23 research outputs found
Health-related quality of life of children born very preterm: a multinational European cohort study
Purpose
This study aims to (1) describe the health-related quality of life (HRQoL) outcomes experienced by children born very preterm (28â31 weeksâ gestation) and extremely preterm (<â28 weeksâ gestation) at five years of age and (2) explore the mediation effects of bronchopulmonary dysplasia (BPD) and severe non-respiratory neonatal morbidity on those outcomes.
Methods
This investigation was based on data for 3687 children born atâ<â32 weeksâ gestation that contributed to the EPICE and SHIPS studies conducted in 19 regions across 11 European countries. Descriptive statistics and multi-level ordinary linear squares (OLS) regression were used to explore the association between perinatal and sociodemographic characteristics and PedsQLâą GCS scores. A mediation analysis that applied generalised structural equation modelling explored the association between potential mediators and PedsQLâą GCS scores.
Results
The multi-level OLS regression (fully adjusted model) revealed that birth atâ<â26 weeksâ gestation, BPD status and experience of severe non-respiratory morbidity were associated with mean decrements in the total PedsQLâą GCS score of 0.35, 3.71 and 5.87, respectively. The mediation analysis revealed that the indirect effects of BPD and severe non-respiratory morbidity on the total PedsQLâą GCS score translated into decrements of 1.73 and 17.56, respectively, atâ<â26 weeksâ gestation; 0.99 and 10.95, respectively, at 26â27 weeksâ gestation; and 0.34 and 4.80, respectively, at 28â29 weeksâ gestation (referent: birth at 30â31 weeksâ gestation).
Conclusion
The findings suggest that HRQoL is particularly impaired by extremely preterm birth and the concomitant complications of preterm birth such as BPD and severe non-respiratory morbidity.This study was supported by a grant from the European Unionâs Horizon 2020 Research and Innovation Programme under grant agreement No 633724. Prof Petrou receives support as a National Institute for Health Research (NIHR) Senior Investigator (NF-SI-0616-10103) and from the NIHR Applied Research Collaboration Oxford and Thames Valley
Variation in follow-up for children born very preterm in Europe
Background: Children born very preterm (<32 weeks of gestation) face high risks of neurodevelopmental and health difficulties compared with children born at term. Follow-up after discharge from the neonatal intensive care unit is essential to ensure early detection and intervention, but data on policy approaches are sparse. Methods: We investigated the characteristics of follow-up policy and programmes in 11 European countries from 2011 to 2022 using healthcare informant questionnaires and the published/grey literature. We further explored how one aspect of follow-up, its recommended duration, may be reflected in the percent of parents reporting that their children are receiving follow-up services at 5 years of age in these countries using data from an area-based cohort of very preterm births in 2011/12 (N = 3635). Results: Between 2011/12 and 22, the number of countries with follow-up policies or programmes increased from 6 to 11. The policies and programmes were heterogeneous in eligibility criteria, duration and content. In countries that recommended longer follow-up, parent-reported follow-up rates at 5 years of age were higher, especially among the highest risk children, born <28 weeksâ gestation or with birthweight <1000 g: between 42.1% and 70.1%, vs. <20% in most countries without recommendations. Conclusions: Large variations exist in follow-up policies and programmes for children born very preterm in Europe; differences in recommended duration translate into cross-country disparities in reported follow-up at 5 years of age
Fluid Ontologies in the Search for MH370
This paper gives an account of the disappearance of Malaysian Airways Flight MH370 into the southern Indian Ocean in March 2014 and analyses the rare glimpses into remote ocean space this incident opened up. It follows the tenuous clues as to where the aeroplane might have come to rest after it disappeared from radar screens â seven satellite pings, hundreds of pieces of floating debris and six underwater sonic recordings â as ways of entering into and thinking about ocean space. The paper pays attention to and analyses this space on three registers â first, as a fluid, more-than-human materiality with particular properties and agencies; second, as a synthetic situation, a composite of informational bits and pieces scopically articulated and augmented; and third, as geopolitics, delineated by the protocols of international search and rescue. On all three registers â as matter, as data and as law â the ocean is shown to be ontologically fluid, a world defined by movement, flow and flux, posing intractable difficulties for human interactions with it
Economic costs at age five associated with very preterm birth : multinational European cohort study
Background
This study aims to estimate the economic costs of care provided to children born very preterm and extremely preterm across 11 European countries, and to understand what perinatal and socioeconomic factors contribute to higher costs.
Methods
Generalised linear modelling was used to explore the association between perinatal and sociodemographic characteristics and total economic costs (âŹ, 2016 prices) during the fifth year of life.
Results
Lower gestational age was associated with increased mean societal costs of âŹ2755 (pâ<â0.001), âŹ752 (pâ<â0.01) and âŹ657 (pâ<â0.01) for children born at <â26, 26â27 and 28â29 weeks, respectively, in comparison to the reference group born at 30â31 weeks. A sensitivity analyses that excluded variables (BPD, any neonatal morbidity and presence of congenital anomaly) plausibly lying on the causal pathway between gestational age at birth and economic outcomes elevated incremental societal costs by âŹ1482, âŹ763 and âŹ144 at <â26, 26â27 and 28â29 weeks, respectively, in comparison to the baseline model.
Conclusion
This study provides new evidence about the main cost drivers associated with preterm birth in European countries. Evidence identified by this study can act as inputs within cost-effectiveness models for preventive or treatment interventions for preterm birth
Parentsâ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study
Background
Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents’ perceptions of post-discharge healthcare for their children born very preterm in a European multi-country cohort study.
Methods
Data come from a 5-year follow-up of an area-based cohort of births <32 weeks’ gestation in 19 regions from 11 European countries. Perinatal data were collected from medical records and 5-year data from parent-report questionnaires. Parents rated post-discharge care related to their children’s preterm birth (poor/fair/good/excellent) and provided free-text suggestions for improvements. We analyzed sociodemographic and medical factors associated with poor/fair ratings, using inverse probability weights to adjust for attrition bias, and assessed free-text responses using thematic analysis.
Results
Questionnaires were returned for 3635 children (53.8% response rate). Care was rated as poor/fair for 14.2% [from 6.1% (France) to 31.6% (Denmark)]; rates were higher when children had health or developmental problems (e.g. cerebral palsy (34.4%) or epilepsy (36.9%)). From 971 responses, 4 themes and 25 subthemes concerning care improvement were identified.
Conclusions
Parents’ experiences provide guidance for improving very preterm children’s post-discharge care; this is a priority for children with health and developmental problems as parental dissatisfaction was high.
Impact
In a European population-based very preterm birth cohort, parents rated post-discharge healthcare as poor or fair for 14.2% of children, with a wide variation (6.1–31.6%) between countries.
Dissatisfaction was reported in over one-third of cases when children had health or developmental difficulties, such as epilepsy or cerebral palsy.
Parents’ free-text suggestions for improving preterm-related post-discharge healthcare were similar across countries; these focused primarily on better communication with parents and better coordination of care.
Parents’ lived experiences are a valuable resource for understanding where care improvements are needed and should be included in future research.
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