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Preterm infants are at risk for adverse neurodevelopmental outcomes, especially language delay. Preterm infants < 29 weeks’ gestational age, cared for in Canadian Neonatal Follow-Up Network affiliated hospitals, were assessed between 18 to 21 months corrected age using the Bayley-III. Bayley-III Language Composite Scores were compared using univariate and multivariate analyses for children in three primary language groups: English, French and other. 6146 children were included. The primary language at home was English, French or another language for 3708 children (60%), 1312 children (21%) and 1126 children (18%), respectively, and overall, 44% were exposed to two or more languages at home. Univariate analysis showed that primary language was associated with lower Bayley-III Language scores; however, multivariate analyses demonstrated that neither primary language nor language of administration were significantly associated with lower language scores when adjusted for gestational age, other developmental delays and sociodemographic factors, but multiple language exposure was. Sociodemographic and other factors are more important in determining language development than primary language at home. Further studies are needed to examine the association between exposure to multiple languages and lower Bayley-III language scores in preterm infants.

Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs of NICU parents regarding topics they would have wished to discuss prenatally and developed the content of a prenatal support workshop. A standardized survey prospectively evaluated the perspectives of pregnant women admitted to a high-risk pregnancy unit who participated in the resulting workshops. Results: During needs assessment, 295 parents invoked themes they would have wished to discuss antenatally: parental guilt, future parental role, normalizing their experience/emotions, coping with many losses, adapting to their new reality, control and trust, information about the NICU, technology around the baby, common neonatal interventions, the NICU clinical team, and the role of parents in the team. These findings were used to develop the workshop, including a moderator checklist and a visual presentation. Practical aspects of the meetings were tested/finalized during a pre-pilot phase. Among 21 pregnant women who answered the survey (average gestational age 29.3 weeks), all agreed that the workshop was useful, that it made them feel less lonely (95%), that exchanges with other women were beneficial (95%) and gave them a certain amount of control over their situation (89%). All answers to open-ended questions were positive. Conclusion: Prenatal educational/support workshops provide a unique and useful means to support future NICU parents. Future investigations will explore whether these prenatal interventions improve clinical outcomes. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to explore how young adults thought that being born preterm had affected their lives. Methods: Adult participants of a research cohort were questioned about their perspectives. Answers were analysed using mixed methods. Results: Forty‐five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self‐centred answers, invoking two main themes: being stronger/'a fighter'/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child‐centred or healthcare system‐centred themes, 19% with neutral themes; 35% also heard negative parent‐centred themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures. Conclusion: Participants evaluated their health in a balanced fashion. Preterm‐born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems. [ABSTRACT FROM AUTHOR]

Neurodevelopmental challenges in children born very preterm are common and not improving. This study tested the feasibility of using Evidence-based Practice to Improve Quality (EPIQ), a proven quality improvement technique that incorporates scientific evidence to target improving language abilities in very preterm populations in 10 Canadian neonatal follow-up programs. Feasibility was defined as at least 70% of sites completing four intervention cycles and 75% of cycles meeting targeted aims. Systematic reviews were reviewed and performed, an online quality improvement educational tool was developed, multidisciplinary teams that included parents were created and trained, and sites provided virtual support to implement and audit locally at least four intervention cycles of approximately 6 months in duration. Eight of ten sites implemented at least four intervention cycles. Of the 48 cycles completed, audits showed 41 (85%) met their aim. Though COVID-19 was a barrier, parent involvement, champions, and institutional support facilitated success. EPIQ is a feasible quality improvement methodology to implement family-integrated evidence-informed interventions to support language interventions in neonatal follow-up programs. Further studies are required to identify potential benefits of service outcomes, patients, and families and to evaluate sustainability. [ABSTRACT FROM AUTHOR]

Aim: To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm. Methods: Over 1‐year, all parents of children aged 18 months–7‐years born <29 weeks' GA were asked regarding their perspectives. The proportion of parents who described PIO and the themes they invoked were examined. Results were analysed using mixed methods. Results: Among parental responses (n = 285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalisation and/or long‐term respiratory health. Some themes had an impact primarily on the child (e.g. exercise limitation), while the majority had an impact on the whole family (e.g. hospital readmissions). None mentioned oxygen at 36 weeks nor bronchopulmonary dysplasia (BPD). The proportion of responses invoking PIO were statistically similar between parents of children with and without BPD, born before or after 25 weeks or with birthweight < or ≥750 g. PIO were more likely to be mentioned in males and among those readmitted for respiratory problems. Conclusion: Parents describe many PIO, most related to the functional impact of lung disease on their child (and family), rather than the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials nor collected in neonatal databases. [ABSTRACT FROM AUTHOR]

Children born very preterm are at risk of severe neurodevelopmental impairment, a composite endpoint that includes cerebral palsy, developmental delay, and hearing and visual impairment defined by medical professionals. We aimed to describe preterm birth stakeholders' perspectives on this classification. Ten clinical scenarios describing 18-month-old children with different components of severe neurodevelopmental impairment and one scenario of a typically developing child (control) were distributed to parents and stakeholders using a snowball sampling technique. For each scenario, participants rated health on a scale from 0 to 10 and whether the scenario represented a severe condition. Results were analyzed descriptively and mean differences from the control scenario were compared using a linear mixed-effects model. Stakeholders (number = 827) completed 4553 scenarios. Median health scores for each scenario varied from 6 to 10. The rating for the cerebral palsy and language delay scenario was significantly lower (mean difference −4.3; 95% confidence interval: −4.4, −4.1) than the control. The proportion of respondents rating a scenario as "severe" ranged from 5% for cognitive delay to 55% for cerebral palsy and language delay. Most participants disagreed with the rating used in research to describe severe neurodevelopmental impairment in preterm children. The term should be redefined to align with stakeholder perceptions. [ABSTRACT FROM AUTHOR]

Rationale: Children born prematurely, particularly those with bronchopulmonary dysplasia, have persisting lung abnormalities requiring longitudinal monitoring. Pulmonary ultrashort echo time magnetic resonance imaging (MRI) measurements may provide sensitive markers of persisting lung abnormalities and have not been evaluated in school-aged children born prematurely. Objectives: To compare pulmonary MRI and pulmonary function test measurements in preterm-born school-aged children with and without bronchopulmonary dysplasia. Methods: Children aged 7-9 years, born extremely preterm, with and without bronchopulmonary dysplasia, were recruited from three centers. Participants underwent pulmonary ultrashort echo time MRI and pulmonary function tests. Primary outcomes included total proton density and proton density at full expiration, measured using MRI. Multiple linear regression analysis was performed, adjusting for gestational age and bronchopulmonary dysplasia. Associations between MRI and pulmonary function were tested. Results: Thirty-five children were included in the primary analysis (24 with bronchopulmonary dysplasia, 11 without); 29 completed pulmonary function tests, of whom 11 (38%) had airflow limitation. Children with bronchopulmonary dysplasia had 44% (95% confidence interval [CI], 10-66%) lower mean total proton density (mean ± standard deviation, 3.6 ± 2.6) than those without (6.1 ± 4.0). Those with bronchopulmonary dysplasia had 25% (95% CI, 3-42%) lower proton density at full expiration than those without. Lower total proton density and proton density at full expiration were moderately correlated with greater residual volume, residual volume/total lung capacity, and lung clearance index (Spearman correlations for total proton density: -0.42, -0.57, and -0.53, respectively. Spearman correlations for proton density at full expiration: -0.28, -0.57, and -0.45, respectively). Conclusions: School-aged preterm-born children with bronchopulmonary dysplasia have parenchymal tissue abnormalities measured using ultrashort MRI proton density, compared with those without. MRI proton density correlated with pulmonary function measures indicative of gas trapping. Clinical trial registered with www.clinicaltrials.gov (NCT02921308). [ABSTRACT FROM AUTHOR]

Aim: This study assessed the self-reported health perception and use of health care by adults born very preterm before 30 weeks of gestation.Methods: The participants were part of a cross-sectional observational study that assessed the global health of young adults aged 18-29 years born very preterm in Quebec, Canada. Health perception was explored from 2011 to 2016 using the second Short-Form 36 Health Survey (SF-36v2), and objective health measures were obtained. Further in-depth open-ended questions were asked in 2018.Results: The 101 preterm subjects had similar perceptions of their health to 105 term-born controls, according to the SF-36v2, despite significantly more adverse health conditions. Their healthcare use was similar. However, the later in-depth questionnaire showed that 23% of 45 preterm subjects and 3% of 34 term-born subjects perceived their health as poorer than the general population. Major factors that could improve their respective health were lifestyle habits (74% vs. 81%) and eliminating specific adverse symptoms (52% vs. 27%). Only 10% of preterm individuals had been asked about their perinatal history by physicians.Conclusion: Adults born very preterm said their health was poorer than the general population and identified specific factors that should be addressed during routine health monitoring. [ABSTRACT FROM AUTHOR]

Despite medical advances, prematurity is associated with a higher risk of neurodevelopmental problems. Although social impairments are commonly reported in preterm children, their origins are not clearly determined though they may be associated with the integrity of social cognitive skills, such as theory of mind. This study aimed to assess social cognitive, social adaptive, and social behavior functioning in children born extremely prematurely. Thirty children born between 22 and 28 weeks of gestation and 30 children born at term completed measures of social cognition (theory of mind, affect recognition) between 4:6, 5:11 years of age (mean = 5.29, standard deviation = 0.28 years). Parents completed questionnaires measuring their child's adaptive social functioning and social behavior. Analyses of covariance controlling for cognitive, attentional, executive, sociodemographic, and perinatal characteristics were performed. Children born between 22 and 28 weeks displayed poorer theory of mind (p < 0.01) and affect recognition (p < 0.01) than term controls, and their parents reported lower adaptive social functioning (p < 0.01) and prosocial behavior (p = 0.04). Social cognitive, adaptive, and behavior functioning appear to be affected by extreme preterm birth. These findings may explain the social challenges experienced by extremely preterm children and provide potential loci for targeted interventions to optimize social functioning. [ABSTRACT FROM AUTHOR]

The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person's characteristics, preferences, and values. [ABSTRACT FROM AUTHOR]

Neonatal follow-up studies traditionally report on long-term neurodevelopmental outcomes as a metric of success of neonatal intensive care. Research endpoints are also typically deficit-based, assessing whether disabilities, such as cerebral palsy, cognitive impairment, deafness or blindness, are present or not. These historical approaches have resulted in neonatal follow-up programs that narrowly focus on the early identification of neurodevelopmental problems, possibly to the detriment of other outcomes that matter to parents. This focus on neurodevelopmental disability may also contribute to the negative stereotypes associated with extreme preterm birth. In this article, we discuss parental perspectives regarding important long-term outcomes. We examine limitations with current definitions of outcomes and propose a strength-based approach to generate meaningful findings both for clinicians and families. [ABSTRACT FROM AUTHOR]