Treatment of extremely premature newborns: a survey of attitudes among Danish physicians

In order to describe the attitudes towards the treatment of extremely preterm infants, a questionnaire presenting a series of fictitious situations concerning imminent extremely preterm labour and treatment of an infant born after 24 weeks gestation was mailed to all physicians employed at obstetrical or paediatric departments in Denmark. The questionnaire was designed in two versions, differing as regards the parents' situation and attitude towards treatment. Each version was sent to half of the sample. Of 954 questionnaires 664 (69.6%) were completed and returned. Most respondents advocated active treatment prior to and immediately upon delivery, but many would withhold more intensive treatments or withdraw treatments in case of severe complications. The parents' situation and attitude towards treatment played a role in forming the decision choice to a significant proportion of the respondents. In severe cases, many would provide morphine in doses that could unintentionally hasten death, while few were in favour of legalizing active euthanasia.     

Developmental delay at 12 months in children born extremely preterm

AIM: To evaluate the feasibility and validity of a structured telephone interview to assess the development of children born extremely preterm. METHODS: The parents of 88 children born with a gestational age below 28 wk admitted to the neonatal intensive care unit (NICU) at Rigshospitalet, Copenhagen, were interviewed by telephone when their child was 1 y of age, corrected for preterm birth. A fully structured questionnaire on psychomotor function was used (Revised Prescreening Developmental Questionnaire (R-PDQ)). The parents of 30 children born at term without complications were interviewed for comparison. The interview was conducted by NICU staff. To validate the R-PDQ, parents of 22 children in the preterm group and parents of 19 children in the reference group conducted an Ages and Stages Questionnaire (ASQ) when their children had reached the age of 3-3(1/2) y. RESULTS: The R-PDQ was easy to use by staff and well accepted by parents. The mean score in the preterm group was 14.9+/-3.9 vs 17.7+/-2.7 in the term group (p<0.001). Three children had developmental scores below-2 SD. The R-PDQ score was associated with the ASQ score 2 y later.CONCLUSION: A structured questionnaire administrated by telephone is an alternative and usable tool for assessing neurodevelopmental deficit in children born extremely preterm. The mean developmental delay in the preterm group compared to the term group (about-1 SD) was close to expectations.     

Eating behaviour of children 1.5-3.5 years born preterm: parents' perceptions

OBJECTIVE: To investigate parents' perceptions of the eating behaviour of toddlers born preterm. METHODS: A mailed, self-administered questionnaire was sent to parents of infants born between July 1994 and July 1996 with gestational ages less than 32 weeks who had been admitted to the Neonatal Unit at Flinders Medical Centre. RESULTS: Responses were received for 95 subjects (response rate 70%) with a mean +/- SD gestational age of 29.2 +/- 2.1 weeks, birthweight of 1243 +/- 296 g and median corrected age of 134 weeks (range 84-185 weeks) at the time of study. Seventy-eight per cent of parents were concerned about the quality of food intake and 45% wished to change their child's eating behaviour. Although only 20% of parents identified their toddlers as being fussy eaters, food refusal was reported by 58% of respondents, and 51% and 69% used food rewards or coaxing, respectively, to encourage intake. Parents of toddlers who had received home gavage feeding (n = 5) or had a respiratory or neurological disability (n = 16), reported poorer feeding indicators. CONCLUSIONS: Programmes providing information on normal toddler eating behaviour and strategies to promote positive feeding practices may reassure parents and promote development of food preferences and eating behaviours consistent with long-term healthy eating habits. Special emphasis should be placed on children with a disability or children who have received home gavage feeding.     

Use of social networking sites by parents of very low birth weight infants: experiences and the potential of a dedicated site

The objective of this study was to study the experiences of parents of preterm infants who use social networking sites and the potential of such sites for gathering information and facilitating personal exchange. An anonymous self-reporting questionnaire was administered to parents of infants below 1,500 g birth weight born between January 1, 2009 and December 31, 2010 in two tertiary neonatal intensive care units. Of the 278 families who were sent a questionnaire, 141 responded; 53.6 % of respondents claimed to be presently members of online social networking sites. However, only 10.7 and 18.6 % used the Internet to exchange information about their infants during the NICU stay and after discharge, respectively. Most (64.0 %) responding parents considered that currently available commercial Internet sites inadequately met their need to exchange information as parents of preterm infants. Overall, 79.1 % of respondents reported that they would be interested in joining a native-language online networking site providing (1) general information on prematurity, (2) explanations of abbreviations commonly used in a hospital setting, and (3) details of common medical problems and the treatment thereof, including the availability of local therapists and follow-up services. Also, parents wanted to engage in personal exchange online not only with other parents but also with medical staff. Conclusion: The support of parents of hospitalized preterm infants by neonatal nurses and doctors could be extended by developing an expert-controlled, online networking site providing reliable and updated information and facilitating personal exchange among parents.     

Measuring developmental deficit in children born at gestational age less than 26 weeks using a parent-completed developmental questionnaire

AIM: To assess developmental deficit in children born at gestational age (GA) < 26 wk using a parental questionnaire and to use regression analysis to study a cohort born in 1999-2003. PATIENTS AND METHODS: Three groups were studied: group 1, GA < 26 wk; group 2, GA 26-27 wk; group 3, children born at term. The Ages & Stages Questionnaire (ASQ) was used. The parents of each child were mailed an age-specific questionnaire between November 2004 and April 2005. The term children were used as a reference to calculate a standard deviation score (ASQ-SDS) for each child in the two preterm groups. RESULTS: Seventy-five per cent of the questionnaires were returned (group 1: n=61; group 2: n=57; group 3: n=72). The age at scoring ranged from 12 to 60 mo (mean 32.8 mo). After correction for parental education, 22% of the children born at GA < 26 wk and 13% of those at GA 26-27 wk had an ASQ-SDS below -2. Chronic lung disease of prematurity was associated with developmental deficit (mean difference -1.1 ASQ-SDS, p=0.004). CONCLUSION: The ASQ identified a significant developmental deficit in the children born extremely preterm. The rate of 22%, however, in children born at GA < 26 wk is reassuring.     

Difficulties with the follow-up of a cohort of very preterm infants: The EPIPAGE Paris-Petite-Couronne population]

OBJECTIVES: To describe the characteristics of the children of parents who did not respond to a follow-up questionnaire in a cohort of very preterm infants (EPIPAGE study) and to explore the reasons why they did not complete the questionnaires. METHODS: The non-respondents (N = 176) were the parents who did not return the questionnaires at 1 and 2 years. Contacts were organised by telephone calls and at home visits. RESULTS: The families of the non-respondents presented more socioeconomic difficulties and their children were born more preterm than those followed up without difficulties. The efforts made to contact the non-respondents revealed that their families were often confronted with major adverse socioeconomic difficulties, had severe illnesses and psychological troubles. Half of the children of the non-respondents were finally examined at the 5-year assessment. They showed lower performances at the cognitive development test and a poorer health status than the children of the respondents. CONCLUSION: When the follow-up does not include the initial population in its totality, the socioeconomic difficulties are underestimated and probably also the rate of sequelae associated with very preterm delivery.     

Physician counselling practices and decision-making for extremely preterm infants in the Pacific Rim

OBJECTIVES: This study was undertaken to evaluate physician counselling practices and resuscitation decisions for extremely preterm infants in countries of the Pacific Rim. We sought to determine the degree to which physician beliefs, parents' opinion and medical resources influence decision-making for infants at the margin of viability. METHODS: A survey was administered to neonatologists and paediatricians who attend deliveries of preterm infants in Australia, Hong Kong, Japan, Malaysia, Taiwan and Singapore. Questions were asked regarding physician counselling practices, decision-making for extremely preterm infants and demographic information. RESULTS: Physicians counsel parents antenatally with increasing frequency as gestational age increases. Most physicians discuss infant mortality and morbidity with parents prior to delivery. Physicians less frequently discuss the option of no resuscitation of an extremely preterm infant, withdrawal of support at a later time, or financial costs to parents. Severe congenital malformations, perception of a poor future quality of life, parental wishes and a high probability of death for the infant are influential in limiting resuscitation in very preterm infants for a majority of physicians. Less influential factors are parent socioeconomic status, language barriers, financial costs for the family, allocation of national resources, moral or religious considerations, or fear of litigation. Physician thresholds for resuscitation of infants ranged between 22 and 25 weeks gestation and between 400 and 700 g birthweight. CONCLUSIONS: We report physician beliefs and practices regarding resuscitation and the counselling of parents of extremely preterm infants in Pacific Rim countries. While we find variation among countries, physician practices appear to be determined by ethical decision-making and medical factors rather than social or economic factors in each country.     

Treatment of severely diseased newborns: a survey of attitudes among Danish physicians

In order to describe the attitudes towards treatment of severely diseased newborns a questionnaire presenting four fictive situations concerning infants with myelomeningocele, trisomy 13, Down's syndrome and epidermolysis bullosa lethalis was mailed to all physicians employed at obstetric or paediatric departments in Denmark. The questionnaire was designed in two versions, differing as regards the parents' situation and attitude towards treatment in two of the situations. Each version was sent to half of the sample. Of 954 questionnaires 664 (69.6%) were completed and returned. The parents' situation and attitude towards treatment played a role in forming the treatment choice to a significant proportion of the respondents, although the majority seemed to form their decisions independently of this factor. In the situations presenting the infants with myelomeningocele and Down's syndrome there was controversy concerning the level of active treatment, while only a minority would provide active treatment in the two other situations. In the case of epidermolysis bullosa lethalis most respondents would provide morphine in doses that could unintentionally hasten death, while few were in favour of legalizing active euthanasia.     

Randomised trial of parental support for families with very preterm children: outcome at 5 years

AIMS: To test the effectiveness of a home based developmental education intervention in improving outcome at 5 years for very preterm infants. METHODS: The Avon Premature Infant Project (APIP) is a randomised controlled trial in which the parents of 284 babies born <33 weeks gestational age received a developmental education programme, a social support intervention, or standard care. A term reference population was also recruited. This study reports outcomes at 5 years (mean age 58 months 15 days) for 187 (66%) of these children without disability. Outcomes were assessed using the British Ability Scales II for cognitive development, the Movement ABC for motor impairment, and the Child Behavior Checklist for behavioural problems. RESULTS: Preterm infants showed poorer cognitive performance than their term peers. Mean (SD) general conceptual ability (GCA) scores were: Portage 99.2 (15.7); parent adviser 100.3 (14.8); preterm control 101.1 (15.0); term reference 107.2 (13.4). There were no significant differences between preterm groups in GCA scores indicating no effect of either intervention. Similarly, there was no significant effect of intervention on behavioural or motor outcomes. Further analyses, in which outcome data were adjusted for social factors, did not reveal any differences between the three preterm groups or by subgroups classified by a range of perinatal variables. CONCLUSION: The small advantage shown at 2 years of age is no longer detectable at 5 years. These results question the effectiveness of early intervention in enhancing cognitive, behavioural, and motor function at 5 years.     

Ten-year follow-up of children born before 29 gestational weeks: health, cognitive development, behaviour and school achievement

Since the mid-1990s several studies have reported poor school performance in extremely preterm infants. The necessity to provide a full picture of the child's situation has been indicated. In a southern Swedish population 32,120 infants were born during the 2-y period 1985-1986. In total, 121 infants (0.4%) were reported liveborn before the 29th gestational wk and 12 (0.04%) were reported stillborn. Only 65 infants (50%) survived to the age of 10 y. The aim of this study was to evaluate the situation of extremely preterm (EPT) children at school, compared with that of full-term (FT) control children, at the age of 10 y. Health, cognitive development, school achievement and behaviour were measured. Ninety-two percent of the preterm children had no major neurological disability and most were in good health. The EPT children had an IQ of 90 +/- 15 vs 106 +/- 15 (mean +/- SD) for the FT children (p <0.001), and on the test of Visual-Motor Integration, the EPT children had 93.3 +/- 12.2 vs 109.6 +/- 14.2 for FT peers (p < 0.001). On both tests the differences between the groups corresponded to approximately one standard deviation. Thirty-eight percent of the EPT children performed below grade level at school. Thirty-two percent had general behavioural problems and 20% had attention deficit hyperactivity disorder, compared with 10% and 8%, respectively, in the FT group. EPT children require interventions to support their development and reduce behavioural problems.     

Sehr kleine Frühgeborene an der Grenze der Lebensfähigkeit

Treatment of extremely immature infants at the limits of viability can be considered as a form of experimental medicine, which can only be carried out following comprehensive informed consent and at the specific request of the parents; however, there is no general consensus on how to define the limits of viability. The gestational age associated with an overall 50?% mortality rate was decreased in England from 25 weeks in 1995 to 24 weeks in 2006, while it was 23 weeks in a 2004–2007 population-based cohort study in Sweden. In Germany, 38?% of infants with a birth weight below 500 g admitted to neonatal care in 2008–2012 were alive at 180 days and almost 26?% survived without surgical interventions for posthemorrhagic hydrocephalus, necrotizing enterocolitis or retinopathy. Neurodevelopmental assessment of former premature babies at 2 years of age using standardized tests, such as the Bayley scales of infant development, are commonly used endpoints in randomized controlled trials and large cohort studies but the results may be misleading in individual infants and should not be used for benchmarking purposes. More can be learnt from examinations at 5 years of age that look at intelligence, memory and executive functions. More than one third of surviving infants with a birth weight below 750 g will have special educational needs when entering primary school, and academic performance continues to be a major issue for these children, especially boys. Anxiety, autistic traits and attention deficits are more prevalent in adults born extremely preterm while rates of substance abuse are decreased, as compared to matched controls. Counseling expectant parents on the limits of viability requires detailed knowledge of mortality and morbidity of extremely preterm infants.     

Preschool children born moderately preterm have increased waist circumference at two years of age despite low body mass index

Aim: To investigate the development of waist circumference (WC) in preschool children born preterm compared with a population‐based reference. Background: Children born preterm are reported to be insulin resistant, despite being lean during early childhood. We hypothesize that the mechanism is through increased visceral adiposity. Methods: Data from 4446 preschool children (2169 girls/2277 boys) born in 2001–2006 from a population‐based study were compared with longitudinal measurements of body mass index (BMI) and WC from a cohort of 152 children (64 girls/88 boys) born moderately preterm in 2002–2004 (gestational age, 32–37 weeks). Results: In the preterm children, the mean WC was 2.8 cm larger compared with the reference group (p < 0.001) at 2 years of age but not at 5 years of age. There was no significant difference in the mean BMI at 2 years of age. The preterm group was significantly leaner at 5 years of age, with a mean BMI of 15.13 compared with 15.98 in the reference group (p < 0.001). Conclusion: Children born moderately preterm present as lean during early childhood but have an increased waist circumference in infancy, pointing towards a change in fat distribution with more abdominal fat. This may have implications for their metabolic status.     

Ages and Stages Questionnaire used to measure cognitive deficit in children born extremely preterm

AIM: To validate the Ages and Stages Questionnaire (ASQ) and to measure average cognitive deficit in children born extremely preterm. METHODS: Parents of 30 term children aged 36-42 mo completed the ASQ and the children underwent the Wechsler Preschool and Primary Scales of Intelligence--Revised. In a second study, the ASQ was obtained in 22 children born extremely preterm and 19 term children at the age of 35-44 mo. RESULTS: The overall ASQ score correlated significantly with IQ (p=0.007). The children born extremely preterm had an ASQ score of -1.06 SD below the score of the term children (p=0.048). CONCLUSION: The ASQ identified a developmental deficit of the expected magnitude.     

'Facilitated tucking by parents' in pain management of preterm infants-a randomized crossover trial

BACKGROUND: There is a need for a safe and effective non-pharmacological pain management method for preterm infants. The parents could be given an active role in the pain management which may help the parents to cope with the stress related to painful situations of the infant. AIMS: To examine the effectiveness of a method called 'facilitated tucking by parents' (a parent holds the infant in a flexed position) in pain management during endotracheal/pharyngeal suctioning of preterm infants. In addition, the parental perception of the method was studied. STUDY DESIGN: A randomized crossover trial. SUBJECTS: Twenty preterm infants with one of their parents participated in the study. Infants' gestational age ranged from 24 to 33 (median 28) weeks and postnatal age from 6 to 37 days (median 15 days). OUTCOME MEASURES: The primary outcome was the Neonatal Infant Pain Scale (NIPS) score. Heart rate and oxygen saturation were recorded. Parents completed a questionnaire about their perception of the procedure. RESULTS: The highest NIPS score was median 3 (range from 2 to 6) using 'facilitated tucking by parents' and median 5 (range from 2 to 7) without tucking during suctioning (p < 0.001). The infants calmed down more quickly after 'facilitated tucking by parents' (5 s vs. 17 s, p = 0.024). Nineteen out of twenty parents preferred facilitated tucking during suctioning compared to control care. CONCLUSIONS: Facilitated tucking by parents is an effective and safe pain management method during suctioning of preterm infants. This study shows that parents can be given an active role in the pain care of their preterm infants.     

Differential strength of association of child injury prevention attitudes and beliefs on practices: a case for audience segmentation

OBJECTIVE: Many injuries to children cannot be prevented without some degree of active behavior on the part of parents. A better understanding of social and cognitive determinants of parents' injury prevention behavior and the identification of potential subgroups for targeted message delivery could advance the effectiveness of educational and behavioral interventions. This study assessed the degree to which parents' injury prevention behavior is associated with theoretical determinants and examined whether this relation differs by age or birth order of child. DESIGN: Cross sectional observational study. SETTING: Three Midwestern pediatric clinics. SUBJECTS: 594 parents of children ages 0-4 attending routine well child visits. MEASURES: Injury prevention attitudes, beliefs, and practices. RESULTS: Overall, only modest relations were observed between injury beliefs and attitudes and injury prevention behaviors. However, these relations differed substantially by child age and birth order, with stronger associations observed for parents of older first born children. Outcome expectations and social norms were more strongly related to injury prevention behavior among parents of preschool children than among parents of infants and toddlers, while attitudes were more predictive for parents of first born children than parents of later born children. CONCLUSIONS: These findings highlight the complexity of relations between theorized determinants and behavior, and suggest the potential utility of using audience segmentation strategies in behavioral interventions addressing injury prevention.     

The impact of neonatal unit policies on breast milk feeding at discharge of moderate preterm infants: The EPIPAGE‐2 cohort study

Facilitating factors and barriers to breast milk feeding (BMF) for preterm infants have been mainly studied in very preterm populations, but little is known about moderate preterm infants. We aimed to analyze hospital unit characteristics and BMF policies associated with BMF at discharge for infants born at 32 to 34 weeks' gestation. EPIPAGE‐2, a French national cohort of preterm births, included 883 infants born at 32 to 34 weeks' gestation. We investigated kangaroo care in the first 24 hr, early involvement of parents in feeding support, volume of the unit, BMF information given to mothers hospitalized for threatened preterm delivery, protocols for BMF, presence of a professional trained in human lactation, unit training in neurodevelopmental care, and regional BMF initiation rates in the general population. Multilevel logistic regression analysis was used to investigate associations between unit policies and BMF at discharge, adjusted for individual characteristics and estimating odds ratios (ORs) and 95% confidence intervals (CIs). Overall, 59% (490/828) of infants received BMF at discharge (27% to 87% between units). Rates of BMF at discharge were higher with kangaroo care (adjusted OR 2.03 [95% CI 1.01, 4.10]), early involvement of parents in feeding support (1.94 [1.23, 3.04]), unit training in a neurodevelopmental care programme (2.57 [1.18, 5.60]), and in regions with a high level of BMF initiation in the general population (1.85 [1.05, 3.28]). Creating synergies by interventions at the unit and population level may reduce the variability in BMF rates at discharge for moderate preterm infants.     

Parents' evaluation of developmental status in children born with a birthweight of 1250 g or less

OBJECTIVE: To evaluate the agreement between parental reporting of development of children born very preterm using the Parents' Evaluation of Developmental Status (PEDS) questionnaire and professional assessment by a paediatric developmental team in the detection of sensorineural disability. METHODS: A cross-sectional cohort study of 362 children born in Queensland with a birthweight < or = 1250 g, who were surviving at 2 and 4 years of age corrected for prematurity, was conducted. Parents completed the PEDS questionnaire prior to their child receiving a neurodevelopmental assessment. The level of agreement for sensorineural disability between the neurodevelopmental assessment and the parents' score on the PEDS questionnaire was measured using the kappa statistic, and screening test characteristics were calculated. Logistic regression was used to investigate factors that might affect agreement. RESULTS: Two hundred and eighty-three (78%) of the eligible children were located and contacted. Of these, 216 (76%) agreed to participate in the study (110, 2-year-olds; 106, 4-year-olds). Agreement between the two forms of rating sensorineural disability (developmental quotient > -2SD (standard deviation), cerebral palsy, bilateral blindness and deafness requiring aids) for the 4-year age group children was fair (kappa = 0.27, P = 0.001). PEDS accurately identified 69% (11 of 16) of disabled children and 72% (65 of 90) non-disabled children. The test characteristics for these children were similar to Glascoe's norming sample with a PPV 31% (95% CI: 14-48%), specificity 72% (95% CI: 62-81%), but lower sensitivity 69% (95% CI: 62-81%) and higher false-negative rate 31% (95% CI: 11, 59). Agreement for the 2-year age group was fair with poor test characteristics. Other comparisons for both age groups (PEDS A and B compared using a disability status with DQ > -1SD) showed poor agreement and test characteristics. Gestation age < 27 weeks and maternal education at or below grade 10 in the 2-year age group were the only factors independently affecting agreement. CONCLUSIONS: The agreement between parental evaluation of sensorineural disability status using PEDS and paediatrics developmental assessment in children born very preterm at 4-years corrected age for prematurity compares favourably with Glascoe's norming sample. The lower agreement seen in the 2-year age group limits the utility of PEDS to be used as a screen for disability at an age when early intervention may be useful. The PEDS questionnaire is designed and normed for the general paediatric population, and it is not clear if parents of children born very preterm may have interpreted the PEDS questionnaire in relation to their satisfaction with their child's developmental progress rather than their child's functional ability.     

Use of medical services by very preterm children during the first year of life in the Epipage cohort]

OBJECTIVES: To compare the use of health and social services between children born before 33 weeks (very preterm), children born at 33 or 34 weeks (moderately preterm) and children born at 39 or 40 weeks (full term). POPULATION AND METHODS: All very preterm children born in 1997 in nine French regions and a representative sample of the two other groups were followed up since birth. Data on the use of services between discharge from initial neonatal hospitalisation and the 9 months after birth were obtained by mail questionnaire filled in by parents. RESULTS: 38.2% of very preterm children, 24.3% of moderately preterm children and 10.3% of full term children were admitted to hospital at least once. Respiratory tract disorder was the main reason for rehospitalisation of very preterm children. The total number of visits, visits to specialists, and chest therapy were more frequent among very preterm children than among the two other groups. CONCLUSION: Medical care of very preterm children is intensive after discharge from initial neonatal hospitalisation. Need of services are also substantial for moderately preterm children.     

Body measurements, neurological and behavioural development in six-year-old children born preterm and/or small-for-gestational-age

In three groups of low birth weight (LBW) infants: full term, small-for-gestational-age (FT-SGA, N = 142); preterm, appropriate-for-gestational-age (PT-AGA, N = 47); preterm, small-for-gestational-age (PT-SGA, N = 20); and a reference group of FT-AGA infants (N = 185) the relationship between body weight, body length and head circumference and the presence of minor neurological dysfunction (MND) was studied. Non-caucasian and handicapped children were excluded from the analysis. Data were collected on behaviour and school achievement. The parameters of physical growth in the three LBW groups were reduced significantly compared to the FT-AGA group. In both preterms and full-terms body measurements were related to weight at term age; in the preterm groups no relation with gestational age at birth was found. MND was not related to body weight or length. In the group of FT severely growth retarded infants a relation was found between a skull circumference below the third centile and the presence of MND. Body measurements, behaviour at home and at school and school achievement were not related. The significance of severe intrauterine growth retardation for developmental disorders is emphasized. The data suggest a different aetiology and clinical significance of small head size for AGA and SGA born children.