Psychosocial Impact of a True-Positive, False-Positive, or Inconclusive Newborn Bloodspot Screening Result: A Questionnaire Study among Parents.

Expansion of newborn bloodspot screening (NBS) can increase health gain for more children but also increases the number of false-positive and uncertain results. The impact of abnormal and inconclusive NBS results on parental well-being and healthcare utilization was investigated. A questionnaire was sent to Dutch parents receiving an abnormal or inconclusive NBS result five weeks (T1) and four months (T2) post-NBS and compared to parents with a normal result (controls). In total, 35 true-positive (TP), 20 false-positive (FP), and 57 inconclusive (IC) participants and 268 controls filled out T1; 19 TP, 14 FP, 27 IC, and 116 controls filled out T2. Participants showed positive attitudes towards NBS. FP participants more often considered NBS less reliable. TP and FP participants experienced more negative emotions regarding the test result compared to controls at both T1 and T2, and IC only at T1. Parent-reported child vulnerability and perceptions of the newborn's health status and of parenthood showed no differences. TP and FP participants reported more healthcare utilization at T1, and mainly TP at T2. TP and IC participants showed more emergency department visits at T1. The findings can be used to improve NBS programs and optimize support for families with various NBS results.

Parents' views on accepting, declining, and expanding newborn bloodspot screening.

INTRODUCTION: The goal of newborn bloodspot screening (NBS) is the early detection of treatable disorders in newborns to offer early intervention. Worldwide, the number of conditions screened for is expanding, which might affect public acceptance. In the Netherlands, participation is high (>99%), but little is known about how parents perceive NBS. This study assessed parents' views on accepting, declining and expanding NBS. METHODS: A total of 804 of 6051 (13%) invited parents who participated in NBS in the Netherlands during the last two weeks of December 2019, and 48 of 1162 (4%) invited parents who declined participation in NBS in 2019 and 2020, completed a questionnaire. RESULTS: The most important reason for parents to participate in NBS was to prevent health complaints, whereas the most important reason to decline NBS was parents' viewpoint on life and the belief that the heel prick would be painful for the child. Compared to NBS participants, respondents who declined NBS were more actively religious, considered alternative medicine or lifestyle more important, were less inclined to vaccinate their child for infectious diseases, and reported more doubt about NBS participation (all differences p < .001). Informed choice was lower among respondents who declined NBS (44%) compared to participants in NBS (83%, p < .001), mostly due to insufficient knowledge. Of the NBS participants, 95% were positive about NBS expansion. Most NBS participants agreed to include conditions that could unintentionally reveal a diagnosis in the mother instead of the child (86%) or a condition that may not cause symptoms until later in the child's life (84%). CONCLUSION: Most participants made an informed decision to participate in NBS and are positive about screening for more conditions. Insights into parents' views on (non-)participation and expansion of NBS can help to ensure that NBS suits the population needs while safeguarding ethical principles for screening.

Expanding Neonatal Bloodspot Screening: A Multi-Stakeholder Perspective.

Neonatal bloodspot screening (NBS) aims to detect treatable disorders in newborns. The number of conditions included in the screening is expanding through technological and therapeutic developments, which can result in health gain for more newborns. NBS expansion, however, also poses healthcare, ethical and societal challenges. This qualitative study explores a multi-stakeholders' perspective on current and future expansions of NBS. Semi-structured interviews were conducted with 22 Dutch professionals, including healthcare professionals, test developers and policy makers, and 17 parents of children with normal and abnormal NBS results. Addressed themes were (1) benefits and challenges of current expansion, (2) expectations regarding future developments, and (3) NBS acceptance and consent procedures. Overall, participants had a positive attitude toward NBS expansion, as long as it is aimed at detecting treatable disorders and achieving health gain. Concerns were raised regarding an increase in results of uncertain significance, diagnosing asymptomatic mothers, screening of subgroups ("males only"), finding untreatable disorders, along with increasingly complex consent procedures. Regarding the scope of future NBS expansions, two types of stakeholder perspectives emerged. Stakeholders with a "targeted-scope" perspective saw health gain for the neonate as the exclusive NBS aim. They thought pre-test information could be limited, and parents should be protected against too much options or information. Stakeholders with a "broad-scope" perspective thought the NBS aim should be formulated broader, for example, also taking (reproductive) life planning into account. They put more emphasis on individual preferences and parental autonomy. Policy-makers should engage with both perspectives when making further decisions about NBS.

Reproductive risks in 35-year-old adults born very preterm and/or with very low birth weight: an observational study.

Evidence suggests that increased survival over the last decades of very preterm (VPT; gestational age < 32 weeks)- and very low birth weight (VLBW; birth weight < 1500 g)-born infants is not matched by improved outcomes. The objective of our study was to evaluate the reproductive rate, fertility, and pregnancy complications in 35-year-old VPT/VLBW subjects. All Dutch VPT/VLBW infants born alive in 1983 and surviving until age 35 (n = 955) were eligible for a POPS-35 study. A total of 370 (39%) subjects completed a survey on reproductive rate, fertility problems, pregnancy complications, and perinatal outcomes of their offspring. We tested differences in these parameters between the VPT/VLBW subjects and their peers from Dutch national registries. POPS-35 participants had less children than their peers in the CBS registry. They reported more problems in conception and pregnancy complications, including a three times increased risk of hypertension during pregnancy.Conclusion: Reproduction is more problematic in 35-year olds born VPT/VLBW than in the general population, possibly mediated by an increased risk for hypertension, but their offspring have no elevated risk for preterm birth. What is known: At age 28, the Dutch national POPS cohort, born very preterm or with a very low birth in 1983, had lower reproductive rates than the general Dutch population (female 23% versus 32% and male 7% versus 22%). What is new: At age 35, the Dutch POPS cohort still had fewer children than the general Dutch population (female 56% versus 74% and male 40% versus 56%). Females in the POPS cohort had a higher risk of fertility problems and pregnancy complications than their peers in the Dutch national registries, but their offspring had no elevated risk for preterm birth.

Self-reported adverse childhood experiences and quality of life among children in the two last grades of Dutch elementary education.

BACKGROUND: Adverse Childhood Experiences (ACEs) may have a life-long impact on mental health and are related to physical disease, such as diabetes and cardiovascular diseases in adulthood. Research on ACEs suffers from recall bias when performed with adults. OBJECTIVE: To estimate the prevalence of ACEs and the interrelationships between ACEs as reported by children, and to determine the impact on their self-reported quality of life (QoL). Children's opinions on the ACE-Questionnaire were also obtained. METHOD: A cross-sectional study was conducted with a child version of the ACE-Questionnaire. This questionnaire assesses parental separation or divorce, physical and emotional child abuse and neglect, sexual violence, domestic violence, household substance abuse, psychological issues or suicide, and incarceration of a household member. QoL was measured with the Kidscreen-10. PARTICIPANTS AND SETTING: The questionnaire was completed by 644 children at a mean age of 11 years (range 9-13 years), in the two last grades of regular elementary schools, recruited throughout the Netherlands. RESULTS: Data were weighted by ethnicity to obtain a representative sample of children in Dutch elementary education. Of all children, 45.3% had one or more out of ten ACEs. Child maltreatment was experienced by 26.4%. ACEs often co-occurred. A higher number of ACEs correlated with a lower mean level of QoL (p <  0.001). Mean QoL was 8.5 points lower (Cohen's d = 0.8) in children who experienced child maltreatment. Children's opinions on the questionnaire were positive in 82.4%. CONCLUSION: Prevention of ACEs, professional training and trauma-focus in schools are urgently needed.

Long-Term Neurodevelopmental and Functional Outcomes of Infants Born Very Preterm and/or with a Very Low Birth Weight.

BACKGROUND: Birth weight (BW) is often used as a proxy for gestational age (GA) in studies on preterm birth. Recent findings indicate that, in addition to perinatal outcomes, subjects born very preterm (VP; GA < 32 weeks) differ from those with a very low birth weight (VLBW; BW < 1,500 g) in postnatal growth up to their final height. OBJECTIVE: To study whether neurodevelopmental and functional outcomes at the age of 19 years differ in VP and/or VLBW subjects. METHODS: 705 19-year-old subjects from the Project on Preterm and Small-for-Gestational-Age Infants (POPS) cohort were classified as (1) VP+/VLBW+ (n = 354), (2) VP+/VLBW- (n = 144), or (3) VP-/VLBW+ (n = 207), and compared with regard to IQ as assessed with the Multicultural Capacity Test-intermediate level; neuromotor function using Touwen's examination of mild neurologic dysfunction; hearing loss; self- and parent-reported behavioral and emotional functioning; educational achievement and occupation; and self-assessed health using the Health Utilities Index and the London Handicap Scale. RESULTS: VP+/VLBW- infants, on average, had 3.8-point higher IQ scores (95% confidence interval [CI] 0.5-7.1), a trend towards higher educational achievement, 3.3-dB better hearing (95% CI 1.2-5.4), and less anxious behavior, attention problems, and internalizing behavior than to VP+/VLBW+ subjects. VP-/VLBW+ infants reported 1.8 increased odds (95% CI 1.2-2.6) of poor health compared to VP+/VLBW+ subjects. CONCLUSIONS: At the age of 19 years, subjects born VP+/VLBW+, VP+/VLBW-, and VP-/VLBW+ have different neurodevelopmental and functional outcomes, although effect sizes are small. Hence, the terms VP and VLBW are not interchangeable. We recommend, at least for industrialized countries, to base inclusion in future studies on preterm populations on GA instead of on BW.

Psychosocial developmental trajectory of a cohort of young adults born very preterm and/or with a very low birth weight in the Netherlands.

BACKGROUND: The achievement of age-specific developmental milestones in youth is of great importance to the adjustment in adult life. Young adults who were born preterm, might go through a different developmental trajectory and transition into adulthood than their peers. This study aimed to compare the psychosocial developmental trajectory of young adults who were born preterm with peers from the general population. Young adults from the POPS (Project On Preterm and Small for gestational age infants) cohort study, born in 1983 in the Netherlands, completed online the Course of Life Questionnaire (CoLQ - achievement of psychosocial developmental milestones) at 28 years of age. Analysis of variance by group, age and gender was performed to test differences on the CoLQ scale scores between the POPS-group and 211 peers (25-30 years) from the general population (Ref-group). Differences on item level, representing the achievement of individual milestones, were analyzed with logistic regression analyses by group, age and gender. RESULTS: The POPS-group (n = 300, 32,3% biased response) scored significantly lower than the Ref-group on the scales Psychosexual Development (effect size - 0.26, p < 0.01), Antisocial Behavior (ES - 0.44, p < 0.001) and Substance Use & Gambling (ES - 0.35, p < .001). A further exploration on item-level revealed, among others, that the POPS-group had their first boyfriend/girlfriend at later age, were more often single, misbehaved less at school and smoked, drank and gambled less than the Ref-group. On the scales Autonomy Development and Social Development no differences were found between the POPS-group and the Ref-group. CONCLUSIONS: A relatively less vulnerable respondent group of young adults born preterm showed some psychosocial developmental trajectory delays and might benefit from support at teenage age. Because of the non-response bias, we hypothesize that the total group of young adults born preterm will show more severe psychosocial developmental problems.

Early-life growth of preterm infants and its impact on neurodevelopment.

BACKGROUND: Increasing numbers of preterm-born children survive nowadays, and improving long-term health and neurodevelopment is becoming more important. Early-life growth has been linked to neurodevelopmental outcomes. We aimed to study whether this association has changed with time. METHODS: We studied two cohorts of preterm-born children (gestational age ≤32 weeks and/or birth weight ≤1500 g) from 1983 (n = 708) and 2003-2006 (n = 138), respectively. We distinguished four early-life growth patterns at 3 months corrected age: appropriate for gestational age (AGA) with or without growth restriction (AGA GR+/AGA GR-), and small for gestational age (SGA) with or without catch-up growth (SGA CUG+/SGA CUG-). Intelligence quotient (IQ), neuromotor function, and behavior were assessed at ages 19 and 8 years, respectively, for the cohorts. RESULTS: In the 2003-2006 cohort, less children had early-life GR. In both cohorts, SGA CUG- subjects had unfavorable growth trajectories and neurodevelopmental outcomes (IQ ß -6.5, 95% confidence interval (CI) -9.8; -3.2, P < 0.001; neuromotor score ß -1.9%, 95% CI -3.2; -0.6, P = 0.005), while SGA CUG+ subjects were comparable to adequately grown subjects. CONCLUSION: Although the incidence of adverse growth patterns decreased between the cohorts, possibly indicating improvements in care over time, the impact of these growth patterns on neurodevelopmental outcomes was not significantly different. Achieving adequate early-life growth may be crucial for improving neurodevelopmental outcomes, especially for preterms born SGA.

Pain threshold, tolerance and intensity in adolescents born very preterm or with low birth weight.

BACKGROUND: Data on long-term consequences of neonatal pain is limited. AIM: To assess whether perinatal factors, later pain experience and pain coping strategies are associated with altered pain threshold, pain tolerance and pain intensity in adolescents born preterm. STUDY DESIGN: Observational, longitudinal study (Project on Preterm and SGA-infants, POPS-19). SUBJECTS: We analyzed data of 412 adolescents at the age of 19years, who were born at a gestational age<32weeks or with a birth weight<1500g. OUTCOME MEASURES: Participants performed a standardized cold pressor test to assess pain threshold, tolerance and intensity. Furthermore, they completed a pain coping questionnaire (PCQ). RESULTS: In univariate analysis, female gender and necrotizing enterocolitis (NEC) were associated with lower pain tolerance, indicated by reaching the ceiling time of 180s in ice water (females 19% vs males 29%, NEC 7% vs no NEC 25%). Female gender was associated with higher pain intensity (mean difference 0.58; 95%CI 0.21; 0.95) and lower pain threshold (log rank test p 0.007). In a multivariate Cox regression analyses, emotion focused avoidance pain coping style was significantly associated with lower pain threshold (hazard ratio HR 1.38; 95%CI 1.02; 1.87) and pain tolerance (HR 1.72; 95%CI 1.21; 2.42). NEC was significantly associated with lower pain threshold (HR 1.47; 95%CI 1.01; 2.14) and pain tolerance (HR 1.63; 95%CI 1.09; 2.41). CONCLUSION: In adolescence, maladaptive pain coping strategy was associated with lower pain threshold, pain tolerance and higher pain intensity. NEC was associated with altered pain response in adolescents born preterm.

Growth pattern and final height of very preterm vs. very low birth weight infants.

BackgroundBoth very preterm (VP; i.e., gestational age <32 weeks) and very low birth weight (VLBW; i.e., birth weight <1,500 g) are used as inclusion criteria by studies on preterm birth. We aimed to quantify the impact of these entities on postnatal growth until final height.MethodsSubjects born VP and/or with VLBW from the Project On Preterm and Small-for-gestational-age infants cohort were classified as follows: (1) VP+/VLBW+ (n=495), (2) VP+/VLBW- (n=207), or (3) VP-/VLBW+ (n=296) infants. Anthropometric data were collected at birth, 3, 6, 12, and 24 months' corrected age, and at 5 and 19 years. At 19 years, 590/998 (59%) of the subjects enrolled in 1983 were followed up.ResultsBirth size was smallest in the VP-/VLBW+ group compared with the VP+/VLBW+ and VP+/VLBW- groups. During childhood, length, weight, and head circumference SD scores increased in the VP-/VLBW+ group, whereas SD scores in the VP+/VLBW+ and VP+/VLBW- groups either remained stable or decreased. Despite catch-up growth, VP-/VLBW+ infants remained the shortest and lightest at age 19.ConclusionClassification on the basis of VP and VLBW impacts growth, causing different growth patterns for infants born VP+/VLBW+, VP+/VLBW-, or VP-/VLBW+. For future studies, we recommend, at least for industrialized countries, including preterm infants based on gestational age.

Pain coping strategies: Neonatal intensive care unit survivors in adolescence.

BACKGROUND: Data on long-term consequences of preterm birth on pain coping later in life are limited. AIM: To assess whether gestational age, birth weight and neonatal disease severity have effect on pain coping style in adolescents born preterm or with low birth weight. STUDY DESIGN: Observational, longitudinal study (Project On Preterm and SGA-infants, POPS-19). SUBJECTS: We analyzed data of 537 adolescents at the age of 19 years, who were born at a gestational age <32 weeks or with a birth weight <1500g. OUTCOME MEASURES: Participants completed the pain coping questionnaire (PCQ) that assesses pain coping strategies in three higher-order factors: approach ("to deal with pain"), problem-focused avoidance ("to disengage from pain") and emotion-focused avoidance ("expression of pain"). Furthermore, their pain coping effectiveness, pain controllability and emotional reactions to pain were assessed. All participants completed an IQ test. RESULTS: Univariate analysis showed no significant correlation between length of stay, sepsis and necrotizing enterocolitis and any of the higher-order factors. Approach was only correlated with IQ. Problem-focused avoidance was, in the multiple regression analysis (including gestational age, IVH and IQ), only correlated with IQ. For emotion-focused avoidance (including birth weight, SGA, IVH, respiratory support and IQ) three independent predictors remained: IVH was positively correlated, while respiratory support and IQ were negatively correlated with emotion-focused avoidance. CONCLUSIONS: Early neonatal characteristics and neonatal disease severity have limited effect on pain coping style in adolescence. Higher IQ was associated with the use of adaptive coping strategies, while maladaptive strategies were used less.

Transient hypothyroxinemia of prematurity and problem behavior in young adulthood.

INTRODUCTION: Preterm newborns are at risk of developing transient hypothyroxinemia of prematurity (THoP), which has been associated with subsequent neurodevelopmental impairments. Behavioral outcomes at adult age after THoP have never been reported. AIM: To examine whether there is an association between THoP and problem behavior at young adult age. METHODS: This study was part of the follow-up of 19-year-old subjects born very preterm (i.e., <32 weeks) and/or with a very low birth weight (i.e.,<1500g) from the Project On Preterm and Small-for-gestational-age infants (POPS) cohort. We included 468 subjects of the POPS cohort; of whom 123 had THoP. Thyroxine (T4) concentrations were obtained through the national neonatal screening program for congenital hypothyroidism. THoP was defined as a T4 concentration <-3 SD (approximately 60nmol/L). At age 19, behavior was assessed using the Young Adult Self Report and the Young Adult Behavioral Checklist for parents. RESULTS: THoP was associated with a 1.8 (95% confidence interval (CI): 1.01-3.4) -fold increased odds of self-reported Internalizing behavior, as well as with a 1.9 (95% CI: 1.1-3.1) -fold increased odds of parent-reported Total problem behavior. These relations persisted after correction for demographic and perinatal variables. Similar associations were absent for the other self-reported and parent-reported syndrome and problem scales. CONCLUSIONS: THoP was associated with more internalizing and total problem behavior at age 19. While our observations warrant more awareness of problem behavior in preterm infants, at present, it is unclear whether these associations are causal and screening for THoP does not seem necessary.

No Association Between Transient Hypothyroxinemia of Prematurity and Neurodevelopmental Outcome in Young Adulthood.

CONTEXT: Transient hypothyroxinemia of prematurity (THoP) has been associated with neurodevelopmental impairment in infancy and childhood. It is not known whether these relations persist into adulthood. OBJECTIVE: The objective was to examine whether there is an effect of THoP on intelligence quotient (IQ) score and motor functioning at a young adult age. DESIGN: This study was part of the 19-year follow-up of the Project On Preterm and Small-for-gestational-age birth (POPS) cohort, which included infants born very preterm (ie, <32 wk) and/or with a very low birth weight (ie, <1500 g). SETTING: This was a multicenter study. PATIENTS: There were 398 19-year-old participants of the POPS cohort, of whom 120 had THoP. EXPOSURE: T4 concentrations were obtained through the national neonatal screening program for congenital hypothyroidism. THoP was defined as a total T4 concentration < -3 SD of the daily mean (approximately 60 nmol/L). MAIN OUTCOME MEASURES: Main outcome measures were IQ and motor functioning, measured with the digital Multicultural Capacities Test-Intermediate Level and a revised version of Touwen's examination of minor neurological dysfunction, respectively. RESULTS: THoP was not associated with IQ score (mean difference, 0 [95% confidence interval, -3.8 to 3.8] points) or motor function (mean difference, 0.6 [95% confidence interval, -1.3 to 2.5] points) after adjustment for demographic and perinatal characteristics. CONCLUSIONS: No associations between THoP and neurodevelopmental outcome at age 19 years were found.

Antenatal glucocorticoid treatment and polymorphisms of the glucocorticoid and mineralocorticoid receptors are associated with IQ and behavior in young adults born very preterm.

CONTEXT: Preterm survivors exhibit neurodevelopmental impairments. Whether this association is influenced by antenatal glucocorticoid treatment and glucocorticoid sensitivity is unknown. OBJECTIVES: This study aimed to study the effects of antenatal glucocorticoid treatment and glucocorticoid receptor (GR) and mineralocorticoid receptor (MR) polymorphisms on behavior and intelligence quotient (IQ). DESIGN: This study was part of the 19-year follow-up of the Project On Preterm and Small-for-gestational-age birth cohort. SETTING: Multicenter study. PATIENTS: Three hundred forty-four 19-year-olds born very preterm (gestational age < 32 wk), of whom 71 had received betamethasone antenatally. INTERVENTION: Single antenatal treatment course of betamethasone. MAIN OUTCOME MEASURES: Behavior (Young Adult Self Report and Young Adult Behavior Checklist for parents) and IQ (digital Multicultural Capacity Test-intermediate level). Data were analyzed by linear regression and presented as regression coefficient (95% confidence interval [CI]). RESULTS: Sex ratio, GR (R23K; N363S) and MR (-2G/C; I180V) genotypes were equally distributed between treated and nontreated subjects. Independent of treatment, R23K carriers had improved IQ scores (ß 9.3; 95% CI, 3.4 to 15.1) and a tendency toward more favorable total problem behavior scores (ß -8.5; 95% CI, -17.3 to 0.2) ; -2G/C CC carriers had poorer IQ scores (ß -6.2; 95% CI, -10.5 to -1.9); I180V carriers had more favorable internalizing behavior scores (ß -2.0; 95% CI, -3.9 to -0.1). Antenatal glucocorticoid treatment was associated with more unfavorable behavior scores, especially internalizing behavior (ß 2.4; 95% CI, 0.3 to 4.5). Interaction between GR and MR polymorphisms and antenatal glucocorticoid treatment was observed, with poorer IQ scores for exposed N363S carriers; poorer intellectual subdomain scores for exposed I180V-carriers; more favorable total problem behavior scores for exposed R23K carriers. CONCLUSIONS: Genetic variations in glucocorticoid sensitivity and antenatal glucocorticoid treatment are associated with IQ and behavior in young adult preterm survivors.

Impact on parents of HLA-DQ2/DQ8 genotyping in healthy children from coeliac families.

Due to the association of coeliac disease and HLA-specificities DQ2 and DQ8, HLA-typing can be used for risk determination of the disease. This study was designed to evaluate the knowledge of parents from coeliac families regarding HLA-typing and the impact of HLA-typing on the perception of the health of their children. A structured questionnaire was sent to the Dutch, Spanish and German parents participating with their child in the European PreventCD study on disease prevention in high-risk families, addressing parents' understanding of and attitude towards HLA-typing, distress related to HLA-typing and perceived health and health-related quality of life of their children. Sixty-eight percent of parents of 515 children returned the questionnaires, with 85% of children being DQ2/DQ8 positive. The majority of all parents answered the questions on knowledge correctly. Forty-eight percent of parents of DQ2/DQ8-negative children thought their child could develop coeliac disease. More distress was reported by parents of DQ2/DQ8-positive children (P<0.001). All parents showed few regrets and would repeat HLA-typing in future children. Perceived health and health-related quality of life were similar. In conclusion, we can say that misinterpretation of DQ2/DQ8-negative results by parents is frequent. DQ2/DQ8-positive results do not affect perceived health and health-related quality of life of children but may cause temporary negative feelings among parents. Parents of coeliac families seem to support HLA-typing.

Reproductive outcomes of women and men born very preterm and/or with a very low birth weight in 1983: a longitudinal cohort study in the Netherlands.

UNLABELLED: The aims of this study were to analyze reproductive outcomes of women and men born very preterm (gestational age <32 weeks) or with a very low birth weight (<1500 g) in 1983 in the Netherlands and to compare their reproductive outcomes with the total population at a similar age of 28 years. Young adults who were born after a pregnancy complicated by very preterm (VP) delivery or with a very low birth weight (VLBW) in the Netherlands in 1983 (Project on Preterm and Small for Gestational Age Infants (POPS) cohort) were invited to complete an online questionnaire at the age of 28. In total, 293 POPS-28 participants (31.6%) completed the questionnaire including 185 female and 108 male participants. Female and male participants who were born VP or with a VLBW had significant reduced reproductive rates compared to the total Dutch population at 28 years of age (female 23.2 vs 31.9% and male 7.4 vs 22.2%). Pregnancies of the female participants were in 14% complicated by preterm delivery in at least one pregnancy. CONCLUSION: This study indicates that women and men born VP or with a VLBW have reduced reproductive rates at the age of 28 compared to the total Dutch population at a similar age.

The effect of early catch-up growth on health and well-being in young adults.

AIM: To study the effect of catch-up growth in the 1st year on cognition, health-related quality of life (HRQoL), problem behavior and growth in young adults. METHODS: We included individuals without severe complications and born small for gestational age (SGA; n = 228 for weight, n = 203 for length) or with a low head circumference (HC, n = 178) or a low weight adjusted for length (n = 64) in the Collaborative Project on Preterm and SGA Infants. Neonatal growth was standardized (standard deviation scores for gestational age, SDSGA) according to GA-specific reference charts. Catch-up growth was defined as SDSGA at 1 year of age adjusted for SDSGA at birth. Cognition was defined by the Multicultural Capacity Test-Intermediate Level, HRQoL by the London Handicap Scale (LHS) and the Health Utility Index Mark 3 categorized into 4 levels (Multi-Attribute Utility, MAU), and problem behavior by the Young Adult Self-Report. We adjusted for potential confounders. RESULTS: Most adults were born preterm (93.7%). A higher catch-up growth in the 1st year was associated with better cognition (B = 2.57, 95% CI 0.08-5.05 for weight), less disabilities according to the LHS (B = 2.06, 95% CI 0.35-3.78 for HC) and the MAU (OR = 0.67, 95% CI 0.48-0.95 for HC) and higher final height (B = 0.33, 95% CI 0.18-0.47 for weight; B = 0.41, 95% 0.28-0.55 for length, and B = 0.18, 95% CI 0.04-0.33 for HC) in young adulthood. CONCLUSION: There are long-term benefits of catch-up growth.

[Dutch Preventive Youth Health Care Service guideline on children born too early and/or too small for gestational age]. / JGZ-richtlijn 'Te vroeg en/of small for gestational age (SGA) geboren kinderen'.

In children who are born prematurely or whose birth weight is too low for gestational age (small for gestational age (SGA)) intensive care and follow up are desirable.However, obstacles include the shared care of children born very preterm (< 32 weeks of gestation) by paediatricians, general practitioners, youth health care service (and other professionals) and the identification of possible late onset health problems in children born late preterm (32-37 weeks of gestation). This guideline is multidisciplinary and evidence based and is relevant to all professionals involved in the care of this group of children. The main recommendations are: (a) timely and complete transfer of information after discharge from hospital; (b) structured exchange of information in aftercare; (c) assigning a case manager to each child; (d) monitoring growth and development by adjusting age for preterm birth, and (e) using special growth charts for children born preterm to evaluate growth and development.

The attitudes and intention to participate in hemoglobinopathy carrier screening in The Netherlands among individuals from Turkish, Moroccan, and Surinamese descent.

OBJECTIVE: To explore factors that influence intention to participate in hemoglobinopathy (HbP) carrier screening under Dutch subjects at risk, since HbP became more common in The Netherlands. METHOD: Structured interviews with 301 subjects from Turkish, Moroccan, or Surinamese ethnicity. RESULTS: Half of the participants were familiar with HbP, 27% with carrier screening. Only 55% correctly answered basic knowledge items. After balanced information, 83% percent of subjects express intention to participate in HbP carrier screening. Intention to participate was correlated with (1) anticipated negative feelings, (2) valuing a physician's advice, and (3) beliefs on significance of carrier screening. Risk perception was a significant determinant, while respondents were unaware of HbP as endemic in their country of birth. Respondents preferred screening before pregnancy and at cost < 50€. CONCLUSION: These findings show the importance of informing those at risk by tailored health education. We propose easy access at no costs for those willing to participate in HbP carrier screening.