Longer-term experiences of families of children with dextro-transposition of the great arteries: a qualitative study.

Background: Explore longer-term psychosocial adaptation to congenital heart disease among families of children with dextro-Transposition of the Great Arteries (d-TGA).

Methods: In this qualitative study, semi-structured interviews were conducted for 16 families (16 mothers, 12 fathers, 9 siblings) and analyzed using an inductive thematic approach.

Results: Key qualitative themes included parents reflecting "back then" when 1) navigating hospital and healthcare experiences, 2) challenges to psychosocial wellbeing and family functioning, and 3) coping and support needs were greatest.

Characterizing neurodevelopmental follow-up attendance of children with congenital heart disease.

Background: Characterize attendance at neurodevelopmental follow-up for congenital heart disease (CHD) from infancy to young adulthood, as well as identify individual, family, and neighborhood-level correlates of low attendance.

Methods: Primary caregivers (N = 578) of children with CHD aged 0-21 years in the United States, stratified into six age groups, reported whether their child had attended neurodevelopmental follow-up at various time points. Caregiver reports were also used to collect information on the child's clinical and family psychosocial characteristics.

Implementation Fidelity of a Smartphone Application for Population-Based General Movement Assessment: The Early Moves Study.

Objective: To describe the infant and maternal characteristics of the Early Moves cohort and to assess representativeness to the general population, and to evaluate the implementation fidelity of an application-based collection of General Movement Assessment (GMA) videos at writhing and fidgety age.

Study Design: Prospective observational study. Mothers who had recently delivered or were enrolled to deliver at maternity hospitals in Perth, Western Australia, were recruited from November 2019 to December 2023.

Brain MRI before and at term equivalent age predicts motor and cognitive outcomes in very preterm infants.

Brain Magnetic Resonance Imaging (MRI) of high-risk infants in the neonatal period (from 26 weeks postmenstrual age to Term Equivalent Age (TEA)) is increasingly being used for the detection of brain injuries, and the early prognostication of adverse outcomes such as Cerebral Palsy (CP). While most imaging is performed around TEA in clinical practice for infants born preterm (<37 weeks of gestation), this would often require families to return to hospital for imaging. In this work, we extract structural biomarkers from MRI acquired both before and at TEA in a cohort of very preterm infants from the PPREMO and PREBO studies (n = 100), to determine if either time-point, or both combined, are predictive of both Bayley Scales of Infant and Toddler Development - Third Edition (Bayley-III) and the Neuro-sensory Motor Developmental Assessment (NSMDA) at 2 years.

Visuospatial outcomes of a prospective national cohort of young adults with very low birthweight.

Background: Visuospatial processing is reportedly impaired in children born very preterm (VP) compared with full term (FT) controls but there are few data for VP adults.

Methods: At 26-30 years, 225 very low birthweight (VLBW) adults (70% national cohort survivors) and 100 FT controls were assessed on motor-dependent visuospatial skills using the Block Design subtest of the Wechsler Adult Intelligence Scale, and nonmotor-dependent skills by the Benton Judgment of Line Orientation and Brixton Spatial Anticipation tests. A composite score was created by summing standardized scores for the three tests.

Diagnostic accuracy of early neonatal MRI in predicting adverse motor outcomes in children born preterm: Systematic review and meta-analysis.

Aim: To examine the diagnostic accuracy of Early structural and diffusion-weighted magnetic resonance imaging (MRI) (acquired at < 36 weeks postmenstrual age) to detect cerebral palsy (CP) or other adverse motor outcomes at or beyond 3 years corrected age in infants born preterm.

Method: In this systematic review and meta-analysis, we searched the CINAHL, Embase, PubMed, and Web of Science databases for studies without language restrictions and a prospectively registered protocol up to October 2023. We extracted the study details, associations presented, and meta-analyses conducted with pooled sensitivity and specificity.

Diagnostic accuracy of neonatal structural MRI scores to predict 6-year motor outcomes of children born very preterm.

Aims: This study aimed to (1) evaluate associations between Early and Term structural MRI (sMRI) brain abnormality scores and adverse motor outcomes at 6-years corrected age (CA), (2) determine their diagnostic accuracy in predicting adverse motor outcomes and cerebral palsy (CP) at 6-years CA.

Methods: Infants born < 31-weeks gestational age (GA) returning for 6-year follow-up were included. Early and Term sMRI were scored using a validated method, deriving white matter, cortical grey matter, deep grey matter, cerebellar and global brain abnormality scores (GBAS).

Neurodevelopmental follow-up care pathways and processes for children with congenital heart disease in Australia.

Background: International consensus exists for neurodevelopmental follow-up care of children with congenital heart disease (CHD) to support timely intervention for developmental delays. Yet, documentation of how this care is implemented in Australia is lacking. This study aimed to identify, categorise, and understand care pathways and services supporting neurodevelopmental follow-up of Australian children with CHD.

Clinical utility and psychometric properties of tools for early detection of developmental concerns and disability in young children: A scoping review.

Aim: To explore the clinical utility and psychometric properties of standardized tools for the early detection of developmental concerns or disability in young children.

Method: Systematic reviews and clinical practice guidelines containing psychometric data on tools appropriate for use with children from birth to 5 years 11 months were searched for in MEDLINE, CINAHL, Embase, and PsycINFO for the years 2000 to 2023, with no language restrictions.

Results: Eighty-six systematic reviews and six clinical practice guidelines guided identification of tools.

"It's more than just a conversation about the heart": exploring barriers, enablers, and opportunities for improving the delivery and uptake of cardiac neurodevelopmental follow-up care.

Introduction: Surveillance, screening, and evaluation for neurodevelopmental delays is a pivotal component of post-surgical care for children with congenital heart disease (CHD). However, challenges exist in implementing such neurodevelopmental follow-up care in international practice. This study aimed to characterise key barriers, enablers, and opportunities for implementing and delivering outpatient cardiac neurodevelopmental follow-up care in Australia.

Optimizing trajectories of social adaptive competencies after extreme prematurity during the first 1000 days.

Over 75% of surviving extremely preterm infants do not have major neurodevelopmental disabilities; however, more than half face difficulties with communication, coordination, attention, learning, social, and executive function abilities. These "minor" challenges can have a negative impact on educational and social outcomes, resulting in physical, behavioral, and social health problems in adulthood. We will review assessment tools for social-emotional and adaptive functional skills in early childhood as these determine family and early childhood supports.

Meaningful Work, Career Fit, and Professional Well-Being of Pediatric Academicians in the United States.

Objective: Examine associations between time spent in academic activities perceived as meaningful and professional well-being among academic pediatrics faculty.

Methods: The sample comprised 248 full-time pediatric faculty (76% female, 81% white, non-Hispanic, 41% instructor or assistant professor) across the United States who completed an online survey in November 2019. Survey items included sociodemographic and professional characteristics, professional well-being measures (Stanford Professional Fulfillment Index; Maslach Burnout Inventory; Intention to Leave Academic Medicine), perceived meaningfulness of academic activities and assigned time to those activities.

Evaluating multidimensional facets of the maternal experience after preterm birth.

Objective: Describe self-relating (self-criticism, self-compassion) and parenting competence (satisfaction, self-efficacy) in mothers of children born preterm, and their associations with child characteristics, maternal sociodemographics at childbirth, and maternal concurrent well-being.

Study Design: The sample comprised 1926 biological mothers of 3- to18-year-old children born preterm with self-ratings on the standardized Forms of Self-Criticising/Attacking & Self-Reassuring Scale, Self-Compassion Scale, and Parenting Sense of Competence Scale.

Results: Mothers of children in early childhood reported significantly (p < 0.

Risk profiles of the preterm behavioral phenotype in children aged 3 to 18 years.

Objective: Characterize the Preterm Behavioral Phenotype in children born preterm by identifying distinct profiles based on patterns of symptomatology or severity of the risk for attention-deficit/hyperactivity disorder, autism spectrum disorder, and anxiety, and determine their associations with child sex, gestational age, and chronological age.

Methods: Sample comprised 2,406 children born preterm aged 3-18 years with primary caregiver behavioral ratings on the standardized Strengths and Weaknesses of ADHD Symptoms and Normal Behavior Scale, Social Responsiveness Scale, and Preschool Anxiety Scale or Screen for Child Anxiety and Related Emotional Disorders.

Results: Statistical fit indices of latent profile analysis supported a 3-profile model as optimal.

Associations between social adversity, caregiver psychological factors, and language outcomes in 9.5-year-old children born to women with opioid use disorder.

We describe the language ability of children at age 9.5 years who were born to women with an opioid use disorder and examine the associations between prenatal opioid exposure, sex, social adversity, caregiver psychological factors, and child language. Data were drawn from the regional prospective longitudinal Canterbury Methadone in Pregnancy study.

Implementing neurodevelopmental follow-up care for children with congenital heart disease: A scoping review with evidence mapping.

Aim: To identify and map evidence describing components of neurodevelopmental follow-up care for children with congenital heart disease (CHD).

Method: This was a scoping review of studies reporting components of neurodevelopmental follow-up programmes/pathways for children with CHD. Eligible publications were identified through database searches, citation tracking, and expert recommendations.

Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease.

Objective: This systematic review identified instruments quantitatively assessing psychosocial adaptation and outcomes in families of children with congenital heart disease (CHD) and evaluated instrument psychometrics.

Methods: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and a prospectively registered protocol, electronic databases (CINAHL, Embase, PubMed/MEDLINE, PsycINFO, and SCOPUS) were searched from inception until June 20, 2021 for peer-reviewed articles published in English, reporting quantitative data on psychosocial outcomes among parents/caregivers, siblings, or family system. Instrument characteristics and psychometrics were extracted, and adapted COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria were applied to assess instrument quality.

Smell and taste of milk during tube feeding of preterm infants: neurodevelopmental follow-up of the randomized TASTE trial, study protocol.

Background: The Taste And Smell To Enhance nutrition (TASTE) trial investigated the effects of smell and taste of milk with tube feeding compared to routine care on the growth of preterm infants. There was no difference between groups in growth (weight, head circumference, length) z-scores at discharge from the hospital. Infants in the intervention group had higher head circumference and length z-scores at 36 weeks postmenstrual age, both secondary outcomes.

Within- and between-twin comparisons of risk for childhood behavioral difficulties after preterm birth.

Background: Preterm birth and multiple gestation are independently associated with adverse neurodevelopmental outcomes. The objective of this study was to describe risks of screening positive for attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and anxiety in preterm-born twin children by zygosity (monozygotic, dizygotic) and birth order (first-born, second-born).

Methods: Caregivers of 349 preterm-born twin pairs (42% monozygotic) aged 3-18 years reported child behavioral outcomes on Strengths and Weaknesses of ADHD Symptoms and Normal Behavior; Social Responsiveness Scale, Second Edition; and Preschool Anxiety Scale or Screen for Child Anxiety and Related Emotional Disorders.

Beyond Survival: Challenges and Opportunities to Improve Neurodevelopmental Outcomes of Preterm Birth in Low- and Middle-Income Countries.

Low- and middle-income countries account for the greatest burden of preterm birth globally; however, there is limited understanding of neurodevelopmental outcomes of survivors within these resource-constrained settings. To accelerate progress, current priorities are to generate more high-quality data; engage with diverse local stakeholders including families of infants born preterm to identify neurodevelopmental outcomes meaningful to them within their contexts; and develop sustainable, scalable, high-quality models of neonatal follow-up, codesigned with local stakeholders, addressing the unique needs of low- and middle-income countries. Advocacy is critical to recognize optimal neurodevelopment as an "outcome of priority" along with the reduction in mortality.

andomised to early neuroprotection and neurorehabilitation: protocol for a follow-up study of participants from four randomised clinical trials.

Introduction: School readiness includes cognitive, socio-emotional, language and physical growth and development domains which share strong associations with life-course opportunities. Children with cerebral palsy (CP) are at increased risk of poor school readiness compared with their typically developing peers. Recently, earlier diagnosis of CP has allowed interventions to commence sooner, harnessing neuroplasticity.

Early brain morphometrics from neonatal MRI predict motor and cognitive outcomes at 2-years corrected age in very preterm infants.

Infants born very preterm face a range of neurodevelopmental challenges in cognitive, language, behavioural and/or motor domains. Early accurate identification of those at risk of adverse neurodevelopmental outcomes, through clinical assessment and Magnetic Resonance Imaging (MRI), enables prognostication of outcomes and the initiation of targeted early interventions. This study utilises a prospective cohort of 181 infants born <31 weeks gestation, who had 3T MRIs acquired at 29-35 weeks postmenstrual age and a comprehensive neurodevelopmental evaluation at 2 years corrected age (CA).