[Outcome of Extremely Low Birth Weight Children in Iceland 1988-2012].

INTRODUCTION: Extremely low birth weight (ELBW) children (birth weight ≤1000 g) are at risk of adverse neurodevelopmental outcome. The objectives of this study were to determine the prevalence of developmental disorders and disabilities among ELBW children born in Iceland during a 25 year period and to assess which clinical factors predict disability among these children. MATERIAL AND METHODS: A retrospective study of all ELBW children born in Iceland 1988-2012 and discharged alive. The study group was found in the Children´s Hospital of Iceland NICU registry. Information was gathered from the NICU registry, the children´s and their mothers´ medical records and the State Diagnostic and Counselling Centre database. RESULTS: Of 189 children 45 (24%) had developmental disorders, 13 (7%) had mild disorders and 32 (17%) had major disorders (disability) at 3-6 years. Risk factors for disability were multiple birth (RR 2.21; 95% CI: 1.19-4.09), Apgar < 5 after one minute (RR 2.40; 95% CI: 1.14-5.07), the initiation of enteral feeding more than four days after birth (RR 2.14; 95% CI: 1.11-4.11), full enteral feeding achieved after more then 21 days (RR 2.15; 95% CI: 1.11-4.15), neonatal pneumonia (RR 3.61; 95% CI: 1.98-6.57) and PVL (RR 4.84; 95% CI: 2.81-8.34). CONCLUSION: The majority of ELBW children do not have major developmental disorders. The rate of disability in this study is similar to other studies. The study probably underestimates the rate of mild developmental disorders in the Icelandic population. Risk factors for disability in this study are comparable to previous studies.

Decreased postural control in adolescents born with extremely low birth weight.

The survival rates of infants born preterm with extremely low birth weight (ELBW ≤ 1000 g) have gradually improved over the last decades. However, these infants risk to sustain long-term disorders related to poor neurodevelopment. The objective was to determine whether adolescents born with ELBW have decreased postural control and stability adaptation. Twenty-nine ELBW subjects performed posturography with eyes open and closed under unperturbed and perturbed standing by repeated calf vibration. Their results were compared with twenty-one age- and gender-matched controls born after full-term pregnancy. The ELBW group had significantly decreased stability compared with controls in anteroposterior direction, both during the easier quiet stance posturography (p = 0.007) and during balance perturbations (p = 0.007). The ELBW group had similar stability decrease in lateral direction during balance perturbations (p = 0.013). Statistically, the stability decreases were similar with eyes closed and open, but proportionally larger with eyes open in both directions. Both groups manifested significant adaptation (p ≤ 0.023) to the balance perturbations in anteroposterior direction, though this adaptation process could not compensate for the general stability deficits caused by ELBW on postural control. Hence, adolescent survivors of ELBW commonly suffer long-term deficits in postural control, manifested as use of substantially more recorded energy on performing stability regulating high-frequency movements and declined stability with closed and open eyes both in anteroposterior and lateral direction. The determined relationship between premature birth and long-term functional deficits advocates that interventions should be developed to provide preventive care in neonatal care units and later on in life.

Behavior and well-being of extremely low birth weight teenagers in Iceland.

BACKGROUND: Preterm children are at risk for behavioral and emotional problems. AIMS: To evaluate behavior and emotional well-being of extremely low birth weight (ELBW) teenagers born in Iceland in 1991-1995. METHODS: Participants, 30 of 35 ELBW survivors (25 girls, 5 boys, mean age 16.8 years), were interviewed, underwent medical examination and answered the Youth Self-Report for ages 11-18 (YSR) of the Achenbach System of Empirically Based Assessment (ASEBA). The ELBW parents answered the ASEBA Child Behavior Checklist for ages 6-18 and the Autism Spectrum Screening Questionnaire (ASSQ). A comparison group of 30 teenagers (23 girls, 7 boys, mean age 16.5 years) answered the YSR questionnaire and their parents answered the CBCL and ASSQ questionnaires. RESULTS: ELBW teenagers and parents report more behavior problems than the full term comparison teenagers and parents. They score significantly higher on the YSR and CBCL syndrome scales except for YSR and CBCL rule-breaking behavior and CBCL thought problems. The ELBW teenagers self-report on total competence, activities, social participation and academic performance was not significantly lower than the comparison teenagers. Parents of ELBW teenagers rated total competence, social participation and school performance of their children significantly lower than parents of comparison teenagers. The YSR Positive Qualities Scale was not significantly different between the two teenage groups. Two ELBW teenagers scored above cut-off points on the ASSQ questionnaire and none of the comparison teenagers. Bullying was reported by 20% of ELBW parents compared to none of the comparison group. CONCLUSION: ELBW teenagers experience emotional, behavior and social challenges. The teenagers value their positive qualities, activities and academic performance similar to peers.

Prevalence of autism spectrum disorders in an Icelandic birth cohort.

OBJECTIVES: A steady increase in the prevalence of autism spectrum disorders (ASD) has been reported in studies based on different methods, requiring adjustment for participation and missing data. Recent studies with high ASD prevalence rates rarely report on co-occurring medical conditions. The aim of the study was to describe the prevalence of clinically confirmed cases of ASD in Iceland and concomitant medical conditions. DESIGN: The cohort is based on a nationwide database on ASD among children born during 1994-1998. PARTICIPANTS: A total of 267 children were diagnosed with ASD, 197 boys and 70 girls. Only clinically confirmed cases were included. All received physical and neurological examination, standardised diagnostic workup for ASD, as well as cognitive testing. ASD diagnosis was established by interdisciplinary teams. Information on medical conditions and chromosomal testing was obtained by record linkage with hospital registers. SETTING: Two tertiary institutions in Iceland. The population registry recorded 22 229 children in the birth cohort. RESULTS: Prevalence of all ASD was 120.1/10 000 (95% CI 106.6 to 135.3), for boys 172.4/10 000 (95% CI 150.1 to 198.0) and for girls 64.8/10 000 (95% CI 51.3 to 81.8). Prevalence of all medical conditions was 17.2% (95% CI 13.2 to 22.2), including epilepsy of 7.1% (95% CI 4.6 to 10.8). The proportion of ASD cases with cognitive impairment (intellectual quotient <70) was 45.3%, but only 34.1% were diagnosed with intellectual disability (ID). Children diagnosed earlier or later did not differ on mean total score on a standardised interview for autism. CONCLUSIONS: The number of clinically verified cases is larger than in previous studies, yielding a prevalence of ASD on a similar level as found in recent non-clinical studies. The prevalence of co-occurring medical conditions was high, considering the low proportion of ASD cases that also had ID. Earlier detection is clearly desirable in order to provide counselling and treatment.

Quality of life of adolescents born with extremely low birth weight.

AIM: To explore extremely low birth weight [ELBW] adolescents' self-reported quality of life [QoL] and compare it with control group of same age full-term peers. METHODS: This project is nested within a national follow-up study on the long-term outcome of ELBW infants born in Iceland in 1991-1995. Twenty-nine ELBW adolescents and 30 controls evaluated their QoL using KIDSCREEN-52. To evaluate group differences, Chi-square tests and Mann-Whitney U-tests were conducted. Multivariate logistic regression was used to determine the influence of birth weight on QoL in ten dimensions. RESULTS: No differences were observed between the groups on six of ten KIDSCREEN dimensions. ELBW adolescents reported significantly lower QoL on four dimensions: Physical well-being (OR 3.41; CI, 1.14-10.25), Psychological well-being (OR 7.65; CI, 2.04-28.78), Moods and emotion (OR 5.20; CI, 1.53-17.82), and Self-perception (OR 3.20; CI, 1.05-9.74). CONCLUSION: ELBW adolescents report similar social well-being and participation compared with same age full-term peers. Conversely, they report lower physical and emotional quality of life.

Survival and neurodevelopmental outcome of ELBW children at 5 years of age: comparison of two cohorts born 10 years apart.

AIM: To examine survival and outcome of extremely low-birth-weight (ELBW) children (birth weight < 1000 g) in two 5-year periods, 10 years apart. METHODS: In a retrospective population-based study, information on all ELBW children born in Iceland in 1991-1995 and in 2001-2005 was obtained from the National Birth Registry, hospital charts and medical records. The two periods were compared. RESULTS: In 1991-1995, 102 of 22.261 newborn children (0.5%) were extremely low birth weight compared with 70 of 20.923 newborns (0.33%) in 2001-2005 (p = 0.04). At 5 years of age, 52% (35/67) of live-born children born in 1991-1995 were alive compared with 63% (31/49) of children born in 2001 - 2005 (p = 0.2). Six ELBW children (17%) born 1991-1995 were diagnosed with disabilities at 5 years of age, three with major neurodevelopmental disabilities compared with six (19%) born 2001-2005, thereof one with severe neurodevelopmental disabilities (p = 0.57). CONCLUSION: The incidence of childhood disabilities in ELBW children in Iceland remains stable despite an increase in survival rate. The severity of neurodevelopmental disabilities has decreased.

Disabilities and health of extremely low-birthweight teenagers: a population-based study.

AIM: Evaluation of long-term outcome of extremely low-birthweight (ELBW) teenagers born in Iceland in 1991-1995. METHOD: Participants, 30 of 35 ELBW survivors and 30 full term control teenagers (14-19 years), were assessed for disabilities, health problems and learning difficulties. Results of national standardized tests in mathematics and Icelandic language were compared with results of neurodevelopmental assessment at 5 years of age. RESULTS: A quarter of the ELBW teenagers had disabilities. All were initially diagnosed with neurodevelopmental disorders early in life and neurosensory and/or intellectual disabilities were confirmed later in childhood. Chronic lung disorders, neurological problems and psychiatric disorders were most common health problems. Growth parameters were within normal limits for most of the ELBW teenagers. Learning difficulties affected 57% of the ELBW teenagers, 20% attended special education classes and 37% required special teaching. Results of national standardized tests were significantly lower for ELBW survivors and were significantly related to the results of neurodevelopmental assessment at 5 years of age. INTERPRETATION: A quarter of ELBW teenagers have disabilities albeit most of them mild. Chronic health problems and learning difficulties affect many ELBW survivors. Changes with time emphasize need of long-term follow-up.

[Extremely low birthweight infants in Iceland 1991-95. Risk factors for perinatal and neonatal death]. / Litlir fyrirburar á Islandi 1991-95. Ahaettuthaettir fyrir burdarmálsog nýburadauda.

OBJECTIVE: Survival of extremely low birthweight infants with birthweight <1000 g (ELBW) has increased in recent years, parallel to decline in perinatal mortality rate. This study was part of a geographically defined national study on survival, health, development and longterm outcome of ELBW infants in Iceland 1991-95 focusing on infant and maternal health risk factors affecting infant survival. MATERIAL AND METHODS: Information was collected from the National Birth Registry on births and survival of ELBW infants weighing 500-999 g born in Iceland 1991-95. Information was obtained from hospital records of all liveborn ELBW infants and their mothers regarding maternal health, pregnancy, birth, diseases in the newborn period, lifespan and causes of death. Information on causes of death was collected from autopsy records of deceased infants. Comparison was made between the deceased ELBW infants and the control infants that survived. RESULTS: The study group consisted of 28 infants that died and a control group of 32 infants that survived. Most of the infants died in the first 24 hours after birth (47%). There was no significant difference in birthweight in the two groups nor regarding age of mothers, smoking, alcohol use and medication. Nearly all mothers of deceased infants (97%) had health problems during the pregnancy, compared to 66% mothers in the control group. Mothers of deceased infants had significantly more common infections (p=0.004). Significant difference was found regarding respiratory distress syndrome and intraventricular hemorrhage in infants that died (p=0.001). CONCLUSIONS: The results of the study support that short pregnancy, infection during pregnancy and intraventricular hemorrhage were the main risk factors causing death of ELBW infants in the perinatal and neonatal period in 1991-95.

Performance on extremely low birthweight children at 5 years of age on the Miller Assessment for Preschoolers.

The purpose of this geographically defined national study was to evaluate the performance of extremely low birthweight children (ELBW < 1000 g) born in Iceland in 1991-1995 and compare to a cohort of matched control children born full term. The Miller Assessment for Preschoolers (MAP) was used to provide an overall profile of 32 ELBW children and 55 control children at 5 years of age. The results indicated that score patterns on the MAP between ELBW and normal birthweigt children differ. The differences were significant on the Total Score, and the Foundations, Coordination, and Complex-Tasks Indices. This study found that the ELBW group had specific problems in basic motor tasks, coordination, and fine motor skills. The results validate the need for early assessment, regular follow up, and consultation to promote optimal task performance and social participation of children born prematurely.