Navigating the healthcare system with my child with CHD: parental perspectives on developmental follow-up practices.

BACKGROUND: Parents of children with CHD face several barriers when trying to access the services needed to support their child's development. In fact, current developmental follow-up practices may not identify developmental challenges in a timely manner and important opportunities for interventions may be lost. This study aimed to explore the perspectives of parents of children and adolescents with CHD with respect to developmental follow-up in Canada. METHODS: Interpretive description was used as a methodological approach for this qualitative study. Parents of children aged 5-15 years with complex CHD were eligible. Semi-structured interviews that aimed to explore their perspectives regarding their child's developmental follow-up were conducted. RESULTS: Fifteen parents of children with CHD were recruited for this study. They expressed that the lack of systematic and responsive developmental follow-up services and limited access to resources to support their child's development placed an undue burden on their families, and as a result, they needed to assume new roles as case managers or advocates to address these limitations. This additional burden resulted in a high level of parental stress, which, in turn, affected the parent-child relationship and siblings. CONCLUSIONS: The limitations of the current Canadian developmental follow-up practices put undue pressure on the parents of children with complex CHD. The parents stressed the importance of implementing a universal and systematic approach to developmental follow-up to allow for the timely identification of challenges, enabling the initiation of interventions and supports and promoting more positive parent-child relationships.

Cognitive Outcomes of Children With Complex Trauma: A Systematic Review and Meta-Analyses of Longitudinal Studies.

Longitudinal studies have shown that children with complex trauma (i.e., exposure to multiple or repeated traumatic events of an interpersonal nature) have poorer cognitive outcomes later in life than children without complex trauma. This association may be moderated by the timing of the trauma, which may explain, in part, some heterogeneity in the findings reported across previous investigations. The objective of the systematic review and meta-analyses was to compare the cognitive outcomes of children with complex trauma and controls and to explore whether the timing of trauma (i.e., its onset and recency) moderated this association. Electronic databases (APA PsycNET, Pubmed Central, ERIC, CINAHL, Embase) and gray literature were systematically searched. To be included, studies had to (1) have a longitudinal design, (2) comprise children with complex trauma and controls, and (3) include a cognitive assessment. Thirteen studies were identified. Meta-analyses were conducted to compare children with complex trauma and controls, while subgroup analyses and meta-regressions explored the impact of potential moderators. Children with complex trauma had poorer overall cognitive functioning than controls, and the timing of trauma (early onset and, to a greater extent, recency of trauma) moderated this association. Thus, findings suggest that children with complex trauma are at risk of cognitive difficulties quickly after trauma exposure. As such, systematic neuropsychological assessment and interventions supporting the optimal development of cognitive functioning among children with complex trauma should be investigated to determine whether prompt interventions lead to better cognitive functioning.

Academic Challenges in Developmental Coordination Disorder: A Systematic Review and Meta-Analysis.

AIMS: Developmental Coordination Disorder (DCD) is a chronic condition affecting motor coordination in daily activities. While motor difficulties are well documented in this population, it is unclear how frequent and to what extent academic activities are affected. This systematic review aims to comprehensively summarize the knowledge regarding the prevalence and extent of academic difficulties in reading, writing and mathematics in school-aged children with DCD. METHODS: Two independent reviewers analyzed original studies on academic difficulties in school-aged children with DCD. A binary random-effects model was used to calculate the pooled prevalence by academic difficulty. A random-effects model using standardized mean differences (g statistic) was calculated to estimate the extent of the academic difficulties. RESULTS: Twenty-four studies were included. A pooled prevalence of 84% of handwriting difficulties and 89.5% of mathematical difficulties was reported. No pooled prevalence of difficulties could be calculated for the other academic outcomes. Children with DCD present with poorer performance in handwriting legibility (g = -1.312) and speed (g = -0.931), writing (g = -0.859), mathematics (g = -1.199) and reading (g = -1.193). CONCLUSIONS: This review highlights the high frequency and severity of academic difficulties in children with DCD, specifically in mathematics, which stresses the importance of evaluating academic performance to target interventions to support optimal functioning in daily life.

Identifying developmental challenges of youth with congenital heart defects: A patient-oriented perspective.

BACKGROUND: Youth with congenital heart disease (CHD) are at high risk for a range of developmental impairments that become evident at different times across childhood and adolescence. This study aimed to explore perspectives of youth with CHD with respect to their developmental follow-up across childhood. METHODS: Interpretive description was used as a methodological approach for this qualitative study. Youth aged 12-22 years with CHD requiring open-heart surgery before 2 years of age and who had received health services in Canada since birth were enrolled. RESULTS: Ten youth with CHD, two males and eight females, aged 13-22 years (mean 19.8) participated in this study. With higher social and academic demands as well as increased level of autonomy associated with older age, some youth faced new challenges that they had not encountered as children. Youth with CHD identified four aspects of the continuum of care as needing to be changed to better respond to their needs. First, the format of developmental follow-up needs to be adapted to their unique challenges. Second, resources must be more easily accessible throughout childhood and adolescence. Third, planning for transition to adult care is essential to ensure continuity of services. Finally, they identified that the school system is an essential component of the continuum of care. CONCLUSIONS: Adolescents and young adults with CHD are at high risk of developing physical, academic and psychosocial challenges; however, timely identification of challenges does not appear to be optimal across domains and transition points, from the perspective of the youth themselves. Youth with CHD reported not having the resources and supports they required to optimize their functioning. Our findings suggest that several approaches could be adopted to enhance identification and outcomes to address the limitations of current Canadian practices.

Use of IMMPACT Recommendations to Explore Pain Phenotypes in People with Knee Osteoarthritis.

OBJECTIVE: Knee osteoarthritis (OA) is a disease of multiple phenotypes of which a chronic pain phenotype (PP) is known. Previous PP studies have focused on one domain of pain and included heterogenous variables. We sought to identify multidimensional PPs using the IMMPACT recommendations and their relationship to clinical outcomes. METHODS: Participants >40 years of age with knee OA having a first-time orthopedic consultation at five university affiliated hospitals in Montreal, Quebec, and Hamilton (Canada) were recruited. Latent profile analysis was used to determine PPs (classes) using variables recommended by IMMPACT. This included pain variability, intensity and qualities, somatization, anxiodepressive symptoms, sleep, fatigue, pain catastrophizing, neuropathic pain, and quantitative sensory tests. We used MANOVA and χ2 tests to assess differences in participant characteristics across the classes and linear and Poisson regression to evaluate the association of classes to outcomes of physical performance tests, self-reported function and provincial healthcare data. RESULTS: In total, 343 participants were included (mean age 64 years, 64% female). Three classes were identified with increasing pain burden (class3 > class1), characterized by significant differences across most self-report measures and temporal summation, and differed in terms of female sex, younger age, lower optimism and pain self-efficacy. Participants in class2 and class3 had significantly worse self-reported function, stair climb and 40 m walk tests, and higher rates of healthcare usage compared to those in class1. CONCLUSIONS: Three distinct PPs guided by IMMPACT recommendations were identified, predominated by self-report measures and temporal summation. Using this standardized approach may improve PP study variability and comparison.

Cumulative childhood trauma and complex psychiatric symptoms in pregnant women and expecting men.

BACKGROUND: Women and men having been exposed to childhood trauma would be at high risk of various mental health symptoms while awaiting a child. This study aimed to evaluate the association between cumulative childhood trauma and the accumulation of symptoms belonging to different psychiatric problems in pregnant women and expecting men. METHODS: We first examined prevalence rates of childhood trauma across our samples of 2853 pregnant women and 561 expecting men from the community. Second, we evaluated the association between cumulative childhood trauma and symptom complexity (i.e., the simultaneous presentation of symptoms belonging to multiple psychiatric problems) using subsamples of 1779 pregnant women and 118 expecting men. Participants completed self-reported measures of trauma (Childhood Trauma Questionnaire) and psychiatric symptoms (PTSD Checklist for DSM-5; Kessler Psychological Distress Scale; State-Trait Anger Expression Inventory-2; Self and Interpersonal Functioning Scale). RESULTS: Trauma was more frequent in pregnant women than in expecting men and in participants reporting sociodemographic risk factors than in those not reporting any. A dose-response relationship was observed between the number of different traumas reported by pregnant women and expecting men and the complexity of their psychiatric symptoms, even when controlling for the variance explained by other risk factors. Women having been exposed to cumulative childhood trauma were 4.95 times more at risk of presenting comorbid psychiatric problems during pregnancy than non-exposed women. CONCLUSIONS: Childhood trauma is frequent in the general population of pregnant women and expecting men and is associated with symptom complexity during the antenatal period. These findings call for delivering and evaluating innovative trauma-informed antenatal programs to support mental health and adaptation to parenthood in adults having been exposed to childhood trauma.

Canadian Developmental Follow-up Practices in Children With Congenital Heart Defects: A National Environmental Scan.

Background: Developmental follow-up is central to the timely identification of delays in at-risk children. Throughout Canada, data are currently lacking on the follow-up of children with congenital heart disease (CHD) after open-heart surgery. The objective of this study was to describe current Canadian developmental follow-up practices and to explore barriers to optimal follow-up. Methods: A cross-sectional study was implemented with health professionals involved with the developmental follow-up of children with CHD in the 8 specialized hospitals that perform pediatric open-heart surgery in Canada. A questionnaire collected descriptive information about the setting and current follow-up practices. In addition, an interview was conducted to explore what would be considered optimal developmental follow-up in Canada and identify potential barriers. Results: Four of the 8 tertiary care centres had a systematic developmental follow-up program that included screening and formal evaluation. These programs were only accessible to a subset of children with CHD identified to be at higher risk. Participants described current practices as suboptimal and aimed to develop a more systematic developmental follow-up program or expand an existing one. Participants emphasized the lack of human resources, financial supports, and limited dedicated time as major barriers to offering optimal follow-up care. Conclusions: Current follow-up practices in Canada are considered suboptimal by health care specialists involved in treating children with CHD. These practices may fail to promptly identify children and adolescents with CHD who have developmental challenges. It is essential that we develop national recommendations to optimize the developmental follow-up practices in Canada for this high-risk population.

Contexte: Le suivi développemental est essentiel afin d'identifier rapidement les retards chez les enfants à risque. Il n'existe actuellement pas de données sur le suivi des enfants atteints d'une cardiopathie congénitale ayant nécessité une intervention chirurgicale à cœur ouvert. L'objectif de cette étude consistait à décrire les pratiques actuelles de suivi développemental et à explorer les obstacles à un suivi optimal au Canada. Méthodologie: Une étude transversale a été menée auprès de professionnels de la santé assurant le suivi du développement d'enfants atteints de cardiopathie congénitale dans huit hôpitaux spécialisés qui pratiquent des chirurgies à cœur ouvert au Canada. Un questionnaire a permis de recueillir des renseignements descriptifs sur les établissements et les pratiques actuelles de suivi. De plus, une entrevue a été menée pour explorer ce qui pourrait être considéré comme un suivi optimal du développement au Canada et cerner les obstacles actuels. Résultats: Quatre des huit centres de soins tertiaires disposaient d'un programme de suivi systématique du développement qui comprenait un dépistage et une évaluation formelle. Ces programmes n'étaient accessibles qu'à un sous-groupe d'enfants atteints d'une cardiopathie congénitale, identifiés comme étant à risque élevé de retard de développement. Les participants ont décrit les pratiques actuelles comme sous-optimales et souhaitaient mettre en place un programme de suivi développemental plus systématique ou à élargir un programme existant. Les participants ont souligné le manque de ressources humaines et financières ainsi que le peu de temps qui peut être consacré au suivi comme étant les principaux obstacles pour offrir un suivi optimal. Conclusions: Les professionnels de la santé œuvrant dans le traitement des enfants atteints de cardiopathie congénitale considèrent que les pratiques actuelles de suivi au Canada sont sous-optimales. Ces pratiques peuvent ne pas permettre d'identifier rapidement les enfants et les adolescents atteints de cardiopathie congénitale qui présentent des retards de développement. Il est essentiel que nous élaborions des recommandations nationales pour optimiser les pratiques de suivi développemental au Canada pour cette population à risque élevé.

Motor Impairment in Children With Congenital Heart Defects: A Systematic Review.

CONTEXT: With improvements in survival rates in newborns with congenital heart defects (CHDs), focus has now shifted toward enhancing neurodevelopmental outcomes across their life span. OBJECTIVE: To systematically review the prevalence and extent of motor difficulties in infants, children, and adolescents with CHD requiring open-heart surgery. DATA SOURCES: Data sources included Embase, Medline and the Cumulative Index to Nursing and Allied Health Literature. STUDY SELECTION: Original studies published between 1997 and 2019 examining gross and/or fine motor skills in children born with a CHD requiring open-heart surgery were selected. DATA EXTRACTION: The prevalence of motor impairments and mean scores on standardized motor assessments were extracted. Findings were grouped in 5 categories on the basis of the age of the children. RESULTS: Forty-six original studies were included in this systematic review. The prevalence of mild to severe motor impairments (scores <-1 SD below normative data or controls) across childhood ranged from 12.3% to 68.6%, and prevalence ranged from 0% to 60.0% for severe motor impairments (<-2 SDs). Although our results suggest that the overall prevalence of motor impairments <-1 SD remains rather constant across childhood and adolescence, severe motor impairments (<-2 SDs) appear to be more prevalent in younger children. LIMITATIONS: Variability in sampling and methodology between the reviewed studies is the most important limitation of this review. CONCLUSIONS: The results of this review highlight that infants with CHD have an increased risk of motor impairments across infancy, childhood, and adolescence. These findings stress the importance of systematic screening or evaluation of motor skills across childhood and adolescence in children with CHD.

Psychosocial Outcomes of Children and Adolescents With Severe Congenital Heart Defect: A Systematic Review and Meta-Analysis.

OBJECTIVE: Over the past 20 years, there has been a growing interest in the psychosocial outcomes of children and adolescents born with a congenital heart defect (CHD). This systematic review and meta-analysis aims to appraise and synthesize current literature on the psychosocial outcomes of children and adolescents with severe CHD. METHODS: A search of studies examining psychosocial outcomes in children and adolescents with severe CHD was performed. Meta-analyses were used to calculate the prevalence of psychosocial impairments and the standardized mean differences between cases and controls. Results that were not included in the meta-analysis were collated using descriptive statistics. RESULTS: A total of 16 studies were included in this review, and results were summarized according to three domains: behavior, social cognition, and self-esteem. Results from a meta-analysis identified that 25% of children and adolescents with CHD presented behavioral problems. Children and adolescents with CHD had more problematic behavior than healthy peers (standardized mean difference; g = 0.71). Young people with CHD had significantly more difficulties inferring on the mental states of others (standardized mean difference; g = 0.72). In contrast, identifying the emotions of others and self-esteem was not statistically different from healthy controls. CONCLUSION: This review and meta-analysis provides evidence to support the presence of psychosocial difficulties in children and adolescents born with a severe CHD giving grounds for the systematic assessment of behavior and social cognition during their clinical follow-up.

Structural brain abnormalities in adolescents and young adults with congenital heart defect: a systematic review.

AIM: The primary objective of this systematic review is to define and quantify brain structural abnormalities present in adolescents and young adults with complex congenital heart defect (CHD). We also aim to evaluate the extent to which these structural abnormalities are associated with functional outcomes. METHOD: A search of studies examining brain structure by magnetic resonance imaging in adolescents and young adults with complex CHD was performed in Embase, MEDLINE, and Web of Science. A meta-analysis was conducted to determine the odds of brain abnormalities in young people with CHD. Results not included in the meta-analysis were collated using descriptive statistics. RESULTS: Two hundred and fifty-four studies were identified through the literature search. Among these, 14 original studies were included in the review. The odds of brain abnormalities in young people with CHD were 7.9 times higher (p<0.001) than in typically developing comparison individuals. Focal and multifocal lesions were the most common types of abnormality (odds ratio 22.5 [p<0.001]). Preliminary evidence from volumetric, cortical, and microstructural integrity measurements suggests that brain abnormalities are associated with poorer neurocognitive outcomes. INTERPRETATION: This review provides strong evidence that adolescents and young adults with CHD are at increased risk of presenting with structural brain abnormalities and highlights the contribution of advanced quantitative magnetic resonance imaging techniques to identify the subtle but frequent brain alterations in this population. However, more studies are needed to clarify how these abnormalities relate to function. WHAT THIS PAPER ADDS: There is a high prevalence of brain abnormalities in young people with congenital heart defect (CHD). Brain volumes, cortical measurements, and white matter microstructure are altered in young people with CHD. Brain abnormalities are associated with poorer function in young people with CHD.

The Steinberg Centre for Simulation and Interactive Learning at McGill University.

Simulation allows for learner-centered health professions training by providing a safe environment to practice and make mistakes without jeopardizing patient care. It was with this goal in mind that the McGill Medical Simulation Center was officially opened on September 14, 2006, as a partnership between McGill University, the Faculty of Medicine and its affiliated hospitals. Its mandate is to provide state-of-the-art facilities to support simulation-based medical and allied health education initiatives. Since its inception, the center, recently renamed the Steinberg Center for Simulation and Interactive Learning (SCSIL), has undergone a major expansion and logged more than 130,000 learner visits. Educational activities are offered at all levels of medical and allied health care training, and include standardized patient encounters, partial task trainers, multidisciplinary courses, and high-fidelity trainers, among many others. In addition to its educational mandate, the center also supports an active research program, programs to enhance collaboration with disciplines outside of health care to spur innovation, and community outreach initiatives.

Regional cerebellar volumes predict functional outcome in children with cerebellar malformations.

The cerebellum has recently been recognized for its role in high-order functions, including cognition, language, and behavior. Recent studies have also begun to describe a functional topography of the mature cerebellum that includes organization on a mediolateral axis. However, no study to date has examined the relationship between regional cerebellar volume and developmental disabilities in children with cerebellar malformations. The objective of this study was to estimate the extent to which total and regional cerebellar volumes are associated with developmental disabilities in a cohort of children with cerebellar malformations. Children aged 1 to 6 years with a diagnosis of cerebellar malformation underwent standardized outcome measures and quantitative magnetic resonance scanning. The cerebellum was parcellated into seven mediolateral zones (three for each hemisphere plus the vermis) for regional volume analysis. In children with cerebellar malformations, decreased total cerebellar volume was associated with delays in global development, expressive language, cognition, as well as gross and fine motor function. Decreased volume in the right lateral cerebellar hemisphere was related to impaired cognition, expressive language, and gross motor function. Additionally, reduced vermis volume was associated with impaired global development, cognition, expressive language, and gross and fine motor skills, as well as behavior problems and a higher rate of positive autism spectrum screening test. These results begin to define the structural topography of functional outcome in children with cerebellar malformations and should lead to greater accuracy of prognostication as well as timely early developmental interventions.

Cerebellar malformations alter regional cerebral development.

AIM: The aim of this study was to compare total and regional cerebral volumes in children with isolated cerebellar malformations (CBMs) with those in typically developing children, and to examine the extent to which cerebellar volumetric reductions are associated with total and regional cerebral volumes. METHOD: This is a case-control study of children diagnosed with isolated CBMs. Each child was matched on age and sex to two typically developing children. Using advanced three-dimensional volumetric magnetic resonance imaging, the cerebrum was segmented into tissue classes and partitioned into eight regions. Analysis of variance was used to compare cerebral volumes between children with CBMs and control children, and linear regressions to examine the impact of cerebellar volume reduction on cerebral volumes. RESULTS: Magnetic resonance imaging was performed at a mean age of 27 months in 20 children (10 males, 10 females) with CBMs and 40 typically developing children. Children with CBMs showed significantly smaller deep grey matter nuclei (p < 0.001), subgenual white matter (p = 0.03), midtemporal white matter (p = 0.02), and inferior occipital grey matter (p = 0.03) volumes than typically developing children. Greater cerebellar volumetric reduction in children with CBMs was associated with decreased total cerebral volume and deep grey matter nuclei (p = 0.02), subgenual white/grey matter (p = 0.001), midtemporal white (p = 0.02) and grey matter (p = 0.01), and parieto-occipital grey matter (p = 0.004). INTERPRETATION: CBMs are associated with impaired regional cerebral growth, suggesting deactivation of principal cerebello-cerebral pathways.

Spectrum of neurodevelopmental disabilities in children with cerebellar malformations.

AIM: Advances in perinatal care and neuroimaging techniques have increased the detection of cerebellar malformations (CBMs) in the fetus and young infant. As a result, this has necessitated a greater understanding of the neurodevelopmental consequences of CBMs on child development. The aim of this study was to delineate the impact of CBMs on long-term neurodevelopmental outcomes. METHOD: We conducted a cross-sectional study and systematically identified children with CBMs born between December 2000 and December 2006. We then performed follow-up magnetic resonance imaging studies, neurologic examination, and standardized neurodevelopmental outcome testing (Mullen Scales of Early Learning, Vineland Adaptive Behavior Scale, Child Behavior Checklist, Modified Checklist for Autism in Toddlers, and the Pediatric Quality of Life Inventory). RESULTS: Our sample comprised 49 children (29 males, 20 females; mean age, 28.4 mo, SD 16.4) with a CBM. Infants with evidence of acquired fetal or neonatal brain injury, intracranial birth trauma, inherited metabolic disease, or major pre- or postnatal cerebral ischemia were excluded. Our findings highlight that children with CBMs experience a high prevalence of neurologic, developmental, and functional disabilities including motor, cognitive, language, and social-behavioral deficits, as well as poor quality of life. The associated supratentorial anomalies, chromosomal findings, and malformations affecting the cerebellar vermis were significant independent predictors of neurodevelopmental disabilities in young children with CBMs. The associated supratentorial anomalies and chromosomal findings were also predictive of global developmental delay (p=0.01), cognitive impairment (p=0.03), gross and fine motor delay (p=0.02 and p=0.01 respectively), and positive screening for autism spectrum disorder (p=0.01). Additionally, malformations affecting the cerebellar vermis were significant independent predictors of expressive language (p=0.04) and gross motor delays (p=0.02). INTERPRETATION: Developmental surveillance and early intervention programs should be an integral part of the long-term follow-up of survivors of CBM.

Neurodevelopmental outcomes in children with cerebellar malformations: a systematic review.

Cerebellar malformations are increasingly diagnosed in the fetal period. Consequently, their consideration requires stressful and often critical decisions from both clinicians and families. This has resulted in an emergent need to understand better the impact of these early life lesions on child development. We performed a comprehensive literature search of studies describing neurodevelopmental outcomes of cerebellar malformations between January 1997 and December 2007. Overall, the data suggested that children with isolated inferior vermis hypoplasia (IVH) and mega cisterna magna (MCM) have a good developmental outcome, whereas children with molar tooth sign/Joubert syndrome, vermis hypoplasia, pontocerebellar hypoplasia (PCH) type II, and cerebellar agenesis experience moderate to severe global developmental delays. Reports for Dandy-Walker malformation (DWM) were conflicting; however, the presence of a normally lobulated vermis and the absence of associated brain anomalies were associated with a more favourable outcome. Finally, children with isolated cerebellar hypoplasia experienced fewer impairments. Important methodological limitations highlighted include a lack of standardized outcome measure use in 79% of studies and the predominant use of retrospective study designs (85%), with 40% limited to case reports or case-series. In summary, rigorous outcome studies describing the spectrum of disabilities in survivors are urgently needed to accurately delineate the long-term neurodevelopmental consequences of cerebellar malformations.