High variability of individual longitudinal motor performance over five years in very preterm infants.

AIM: To determine longitudinal motor performance in very preterm (VPT) infants from 6 months to 5 years of age for the entire cohort of infants, according to gender and gestational age and at the individual level. METHOD: Single-center, prospective longitudinal study of 201 VPT infants (106 boys) without severe impairments. OUTCOMES: Motor performance was assessed with the Bayley Scales of Infant Development (BSID-II-MS: 6, 12, 24 months) and the Movement Assessment Battery for Children (MABC-2-NL: 5 years). RESULTS: At 6, 12, and 24 months and then at 5 years, 77%, 80%, 48%, and 22% of the infants, respectively, showed delayed motor performance (<-1SD). At 5 years, girls performed significantly better than boys in manual dexterity and balance. MIXED MODEL ANALYSES: that examined interactions between time and gender and time and gestational age, revealed no significant interactions. The variance at child level was 29%. Linear mixed model analysis revealed that mean z-scores of -1.46 at 6 months of age declined significantly to -0.52 at 5 years. Individual longitudinal motor performance showed high variability. IMPLICATIONS: Longitudinal motor performance improved almost 1 SD over five years. However, the variability of individual longitudinal motor performance hampers evaluation in clinical care and research.

Changing Dutch approach and trends in short-term outcome of periviable preterms.

BACKGROUND: In 2006, the Dutch guideline for active treatment of extremely preterm neonates advised to lower the gestational age threshold for active intervention from 26 0/7 to 25 0/7 weeks gestation. OBJECTIVE: To evaluate the association between the guideline modification and early neonatal outcome. DESIGN: National cohort study, using prospectively collected data from The Netherlands Perinatal Registry. PATIENTS: The study population consisted of 9713 infants with a gestational age between 24 0/7 and 29 6/7 weeks, born between 2000 and 2011. Three gestational age subgroups were analysed: 24 0/7 to 24 6/7 weeks (n=269), 25 0/7 to 25 6/7 weeks (n=852) and 26 0/7 to 29 6/7 weeks (n=8592). MAIN OUTCOME MEASURES: Neonatal intensive care unit (NICU) admission, live births, neonatal in-hospital mortality, morbidity and favourable outcome (no mortality or morbidity) before (2000-2005; period 1) and after (2007-2011; period 2) introduction of the modified guideline, using χ(2) tests and univariable and multivariable logistic regression analyses. RESULTS: In the second period, the proportion of live births and NICU admissions increased and the proportion of neonatal and in-hospital mortality decreased significantly in all subgroups. Morbidity in surviving infants of 25 weeks increased significantly, although the association between guideline modification and morbidity became non-significant after case-mix adjustment. Overall, favourable outcome did not change significantly after guideline modification in all subgroups when adjusted for variation in case-mix. CONCLUSIONS: Overall, the trend in mortality gradually declined at all gestational ages, starting before 2006. This suggests that the guideline modification was a formalisation of already existing daily practice.

[The impact of a premature birth on the family; consequences are experienced even after 19 years]. / Impact van vroeggeboorte op het gezin: ook na 19 jaar ondervinden families nog gevolgen.

OBJECTIVE: A premature birth can cause parental stress, anxiety and uncertainty. This study illustrates the long-term consequences of a preterm birth for family life. DESIGN: Retrospective study by questionnaire. METHOD: Parents of 959 children, who were born in 1983 with a gestational age of less than 32 weeks or a birth weight of less than 1500 grams, were approached when their children turned 19 years old. We investigated various aspects of their family lives by means of a written questionnaire. RESULTS: We received completed questionnaires back from 595 parents (62%). The divorce rate was higher in families with a disabled child (26 vs. 14%). Working mothers (n = 257) and fathers (n = 506) experienced negative consequences in their workplace (36% and 2%, respectively). The risk factor was having a handicapped child. Financial problems were present in 11% of the families during the first year and 4% still experienced financial problems after 19 years; risk factors were a handicap, male gender and a low social-economic status (SES) of the parents. Of the respondents, 26% had observed a decrease in social activities and friends during the first year and 15% felt that family and friends provided insufficient support during this year. After 19 years, 4% of the respondents still experienced a negative influence on their social lives. Risk factors were a handicap, normal birth weight (no dysmaturity), male gender and low SES. 28% of parents expressed that during the first year having a preterm child was emotional challenging or difficult to accept. After 19 years, 3% still expressed an unfavourable effect of the preterm birth. Risk factors were handicap, dysmaturity and male gender. CONCLUSION: A premature birth has a great impact on the family, especially when the child has a handicap.

Development of a movement quality measurement tool for children.

BACKGROUND: Pediatric physical therapists assess the quantity and quality of children's motor skills. Several quantitative motor tests are currently available, but a concise measurement tool of observable movement quality (OMQ) is lacking. OBJECTIVE: The purpose of this study was to develop an OMQ measurement tool for children from the perspective of pediatric physical therapists. DESIGN: A qualitative, 3-phase study involving pediatric physical therapists was conducted. METHODS: The first phase consisted of 7 semistructured interviews. The second phase comprised a structured meeting using a nominal group technique, with the interviewees required to identify the most relevant OMQ aspects. The third phase comprised a Delphi technique involving 61 pediatric physical therapy experts with the aim of achieving at least 80% agreement on relevance, terminology, and definitions of OMQ aspects. RESULTS: Across all 3 phases, 32 aspects based on different theoretical constructs were considered. Fifteen aspects were included in the measurement. The pediatric physical therapy experts achieved at least 80% agreement on the definitions of 14 OMQ aspects: automated movements, asymmetry in movements, variation in movements, appropriate gross motor movements, fluency of movements, reduced muscle tone, increased muscle tone, involuntary movements, accuracy, slow/delayed movements, accelerated/abrupt movements, tremors, strength regulation, and stereotyped movements. The definition of appropriate fine motor movements achieved 75% agreement. This aspect was included because gross and fine motor movements are complementary. The aspects were scored using a 5-point Likert scale, with a total score ranging from 15 to 75 and with a higher score indicating a better OMQ. CONCLUSION: The OMQ scale, a concise measurement tool with 15 defined aspects, was developed. Content validity was obtained, but before the OMQ scale can be used in clinical practice, studies on reliability, construct validity, and responsiveness are needed.

Unstable longitudinal motor performance in preterm infants from 6 to 24 months on the Bayley Scales of Infant Development--Second edition.

Preterm birth increases the risk for neurologic and developmental disabilities and therefore long-term follow-up is important. This prospective follow-up study aims to describe longitudinal motor performance in preterm infants from 6 to 24 months and to detect the influence of risk factors on motor performance trajectories. We included preterm infants (n=348) with a gestational age of ≤32 weeks. The Bayley Scales of Infant Development, 2nd edition (BSID-II) Motor Scale and the Behaviour Rating Scale were recorded at the corrected ages of 6, 12 and 24 months. The Motor Scale raw score was the dependent variable in random coefficient analysis for risk factors in the cohort if infants with cerebral damage were in- and excluded. The raw score increased, showed the highest correlation (rp=0.48-0.67) and was more stable than the PDI and its classification. Fifteen percent of the infants had a stable classification, while 45% changed one class. Male sex and intra-ventricular haemorrhage (IVH) lowered the raw scores. Higher motor quality scores and height increased the raw scores, while the influence of maternal education varied at different time points. Removal of infants with cerebral damage from the cohort did not change the risk factors. The results showed that the raw score trajectories were more stable, but after corrections for norm data, the measurements became highly unstable. This is clinically important when reporting results to parents, guiding intervention and in randomised trials. The risk factors predominantly influenced the level of motor performance raw scores. Maternal education additionally influenced the trajectory and should be included in randomisation procedures.

Weight of in vitro fertilization and intracytoplasmic sperm injection singletons in early childhood.

Birth weight and longitudinal growth in the first 4 years of life of term singletons conceived with the use of IVF and intracytoplasmic sperm injection (ICSI) were compared with those of naturally conceived singletons. Although IVF and ICSI singletons had a statistically significantly lower birth weight than naturally conceived singletons, the average individual weight curves showed that this difference was lost before the age of 4 years in all subgroups: IVF, ICSI, boys, and girls.

A model to predict motor performance in preterm infants at 5 years.

BACKGROUND: Approximately 60% of preterm infants who are assessed at 5 years for motor performance in a standardized multidisciplinary follow-up program are found to have normal results, indicating that, for these children, routine motor assessment at this age is unnecessary. AIM: To improve the efficiency of our follow-up practice for motor assessment by developing a model to predict motor performance of preterm infants at 5 years with a maximal sensitivity (>or=90%). STUDY DESIGN: Longitudinal design. SUBJECTS: We included preterm infants (n=371) with a gestational age of

Motor performance in five-year-old extracorporeal membrane oxygenation survivors: a population-based study.

INTRODUCTION: Veno-arterial extracorporeal membrane oxygenation (VA-ECMO) is a cardio-pulmonary bypass technique to provide life support in acute reversible cardio-respiratory failure when conventional management is not successful. Most neonates receiving ECMO suffer from meconium aspiration syndrome (MAS), congenital diaphragmatic hernia (CDH), sepsis or persistent pulmonary hypertension (PPH). In five-year-old children who underwent VA-ECMO therapy as neonates, we assessed motor performance related to growth, intelligence and behaviour, and the association with the primary diagnosis. METHODS: In a prospective population-based study (n = 224) 174 five-year-old survivors born between 1993 and 2000 and treated in the two designated ECMO centres in the Netherlands (Radboud University Medical Centre Nijmegen and Sophia Children's Hospital, Erasmus MC - University Medical Center Rotterdam) were invited to undergo follow-up assessment including a paediatric assessment, the movement assessment battery for children (MABC), the revised Amsterdam intelligence test (RAKIT) and the child behaviour checklist (CBCL). RESULTS: Twenty-two percent of the children died before the age of five, 86% (n = 149) of the survivors were assessed. Normal development in all domains was found in 49% of children. Severe disabilities were present in 13%, and another 9% had impaired motor development combined with cognitive and/or behavioural problems. Chi-squared tests showed adverse outcome in MABC scores (P < 0.001) compared with the reference population in children with CDH, sepsis and PPH, but not in children with MAS. Compared with the Dutch population height, body mass index (BMI) and weight for height were lower in the CDH group (P < 0.001). RAKIT and CBCL scores did not differ from the reference population. Total MABC scores, socio-economic status, growth and CBCL scores were not related to each other, but negative motor outcome was related to lower intelligence quotient (IQ) scores (r = 0.48, P < 0.001). CONCLUSIONS: The ECMO population is highly at risk for developmental problems, most prominently in the motor domain. Adverse outcome differs between the primary diagnosis groups. Objective evaluation of long-term developmental problems associated with this highly invasive technology is necessary to determine best evidence-based practice. The ideal follow-up programme requires an interdisciplinary team, the use of normal-referenced tests and an international consensus on timing and actual outcome measurements.

Functional outcomes and participation in young adulthood for very preterm and very low birth weight infants: the Dutch Project on Preterm and Small for Gestational Age Infants at 19 years of age.

OBJECTIVE: Young adults who were born very preterm or with a very low birth weight remain at risk for physical and neurodevelopmental problems and lower academic achievement scores. Data, however, are scarce, hospital based, mostly done in small populations, and need additional confirmation. METHODS: Infants who were born at < 32 weeks of gestation and/or with a birth weight of < 1500 g in The Netherlands in 1983 (Project on Preterm and Small for Gestational Age Infants) were reexamined at age 19. Outcomes were adjusted for nonrespondents using multiple imputation and categorized into none, mild, moderate, or severe problems. RESULTS: Of 959 surviving young adults, 74% were assessed and/or completed the questionnaires. Moderate or severe problems were present in 4.3% for cognition, 1.8% for hearing, 1.9% for vision, and 8.1% for neuromotor functioning. Using the Health Utility Index and the London Handicap Scale, we found 2.0% and 4.5%, respectively, of the young adults to have > or = 3 affected areas in activities and participation. Special education or lesser level was completed by 24%, and 7.6% neither had a paid job nor followed any education. Overall, 31.7% had > or = 1 moderate or severe problems in the assessed areas. CONCLUSIONS: A total of 12.6% of young adults who were born very preterm and/or with a very low birth weight had moderate or severe problems in cognitive or neurosensory functioning. Compared with the general Dutch population, twice as many young adults who were born very preterm and/or with a very low birth weight were poorly educated, and 3 times as many were neither employed nor in school at age 19.

Lower mortality but higher neonatal morbidity over a decade in very preterm infants.

Better perinatal care has led to better survival of very preterm children, but may or may not have increased the number of children with cerebral and pulmonary morbidity. We therefore investigated the relationship between changes in perinatal care during one decade, and short-term outcome in very preterm infants. Perinatal risk factors and their effects on 28-day and in-hospital mortality, and on intraventricular haemorrhage and bronchopulmonary dysplasia (BPD) in survivors, were compared in two surveys of very preterm singleton infants in the Netherlands. Between 1983 and 1993, 28-day mortality decreased from 52.1% to 31.8% in infants of 25-27 weeks' gestation and from 15.2% to 11.3% in infants of 28-31 weeks' gestation. The incidence of intraventricular haemorrhage in survivors did not change (44.4% and 43.3% in infants of 25-27 weeks' gestation, and 29.0% and 24.0% in infants of 28-31 weeks' gestation). The incidence of BPD in survivors increased from 40.3% to 60.0% in infants of 25-27 weeks' gestation and remained similar in infants of 28-31 weeks' gestation (8.5% and 9.8% respectively). In multivariable analysis, higher mortality was associated with congenital malformation, low gestational age, low birthweight, no administration of steroids before birth, low Apgar scores and intraventricular haemorrhage, in 1983 as well in 1993, and with male gender in 1993. The effect of maternal age on mortality diminished significantly between 1983 and 1993. Intraventricular haemorrhage in surviving children was associated with low gestational age and artificial ventilation, both in 1983 and in 1993. The effect of artificial ventilation on the incidence of intraventricular haemorrhage diminished significantly between 1983 and 1993. BPD was associated with low gestational age and artificial ventilation, both in 1983 and in 1993, and with low birthweight and caesarean section in 1993. We conclude that the better survival of very preterm infants, especially of those of 25-27 weeks' gestation, has been accompanied by a similar incidence (and thus with an increased absolute number) of children with intraventricular haemorrhage and by an increased incidence of children with BPD.

Outcome of perinatal care for very preterm infants at 5 years of age: a comparison between 1983 and 1993.

Perinatal mortality in very preterm infants has decreased by up to 50% during the last decades. Studies of changes of long-term outcome are inconclusive. We studied the visual, auditory, neuromotor, cognitive and behavioural development of two geographically defined populations of very preterm, singleton infants, born in 1983 and in 1993, and analysed the relationship between perinatal risk factors and outcomes. The incidence of disabling cerebral palsy increased from 6.0% to 11.1% (OR 2.45 [95% CI 1.11, 5.38]). Impaired vision and strabismus decreased significantly, presumably by continuous monitoring of pO(2). Hearing problems, the need for special education and the incidence of behavioural problems did not change over time. The proportion of children who showed optimal performance in every developmental domain increased from 29.5% in 1983 to 43.2% in 1993. Cerebral palsy was associated with male gender in 1983, with low Apgar score and intraventricular haemorrhage in 1993, and with seizures both in 1983 and in 1993. The intensiveness of neonatal treatment has increased, leading to the survival of many more healthy infants, but at the cost of more infants with cerebral damage. Modern perinatal care is no longer limited by the devastating effects of pulmonary problems as it was in the past, but fails to safeguard cerebral integrity in very preterm infants.

Serotypes, genotypes, and antibiotic susceptibility profiles of group B streptococci causing neonatal sepsis and meningitis before and after introduction of antibiotic prophylaxis.

We studied the characteristics of strains isolated from neonates with group B streptococci sepsis and meningitis, before and after the introduction of antibiotic prophylaxis in The Netherlands. In 1999, 1 year after this introduction the serotype and genotype distribution and the susceptibility patterns of the GBS strains had not changed. Penicillins remain drugs of first choice to prevent and treat neonatal GBS disease.

Follow-up of newborns treated with extracorporeal membrane oxygenation: a nationwide evaluation at 5 years of age.

INTRODUCTION: Extracorporeal membrane oxygenation (ECMO) is a supportive cardiopulmonary bypass technique for babies with acute reversible cardiorespiratory failure. We assessed morbidity in ECMO survivors at the age of five years, when they start primary school and major decisions for their school careers must be made. METHODS: Five-year-old neonatal venoarterial-ECMO survivors from the two designated ECMO centres in The Netherlands (Erasmus MC--Sophia Children's Hospital in Rotterdam, and University Medical Center Nijmegen) were assessed within the framework of an extensive follow-up programme. The protocol included medical assessment, neuromotor assessment, and psychological assessment by means of parent and teacher questionnaires. RESULTS: Seventeen of the 98 children included in the analysis (17%) were found to have neurological deficits. Six of those 17 (6% of the total) showed major disability. Two of those six children had a chromosomal abnormality. Three were mentally retarded and profoundly impaired. The sixth child had a right-sided hemiplegia. These six children did not undergo neuromotor assessment. Twenty-four of the remaining 92 children (26%) showed motor difficulties: 15% actually had a motor problem and 11% were at risk for this. Cognitive delay was identified in 11 children (14%). The mean IQ score was within the normal range (IQ = 100.5). CONCLUSION: Neonatal ECMO in The Netherlands was found to be associated with considerable morbidity at five years of age. It appeared feasible to have as many as 87% of survivors participate in follow-up assessment, due to cooperation between two centres and small travelling distances. Objective evaluation of the long-term morbidity associated with the application of this highly invasive technology in the immediate neonatal period requires an interdisciplinary follow-up programme with nationwide consensus on timing and actual testing protocol.

Neonatal group B streptococcal infection: incidence and strategies for prevention in Europe.

We sent a questionnaire to all members of the European Society for Paediatric Infectious Diseases and to all delegates of the European Association of Perinatal Medicine to determine existing policies for prevention of neonatal group B streptococcal (GBS) infection in Europe. The incidence of GBS colonization in pregnant women and of neonatal GBS infection varies. Policies for prevention of GBS infection are not well-developed.

Epidemiology of neonatal group B streptococcal disease in The Netherlands 1997-98.

Group B streptococcal (GBS) infection is still an important cause of morbidity and mortality in newborn infants. In The Netherlands, there are no published data on the incidence of neonatal GBS infection. We collected data of all infants with GBS disease during the first 3 months of life, as reported to the Dutch Paediatric Surveillance Unit (DPSU) during a period of 2 years (1997-98). Neonates with early-onset GBS disease (both sepsis and probable sepsis) were included for further analysis. The level of completeness of the DPSU data was determined by capture-recapture techniques. The incidence of early-onset GBS disease in The Netherlands in 1997-98, as calculated from the DPSU data, was 0.9 per 1000 live births. After correction for under-reporting, the incidence was estimated to be 1.9 per 1000 live births. The case fatality rate of early-onset GBS disease was only 5%. Despite the decrease in the mortality rate during the last decades, it remains a serious condition with potential irreversible brain damage. Therefore, formal guidelines for the prevention of neonatal early-onset GBS disease in The Netherlands were introduced in 1999. The data collected in this study may serve as baseline data for evaluation of the effect of these guidelines.