1185, p < 0.0001) or overall disability (22%, 18/83 vs. 13%, 155/1185, p = 0.03). However, at the border of viability--GA 23 and 24 weeks--the rate of infants surviving without overall disability was not significantly higher (13%, 6/45 vs. 9%, 56/623). In infants <26 weeks of GA, increased rates of survival and survival without disability were observed in a single-centre inborn cohort born 5-8 years later than the EPICure cohort. This did not translate into increased survival without overall disability in infants of 23-24 weeks of GA.

Improving survival for infants of

For infants born at extremely low gestations there is significant morbidity and mortality with wide variation in reported outcomes.1 2 The EPICure study has informed perinatal decision-making at gestations of...

Academic attainment and special educational needs in extremely preterm children at 11 years of age: the EPICure study

Aim:To assess academic attainment and special educational needs (SEN) in extremely preterm children in middle childhood.Methods:Of 307 extremely preterm (⩽25 weeks) survivors born in the UK and Ireland in 1995,...

The EPICure study: growth and blood pressure at 6 years of age following extremely preterm birth

The EPICure study: growth and blood pressure at 6 years of age following extremely preterm birth

Academic attainment and special educational needs in extremely preterm children at 11 years of age: the EPICure study

Academic attainment and special educational needs in extremely preterm children at 11 years of age: the EPICure study

Care of the Very Low-birthweight Infant

1. Robert Angert, MD 1. Albert Einstein College of Medicine Children's Hospital at Montefiore Bronx, NY 1. Henry M. Adam, MD, Editor, In Brief Medical Staff Guidelines for Periviability Pregnancy Counseling and Medical Treatment of Extremely Premature Infants. Kaempf JW, Tomlinson M, Arduza C, et al. Pediatrics. 2006:117 :22– 29[OpenUrl][1][Abstract/FREE Full Text][2] The S.T.A.B.L.E. Program: Post-resuscitation/Pre-transport Stabilization Care of Sick Infants . 5th ed. Karlsen KA, ed. Elk Grove Village, Ill: American Academy of Pediatrics; 2006 Care of the Extremely Low-birth-weight Infant. Eichenwald EC. In: Taeusch HW, Ballard RA, Gleason CA, eds. Avery's Diseases of the Newborn. 8th ed. Philadelpia, Pa: Elsevier Saunders; 2005:410– 426 Textbook of Neonatal Resuscitation. 5th ed. Elk Grove Village, Ill; Dallas, Tex: American Academy of Pediatrics and American Heart Association; 2006. Hospital Discharge of the High-risk Neonate–Proposed Guidelines . American Academy of Pediatrics. Committee on Fetus and Newborn. Pediatrics. 1998;102 :411– 417[OpenUrl][3][Abstract/FREE Full Text][4] Motor and Executive Function at 6 Years of Age after Extremely Preterm Birth. Marlow N, Hennessy EM, Bracewell MA, Wolke D. EPICure Study Group. Pediatrics. 2007;120 :793– 804[OpenUrl][5][Abstract/FREE Full Text][6] Increasing survival among extremely preterm infants has focused more attention on these babies, who are smaller in birthweight and lower in gestational age. Technological and therapeutic advances have improved during the past 2 decades, increasing survival among the smallest, most immature infants, some as young as 22 to 23 weeks’ gestation. Successful resuscitation and stabilization of the extremely preterm infant requires clinicians trained in delivery room preparation and management as well as immediate newborn care needs of such infants. Particular attention must be paid to the prevention of hypothermia, maintenance of glucose homeostasis, and provision of appropriate nutrition support, as well as the prevention of lung injury, retinopathy of prematurity (ROP), and infection. Once alerted that a preterm baby will be born, a member of the neonatal team should meet with the expectant family. The … [1]: {openurl}?query=rft.jtitle%253DPediatrics%26rft.stitle%253DPediatrics%26rft.issn%253D0031-4005%26rft.aulast%253DKaempf%26rft.auinit1%253DJ.%2BW.%26rft.volume%253D117%26rft.issue%253D1%26rft.spage%253D22%26rft.epage%253D29%26rft.atitle%253DMedical%2BStaff%2BGuidelines%2Bfor%2BPeriviability%2BPregnancy%2BCounseling%2Band%2BMedical%2BTreatment%2Bof%2BExtremely%2BPremature%2BInfants%26rft_id%253Dinfo%253Adoi%252F10.1542%252Fpeds.2004-2547%26rft_id%253Dinfo%253Apmid%252F16396856%26rft.genre%253Darticle%26rft_val_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Ajournal%26ctx_ver%253DZ39.88-2004%26url_ver%253DZ39.88-2004%26url_ctx_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Actx [2]: /lookup/ijlink?linkType=ABST&journalCode=pediatrics&resid=117/1/22&atom=%2Fpedsinreview%2F30%2F1%2F32.atom [3]: {openurl}?query=rft.jtitle%253DPediatrics%26rft.stitle%253DPediatrics%26rft.issn%253D0031-4005%26rft.aulast%253DCommittee%2Bon%2BFetus%2Band%2BNewborn%26rft.auinit1%253D%2B%26rft.volume%253D102%26rft.issue%253D2%26rft.spage%253D411%26rft.epage%253D417%26rft.atitle%253DHospital%2BDischarge%2Bof%2Bthe%2BHigh-Risk%2BNeonate--Proposed%2BGuidelines%26rft_id%253Dinfo%253Adoi%252F10.1542%252Fpeds.102.2.411%26rft_id%253Dinfo%253Apmid%252F9685443%26rft.genre%253Darticle%26rft_val_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Ajournal%26ctx_ver%253DZ39.88-2004%26url_ver%253DZ39.88-2004%26url_ctx_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Actx [4]: /lookup/ijlink?linkType=ABST&journalCode=pediatrics&resid=102/2/411&atom=%2Fpedsinreview%2F30%2F1%2F32.atom [5]: {openurl}?query=rft.jtitle%253DPediatrics%26rft.stitle%253DPediatrics%26rft.issn%253D0031-4005%26rft.aulast%253DMarlow%26rft.auinit1%253DN.%26rft.volume%253D120%26rft.issue%253D4%26rft.spage%253D793%26rft.epage%253D804%26rft.atitle%253DMotor%2Band%2BExecutive%2BFunction%2Bat%2B6%2BYears%2Bof%2BAge%2BAfter%2BExtremely%2BPreterm%2BBirth%26rft_id%253Dinfo%253Adoi%252F10.1542%252Fpeds.2007-0440%26rft_id%253Dinfo%253Apmid%252F17908767%26rft.genre%253Darticle%26rft_val_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Ajournal%26ctx_ver%253DZ39.88-2004%26url_ver%253DZ39.88-2004%26url_ctx_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Actx [6]: /lookup/ijlink?linkType=ABST&journalCode=pediatrics&resid=120/4/793&atom=%2Fpedsinreview%2F30%2F1%2F32.atom

The EPICure study: Comparison of pediatric spirometry in community and laboratory settings

Accuracy of spirometry testing is a prerequisite for its use as an objective outcome measure in large epidemiological studies. We compared spirometry measurements obtained by trained pediatricians in a variety of school settings with those obtained in the laboratory by respiratory physiologists. Following a 3-day training course, three pediatricians carried out spirometry in children born extremely preterm (EP) and age matched controls in schools across the UK and Ireland (The EPICure study). A subgroup had repeated measurements in the laboratory. Spirometric flows and volumes were expressed as Z-scores. Bland-Altman analysis was used to calculate within-subject differences. Fifty children (40% boys), 37 (74%) of whom were born EP, with a mean age 10.8 years had paired spirometry results (average interval between tests: 20.3 weeks). There was no statistically significant difference between any of the outcome variables: mean (95% CI of difference) in Z-scores [school-laboratory]) being 0.0 (-0.1; 0.1) for FEV(1), 0.1 (-0.1; 0.3) for FVC, -0.1 (-0.3; 0.1) for FEF(25-75), and 0.0 (-0.3; 0.1) for FEV(1)/FVC. Within individuals, the 95% limits of agreement for repeated measures were within +/- 1 Z-score for FEV(1) and FVC, and within +/- 1.5 Z-score for FEF(25-75) and FEV(1)/FVC. With appropriate training, quality control, and support, pediatric spirometry can reliably be performed outside the lung function laboratory.

Impact of Intensive Care Practices on Short-Term and Long-term Outcomes for Extremely Preterm Infants: Comparison Between the British Isles and France

The objective of this study was to compare practices of care and outcomes of infants who were born between 23 and 25 weeks' gestation in 1995 in the British Isles and in 1997-1998 in France. We examined 2 population-based cohorts in the British Isles (1892 births included) and in France (456 births): the EPICure and EPIPAGE studies. The rate of follow-up was 90% at 30 months and 86% at 2 years. At 5 to 6 years, the cognitive function of 64% of the children without severe disability was assessed in the EPICure study and 57% in the EPIPAGE study. The mortality rate of live-born infants was lower in the EPICure study (25%) than in the EPIPAGE study (34%) before admission to a NICU but higher in the NICU (45% vs 29%, respectively), such that there was no difference in the proportions of survivors at discharge after adjustment for gestational age. The risk for severe brain lesions was 24% among infants who were admitted to a NICU in both studies, 41% in the EPICure study versus 67% in the epidemiologic study on great prematurity (EPIPAGE) among infants who died after discontinued treatment in NICU, and 17% vs 11% among survivors at discharge. The risk for cerebral palsy at 24 to 30 months was 20% in the EPICure study versus 16% in the EPIPAGE study, whereas the risk for overall cognitive score of <70 at 5 to 6 years was 10% vs 14%, respectively. Despite apparent differences in the modalities of limitation of intensive care, the outcomes of infants who were born at 23 to 25 weeks' gestation in the EPICure and EPIPAGE studies were not significantly different.

Pervasive Behavior Problems at 6 Years of Age in a Total-Population Sample of Children Born at ≤25 Weeks of Gestation

The goal was to test whether extremely preterm children have more pervasive behavior problems than classroom peers, by using parent and teacher consensus reports. Is there an excess number of extremely preterm boys with behavior problems? A total-population study of all extremely preterm children in the United Kingdom and Ireland was performed. All children born at </=25 weeks of gestation in the United Kingdom and Ireland between March and December 1995 were assessed at 76 months of age (range: 62-87 months) (EPICure study). Pervasive behavior problems were defined as scoring >90th percentile on parent and teacher reports with a standard behavior scale, the Strengths and Difficulties Questionnaire. Of the 241 of 308 survivors who responded (78% of survivors), 200 had full reports on behavior problems from teachers and parents; they were compared with 148 control children. A total of 19.4% of extremely preterm children (boys: 23.2%; girls: 15.6%), compared with 3.4% of control children (boys: 4.6%; girls: 2.5%) had total behavior scores in the clinical range. Hyperactivity (extremely preterm: 30.6%; control: 8.8%) and conduct problems (extremely preterm: 12.5%; control: 5.4%) could be accounted for by cognitive deficits, but attention (extremely preterm: 33.3%; control: 6.8%), peer (extremely preterm: 25.4%; control: 5.4%), and emotional (extremely preterm: 13.5%; control: 4.1%) problems were not explained by poor cognitive functioning. Extremely preterm boys had behavior problems in excess of gender differences found in the control group in hyperactivity, attention, and prosocial problems, and the impact on parents and teachers was greater for extremely preterm boys than girls. Pervasive behavior problems are more frequent in children born at the limits of viability than previously reported for larger preterm populations. Extremely preterm boys seem most vulnerable, and the impact on parents and teachers is considerable.

Outcomes for children born at 25 weeks gestation or less

The EPICure Study has provided us with excellent population based short- and long-term outcomes for a population-based cohort of infants born at 25 weeks gestation or less in 1995. At six years of age, these very preterm infants had median IQ scores 24 points lower than scores for a carefully selected peer group. Wolke et al now report extensive testing for language and school achievement and questions whether the language and learning deficits are specific problems or if they seem to simply reflect cognitive deficits resulting from the lower IQ scores.

The EPICure study: growth and blood pressure at 6 years of age following extremely preterm birth

Background:Preterm children are at risk for reduced growth in early childhood, which may predispose them to later changes in blood pressure (BP).Objective:To study growth and BP in extremely preterm (EP)...

EPICure: facts and figures: why preterm labour should be treated

The principal objective of the EPICure studies was to determine both short- and long-term outcomes of extremely preterm birth. Data were collected for all births before 26 completed weeks of gestation in the UK and Republic of Ireland for 10 months in 1995. Of 811 infants admitted to neonatal units, 314 (39%) survived. Of these, 283 (92%) were assessed at 2.5 years and 241 (78%) at 6 years, together with a comparator group selected from classmates in normal schools. At 6 years, 32 (13%) of those assessed had disabling cerebral palsy and 31 (13%) had severe sensory impairment. Cognitive impairment was a more frequent adverse outcome: the mean intelligence quotient (IQ) was 82 (SD 19). Fifty children (21%) had IQs > 3 SD less than that of the comparator group, and in 48 children (20%), IQ was 2-3 SD less than that of the comparator group. Infants whose mothers had received antenatal steroids had fewer severely abnormal head scan findings. In this population, abnormal head scan findings are independent predictors of reduced, severe motor disability at 2.5 years. Using step-wise logistic regression analysis, postnatal transfer was associated with severe motor disability; prolonged membrane rupture with reduced Mental Development Index (MDI) and antenatal steroid with increased MDI. It is clear that factors around the time of birth are critical in determining outcome, irrespective of later complications during neonatal intensive care. Since 1995, there is good evidence of improved survival, but it is not clear whether or not the number of survivors with severe adverse outcomes has changed. A new cohort of births <27 completed weeks is currently being collected in English maternity units. Data collection around the time of birth is more detailed than in 1995 in order to better explore the relationship between perinatal factors and later outcomes.

What Standards Apply to Resuscitation at the Borderline of Gestational Age?

What Standards Apply to Resuscitation at the Borderline of Gestational Age?

The EPICure study: associations and antecedents of neurological and developmental disability at 30 months of age following extremely preterm birth

Aims: To describe perinatal factors associated with later morbidity among extremely preterm children at 30 months of age corrected for prematurity. Population: Of 308 surviving children born at ⩽25 weeks...