Developmental motor problems and health-related quality of life in 5-year-old children born extremely preterm: A European cohort study

Aim To measure the association between cerebral palsy (CP) and non-CP-related movement difficulties and health-related quality of life (HRQoL) among 5-year-old children born extremely preterm (<28 weeks gestational age). Method We included 5-year-old children from a multi-country, population-based cohort of children born extremely preterm in 2011 to 2012 in 11 European countries (n = 1021). Children without CP were classified using the Movement Assessment Battery for Children, Second Edition as having significant movement difficulties (<= 5th centile of standardized norms) or being at risk of movement difficulties (6th-15th centile). Parents reported on a clinical CP diagnosis and HRQoL using the Pediatric Quality of Life Inventory. Associations were assessed using linear and quantile regressions. Results Compared to children without movement difficulties, children at risk of movement difficulties, with significant movement difficulties, and CP had lower adjusted HRQoL total scores (beta [95% confidence interval] = -5.0 [-7.7 to -2.3], -9.1 [-12.0 to -6.1], and - 26.1 [-31.0 to -21.2]). Quantile regression analyses showed similar decreases in HRQoL for all children with CP, whereas for children with non-CP-related movement difficulties, reductions in HRQoL were more pronounced at lower centiles. Interpretation CP and non-CP-related movement difficulties were associated with lower HRQoL, even for children with less severe difficulties. Heterogeneous associations for non-CP-related movement difficulties raise questions for research about mitigating and protective factors.Faculdade de Ciencias e Tecnologia, Universidade Nova de Lisboa, Grant/Award Number: SFRH/BPD/117597/2016; Horizon 2020 Framework Programme, Grant/Award Number: No 633724 and No 733280; Seventh Framework Programme, Grant/Award Number: No 25988

Contexts and Approaches to Multiprofessional Working in Arts and Social Care

In this article, we identify the basic concepts informing multiprofessional competencies in arts and social work/care, focusing on their specific cultural contextualisation, as framed within the currently running project MOMU (Moving towards Multiprofessional Work in Art and Social Work) funded by the Erasmus+ Programme.[1] In short, the project aims to define competencies in teamwork and enhance educational/teacher knowledge and skills in arts and social work/care (MPW) by developing learning materials and handbooks in this area and embedding this in undergraduate HE provision. It builds on the work carried out in the project MIMO – Moving In, Moving On! which established and embedded the initial methods for MPW into professional practice in Finland and Estonia[2]. (TUAS, 2013) The emphasis of this kind of MPW work lies in combining the strengths of different arts and social work/care professionals to work effectively together with individuals or communities to address the identified needs. It is a multiprofessional practice stemming from a multidisciplinary approach to working with communities and individuals. This article will thus aim to a) articulate the cultural and critical contexts of relevant concepts and b) propose overarching criteria for learning frameworks which inform future training modules in the area of MPW

Prediction of movement difficulties at 5 years from parent report at 2 years in children born extremely preterm

Aim: To assess the predictive validity of parent-reported gross motor impairment (GMI) at age 2 years to detect significant movement difficulties at age 5 years in children born extremely preterm. Method: Data were from 556 children (270 males, 286 females) born at less than 28 weeks' gestation in 2011 to 2012 in 10 European countries. Parent report of moderate/severe GMI was defined as walking unsteadily or unable to walk unassisted at 2 years corrected age. Examiners assessed significant movement difficulties (score ≤ 5th centile on the Movement Assessment Battery for Children, Second Edition) and diagnoses of cerebral palsy (CP) were collected by parent report at 5 years chronological age. Results: At 2 years, 66 (11.9%) children had moderate/severe GMI. At 5 years, 212 (38.1%) had significant movement difficulties. Parent reports of GMI at age 2 years accurately classified CP at age 5 years in 91.0% to 93.2% of children. Classification of moderate/severe GMI at age 2 years had high specificity (96.2%; 95% confidence interval 93.6–98.0) and positive predictive value (80.3%; 68.7–89.1) for significant movement difficulties at age 5 years. However, 74.5% of children with significant movement difficulties at 5 years were not identified with moderate/severe GMI at age 2 years, resulting in low sensitivity (25.1%; 19.4–31.5). Interpretation: This questionnaire may be used to identify children born extremely preterm who at age 2 years have a diagnosis of CP or movement difficulties that are likely to have a significant impact on their functional outcomes at age 5 years.</p

Prediction of movement difficulties at 5 years from parent report at 2 years in children born extremely preterm

AimTo assess the predictive validity of parent-reported gross motor impairment (GMI) at age 2 years to detect significant movement difficulties at age 5 years in children born extremely preterm. MethodData were from 556 children (270 males, 286 females) born at less than 28 weeks' gestation in 2011 to 2012 in 10 European countries. Parent report of moderate/severe GMI was defined as walking unsteadily or unable to walk unassisted at 2 years corrected age. Examiners assessed significant movement difficulties (score &lt;= 5th centile on the Movement Assessment Battery for Children, Second Edition) and diagnoses of cerebral palsy (CP) were collected by parent report at 5 years chronological age. ResultsAt 2 years, 66 (11.9%) children had moderate/severe GMI. At 5 years, 212 (38.1%) had significant movement difficulties. Parent reports of GMI at age 2 years accurately classified CP at age 5 years in 91.0% to 93.2% of children. Classification of moderate/severe GMI at age 2 years had high specificity (96.2%; 95% confidence interval 93.6-98.0) and positive predictive value (80.3%; 68.7-89.1) for significant movement difficulties at age 5 years. However, 74.5% of children with significant movement difficulties at 5 years were not identified with moderate/severe GMI at age 2 years, resulting in low sensitivity (25.1%; 19.4-31.5). InterpretationThis questionnaire may be used to identify children born extremely preterm who at age 2 years have a diagnosis of CP or movement difficulties that are likely to have a significant impact on their functional outcomes at age 5 years

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 (€, 2016 prices) during the fifth year of life. Results Lower gestational age was associated with increased mean societal costs of €2755 (p < 0.001), €752 (p < 0.01) and €657 (p < 0.01) for children born at < 26, 26–27 and 28–29 weeks, respectively, in comparison to the reference group born at 30–31 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 €1482, €763 and €144 at < 26, 26–27 and 28–29 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. Impact - What is the key message of your article? This study provides new evidence about the magnitude and drivers of economic costs associated with preterm birth in European countries. - What does it add to the existing literature? Lower gestational age is associated with increased mean societal costs during mid-childhood with indirect costs representing a key driver of increased costs. - What is the impact? For policy makers, this study adds to sparse evidence about the main cost drivers associated with preterm birth in European countries beyond the first 2 years of life

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 (28–31 weeks’ gestation) and extremely preterm (< 28 weeks’ 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 at < 32 weeks’ 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 PedsQL™ GCS scores. A mediation analysis that applied generalised structural equation modelling explored the association between potential mediators and PedsQL™ GCS scores. Results The multi-level OLS regression (fully adjusted model) revealed that birth at < 26 weeks’ gestation, BPD status and experience of severe non-respiratory morbidity were associated with mean decrements in the total PedsQL™ 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 PedsQL™ GCS score translated into decrements of 1.73 and 17.56, respectively, at < 26 weeks’ gestation; 0.99 and 10.95, respectively, at 26–27 weeks’ gestation; and 0.34 and 4.80, respectively, at 28–29 weeks’ gestation (referent: birth at 30–31 weeks’ 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

Parents’ 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