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).

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.

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.

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.

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).

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.

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.

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.

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).

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.

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).

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.

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.

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.

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.

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).

[Dutch Preventive Youth Health Care Service guideline on children born too early and/or too small for gestational age].

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.

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.

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.

[The impact of a premature birth on the family; consequences are experienced even after 19 years].

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.

Changes in quality of life into adulthood after very preterm birth and/or very low birth weight in the Netherlands.

Background: It is important to know the impact of Very Preterm (VP) birth or Very Low Birth Weight (VLBW). The purpose of this study is to evaluate changes in Health-Related Quality of Life (HRQoL) of adults born VP or with a VLBW, between age 19 and age 28.

Methods: The 1983 nationwide Dutch Project On Preterm and Small for gestational age infants (POPS) cohort of 1338 VP (gestational age <32 weeks) or VLBW (<1500 g) infants, was contacted to complete online questionnaires at age 28.

To know or not to know, disclosure of a newborn carrier screening test result for cystic fibrosis.

Purpose: Most newborn screening (NBS) strategies for Cystic Fibrosis (CF) also identify carriers. However, it is unclear if parents want to be informed about their child's carrier status or not.

Methods: Focus group discussions with pregnant couples to explore their opinions about disclosure of a carrier result for CF of their newborn.

Staff opinions regarding the Newborn Individualized Developmental Care and Assessment Program (NIDCAP).

This study explored the opinions of (para)medical and nursing staff in two Dutch Neonatal Intensive Care Units (NICU's). A questionnaire was used that measured: a) the perceived impact of NIDCAP on several NICU conditions, b) attitudes, subjective norm, perceived behavioral control, knowledge and abilities of using the NIDCAP method (based on the Theory of Planned Behavior) and c) training interest, requirements, information sources and the relevance of the NIDCAP method for different groups of NICU patients. Respondents were positive about NIDCAP and felt that using NIDCAP is fulfilling and leads to improvement of the infant's development, health and well-being.