Transition experiences of adolescents and young adults working with a patient navigator.

Introduction: The transition from pediatric to adult care poses challenges for adolescents and young adults (AYA) with chronic conditions and their caregivers. A patient navigator (PN) intervention may mitigate transition-related barriers.

Methods: A qualitative study was conducted within a pragmatic randomized controlled trial.

Math Abilities Among Children with Neurodevelopmental Difficulties: Understanding Cognitive Factors and Evaluating a Pilot Intervention.

Math development in children relies on several underlying cognitive functions, including executive functions (EF), working memory (WM), and visual-motor abilities, such as visual-motor integration (VMI). Understanding how these cognitive factors contribute to children's math performance is critical to supporting math learning and long-term math success. The present quasi-experimental waitlist control study ( = 28) aimed to (a) examine the unique contributions of EF, WM, and VMI to math abilities among children ages 5-8 years old with neurodevelopmental difficulties; (b) determine whether a math intervention (the Mathematics Interactive Learning Experience; MILE) that supports these cognitive processes was effective when modified to be delivered to small groups in a school setting, and (c) examine whether any participant characteristics, such as age or IQ, were correlated with post-intervention math score changes.

Adaptive behavior, sleep, and physical activity in adolescents with fetal alcohol spectrum disorder.

Background: Fetal alcohol spectrum disorder (FASD) is broadly associated with impairments to adaptive behavior and dysfunctional sleep. Associations between sleep, adaptive behavior, and physical activity are frequently drawn in discussions of typical development and other clinical conditions.

Aims: In this study, we sought to characterize patterns of sleep, adaptive behavior, and physical activity in adolescents with FASD.

Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities.

Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study.

Characterizing adverse childhood experiences among children and adolescents with prenatal alcohol exposure and Fetal Alcohol Spectrum Disorder.

Background: Individuals with Fetal Alcohol Spectrum Disorder (FASD) and prenatal alcohol exposure (PAE) face elevated rates of postnatal environmental adversity across the lifespan.

Objective: We explored early adversity among children and adolescents with PAE.

Participants And Setting: Our sample included 333 children and adolescents with PAE assessed at a Canadian FASD diagnostic clinic, 66% of whom were diagnosed with FASD.

Transitional Care Interventions for Youth With Disabilities: A Systematic Review.

Context: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations.

Objective: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders.

Data Sources: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched.

Current Socioeconomic Status Correlates With Brain Volumes in Healthy Children and Adolescents but Not in Children With Prenatal Alcohol Exposure.

Individuals with prenatal alcohol exposure (PAE) exhibit neurological deficits associated with brain injury including smaller brain volumes. Additional risk factors such as lower socioeconomic status (SES) may also have an impact on brain development for this population. This study examined how brain volumes are related to SES in both neurotypically developing children and adolescents, and those with PAE.

The cost-effectiveness of screening tools used in the diagnosis of fetal alcohol spectrum disorder: a modelled analysis.

Background: Fetal Alcohol Spectrum Disorder (FASD) is characterized by physical and neurological abnormalities resulting from prenatal alcohol exposure. Though diagnosis may help improve patient outcomes, the diagnostic process can be costly. Subsequently, screening children suspected of FASD prior to diagnostic testing has been suggested, to avoid administering testing to children who are unlikely to receive a diagnosis.

Pragmatic trial evaluating the effectiveness of a patient navigator to decrease emergency room utilisation in transition age youth with chronic conditions: the Transition Navigator Trial protocol.

Introduction: Transition to adult care is a challenging and complex process for youth with special healthcare needs. We aim to compare effectiveness of a patient navigator service in reducing emergency room (ER) use among adolescents with chronic health conditions transitioning to adult care.

Methods And Analysis: Pragmatic randomised controlled trial parallel group design comparing ER visit rates between patients with access to a personalised navigator intervention compared with usual care.

Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care.

Background: Transition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators.

Mathematics intervention for children with fetal alcohol spectrum disorder: A replication and extension of the math interactive learning experience (MILE) program.

Background: Individuals with fetal alcohol spectrum disorders (FASD) experience deficits in behavior, cognition, and academic functioning resulting from prenatal alcohol exposure (PAE). Although receiving intervention for developmental disabilities is a strong protective factor against negative outcomes in FASD, intervention research in this population is in its infancy.

Aims: The purpose of this study was to replicate and extend a mathematics intervention, the Math Interactive Learning Experience (MILE) program, which was developed in the USA specifically for children with FASD.

Deferred diagnosis in children assessed for fetal alcohol spectrum disorder.

Early intervention for individuals with FASD is paramount, thus exploring factors that affect the diagnostic process is critical. This process can be complicated by challenges gathering background information, accurately evaluating higher-level cognitive skills across ages, and teasing apart the impact of life adversities from the effects of prenatal alcohol exposure. This study is a retrospective file review of 154 children (44% female; mean age 8.

Preserved cortical asymmetry despite thinner cortex in children and adolescents with prenatal alcohol exposure and associated conditions.

Prenatal alcohol exposure (PAE) is associated with reduced overall brain volume. Although this has been reported consistently across studies, the status of cortical thickness after PAE is more variable. The cortex is asymmetric in typical controls, but it is unclear whether the left and right counter parts of the cortical gray matter are unevenly influenced in postpartum brain development after PAE.

Sexual dimorphism of volume reduction but not cognitive deficit in fetal alcohol spectrum disorders: A combined diffusion tensor imaging, cortical thickness and brain volume study.

Quantitative magnetic resonance imaging (MRI) has revealed abnormalities in brain volumes, cortical thickness and white matter microstructure in fetal alcohol spectrum disorders (FASD); however, no study has reported all three measures within the same cohort to assess the relative magnitude of deficits, and few studies have examined sex differences. Participants with FASD (n = 70; 30 females; 5-32 years) and healthy controls (n = 74; 35 females; 5-32 years) underwent cognitive testing and MRI to assess cortical thickness, regional brain volumes and fractional anisotropy (FA)/mean diffusivity (MD) of white matter tracts. A significant effect of group, age-by-group, or sex-by-group was found for 9/9 volumes, 7/39 cortical thickness regions, 3/9 white matter tracts, and 9/10 cognitive tests, indicating group differences that in some cases differ by age or sex.

Intervention recommendations and subsequent access to services following clinical assessment for fetal alcohol spectrum disorders.

Background: Children with fetal alcohol spectrum disorders (FASD) and prenatal alcohol exposure (PAE) experience multiple difficulties requiring various interventions. Researchers have called for investigation into service use with respect to clinically recommended interventions.

Aims: To examine intervention recommendations for children with FASD/PAE and subsequent access to these recommended interventions.

Dysregulation of the cortisol diurnal rhythm following prenatal alcohol exposure and early life adversity.

The hypothalamic-pituitary-adrenal (HPA) axis is impacted by a multitude of pre- and postnatal factors. Developmental programming of HPA axis function by prenatal alcohol exposure (PAE) has been demonstrated in animal models and in human infants, but remains understudied in older children and adolescents. Moreover, early life adversity (ELA), which occurs at higher rates in children with PAE than in non-exposed children, may also play a role in programming the stress response system.

Effects of working memory training on children born preterm.

Researchers have reported benefits of working memory training in various populations, however, the training gains in preterm population is still inadequately studied. This study aimed to investigate the transfer and lasting effects of an online working memory training program on a group of preterm children aged between 4 and 6 years (mean gestational age = 28.3 weeks; mean birth weight = 1153 grams).

Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder.

Objective: Individuals with FASD experience neurodevelopmental impairments and adverse outcomes, which can result in stress on the caregiver. However, there is little research on the needs of caregivers supporting individuals with FASD and whether they are associated with caregiver stress.

Method: 125 caregivers of individuals with FASD completed a survey with questions adapted from the Family Caregiver Survey and the Perceived Stress Scale.

Relationships between Head Circumference, Brain Volume and Cognition in Children with Prenatal Alcohol Exposure.

Head circumference is used together with other measures as a proxy for central nervous system damage in the diagnosis of fetal alcohol spectrum disorders, yet the relationship between head circumference and brain volume has not been investigated in this population. The objective of this study is to characterize the relationship between head circumference, brain volume and cognitive performance in a large sample of children with prenatal alcohol exposure (n = 144) and healthy controls (n = 145), aged 5-19 years. All participants underwent magnetic resonance imaging to yield brain volumes and head circumference, normalized to control for age and sex.

Genomic characterization of chromosome 8 pericentric trisomy.

We present a patient with trisomy 8p11.21q11.21 associated with language, gross motor, fine motor, and cognitive delay.

Anticipatory guidance for children and adolescents with Fetal Alcohol Spectrum Disorder (FASD): practice points for primary health care providers.

Background: Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term that describes the range of effects that can occur in an individual who was prenatally exposed to alcohol and includes an array of complex neurodevelopmental and physical findings.

Objectives: To give primary healthcare providers (PHCP) evidence-based recommendations for supporting and managing the symptoms of FASD after patients have received a diagnosis. MethodsPrimary health recommendations for the management of children and adolescents with FASD were developed based on expert clinical judgment and supported by evidence-based research, where appropriate.

Evaluation of the neurobehavioral screening tool in children with fetal alcohol spectrum disorders (FASD).

Background: There is a growing need for validated tools to screen children at risk of fetal alcohol spectrum disorders (FASD). The Neurobehavioral Screening Tool (NST) is one of several promising screening measures for FASD, though further evidence is needed to establish the tool's psychometric utility.

Objective: To assess the predictive accuracy of the NST among children with an FASD diagnosis, with prenatal alcohol exposure (PAE) but no FASD diagnosis, and typically developing controls.

Longitudinal MRI reveals impaired cortical thinning in children and adolescents prenatally exposed to alcohol.

Brain imaging studies suggest that cortical thickness decreases during childhood and adolescence, in concert with underlying structural and synaptic changes required for cognitive maturation and regional specialization of function. Abnormalities of this protracted developmental process may provide key insights into the cognitive and behavioral deficits that emerge in individuals with fetal alcohol spectrum disorders (FASD). Several studies have demonstrated cortical thickness differences in children and adolescents who were prenatally exposed to alcohol, though all have been cross sectional, limiting conclusions about cortical development with age.