Neurodevelopmental outcome and behavior in children treated for congenital heart disease

We examined the neuropsychological, behavioral, and emotional profile of 94 children subjected to infant cardiac surgery for CHD, 6 to 12 years postoperatively by comparing outcomes to that of a healthy age-, gender-, and socio-economic status matched control group. Parents completed behavioral checklists (Achenbach Child Behavior Checklist for Children aged 6-18) and a questionnaire regarding cognitive and emotional functioning. Preoperative, operative and postoperative hospitalization variables were retrieved from medical files to explore associations with long-term neurodevelopment. Our results confirm that survivors of cardiac surgery in infancy are more likely than the general population to display learning problems, language difficulties, inattention and reduced social skills in combination with requiring more remedial services such as special education as consequence of reported school problems. Moreover, compared to a healthy control group, CHD children are more likely to display problem behavior predominantly in the internalizing spectrum

Maternal wellbeing five years after a very preterm delivery: prevalence and influencing factors in a European cohort

(1) Background: Mothers of very preterm (VPT) infants may experience psychological symptoms compromising long-term emotional wellbeing. This study describes the emotional wellbeing of mothers of five-year-old children born VPT. We assess the association between sociodemographic, perinatal and neonatal characteristics, and the child’s health and development at five years old and maternal emotional wellbeing. (2) Methods: Data are from the prospective European “Effective Perinatal Intensive Care in Europe” (EPICE) and subsequent “Screening for Health In very Preterm infantS in Europe” (SHIPS) projects including births <32 weeks’ gestational age in 11 countries in 2011/12. Data were abstracted from obstetric and neonatal records. At five years old, 2605 mothers answered a parental questionnaire including the Mental Health Inventory-5 (MHI-5). Associations between sociodemographic and health characteristics and the mother’s MHI-5 score were investigated using multilevel multivariate linear regression analysis with the country modelled as a random effect and inverse probability weighting to correct for attrition bias. (3) Results: The mean MHI-5 score was 71.3 (SD 16.7) out of 100 (highest emotional wellbeing) with a variation among countries from 63.5 (SD 16.8; Poland) to 82.3 (SD 15.8; the Netherlands). MHI-5 scores were significantly lower for mothers whose child had a severe health problem, developmental, or speech delay, for multiparous and single mothers, and when at least one of the parents was unemployed. (4) Conclusions: The emotional wellbeing of mothers of VPT infants differs between European countries. Identifying sociodemographic characteristics and child’s health and developmental conditions that affect maternal emotional wellbeing may help to identify groups of mothers who need special assistance to cope with consequences of the delivery of a VPT child

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

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 (&lt;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 (β [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.</p

Variation in follow-up for children born very preterm in Europe

Background: Children born very preterm (&lt;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 ¼ 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 &lt;28 weeks' gestation or with birthweight &lt;1000 g: between 42.1% and 70.1%, vs. &lt;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.</p

Variation in follow-up for children born very preterm in Europe

Background: Children born very preterm (&lt;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 ¼ 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 &lt;28 weeks' gestation or with birthweight &lt;1000 g: between 42.1% and 70.1%, vs. &lt;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.</p

Maternal education and cognitive development in 15 European very-preterm birth cohorts from the RECAP Preterm platform

Background: Studies are sparse and inconclusive about the association between maternal education and cognitive development among children born very preterm (VPT). Although this association is well established in the general population, questions remain about its magnitude among children born VPT whose risks of medical and developmental complications are high. We investigated the association of maternal education with cognitive outcomes in European VPT birth cohorts. Methods: We used harmonized aggregated data from 15 population-based cohorts of children born at = 37 weeks of GA) were available in eight cohorts. Maternal education was classified as: low (primary/lower secondary); medium (upper secondary/short tertiary); high (bachelor's/higher). Pooled standardized mean differences (SMDs) in cognitive scores were estimated (reference: high educational level) for children assessed at ages 2-3, 4-7 and 8-15 years. Results: The study included 10 145 VPT children from 12 cohorts at 2-3 years, 8829 from 12 cohorts at 4-7 years and 1865 children from 6 cohorts at 8-15 years. Children whose mothers had low, compared with high, educational attainment scored lower on cognitive measures [pooled unadjusted SMDs: 2-3 years = -0.32 (95% confidence intervals: -0.43 to -0.21); 4-7 years = -0.57 (-0.67; -0.47); 8-15 years = -0.54 (-0.72; -0.37)]. Analyses by GA subgroups (= 27 weeks) in children without severe neonatal morbidity and term controls yielded similar results. Conclusions: Across diverse settings and regardless of the degree of prematurity, low maternal education was associated with lower cognition.Peer reviewe

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 weeks’ 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

Neurological and psychosocial development in adolescence

This book provides medical care givers with detailed information on those aspects of adolescence that are of significance in the setting of congenital heart disease (CHD), from anatomic and physiologic changes to behavioral issues. In addition, it explains how care should be organized in order to ensure that the needs of adolescents with CHD are fully met. Both theoretical and practical aspects of the switch from a pediatric to an adult health perspective in CHD patients are outlined in detail, drawing attention to the importance of a structured transition plan and other best practices. As the survival of children with complex CHD improves further, the number of adolescents with CHD will continue to grow. Awareness of the challenges that these patients face is essential if they are to be appropriately prepared to assume adult roles and functioning. Readers will find Congenital Heart Disease and Adolescence to be an excellent source of relevant knowledge and guidance. It has been written for a broad audience, bearing in mind that care in adolescents is an interdisciplinary task involving close collaboration among physicians, specialists, nurses, patients, and relatives