Profiling the preterm or VLBW born adolescent; implications of the Dutch POPS cohort follow-up studies.

In 1983, data of a unique nationwide cohort of 1338 very preterm (<32 weeks of gestation) or VLBW (birth weight<1500g) infants in the Netherlands was collected and followed at several ages until they reached the age of 19 years. At 19 years of age a more extensive follow-up study was done, including questionnaires, tests on a computer and a full physical exam. These studies provide insight into how Dutch adolescents at 19 years of age, who were born very preterm or with a very low birth weight (VLBW), reach adulthood. At 19 years, 705 POPS participants participated (74% of 959 still alive). Outcome measures at 19 years included: physical outcomes (e.g. blood pressure), cognition, behavior, quality of life, and impact of handicaps. The POPS participants showed more impairments on most outcome measures at various ages, compared to norm data. Major handicaps remained stable as the children grew older, but minor handicaps and disabilities increased. At 19 years of age, only half (47.1%) of the survivors had no disabilities and no minor or major handicaps. Especially those born small for gestational age (SGA) seem most vulnerable. These long-term results help to support preterm and SGA born children and adolescents in reaching independent adulthood, and stress the need for long term follow-up studies and to promote prevention of disabilities and of preterm birth itself.

Parental knowledge reduces long term anxiety induced by false-positive test results after newborn screening for cystic fibrosis.

BACKGROUND: False-positive screening results in newborn screening for cystic fibrosis may lead to parental stress, family relationship problems and a changed perception of the child's health. AIM OF THE STUDY: To evaluate whether parental anxiety induced by a false positive screening result disappears after six months and to assess whether a special program to inform parents prior and during the screening procedure prevents or diminishes parental anxiety. METHODS: Prospective controlled study assessing the long term effects of false-positive test results of newborn screening for cystic fibrosis (NBSCF) on parental anxiety and stress by means of questionnaires sent to parents of 106 infants with a false positive newborn screening test and 318 randomly selected infants with a true negative screening test. Additionally we interviewed 25 parents of the false-positive group. RESULTS: Parents showed negative feelings after being informed about the positive screening test result. After confirmation that their child was healthy and not suffering from CF, most parents felt reassured. After six months no difference in anxiety levels between both groups of parents was found. Well-informed parents in the false positive group experienced less stress. CONCLUSIONS: A positive screening test result induces parental anxiety but false positive test results in NBSCF do not seem to cause long-term anxiety. Well-informed parents show lower stress and anxiety levels.

Opinions of children about participation in medical genetic research.

AIMS: The objective was to evaluate children's opinions about their participation in a large research project. METHODS: Polish children between 6 and 14 years of age completed a questionnaire about their participation in the Polish Gabriel study (which aims to identify genetic and environmental causes of asthma). In total 706 questionnaires were collected. RESULTS: Children's main motivation for participation was wanting to know whether they were healthy or not. Most children could think of no reasons to reconsider participation. Children aged 6-10 years might reconsider participating because they did not know what was going to happen. A third of the children were not informed by anybody about the study. Especially the youngest children indicated a need for a tailored letter (42%). The youngest children were less often asked for their opinion about participation. All children preferred that both parents and children are asked for consent or assent. Children who were not informed or not asked for their opinion seemed less emotionally involved in the study. CONCLUSION: While researchers and parents tend to focus their information provision to older children and include them in decision-making, especially the younger children expressed a need for more tailored information and involvement in their participation in research.

Health-related quality of life of very preterm infants at 1 year of age after two developmental care-based interventions.

BACKGROUND: In the context of a growing interest in developmental care (DC) this study explores the effect of the basic elements of DC and the additional effect of the individual approach of the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) on the health-related quality of life (HRQoL) of very preterm infants at 1 year of age. The basic elements of DC in this study were defined as the use of standardized nests and incubator covers whose protective characteristics were hypothesized to have a positive effect on the infant's HRQoL. The individualized approach of the NIDCAP was thought to further increase HRQoL. METHODS: Very preterm (

Parental experiences during the first period at the neonatal unit after two developmental care interventions.

AIM: Developmental care has gained increased attention in the individualized care for preterm infants. This study was designed to explore the effect of a basic form of developmental care and the more extended Newborn Individualized Developmental Care and Assessment Program (NIDCAP) on parental stress, confidence and perceived nursing support. METHODS: Two consecutive randomized controlled trials (RCT's) comparing (1) standard care versus basic developmental care (standardized nests and incubator covers) (n = 133) and (2) basic developmental care versus NIDCAP, including behavioural observations (n = 150). Parents of infants born <32 weeks gestational age (GA) received questionnaires after the first week of admission in the neonatal unit and on average these 2 weeks after the birth of their infant. RESULTS: No significant differences were found in confidence, perceived nursing support or parental stress. The difference in parental stress between mother and father was less in the NIDCAP intervention group (p = .03), although not significant. CONCLUSION: Both basic developmental care and NIDCAP had little effect on parental experiences during the first period at the neonatal unit. As a result of increased paternal stress, the NIDCAP intervention tended to decrease the difference in parental stress levels of fathers and mothers, possibly because of the increased involvement of father during the NIDCAP intervention.

Clinicians' perspective on quality of life assessment in paediatric clinical practice.

AIM: This study was undertaken to investigate paediatric clinicians' views on and use of quality of life (QoL) assessment in clinical practice. METHODS: A survey was conducted among members of the Dutch Paediatric Association via e-mail. RESULTS: Over half of the 303 respondents (57%) believed that it was possible to use QoL questionnaires in clinical practice. The majority indicated that assessing QoL was beneficial and that it was especially necessary to assess QoL in children with a chronic disease (82%). Although only a minority (17%) currently used QoL questionnaires, most respondents would want to use QoL questionnaires in the future (76%). Obstacles that prevent the use of QoL questionnaires are the extra time needed for assessment, the unavailability of standardized questionnaires and insufficient knowledge about QoL. CONCLUSION: This survey shows that paediatric clinicians are positive towards QoL assessment, but that certain obstacles prevent the use of questionnaires. Thus, to facilitate future use, QoL questionnaires need to be developed from the perspective of the paediatrician. This means that they need to be developed for clinical use and brought to the attention of the paediatric health care community, demonstrating their validity to child health care.