Online psychosocial group intervention for adolescents with a chronic illness: A randomized controlled trial.

OBJECTIVE: The present study aimed to evaluate the efficacy of Op Koers Online, a protocolled online psychosocial group intervention for adolescents with a chronic illness (CI). METHODS: Adolescents (12-18 years) with different types of CI (N = 59; Mean age = 15.1 years, SD = 1.7; 54% female) participated in a parallel multicenter randomized controlled trial comparing Op Koers Online (N = 35) with a waitlist control group (N = 24). Assessments (online questionnaires) took place at baseline (T0), 6-months (T1) and 12-months follow-up (T2). Primary outcomes were internalizing and externalizing behavioral problems and disease-related coping skills. Health-Related Quality of Life was secondary. Efficacy was tested with linear mixed models. RESULTS: Compared to the control group, the intervention had a significant positive effect (p < .05) on disease-related coping skills T1 vs T0 (use of relaxation, ß = 0.68; social competence, ß = 0.57) and T2 vs T0 (information seeking, ß = 0.61), and on HRQoL (social-, school-, psychosocial functioning and total HRQoL) T1 vs T0 (ß = 0.52 to ß = 0.60). No intervention effects on internalizing and externalizing behavioral problems were found. CONCLUSION: The results of this randomized controlled trial indicate a positive effect of Op Koers Online. The intervention had beneficial effects on disease-related coping skills and HRQoL. PRACTICE IMPLICATIONS: The next step is to implement Op Koers Online for adolescents in clinical practice.

Growing up with Down syndrome: Development from 6 months to 10.7 years.

BACKGROUND: We analysed developmental outcomes from a clinical trial early in life and its follow-up at 10.7 years in 123 children with Down syndrome. AIMS: To determine 1) strengths and weaknesses in adaptive functioning and motor skills at 10.7 years, and 2) prognostic value of early-life characteristics (early developmental outcomes, parental and child characteristics, and comorbidity) for later intelligence, adaptive functioning and motor skills. METHODS AND PROCEDURES: We used standardized assessments of mental and motor development at ages 6, 12 and 24 months, and of intelligence, adaptive functioning and motor skills at 10.7 years. We compared strengths and weaknesses in adaptive functioning and motor skills by repeated-measures ANOVAs in the total group and in children scoring above-average versus below-average. The prognostic value of demographics, comorbidity and developmental outcomes was analysed by two-step regression. OUTCOMES AND RESULTS: Socialisation was a stronger adaptive skill than Communication followed by Daily Living. Aiming and catching was a stronger motor skill than Manual dexterity, followed by Balance. Above-average and below-average scoring children showed different profiles of strengths and weaknesses. Gender, (the absence or presence of) infantile spasms and particularly 24-month mental functioning predicted later intelligence and adaptive functioning. Motor skills, however, appeared to be less well predicted by early life characteristics. CONCLUSIONS AND IMPLICATIONS: These findings provide a reference for expected developmental levels and strengths and weaknesses in Down syndrome.

Parental perceptions of child vulnerability in a community-based sample: Association with chronic illness and health-related quality of life.

The study aimed to assess the prevalence of parental perceptions of a child's vulnerability (PPCV) in a Dutch community-based sample and its relationship with children's health and health-related quality of life (HRQoL). Parents completed the Child Vulnerability Scale and a socio-demographic questionnaire. The Pediatric Quality of Life Inventory 4.0 was administered to measure HRQoL. The prevalence of PPCV was assessed in relation to socio-demographic and health-related characteristics. In a three-step multiple hierarchical regression model, the mediational role of PPCV in the association between chronic illness and HRQoL was investigated. Participants were 520 Dutch children aged 5-18 years from nine Dutch schools. In all, 69 (13.3%) had a chronic illness; 1.9% was perceived vulnerable, 3.0% in groups 5-7 and 1.7% in groups 8-12 and 13-18. Younger age of the child, presence of a chronic illness and low HRQoL were associated with PPCV. PPCV partially mediated the negative association between chronic illness and HRQoL. In conclusion, PPCV is associated with adjustment to chronic illness. More research is needed regarding the mechanisms through which PPCV affects HRQoL and to examine whether PPCV can be targeted in parenting interventions.

Effects of early thyroxine treatment on development and growth at age 10.7 years: follow-up of a randomized placebo-controlled trial in children with Down's syndrome.

CONTEXT: In 2-year-old children with Down's syndrome (DS), early T4 treatment was found to result in slightly better motor development and growth. OBJECTIVES: This study sought to determine long-term effects of early T4 treatment on development and growth in children with DS with either an elevated or normal neonatal TSH concentration. DESIGN: Patients received a single follow-up visit 8.7 years after a randomized placebo-controlled trial (RCT) comparing T4 and placebo treatment during the first 2 years of life. SETTING: Dutch Academic Hospital. PARTICIPANTS: All children who completed the RCT (N = 181, of 196 randomly assigned children) were invited for the follow-up study. A total of 123 participants enrolled, at a mean age of 10.7 years. INTERVENTIONS: T4 or placebo treatment from the neonatal period until 2 years. MAIN OUTCOME MEASURES: Primary: mental and motor development. Secondary: communication skills, fine-motor coordination, height, weight, and head circumference (HC). Outcomes were compared between T4- and placebo-treated children, and between treatment groups with either a normal (<5 mIU/L), or elevated (≥ 5 mIU/L) TSH concentration at original trial entry. RESULTS: Mental or motor development, communication skills, or fine-motor coordination did not differ between T4- (N = 64) and placebo-treated children (N = 59). T4-treated children had a larger HC (50.4 vs 49.8 cm, P = .04) and tended to be taller (133.2 vs 131.1 cm, P = .06). These differences were somewhat greater in children with TSH ≥ 5 mIU/L (HC: T4, 50.5 vs placebo, 49.7 cm; P = .01; height: T4, 133.8 vs placebo, 130.8 cm; P = .02), but were not found in children with TSH <5 mIU/L (HC: T4, 50.1 vs placebo, 50.0 cm; P = .75; height: T4, 132.1 vs placebo, 131.6 cm; P = .22). CONCLUSIONS: Early T4 treatment of children with DS does not seem to benefit mental or motor development later in life. However, the positive effect on growth is still measurable, especially in children with an elevated plasma TSH concentration in the neonatal period.

Development and validation of the distress thermometer for parents of a chronically ill child.

OBJECTIVE: To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress. STUDY DESIGN: Parents of a chronically ill child (0-18 years) were recruited via announcements or were actively approached at the outpatient clinics of the Emma Children's Hospital/Academic Medical Center and Vrije Universiteit Medical Center. We modeled the development of the DT-P on the Distress Thermometer used in oncology medical care. The DT-P consists of a thermometer score from 0 (no distress) to 10 (extreme distress) and a problem list (practical, social, emotional, physical, cognitive, and parenting domains). The DT-P was validated with the Hospital Anxiety and Depression Scale (HADS) and the Parenting Stress Index. RESULTS: The mean thermometer score of the 706 participating parents was 3.7 (SD 3.0). The thermometer score and the scores in the practical, emotional, physical, and cognitive problem domains were strongly related to anxiety, depression, and the total score of the HADS (0.55 ≤ r ≤ 0.72). The thermometer score and all problem domain scores were moderately-to-strongly related to the Parenting Stress Index (0.38 ≤ r ≤ 0.63). A cutoff-score of 4 correctly identified 86% of "clinical HADS cases" (sensitivity) and 67% of "nonclinical HADS cases" (specificity). CONCLUSIONS: We developed the DT-P and examined its diagnostic utility in a large sample. The DT-P appeared to be a valid and useful short screening-tool for identifying parental distress.

Perinatal risk factors for neurocognitive impairments in preschool children born very preterm.

AIM: This study aimed to compare a broad array of neurocognitive functions (processing speed, aspects of attention, executive functioning, visual-motor coordination, and both face and emotion recognition) in very preterm and term-born children and to identify perinatal risk factors for neurocognitive dysfunctions. METHOD: Children who were born very preterm (n=102; 46 males, 56 females), defined as a gestational age of less than 30 weeks and/or birthweight under 1000 g, and a comparison group of term-born children (n=95; 40 males, 55 females) were assessed at age 5 with the Wechsler Preschool and Primary Scale of Intelligence, Stop Signal Task, several tasks of the Amsterdam Neuropsychological Tasks, and a Digit Span task. RESULTS: When sociodemographic characteristics were taken into account, very preterm children scored worse than term-born children on all neurocognitive functions, except on tasks measuring inhibition and sustained attention, for which results were inconclusive. Effect sizes for group effects were small to medium (r(2) varying between 0.02 and 0.07). Principal component isolated four factors: visual-motor coordination, face/emotion recognition, reaction time/attention, and accuracy/attention. When sociodemographic and child characteristics at birth were accounted for, bronchopulmonary dysplasia was significantly negatively associated with all four components and also with working memory. INTERPRETATION: Very preterm children are at risk for problems on a broad array of neurocognitive functions. Bronchopulmonary dysplasia is an independent risk factor for impaired neurocognitive functioning.

Difference in mother-child interaction between preterm- and term-born preschoolers with and without disabilities.

AIM: To investigate differences in the quality of mother-child interaction between preterm- and term-born children at age 5, and to study the association of mother-child interaction with sociodemographic characteristics and child disability. METHODS: Preterm children (n = 94), born at <30 weeks' gestation and/or birth weight <1000 g, and term children (n = 84) were assessed at corrected age of 5 using a mother-child interaction observation. Disabilities were assessed using an intelligence test, behaviour questionnaires for parents and teachers, and motor and neurological examinations. RESULTS: Mothers of preterm-born children were less supportive of and more interfering with their children's autonomy than mothers of term-born children. This difference was only partly explained by sociodemographic factors. Dyads showed a lower quality of mother-child interaction if children had a severe disability, especially when mothers had a lower level of education. CONCLUSION: Five years after birth, mother-child interaction of very premature children and their mothers compared unfavourably with term children and their mothers. Mothers with sociodemographic disadvantages, raising a preterm child with severe disabilities, struggle most with giving adequate sensitive support for the autonomy development of their child. Focused specialized support for these at risk groups is warranted.

Prediction of cognitive abilities at the age of 5 years using developmental follow-up assessments at the age of 2 and 3 years in very preterm children.

AIM: This study investigated prediction of separate cognitive abilities at the age of 5 years by cognitive development at the ages of both 2 and 3 years, and the agreement between these measurements, in very preterm children. METHODS: Preterm children (n=102; 44 males; 58 females) with a gestational age less than 30 weeks and/or birthweight less than 1000g were assessed at the ages of 2 and 3 years using the second edition of the Bayley Scales of Infant Development, the Child Behaviour Checklist, and a neurological examination, and at the age of 5 years using the third edition of the Wechsler Preschool and Primary Scale of Intelligence. RESULTS: Cognitive development at ages 2 and 3 years explained 44% and 57% respectively of full-scale intelligence at the age of 5 years. Adding psychomotor, neurological, and behavioural outcomes to the regression model could not or only marginally improve the prediction; adding perinatal and sociodemographic characteristics to the regression model increased the explained variance to 57% and 64% respectively. These percentages were comparable for verbal intelligence. Processing speed quotient and especially performance intelligence were predicted less accurately. INTERPRETATION: Not all aspects of intelligence are predicted sufficiently by the Mental Development Index at ages 2 and 3 years. Follow-up of very preterm children until at least the age of 5 years is needed to distinguish between different aspects of cognitive development.

Outcome at 4.5 years of children born after expectant management of early-onset hypertensive disorders of pregnancy.

OBJECTIVE: The objective of the study was to describe neurodevelopmental outcome at the age of 4.5 years in 216 children, born after expectant management of severe early-onset hypertensive complications of pregnancy. STUDY DESIGN: This was a prospective follow-up study until age 4.5 years from maternal admission onward. Developmental outcome measurements included child intelligence quotient and behavioral, motor, and neurological outcome. Abnormal composite outcome (perinatal mortality or abnormal developmental outcome) was studied in relation to gestational age (GA), birthweight (BW), and perinatal variables. RESULTS: Fetal and neonatal mortality was 9% and 8%, respectively. Of the 178 survivors, 149 (84%) were seen for follow-up. Mean GA was 31.4 weeks and 90% were born growth restricted. Abnormal developmental outcome occurred in 20% and abnormal composite outcome in 37%. CONCLUSION: Perinatal mortality or abnormal child development occurs in one third of pregnancies with early-onset and severe hypertensive complications and is highest in the lowest GA and BW ranges.

High incidence of multi-domain disabilities in very preterm children at five years of age.

OBJECTIVES: To describe the prevalence and co-occurrence of disabilities and their association with parental education in preterm children and term control subjects. STUDY DESIGN: In a prospective study, preterm children (n=104), born at <30 weeks' gestation or birth weight <1000 g, and term children (n=95) were assessed at corrected age 5 with an intelligence quotient (IQ) test, behavior questionnaires for parents and teachers, and motor and neurologic tests. A disability was defined as results in the mild abnormal range of each test or below. Associations of outcomes with parental education were studied. RESULTS: Of the preterm children, 75% had at least one disability and 50% more than one, compared with 27% and 8%, respectively, of term control subjects (P<.01). The preterm-term difference in full scale IQ increased from 5 IQ points if parental education was high to 14 IQ points if it was low, favoring the term children in both groups. A similar pattern was found for behavior, but not for motor and neurologic outcome. CONCLUSIONS: Disabilities occur frequently after very preterm birth and tend to aggregate. Neurologic and motor outcomes are mostly influenced by biologic risk, and social risks contribute to cognitive and behavioral outcome.

Improvement of developmental outcome between 24 and 36 months corrected age in very preterm infants.

AIM: To study early developmental course in preschool-aged very preterm infants and its association with perinatal risk factors and test-taking behaviour. METHODS: Children born <30 weeks gestation and/or <1000g in the Academic Medical Center of Amsterdam were assessed at 24 and 36 months corrected age with the Dutch Bayley Scales of Infant Development-II (BSID-II-NL) and neurological examination. Linear regression analyses for developmental change were performed with perinatal risk factors. RESULTS: One hundred and forty-six children, mean GA 28 weeks and mean birth weight 1043 g, participated. Mental and psychomotor scores improved significantly with 6 and 7 points, respectively, from 24 to 36 months (p < 0.01). Mild to severe problems on at least one domain occurred less often at 36 (32%) compared to 24 months (63%) (p < 0.01), using corrected scores. Mental improvement was associated with being born very small for gestational age or <28 weeks; psychomotor improvement was associated with not being treated with indomethacin. Difficult test behaviour occurred mostly at 24 months and was associated with non-optimal development at 36 months. CONCLUSION: Improved developmental outcome and test behaviour were found at 36 compared to 24 months in a cohort of very preterm children. Long-term outcome studies and retesting of behaviourally difficult children are recommended.

Behavioural problems at the age of eleven years in preterm-born children with or without fetal brain sparing: a prospective cohort study.

BACKGROUND: In severe intrauterine growth restriction (IUGR) due to placental insufficiency a haemodynamic adaptation occurs, resulting in preferential blood flow to the fetal brain (brain sparing). With Doppler ultrasound an increased ratio between the umbilical and the cerebral artery pulsatility index (U/C ratio) can be demonstrated. IUGR is associated with impaired neurodevelopmental outcome. OBJECTIVE: Evaluation of the effect of fetal brain sparing on behavioural problems at eleven years in premature born children. METHODS: Prospective cohort study in premature children born in 1989, with a gestational age of 26 0/7 to 33 0/7 weeks. An U/C ratio>0.72 was defined as brain sparing. Behavioural problems were assessed with the parent-reported Child Behaviour Check List (CBCL) and the Teacher's Report Form (TRF). T scores >60 for total problem score and subscales of internalizing and externalizing behaviour, were considered abnormal. RESULTS: Ninety-eight of the 116 survivors were assessed, of which 31 with antenatally established fetal brain sparing. According to the CBCL-total problem score 23.3% of the premature born babies in the brain sparing group had behavioural problems compared with 22.8% of those without brain sparing. According to the TRF-total problem score the percentages were 21.4% and 20.0%, respectively. Logistic regression analysis failed to show a significant association of U/C ratio with behavioural problems. In this model oxygen dependency at 28 days, IQ<85 at five years, cranial ultrasound abnormalities, fetal growth ratio<0.80, Apgar scores<7 after 5 min and birth weight

The effect of the Infant Behavioral Assessment and Intervention Program on mother-infant interaction after very preterm birth.

BACKGROUND: Prematurity and perinatal insults lead to increased developmental vulnerability. The home-based Infant Behavioral Assessment and Intervention Program (IBAIP) was designed to improve development of preterm infants. In a multicenter randomized controlled trial the effect of IBAIP on mother-infant interaction was studied as a secondary outcome. METHOD: Mother-infant interaction was assessed during the Still-face procedure at 6 months corrected age. One hundred and twelve mother-infant dyads (57 intervention, 55 control) were studied. RESULTS: Findings partially supported our hypothesis that the intervention would increase maternal sensitivity in interaction with their preterm infants. No effects were found on infant self-regulatory behavior or positive interaction behavior. CONCLUSION: The family-centered and strength-based approach of IBAIP appears to be a promising intervention method to promote sensitive mother-infant interaction at home after discharge from hospital. However, no positive effects were found on infant interaction behavior.

Ten-year follow-up of children born at <30 weeks' gestational age supplemented with thyroxine in the neonatal period in a randomized, controlled trial.

BACKGROUND: Thyroid hormones are essential for brain development. We conducted a randomized, controlled trial with thyroxine (T4) supplementation in infants <30 weeks' gestation and with the last neurodevelopmental follow-up moment at the age of 5.5 years. T4 supplementation was associated with improved outcome of infants <28 weeks' gestation and worse outcome of infants of 29 weeks' gestation. We studied gestational age-dependent effects of T4 supplementation at the mean age of 10.5 years in children participating in our randomized, controlled trial. METHODS: Questionnaires regarding school outcome, behavior, quality of life, motor problems, and parental stress were sent to the parents and children and their teachers at the same time point for all surviving children (9-12 years of age). RESULTS: Seventy-two percent of the families responded to our questionnaires. Nonrespondents had more sociodemographic risk factors and worse development until 5.5 years. At the mean age of 10.5 years, T4 supplementation was associated with better school outcome in those who were <27 weeks' gestation and better motor outcome in those who were <28 weeks' gestation, whereas the reverse was true for those who were born at 29 weeks' gestation. No other gestational age-dependent outcomes were found. CONCLUSIONS: Gestation-dependent effects of T4 supplementation remain stable over time. These effects do not prove beneficial effects of T4 in infants <28 weeks but should be the background for a new randomized, controlled trial with thyroid hormone in this age group.

Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients.

OBJECTIVE: To assess associations of coping and family functioning with psychosocial adjustment in siblings of pediatric cancer patients at 1, 6, 12, and 24 months after diagnosis. METHODS: Eighty-three siblings (ages 7-19 years) participated. Effects on anxiety, quality of life, behavioral-emotional problems, and emotional reactions to the illness were investigated. Data-analysis was performed with multilevel mixed modeling. RESULTS: Psychosocial functioning was impaired at 1 month but ameliorated over time. Adjustment problems were associated with high family adaptation and cohesion, older age, and female gender. Lower anxiety, insecurity, loneliness, and illness involvement were related to siblings' ability to remain optimistic. Insecurity and illness involvement were positively related to reliance on the medical specialist and a tendency to seek information about the illness. CONCLUSIONS: Siblings of pediatric cancer patients are most affected by the illness in the first months. Children at risk may be identified according to sibling age and gender and according to long-term family adaptation processes and sibling coping abilities.