Over the last two decades, improvements in medical care have been associated with a significant increase and better outcome of very preterm (VP, < 32 completed gestational weeks) and very low birth weight (VLBW, < 1500 g) infants. Only a few publications analyse changes of their short-term outcome in a geographically defined area over more than 10 years. We therefore aimed to investigate the net change of VP- and VLBW infants leaving the hospital without major complications.

Background: While survival rates of extremely preterm infants have improved over the last decades, the incidence of neurodevelopmental disability (ND) in survivors remains high. Representative current data on the severity of disability and of risk factors associated with poor outcome in this growing population are necessary for clinical guidance and parent counselling.Methods: Prospective longitudinal multicentre cohort study of preterm infants born in Switzerland between 24^0/7and 27^6/7weeks gestational age during 2000–2008. Mortality, adverse outcome (death or severe ND) at two years, and predictors for poor outcome were analysed using multilevel multivariate logistic regression. Neurodevelopment was assessed using Bayley Scales of Infant Development II. Cerebral palsy was graded after the Gross Motor Function Classification System.Results: Of 1266 live born infants, 422 (33%) died. Follow-up information was available for 684 (81%) survivors: 440 (64%) showed favourable outcome, 166 (24%) moderate ND, and 78 (11%) severe ND. At birth, lower gestational age, intrauterine growth restriction and absence of antenatal corticosteroids were associated with mortality and adverse outcome (p < 0.001). At 36^0/7weeks postmenstrual age, bronchopulmonary dysplasia, major brain injury and retinopathy of prematurity were the main predictors for adverse outcome (p < 0.05). Survival without moderate or severe ND increased from 27% to 39% during the observation period (p = 0.02).Conclusions: In this recent Swiss national cohort study of extremely preterm infants, neonatal mortality was determined by gestational age, birth weight, and antenatal corticosteroids while neurodevelopmental outcome was determined by the major neonatal morbidities. We observed an increase of survival without moderate or severe disability.

Premature birth is stressful for infants and parents and can adversely affect the parent–infant dyad. This mixed-methods pilot study evaluates whether creative music therapy (CMT) can alleviate anxiety, stress, and depressive symptoms in parents and support the bonding process with their infant. Sixteen parent couples were included. Ten couples were randomly allocated to the music therapy group (MTG) and six to the control group (CG). All couples completed psychological questionnaires measuring anxiety and depressive symptoms as well as an implicit measure of parent–infant attachment at two weeks postpartum (T1), at approximate neonatal intensive care unit (NICU) hospitalization halftime (T2), and two weeks after the infant had been discharged (T3). At T1 and T2, the parents additionally completed a questionnaire assessing the degree of stress they experienced at the NICU. Qualitative data were collected through a semi-structured, problem-centered interview with MTG parents at T3. The results of the quantitative analyses revealed reductions in anxiety levels from T1 to T2 (p = 0.002) as well as decreases in depressive symptoms from T2 to T3 (p = 0.022). No such changes were apparent in the CG. In fact, parental stress increased from T1 to T2 (p = 0.016). Significant increases in attachment across time were also observed within the MTG, but not in the CG. The qualitative inquiry confirmed that CMT can support the parent–infant relationship. Being in musical interaction evoked feelings of joy and relaxation in the parents and encouraged them to interact more profoundly with their infant. The results call for a more extensive powered follow-up study to further investigate CMT’s potential for parental well-being and parent–infant bonding.

In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.