Factors associated with the increased incidence of necrotising enterocolitis in extremely preterm infants in Sweden between two population-based national cohorts (2004-2007 vs 2014-2016).

OBJECTIVE: To investigate potential risk factors behind the increased incidence of necrotising enterocolitis (NEC) in Swedish extremely preterm infants. DESIGN: Registry data from two population-based national cohorts were studied. NEC diagnoses (Bell stage ≥II) were validated against hospital records. PATIENTS: All liveborn infants <27 weeks of gestation 2004-2007 (n=704) and 2014-2016 (n=895) in Sweden. MAIN OUTCOME MEASURES: NEC incidence. RESULTS: The validation process resulted in a 28% reduction of NEC cases but still confirmed a higher NEC incidence in the later epoch compared with the earlier (73/895 (8.2%) vs 27/704 (3.8%), p=0.001), while the composite of NEC or death was lower (244/895 (27.3%) vs 229/704 (32.5%), p=0.022). In a multivariable Cox regression model, censored for mortality, there was no significant difference in early NEC (0-7 days of life) between epochs (HR=0.9 (95% CI 0.5 to 1.9), p=0.9), but being born in the later epoch remained an independent risk factor for late NEC (>7 days) (HR=2.7 (95% CI 1.5 to 5.0), p=0.001). In propensity score analysis, a significant epoch difference in NEC incidence (12% vs 2.8%, p<0.001) was observed only in the tertile of infants at highest risk of NEC, where the 28-day mortality was lower in the later epoch (35% vs 50%, p=0.001). More NEC cases were diagnosed with intramural gas in the later epoch (33/73 (45.2%) vs 6/26 (23.1%), p=0.047). CONCLUSIONS: The increase in NEC incidence between epochs was limited to cases occurring after 7 days of life and was partly explained by increased survival in the most extremely preterm infants. Misclassification of NEC is common.

Neurobehavioral symptoms in children born extremely preterm: A Swedish National Study.

AIM: To determine the prevalence of neurobehavioral symptoms at 6.5 years in children born extremely preterm (EPT, <27 weeks' gestation). METHODS: Population-based cohort study of infants born EPT in Sweden from 2004 to 2007. Of 486 survivors 375 were assessed and compared with 369 matched term-born controls. EPT children free from neurosensory and intellectual disabilities (neurodevelopmental disabilities [NDD]-free, n = 236) were compared separately. Standardised questionnaires were used to assess parental ratings of hyperactivity and attention, emotional, peer-relation, conduct and social problems; and deficits in perception, language and memory. RESULTS: EPT children had more reported problems in all assessed neurobehavioral domains than controls, with more than three times greater odds for most outcomes. Except for conduct problems, increased problems were identified also in NDD-free children. The odds of having neurobehavioral problems in ≥3 co-occurring domains were five (whole EPT group) and three (NDD-free group) times higher than in controls. CONCLUSION: EPT children with or without NDD have more neurobehavioral problems in multiple domains than term peers. Ongoing assessments of behaviour until school age or beyond should recognise early symptoms of attention, everyday social problems, perceptual, emotional or language difficulties.

One-year survival and outcomes of infants born at 22 and 23 weeks of gestation in Sweden 2004-2007, 2014-2016 and 2017-2019.

OBJECTIVE: To explore associations between perinatal activity and survival in infants born at 22 and 23 weeks of gestation in Sweden. DESIGN/SETTING: Data on all births at 22 and 23 weeks' gestational age (GA) were prospectively collected in 2004-2007 (T1) or obtained from national registers in 2014-2016 (T2) and 2017-2019 (T3). Infants were assigned perinatal activity scores based on 3 key obstetric and 4 neonatal interventions. MAIN OUTCOME: One-year survival and survival without major neonatal morbidities (MNM): intraventricular haemorrhage grade 3-4, cystic periventricular leucomalacia, surgical necrotising enterocolitis, retinopathy of prematurity stage 3-5 or severe bronchopulmonary dysplasia. The association of GA-specific perinatal activity score and 1-year survival was also determined. RESULTS: 977 infants (567 live births and 410 stillbirths) were included: 323 born in T1, 347 in T2 and 307 in T3. Among live-born infants, survival at 22 weeks was 5/49 (10%) in T1 and rose significantly to 29/74 (39%) in T2 and 31/80 (39%) in T3. Survival was not significantly different between epochs at 23 weeks (53%, 61% and 67%). Among survivors, the proportions without MNM in T1, T2 and T3 were 20%, 17% and 19% for 22 weeks and 17%, 25% and 25% for 23 weeks' infants (p>0.05 for all comparisons). Each 5-point increment in GA-specific perinatal activity score increased the odds for survival in first 12 hours of life (adjusted OR (aOR) 1.4; 95% CI 1.3 to 1.6) in addition to 1-year survival (aOR 1.2; 95% CI 1.1 to 1.3), and among live-born infants it was associated with increased survival without MNM (aOR 1.3; 95% CI 1.1 to 1.4). CONCLUSION: Increased perinatal activity was associated with reduced mortality and increased chances of survival without MNM in infants born at 22 and 23 weeks of GA.

Predictive value of Bayley-III Motor Index for later motor difficulties in children born extremely preterm.

AIM: To investigate the predictive ability of the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III) Motor Index, in children born extremely preterm (<27 gestational weeks) without cerebral palsy. METHODS: Children from the EXPRESS study (all extremely preterm births in Sweden, 2004-2007) without neurosensory impairments assessed with Bayley-III at 2.5 years corrected age and Movement Assessment Battery for Children, Second Edition (MABC-2), at 6.5 years comprised the eligible study population (n = 282). Motor difficulty was defined as MABC-2 ≤5th percentile. RESULTS: Motor difficulties were found in 57 of 282 children (20.2%) at 6.5 years. The Bayley-III explained 18.0% of the variance in the MABC-2 (p < 0.001). The area under the receiver operating curve was 0.71 (95% confidence interval 0.64-0.79, p < 0.001). At a Bayley-III cut-off value of 85, sensitivity, specificity and positive and negative predictive values for motor difficulties were 26.3% (15.5-39.7), 92.9% (88.1-95.9), 48.4% (33.0-64.0) and 83.3% (80.9-85.4). Likelihood ratios were inconclusive. CONCLUSION: The Bayley-III at 2.5 years corrected age was a modest predictor of motor outcome in children born extremely preterm at 6.5 years, and underestimated the rate of motor difficulties. Children require follow-up beyond preschool age.

Perinatal risk factors for developmental coordination disorder in children born extremely preterm.

AIM: Children born extremely preterm frequently have developmental coordination disorder (DCD). We aimed to evaluate perinatal risk factors for DCD. METHODS: Swedish national cohort study including 226 children born before 27 gestational weeks without major neurodevelopmental disabilities at 6.5 years. Outcome was DCD, defined as ≤5th percentile on the Movement Assessment Battery for Children-Second Edition. Perinatal risk factors were evaluated using multivariable logistic regression. RESULTS: DCD was present in 84/226 (37.2%) children. Of the risk factors known at 40 weeks gestation, independent and significant risk factors for DCD were: mother's age at delivery (odds ratio [OR] 1.73, 95% confidence interval [CI] 1.07-2.80); pre-eclampsia (2.79, 1.14-6.80); mother born in a non-Nordic country (2.23, 1.00-4.99); gestational age per week increase (0.70, 0.50-0.99) and retinopathy of prematurity (2.48, 1.26-4.87). Of factors known at discharge, postnatal steroids exposure (2.24, 1.13-4.46) and mechanical ventilation (1.76, 1.06-2.09) were independent risk factors when added to the model in separate analyses. CONCLUSION: The risk of DCD in children born extremely preterm was multifactorial and associated with gestational age largely mediated by ROP, maternal factors, pre-eclampsia, administration of postnatal steroids and mechanical ventilation. These risk factors are common among children born extremely preterm, contributing to their high risk of DCD.

Cognitive profiles of extremely preterm children: Full-Scale IQ hides strengths and weaknesses.

AIM: To study whether a specific cognitive profile can be identified for children born extremely preterm (EPT) by investigating: 1) strengths and weaknesses not revealed by Full-Scale IQ, 2) overlap between different cognitive deficits and 3) proportion of EPT children with multiple deficits. METHODS: We analysed data from the 4th version of Wechsler Intelligence Scales for Children in EPT children (n = 359) and matched controls (n = 367), collected within the 6.5-year follow-up of a population-based prospective cohort study. RESULTS: Extremely preterm children performed worse than controls on all measures. Group differences were the largest in Perceptual Reasoning (PRI) and Working Memory (WMI), but differences between indices were small. However, when conducting categorical analyses, deficits in PRI and/or WMI were not more common than other combinations. Many EPT children had no or mild cognitive deficits, although often in multiple domains. CONCLUSION: Extremely preterm children had greater weaknesses in working memory and perceptual abilities. However, detailed analyses of cognitive subscales showed large heterogeneity and provided no support for a specific cognitive profile. In conclusion, Full-Scale IQ scores hide strengths and weaknesses and individual profiles for EPT children need to be considered in order to provide appropriate support.

Prolonged Tracheal Intubation and the Association Between Patent Ductus Arteriosus and Bronchopulmonary Dysplasia: A Secondary Analysis of the PDA-TOLERATE trial.

In the PDA-TOLERATE trial, persistent (even for several weeks) moderate to large patent ductus arteriosus (PDA) was not associated with an increased risk of BPD when the infant required <10 days of intubation. However, in infants requiring intubation for ≥10 days, prolonged PDA exposure (≥11 days) was associated with an increased risk of moderate/severe BPD.

Risk for Behavioral Problems Independent of Cognitive Functioning in Children Born at Low Gestational Ages.

This study aimed to investigate cognitive and behavioral outcomes in relation to gestational age (GA) in school-aged children born preterm (PT). Results from the Wechsler Intelligence Scale for Children, 4th edition (WISC-IV), and the Child Behavior Checklist (CBCL) were analyzed in 51 children (mean age: 7.8 years [range: 7.0-8.7]) born PT (mean GA: 31 weeks [range: 23-35]; birth weight, mean: 1,637 g [range: 404-2,962]) with the majority (96%) having no diagnosed cognitive, sensory, or motor impairments. The control group included 57 age-matched typically developing children (mean age: 7.9 years [range: 6.2-8.7]) born full-term (FT). Children born PT, extremely PT (GA < 28) in particular, showed significantly lower cognitive performance and higher behavioral problem scores compared with children born FT. GA was found to predict aspects of both cognitive functioning and behavioral problems within the PT group, with lower GA being related to both poorer cognitive outcomes and elevated affective and attention-deficit/hyperactivity problems. Global cognitive functioning did not independently predict aspects of behavioral outcomes. Findings demonstrate that, even in children born PT without severe perinatal and/or postnatal complications and receiving active perinatal care, a short gestation is an evident risk factor for long-term negative effects on mental health independent of cognitive functioning. Additional findings suggest that both reduced growth and lower parental educational level may contribute to increased risk for poorer cognitive and behavioral functioning in children born PT.

Lean Tissue Deficit in Preterm Infants Persists up to 4 Months of Age: Results from a Swedish Longitudinal Study.

BACKGROUND: At term-equivalent age, infants born prematurely are shorter, lighter and have more adipose tissue compared to term counterparts. Little is known on whether the differences in body composition persist in later age. METHODS: We prospectively recruited 33 preterm infants (<32 weeks gestational age, mean gestational age 28.1 weeks) and 69 term controls. Anthropometry and body composition (air displacement plethysmography) were monitored up to 4 months of age. Nutrient intakes from preterm infants were collected from clinical records. RESULTS: At 4 months of age preterm infants were lighter and shorter than term controls (mean weight-for-age z-score: -0.73 vs. 0.06, p = 0.001; mean length-for-age z-score: -1.31 vs. 0.29, p < 0.0001). The significantly greater percentage of total body fat seen in preterm infants at term-equivalent age (20.2 vs. 11.7%, p < 0.0001) was no longer observed at 4 months. A deficit of fat-free mass persisted until 4 months of age (fat-free mass at term-equivalent age: 2.71 vs. 3.18 kg, p < 0.0001; at 4 months: 4.3 vs. 4.78 kg, p < 0.0001). The fat mass index and fat-free mass index (taking length into account) did not differ between the groups. Nutrition had little effect on body composition. Higher protein intake at week 2 was a negative predictor of fat-free mass at discharge. CONCLUSIONS: At 4 months corrected age, preterm infants were both lighter and shorter than term controls and the absolute fat-free mass deficit remained until this age. Little effect of nutrition on body composition was observed.

Parents of extremely and moderately preterm children reported long-lasting impressions of medical care and the hospital environment.

AIM: Few studies have examined the parents of moderately preterm children. The aim of this study was to investigate the experiences of parents of both extremely and moderately preterm children. METHODS: Qualitative telephone interviews were conducted in 2013-2014 with 13 mothers and 10 fathers of extremely preterm children and with 11 mothers and seven fathers of moderately preterm children. The children were born between 2000 and 2003. Data were analysed with a narrative approach. RESULTS: Parents of extremely preterm children recounted dramatic birth stories that, for most, ended positively. Parents of moderately preterm children presented more neutral birth stories, and most recounted that their children did not receive attention for prematurity from medical staff. Parents from both groups described staff members' treatment in terms of long-lasting impressions, and they were deeply affected by the hospital environment and the other parents and children admitted. Parents whose children died or were disabled recounted dramatic stories and endless fights for support. CONCLUSION: Parents from both groups reported long-lasting impressions of the medical staff and the hospital environment, which they found important to talk about, even a decade after the birth of their child/children.

Parents of preterm children narrate constructive aspects of their experiences.

AIMS AND OBJECTIVES: To explore how parents of preterm infants express the constructive aspects of their experiences. Using the notion of post-traumatic growth as a back-drop, this study supplements the research on parents' difficulties by providing a more nuanced understanding of what it is like to have a preterm child. BACKGROUND: Researchers have reported that parents feel afraid, worried, helpless, powerless, guilty and stressed, as well as that preterm birth can be associated with physical and psychological ill health among parents; however, a few researchers have found indications of post-traumatic growth among parents. DESIGN: This study includes qualitative interviews and relates to COREQ guidelines for reporting qualitative research. METHODS: A total of 13 mothers and 10 fathers of extremely preterm children, as well as 11 mothers and 7 fathers of moderately preterm children, were interviewed. The data analysis was based on thematic analysis. RESULTS: The analysis resulted in six themes that describe various constructive aspects of having a preterm child: acceptance of the fact that events do not always occur as planned; gratitude and reconsideration of the situation; reappraisal of close relationships; reliance on one's own ability to deal with events; thankfulness for what one has; and openness to being exposed to various kinds of people and their experiences. CONCLUSIONS: The parents recounted constructive aspects of their experiences such as an altered understanding of themselves, others and life itself. These themes provide a more nuanced way of understanding how parents can relate to having preterm children. RELEVANCE TO CLINICAL PRACTICE: This knowledge can help professionals to enable parents to activate their social network and to acknowledge their care for each other, as well as to help parents see beyond cultural ideals regarding childbirth and family life and to find their own solutions to everyday life.

Comparative effectiveness of drugs used to constrict the patent ductus arteriosus: a secondary analysis of the PDA-TOLERATE trial (NCT01958320).

OBJECTIVE: To evaluate the effectiveness of drugs used to constrict patent ductus arteriosus (PDA) in newborns < 28 weeks. METHODS: We performed a secondary analysis of the multi-center PDA-TOLERATE trial (NCT01958320). Infants with moderate-to-large PDAs were randomized 1:1 at 8.1 ± 2.1 days to either Drug treatment (n = 104) or Conservative management (n = 98). Drug treatments were assigned by center rather than within center (acetaminophen: 5 centers, 27 infants; ibuprofen: 7 centers, 38 infants; indomethacin: 7 centers, 39 infants). RESULTS: Indomethacin produced the greatest constriction (compared with spontaneous constriction during Conservative management): RR (95% CI) = 3.21 (2.05-5.01)), followed by ibuprofen = 2.03 (1.05-3.91), and acetaminophen = 1.33 (0.55-3.24). The initial rate of acetaminophen-induced constriction was 27%. Infants with persistent moderate-to-large PDA after acetaminophen were treated with indomethacin. The final rate of constriction after acetaminophen ± indomethacin was 60% (similar to the rate in infants receiving indomethacin-alone (62%)). CONCLUSION: Indomethacin was more effective than acetaminophen in producing ductus constriction.

Association Between Year of Birth and 1-Year Survival Among Extremely Preterm Infants in Sweden During 2004-2007 and 2014-2016.

Importance: Since 2004-2007, national guidelines and recommendations have been developed for the management of extremely preterm births in Sweden. If and how more uniform management has affected infant survival is unknown. Objective: To compare survival of extremely preterm infants born during 2004-2007 with survival of infants born during 2014-2016. Design, Setting and Participants: All births at 22-26 weeks' gestational age (n = 2205) between April 1, 2004, and March 31, 2007, and between January 1, 2014, and December 31, 2016, in Sweden were studied. Prospective data collection was used during 2004-2007. Data were obtained from the Swedish pregnancy, medical birth, and neonatal quality registries during 2014-2016. Exposures: Delivery at 22-26 weeks' gestational age. Main Outcomes and Measures: The primary outcome was infant survival to the age of 1 year. The secondary outcome was 1-year survival among live-born infants who did not have any major neonatal morbidity (specifically, without intraventricular hemorrhage grade 3-4, cystic periventricular leukomalacia, necrotizing enterocolitis, retinopathy of prematurity stage 3-5, or severe bronchopulmonary dysplasia). Results: During 2004-2007, 1009 births (3.3/1000 of all births) occurred at 22-26 weeks' gestational age compared with 1196 births (3.4/1000 of all births) during 2014-2016 (P = .61). One-year survival among live-born infants at 22-26 weeks' gestational age was significantly lower during 2004-2007 (497 of 705 infants [70%]) than during 2014-2016 (711 of 923 infants [77%]) (difference, -7% [95% CI, -11% to -2.2%], P = .003). One-year survival among live-born infants at 22-26 weeks' gestational age and without any major neonatal morbidity was significantly lower during 2004-2007 (226 of 705 infants [32%]) than during 2014-2016 (355 of 923 infants [38%]) (difference, -6% [95% CI, -11% to -1.7%], P = .008). Conclusions and Relevance: Among live births at 22-26 weeks' gestational age in Sweden, 1-year survival improved between 2004-2007 and 2014-2016.

PDA-TOLERATE Trial: An Exploratory Randomized Controlled Trial of Treatment of Moderate-to-Large Patent Ductus Arteriosus at 1 Week of Age.

OBJECTIVE: To compare early routine pharmacologic treatment of moderate-to-large patent ductus arteriosus (PDA) at the end of week 1 with a conservative approach that requires prespecified respiratory and hemodynamic criteria before treatment can be given. STUDY DESIGN: A total of 202 neonates of <28 weeks of gestation age (mean, 25.8 ± 1.1 weeks) with moderate-to-large PDA shunts were enrolled between age 6 and 14 days (mean, 8.1 ± 2.2 days) into an exploratory randomized controlled trial. RESULTS: At enrollment, 49% of the patients were intubated and 48% required nasal ventilation or continuous positive airway pressure. There were no differences between the groups in either our primary outcome of ligation or presence of a PDA at discharge (early routine treatment [ERT], 32%; conservative treatment [CT], 39%) or any of our prespecified secondary outcomes of necrotizing enterocolitis (ERT, 16%; CT, 19%), bronchopulmonary dysplasia (BPD) (ERT, 49%; CT, 53%), BPD/death (ERT, 58%; CT, 57%), death (ERT,19%; CT, 10%), and weekly need for respiratory support. Fewer infants in the ERT group met the rescue criteria (ERT, 31%; CT, 62%). In secondary exploratory analyses, infants receiving ERT had significantly less need for inotropic support (ERT, 13%; CT, 25%). However, among infants who were ≥26 weeks gestational age, those receiving ERT took significantly longer to achieve enteral feeding of 120 mL/kg/day (median: ERT, 14 days [range, 4.5-19 days]; CT, 6 days [range, 3-14 days]), and had significantly higher incidences of late-onset non-coagulase-negative Staphylococcus bacteremia (ERT, 24%; CT,6%) and death (ERT, 16%; CT, 2%). CONCLUSIONS: In preterm infants age <28 weeks with moderate-to-large PDAs who were receiving respiratory support after the first week, ERT did not reduce PDA ligations or the presence of a PDA at discharge and did not improve any of the prespecified secondary outcomes, but delayed full feeding and was associated with higher rates of late-onset sepsis and death in infants born at ≥26 weeks of gestation. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01958320.

Developmental Coordination Disorder and Its Association With Developmental Comorbidities at 6.5 Years in Apparently Healthy Children Born Extremely Preterm.

Importance: There are concerns that apparently healthy extremely preterm children face a risk of developing motor impairments, such as developmental coordination disorder. Objective: To evaluate the prevalence of developmental coordination disorder and associated comorbidities in a national cohort of apparently healthy children born at 22 to 26 gestational weeks, compared alongside term-born peers. Design, Setting, and Participants: This prospective, population-based cohort study included all children who were consecutively born at 22 to 26 gestational weeks in Sweden from April 1, 2004, through March 31, 2007. At 6.5 years, 441 preterm children were evaluated alongside 371 controls. A total of 275 preterm children (62.4%) and 359 term-born children (96.8%) did not have neurodevelopmental disabilities. Motor assessments were completed for 229 of 275 preterm children (83.3%) and 344 of 359 (95.8%) term-born children, who composed the final study sample. Main Outcomes and Measures: Developmental coordination disorder was defined as a score of the fifth percentile or lower on the Movement Assessment Battery for Children-Second Edition scale, using control group scores. Assessment tools included the Wechsler Intelligence Scale for Children-Fourth Edition, the Brown Attention-Deficit Disorder Scales, the Five to Fifteen questionnaire, and the Strengths and Difficulties questionnaire. Results: Of the 229 extremely preterm children and 344 term-born controls who underwent motor assessments, 115 (50.2%) and 194 (56.4%) were boys, respectively. Developmental coordination disorder was present in 85 of 229 (37.1%) preterm children and in 19 of 344 controls (5.5%) (adjusted odds ratio [OR], 7.92; 99% CI, 3.69-17.20). When preterm children with developmental coordination disorder were compared with term-born peers, the risk was increased for total behavioral problems, internalizing, externalizing, attentional problems, hyperactivity, perceptual problems, executive dysfunction, and poor social skills, with adjusted ORs varying from 2.66 (99% CI, 1.09-6.48) for time concepts to 9.06 (99% CI, 3.60-22.8) for attentional problems (all P < .01). When preterm children with and without developmental coordination disorder were compared, preterm children with developmental coordination disorder had more behavioral problems; the adjusted OR for total behavioral problems was 2.71 (99% CI, 1.15-6.37); for externalizing problems, 2.80 (99% CI, 1.10-7.12); for inattention, 3.38 (99% CI, 1.39-8.18); and for combined attention/hyperactivity problems, 3.68 (99% CI, 1.47-9.16) (all P < .01). Parents underestimated the children's motor problems and only a few of the children had received psychological care or physiotherapy. Conclusions and Relevance: Children who were born extremely preterm faced a high risk for developmental coordination disorder with associated comorbidities. Our findings support the importance of a structured follow-up of motor function, behavior, and cognition.

Impact of major neonatal morbidities on adolescents born at 23-25 weeks of gestation.

AIM: More infants born extremely preterm (EPT) are surviving, but major neonatal morbidities are consistently high. This study examined the impact of bronchopulmonary dysplasia (BPD), brain injuries and severe retinopathy of prematurity (ROP) on adolescents who were born EPT. METHODS: We focused on EPT infants born at 23-25 weeks at the Swedish university hospitals in Uppsala and Umeå from January 1992 to December 1998. The poor outcome data covered 140 of 142 who survived to 36 weeks, and the chronic conditions data reported by parents covered 132 of 134 still alive at 10-15 years. RESULTS: Of the 140 survivors at 36 weeks, 29 (21%) had poor outcomes: eight of 140 (6%) died, and 21 of 132 (16%) adolescent survivors had severe neurodevelopmental disabilities (NDD). BPD, severe ROP and/or brain injuries correlated independently with poor outcome. Of those adolescents who were free from BPD, brain injury and severe ROP, 6% had a severe NDD. The corresponding rates with any one, any two or all three neonatal morbidities were 21, 33 and 67%, respectively. BPD and brain injuries were associated with high rates of chronic conditions at 10-15 years of age resulting in functional limitations. CONCLUSION: In adolescent EPT survivors, BPD and brain injuries were associated with high rates of chronic conditions and special healthcare needs.

Cerebral Palsy in Extremely Preterm Infants.

BACKGROUND AND OBJECTIVES: The risk of cerebral palsy (CP) is high in preterm infants and is often accompanied by additional neurodevelopmental comorbidities. The present study describes lifetime prevalence of CP in a population-based prospective cohort of children born extremely preterm, including the type and severity of CP and other comorbidities (ie, developmental delay and/or cognitive impairment, neurobehavioral morbidity, epilepsy, vision and hearing impairments), and overall severity of disability. In this study, we also evaluate whether age at assessment, overall severity of disability, and available sources of information influence outcome results. METHODS: All Swedish children born before 27 weeks' gestation from 2004 to 2007 were included (the Extremely Preterm Infants in Sweden Study). The combination of neonatal information, information from clinical examinations and neuropsychological assessments at 2.5 and 6.5 years of age, original medical chart reviews, and extended chart reviews was used. RESULTS: The outcome was identified in 467 (94.5%) of eligible children alive at 1 year of age. Forty-nine (10.5%) children had a lifetime diagnosis of CP, and 37 (76%) were ambulatory. Fourteen (29%) had CP diagnosed after 2.5 years of age, 37 (76%) had at least 1 additional comorbidity, and 27 (55%) had severe disability. The probability for an incomplete evaluation was higher in children with CP compared with children without CP. CONCLUSIONS: Children born extremely preterm with CP have various comorbidities and often overall severe disability. The importance of long-term follow-up and of obtaining comprehensive outcome information from several sources in children with disabilities is shown.

Behavioral Patterns in Adolescents Born at 23 to 25 Weeks of Gestation.

BACKGROUND: This study examined mental health outcomes in extremely preterm children (EPT) born at 23 to 25 weeks of gestation between 1992 and 1998 at 2 Swedish tertiary care centers that offered regional and active perinatal care to all live-born EPT infants. METHODS: We assessed 132 (98%) of the 134 EPT survivors at 10 to 15 years of age alongside term-born controls. Behavioral and emotional problems were evaluated by using Achenbach's Child Behavior Checklist and Teacher Report Form and Conners' Parent and Teacher scales for attention-deficit/hyperactivity disorder. RESULTS: Parents and teachers reported significantly more problems with internalizing behaviors as well as attention, social, and thought problems in EPT children than in controls, even when those with major neurodevelopmental disabilities (NDDs) were excluded. Multivariate analysis of covariance of the behavioral problems reported by parents and teachers revealed no interactions, but significant main effects emerged for group status (EPT versus control) and sex, with all effect sizes being medium to large and accounting for 8% to 14% of the variance. Compared with the controls, EPT children without NDDs had significantly increased rates of ≥90th percentile for total Conners' attention-deficit/hyperactivity disorder problem scores (parents: 40% vs 15%, odds ratio: 3.7, P < .001) (teachers: 24% vs 9%, odds ratio: 3.3, P = .005). The corresponding rates were higher in the total population. CONCLUSIONS: EPT children with or without NDDs had behavioral problems characterized by a higher risk for anxiety and attention, social, and thought problems. These findings further strengthen the proposition that a preterm behavioral phenotype is recognizable in adolescents born EPT.

Chronic Conditions and Health Care Needs of Adolescents Born at 23 to 25 Weeks' Gestation.

OBJECTIVE: We examined chronic conditions, functional limitations, and special health care needs in extremely preterm children (EPT; 23-25 weeks' gestation) born between 1992 and 1998 at 2 Swedish tertiary care centers that offered regional and active perinatal care to all live-born EPT infants. METHODS: Of 134 surviving EPT children, 132 (98%) were assessed at 10 to 15 years of age alongside 103 term-born controls. Identification of children with functional limitations and special health care needs was based on a questionnaire administered to parents. Categorization of medical diagnoses and developmental disabilities was based on child examinations, medical record reviews, and parent questionnaires. RESULTS: In logistic regression analyses adjusting for social risk factors and sex, the EPT children had significantly more chronic conditions than the term-born controls, including functional limitations (64% vs 6%; odds ratio [OR], 15; 95% confidence interval [CI], 6.1-37.2; P < .001), compensatory dependency needs (60% vs 29%; OR, 3.8; 95% CI, 2.2-6.6; P < .001), and services above those routinely required by children (64% vs 25%; OR, 5.4; 95% CI, 3.0-9.6; P < .001). Specific diagnoses and disabilities for the EPT group versus controls included cerebral palsy (9.1% vs 0%; P < .001), asthma (21.2% vs 6.8%; P = 001), IQ < -2 SD (31.1% vs 4.9%; P < .001), poor motor skills without neurosensory impairment (21.9% vs 1.9%; P < .001), and psychiatric conditions (15.2% vs 1.9%; P < .001). CONCLUSIONS: Adolescents born EPT have considerable long-term health and educational needs. Few had severe impairments that curtailed major activities of daily life.