Developing a Chatbot to Support Individuals With Neurodevelopmental Disorders: Tutorial.

Families of individuals with neurodevelopmental disabilities or differences (NDDs) often struggle to find reliable health information on the web. NDDs encompass various conditions affecting up to 14% of children in high-income countries, and most individuals present with complex phenotypes and related conditions. It is challenging for their families to develop literacy solely by searching information on the internet. While in-person coaching can enhance care, it is only available to a minority of those with NDDs. Chatbots, or computer programs that simulate conversation, have emerged in the commercial sector as useful tools for answering questions, but their use in health care remains limited. To address this challenge, the researchers developed a chatbot named CAMI (Coaching Assistant for Medical/Health Information) that can provide information about trusted resources covering core knowledge and services relevant to families of individuals with NDDs. The chatbot was developed, in collaboration with individuals with lived experience, to provide information about trusted resources covering core knowledge and services that may be of interest. The developers used the Django framework (Django Software Foundation) for the development and used a knowledge graph to depict the key entities in NDDs and their relationships to allow the chatbot to suggest web resources that may be related to the user queries. To identify NDD domain-specific entities from user input, a combination of standard sources (the Unified Medical Language System) and other entities were used which were identified by health professionals as well as collaborators. Although most entities were identified in the text, some were not captured in the system and therefore went undetected. Nonetheless, the chatbot was able to provide resources addressing most user queries related to NDDs. The researchers found that enriching the vocabulary with synonyms and lay language terms for specific subdomains enhanced entity detection. By using a data set of numerous individuals with NDDs, the researchers developed a knowledge graph that established meaningful connections between entities, allowing the chatbot to present related symptoms, diagnoses, and resources. To the researchers' knowledge, CAMI is the first chatbot to provide resources related to NDDs. Our work highlighted the importance of engaging end users to supplement standard generic ontologies to named entities for language recognition. It also demonstrates that complex medical and health-related information can be integrated using knowledge graphs and leveraging existing large datasets. This has multiple implications: generalizability to other health domains as well as reducing the need for experts and optimizing their input while keeping health care professionals in the loop. The researchers' work also shows how health and computer science domains need to collaborate to achieve the granularity needed to make chatbots truly useful and impactful.

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.

Psychological Well-Being, Everyday Functioning, and Autonomy In Emerging Adults with a Congenital Heart Defect.

OBJECTIVE: To characterize the psychological well-being, everyday functioning, and autonomy of emerging adults with congenital heart disease (CHD) and explore how they relate to the executive function (EF) deficits commonly observed in this population. STUDY DESIGN: Questionnaires assessing psychological well-being (encompassing psychosocial functioning and resilience), EF, and age-appropriate indicators of everyday function and autonomy (eg, housing, education, employment, relationship status) were completed by participants with CHD (16-26 years) who underwent open-heart surgery during infancy and age- and sex-matched controls. RESULTS: A total of 58 emerging adults with CHD and 57 controls participated in this study. Mean scores on the resilience and psychosocial functioning questionnaires were not significantly different between CHD and control participants. Emerging adults with CHD also did not differ from controls in terms of holding a driver's license, involvement in a romantic relationship, or current employment status. Multiple linear regression identified that better EF was associated with better psychological well-being. CONCLUSIONS: This study supports the need for systematic screening for EF deficits during adolescence and early adulthood to promote optimal well-being in this population. Further research is required to continue to document the everyday experiences of adolescents and young adults with CHD to identify protective factors associated with a successful and satisfying transition to adult life.

Application of the child community health inclusion index for measuring health inclusion of children with disabilities in the community: a feasibility study.

BACKGROUND: Participation in the community is a fundamental human right for children with disabilities and is a key component of their health and development. Inclusive communities can enable children with disabilities to participate fully and effectively. The Child Community Health Inclusion Index (CHILD-CHII) is a comprehensive assessment tool developed to examine the extent to which community environments foster healthy, active living for children with disabilities. OBJECTIVES: To assess the feasibility of applying the CHILD-CHII measurement tool across different community settings. METHODS: Participants recruited through maximal representation, and purposeful sampling from four community sectors (Health, Education, Public Spaces, Community Organizations) applied the tool on their affiliated community facility. Feasibility was examined by assessing length, difficulty, clarity, and value for measuring inclusion; each rated on a 5-point Likert scale. Participants provided comments for each indicator through the questionnaire and a follow-up interview. RESULTS: Of the 12 participants, 92% indicated that the tool was 'long' or 'much too long'; 66% indicated that the tool was clear; 58% indicated that the tool was 'valuable' or 'very valuable'. No clear consensus was obtained for the level of difficulty. Participants provided comments for each indicator. CONCLUSION: Although the length of the tool was regarded as long, it was seen to be comprehensive and valuable for stakeholders in addressing the inclusion of children with disabilities in the community. The perceived value and the evaluators' knowledge, familiarity, and access to information can facilitate use of the CHILD-CHII. Further refinement and psychometric testing will be conducted.

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.

Content development of the Child Community Health Inclusion Index: An evaluation tool for measuring inclusion of children with disabilities in the community.

BACKGROUND: Addressing barriers in the environment can contribute to health and quality of life for children with disabilities and their families. The Community Health Inclusion Index (CHII) is a measurement tool developed in the United States to identify environmental barriers and facilitators to community health inclusion. The CHII adopts an adult viewpoint and aspects crucial for children may have been omitted. AIMS: This study aimed to develop a comprehensive list of items that are relevant for the community inclusion of children with disabilities in the Canadian context. METHODS: The relevance and priority of items generated from a review of existing guidelines and best practice recommendations for community inclusion were rated as a dichotomous response and discussed by an expert panel in relevant fields related to children with disabilities. RESULTS: A total of 189 items from 12 instruments and best practice guidelines were identified. Expert consensus contributed to a relevant and comprehensive list of items. Expert suggestions were considered to refine and reduce the item list. CONCLUSION: This study highlights the importance of a child version of a community inclusion tool, as the needs of children with disabilities differ from those of adults. It can help communities improve inclusion of children with disabilities and inform health promotion initiatives for this population.

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.

Telerehabilitation for Children and Youth with Developmental Disabilities and Their Families: A Systematic Review.

AIM: To determine the level of evidence for the effectiveness of telerehabilitation against comparison interventions in improving child- and parent-related outcomes in children and youth with developmental disabilities. METHOD: A systematic approach, comprised of a comprehensive search; transparent study selection, data extraction, quality assessment by independent reviewers; and synthesis of sufficiently similar data (per diagnostic group, health profession, and overall level of evidence for each outcome) was undertaken. RESULTS: Fifty-five studies (29 randomized trials) were included across six diagnostic groups and ten health professions. Common telerehabilitation targets varied across diagnostic groups and included motor function, behavior, language, and parental self-efficacy. Telerehabilitation was found to be either more effective or as effective versus comparison intervention in improving 46.9% or 53.1% of outcomes, respectively. It was never found to be detrimental or less effective. Strong to moderate, limited, and insufficient levels of evidence were found for 36.5%, 24.5%, and 38.6% of the outcomes, respectively. CONCLUSION: There is sufficient evidence suggesting that telerehabilitation is a promising alternative when face-to-face care is limited. It is comparable to usual care and is more effective than no treatment. Blending in-person and telerehabilitation approaches could be beneficial for the post-pandemic future of rehabilitation in pediatric care.

Study protocol for Attachment & Child Health (ATTACHTM) program: promoting vulnerable Children's health at scale.

BACKGROUND: Children's exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions that focus on promoting parental reflective function (RF), i.e., parents' capacity for insight into their child's and their own thoughts, feelings, and mental states, may understand help reduce societal health inequities stemming from childhood stress exposures. The Attachment and Child Health (ATTACHTM) program has been implemented and tested in seven rapid-cycling pilot studies (n = 64) and found to significantly improve parents' RF in the domains of attachment, parenting quality, immune function, and children's cognitive and motor development. The purpose of the study is to conduct an effectiveness-implementation hybrid (EIH) Type II study of ATTACHTM to assess its impacts in naturalistic, real-world settings delivered by community agencies rather than researchers under more controlled conditions. METHODS: The study is comprised of a quantitative pre/post-test quasi-experimental evaluation of the ATTACHTM program, and a qualitative examination of implementation feasibility using thematic analysis via Normalization Process Theory (NPT). We will work with 100 families and their children (birth to 36-months-old). Study outcomes include: the Parent Child Interaction Teaching Scale to assess parent-child interaction; the Parental Reflective Function and Reflective Function Questionnaires to assess RF; and the Ages and Stages Questionnaire - 3rd edition to examine child development, all administered pre-, post-, and 3-month-delayed post-assessment. Blood samples will be collected pre- and post- assessment to assess immune biomarkers. Further, we will conduct one-on-one interviews with study participants, health and social service providers, and administrators (total n = 60) from each collaborating agency, using NPT to explore perceptions and experiences of intervention uptake, the fidelity assessment tool and e-learning training as well as the benefits, barriers, and challenges to ATTACHTM implementation. DISCUSSION: The proposed study will assess effectiveness and implementation to help understand the delivery of ATTACHTM in community agencies. TRIAL REGISTRATION: Name of registry: https://clinicaltrials.gov/. REGISTRATION NUMBER: NCT04853888 . Date of registration: April 22, 2021.

The Effect of Context-Based Interventions at the Systems-Level on Participation of Children with Disabilities: A Systematic Review.

AIMS: To synthesize evidence on the impact of context-based interventions on the participation of children with disabilities in the community. METHODS: A systematic review was conducted using the American Academy for Cerebral Palsy and Developmental Medicine Guidelines for systematic reviews. Seven databases were searched; articles included were on children with developmental disabilities under the age of 19 years, describing systems-level, context-based interventions aimed to improve participation and Participation-related outcomes of the Family of Participation-related Constructs framework. Intervention characteristics were coded using the Community Wellbeing Framework (CWF). RESULTS: Eleven articles were included for knowledge synthesis. Four studies were level I, II, and III based on the Center for Evidence-Based Medicine hierarchy. All four showed that context-based interventions had a positive effect on participation and participation-related outcomes. All 11 studies had intervention properties that were coded to at least one domain on the CWF. CONCLUSION: There is a scarcity of high-quality studies that focus on context-based interventions at the systems-level, as opposed to the individual-level. Albeit low-level quality, existing evidence emphasized the importance of using known facilitators to participation, such as staff training, peer mentorship, awareness-raising, and development of partnerships to change the system and promote participation.

Participación de los pacientes en una intervención de coaching en línea para padres de niños con retraso en el desarrollo.

OBJETIVO: Evaluar los procesos de participación de los pacientes en el desarrollo de una nueva intervención de coaching de salud para padres de niños con problemas de desarrollo emergentes. MÉTODO: Se utilizó un diseño de estudio transversal de método mixto. Los investigadores (n=18) y los padres-asesores (n=9) fueron encuestados utilizando la Herramienta de Evaluación del Compromiso Público y del Paciente (PPEET) en áreas de comunicación/apoyos para la participación, compartiendo puntos de vista/perspectivas, impactos/influencia de la iniciativa de compromiso, y pensamientos finales/satisfacción. Se utilizaron estadísticas descriptivas y resúmenes temáticos para analizar los datos. RESULTADOS: Para ambos grupos de estudio, en las cuatro secciones de la PPEET se observó un alto grado de acuerdo, con respuestas que variaban en gran medida entre 'estoy de acuerdo' y 'estoy muy de acuerdo'. Los informes cualitativos reflejaban que la participación de los pacientes era importante, significativa y tenía un impacto significativo en la calidad del proyecto y en el desarrollo profesional de los investigadores en su comprensión y uso de la metodología orientada al paciente. Los padres-asesores señalaron los problemas relacionados con la fijación de plazos realistas para proporcionar la retroalimentación y la falta de una representación más amplia entre los miembros. INTERPRETACIÓN: Se destacaron los beneficios y desafíos de aplicar estrategias orientadas al paciente a un ensayo multicéntrico. Estos se utilizarán para mejorar nuestros procesos de participación.

Patient engagement in an online coaching intervention for parents of children with suspected developmental delays.

AIM: To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays. METHOD: A cross-sectional mixed-method study design was used. Researchers (n=18) and patient-partners (n=9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic-based approach were used to analyse the data. RESULTS: For both study groups, high agreement, with responses largely ranging between 'agree' to 'strongly agree', was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient-oriented methodology. Patient-partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members. INTERPRETATION: The benefits and challenges of applying patient-oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes.

Complementary and Alternative Therapy Use in Children with Cerebral Palsy.

OBJECTIVE: To describe complementary and alternative medicine (CAM) use amongst children with cerebral palsy (CP) in Canada and to identify factors associated with CAM use. METHODS: We conducted a cross-sectional study, utilising data from the Canadian CP Registry. We explored the association between CAM use and regional, socioeconomic and CP phenotypic variables, and parental perception of the family-centredness of clinical care using the Measures of Process of Care-56 (MPOC-56). Chi-square analyses were performed, and odds ratios (OR) and 95% confidence intervals (CI) were obtained. Mann-Whitney U tests were used to compare MPOC-56 scores between CAM users and non-CAM users. RESULTS: The study sample consisted of 313 families of which 27% reported CAM use in the past year. Children with CP using CAM were more likely to reside in Western Canada (OR 3.3, 95% CI 1.6-6.7), live in a two-parent household (OR 3.5, 95% CI 1.5-8.4), have an ataxic/hypotonic or dyskinetic CP subtype (OR 3.0, 95% CI 1.5-6.1) and have a greater motor impairment (OR 2.8, 95% CI 1.7-4.9). MPOC-56 subscale scores were not significantly associated with CAM use. CONCLUSION: Physicians need to be aware of existing CAM therapies, the level of evidence supporting their efficacy (beneficence), their associated risks of adverse events (non-maleficence) and enable fair access to care that may be of benefit to each child.

Quantification of apparent axon density and orientation dispersion in the white matter of youth born with congenital heart disease.

BACKGROUND: White matter alterations have previously been demonstrated in adolescents born with congenital heart disease (CHD) using diffusion tensor imaging (DTI). However, due to the non-specific nature of DTI metrics, it is difficult to interpret these findings in terms of their microstructural implications. This study investigated the use of neurite orientation dispersion and density imaging (NODDI), which involves the acquisition of advanced multiple b-value data over two shells and provides proxy measures of apparent axon density and orientation dispersion within white matter, as a complement to classic DTI measures. STUDY DESIGN: Youth aged 16 to 24 years born with complex CHD and healthy peers underwent brain magnetic resonance imaging. White matter tract volumes and tract-average values of DTI and NODDI metrics were compared between groups. Tract-average DTI and NODDI results were spatially confirmed using tract-based spatial statistics. RESULTS: There were widespread regions of lower tract-average neurite density index (NDI) in the CHD group as compared to the control group, particularly within long association tracts and in regions of the corpus callosum, accompanied by smaller white matter tract volumes and isolated clusters of lower fractional anisotropy (FA). There were no significant differences in orientation dispersion index (ODI) between groups. CONCLUSION: Lower apparent density of axonal packing, but not altered axonal orientation, is a key microstructural factor in the white matter abnormalities observed in youth born with CHD. These impairments in axonal packing may be an enduring consequence of early life brain injury and dysmaturation and may explain some of the long-term neuropsychological difficulties experienced by this at-risk group.

Current Referral Practices for Diagnosis and Intervention for Children with Cerebral Palsy: A National Environmental Scan.

OBJECTIVES: To describe current physician referral practices with respect to age at referral to medical specialists for initial diagnosis of cerebral palsy (CP) and rehabilitation specialists for intervention and to identify factors associated with delayed referral. STUDY DESIGN: National environmental scan of 455 children diagnosed with CP who were born in Canada between 2008 and 2011, selected from 4 sites within the Canadian CP Registry (Edmonton, Calgary, Toronto, and Montreal). Two sources of information were used-children's medical charts and the population-based registry, which provided corresponding data for each child. Primary outcomes extracted from the charts were age at referral for diagnostic assessment, age at diagnosis, age at referral for rehabilitation services, and age at initial rehabilitation intervention. Twelve variables were explored as potential predictors. Descriptive statistics, bivariate analyses, and multiple linear regressions were conducted. RESULTS: Median age (in months) at referral for diagnostic assessment was 8 (mean: 12.7 ± 14.3), diagnosis 16 (mean: 18.9 ± 12.8), referral for rehabilitation services 10 (mean: 13.4 ± 13.5), and rehabilitation initiation 12 (mean: 15.9 ± 12.9). Lower maternal education, mild severity of motor dysfunction, type of CP, early discharge after birth, and region of residence explained between 20% and 32% of the variance in age at referral for assessment, diagnosis, referral for rehabilitation, and rehabilitation initiation. CONCLUSIONS: Findings suggest wide variability exists in the age at which young children with CP are referred to specialists for diagnosis and intervention. User-friendly tools are therefore needed to enhance early detection and referral strategies by primary care practitioners, to ensure early interventions to optimize developmental outcomes and enhance opportunities for neural repair at a younger age.

Participation in leisure activities in adolescents with congenital heart defects.

AIM: To describe leisure participation in adolescents with congenital heart defects (CHD) and identify factors associated with intensity of participation. METHOD: Eighty adolescents with CHD were recruited (39 males, 41 females; mean age [SD] 15y 8mo [1y 8mo] range 11y 5mo-19y 11mo) of whom 78 completed the Children's Assessment of Participation and Enjoyment (CAPE) outcome measure of leisure participation. The measure has five subscales: recreational, active-physical, social, skill-based, and self-improvement. Associations between the CAPE and age, sex, and development were examined. Motor ability (Movement Assessment Battery for Children, Second Edition), cognition (Leiter International Performance Scale-Revised), behavior (Strengths and Difficulties Questionnaire), and motivation (Dimensions of Mastery Questionnaire) were assessed. RESULTS: Participants exhibited impaired motor (43.5%), behavioral (23.7%), and cognitive (29.9%) development. The most intense participation was in social (mean [SD] 3.3 [0.99]) and recreational (2.9 [0.80]) activity types on the CAPE. Male sex (p<0.05) and younger age were associated with greater physical activity (<15y: 1.87; ≥15y: 1.31, p<0.05). Greater engagement in social activities was related to better cognition (r=0.28, p<0.05), higher motor function (r=0.30-0.36, p<0.01), and fewer behavioral difficulties (r=-0.32 to -0.47, p<0.01). Cognitive ability (r=0.27, p<0.05), dexterity and aiming/catching (r=0.27-0.33, p<0.05), and behavior problems (r=0.38-0.49, p=0.001) were correlated with physical activity participation. Persistence in tasks, an aspect of motivation, correlated with physical (r=0.45, p<0.001) and social activity involvement (r=0.28, p<0.05). INTERPRETATION: Ongoing developmental impairments in adolescents with CHD are associated with decreased active-physical and social engagement, putting them at risk of poor physical and mental health. Health promotion strategies should be considered. WHAT THIS PAPER ADDS: Adolescents with congenital heart defects (CHD) have limited engagement in active-physical leisure activities. Cognitive, motor, and behavioral impairments are associated with decreased participation in leisure in children with CHD. Female sex and older age are associated with less engagement in leisure. Mastery motivation correlates with participation, suggesting an avenue for intervention.

Participación en actividades recreativas en adolescentes con cardiopatías congénitas OBJETIVO: Describir la participación en el tiempo libre en adolescentes con defectos cardíacos congénitos (CHD) e identificar los factores asociados con la intensidad de la participación. MÉTODO: Ochenta adolescentes con CHD fueron reclutados (39 varones, 41 mujeres; edad media [DE] 15 años 8 meses [1 año 8 meses] rango 11 año 5 meses- 19 año 11 meses) de los cuales 78 completaron la medida de resultado de la Evaluación de la Participación y el Disfrute de los Niños (Children's Assessment of Participation and Enjoyment [CAPE]) del ocio participación. La medida tiene cinco subescalas: recreación, actividad física, social, basada en habilidades y mejoría personal. Se examinaron las asociaciones entre el CAPE y la edad, el sexo y el desarrollo. Se evaluó la capacidad motora con la Batería de Evaluación de Movimiento para Niños (Movement Assessment Battery for Children, Segunda edición), la cognición (Leiter International Performance Scale-Revised), el comportamiento con el Cuestionario de Fortalezas y Dificultades (Strengths and Difficulties Questionnaire) y la motivación usando el cuestionario Dimensiones del Dominio (Dimensions of Mastery Questionnaire). RESULTADOS: Los participantes exhibieron problemas en el desarrollo motor (43.5%), conducta (23.7%) y en el desarrollo cognitivo (29.9%). La participación más intensa fue en los tipos de actividad social (media [DE] 3.3 [0.99]) y recreativa (2.9 [0.80]) en el CAPE. El sexo masculino (p <0.05) y la edad más joven se asociaron con una mayor actividad física (<15 años: 1.87; ≥15 años: 1.31, p <0.05). Una mayor participación en actividades sociales se relacionó con una mejor cognición (r = 0.28, p <0.05), una función motora más alta (r = 0.30-0.36, p <0.01) y menos dificultades en el comportamiento (r = -0.32 a -0.47, p < 0,01). La capacidad cognitiva (r = 0.27, p <0.05), la destreza manual y la habilidad para apuntar y atajar (r = 0.27-0.33, p <0.05) y los problemas de comportamiento (r = 0.38-0.49, p = 0.001) se correlacionaron con la participación en la actividad física. La capacidad de persistir en las tareas, un aspecto de la motivación se correlacionó con la participación física (r = 0.45, p <0.001) y la actividad social (r = 0.28, p <0.05). INTERPRETACIÓN: Los problemas de desarrollo en los adolescentes con CHD están asociados con una disminución de la participación física y social, lo que los pone a riesgo de una pobre salud física y mental. Deben buscarse estrategias para la promoción de la salud de esta población.

Participação em atividades de lazer em adolescentes com defeitos cardíacos congênitos OBJETIVO: Descrever a participação em lazer de adolescentes com defeitos cardíacos congênitos (DCC) e identificar fatores associados com a intensidade de participação. MÉTODO: Oitenta adolescentes com DCC foram recrutados (39 do sexo masculino, 41 do sexo feminino; média de idade [DP] 15a 8m [1a 8m] variação 11a 5m-19a 11m), dos quais 78 completaram a medida de participação em lazer Avaliação da participação e diversão das crianças (APDC). A medida tem cinco subescalas: recreacional, ativa-física, social, baseada em habilidades, e auto-aprimoramento. Associações entre a APDC e idade, sexo e desenvolvimento foram examinadas. A capacidade motora (Bateria de avaliação do movimento para crianças, segunda edição), cognição (Escala internacional de desempenho de Leiter- Revisada), comportamento (Questionário de capacidades e dificuldades), e motivação (Questionário de Dimensões do Domínio) foram avaliados. RESULTADOS: Os participantes exibiram comprometimento do desenvolvimento motor (43,5%), comportamental (23,7%), e cognitivo (29,9%). A participação mais intensa segundo a APDC foi nos tipos social (média [DP] 3,3 [0,99]) e recreacional (2.9 [0,80]). O sexo masculino (p<0,05) e menor idade foram associados com maior nível de atividade física (<15a: 1,87; ≥15a: 1,31, p<0,05). Um maior engajamento em atividades sociais foi relacionado com uma melhor cognição (r=0,28, p<0,05), maior função motora (r=0,30-0,36, p<0,01), e menos dificuldades comportamentais (r=-0,32 a -0,47, p<0,01). A capacidade cognitiva (r=0,27, p<0,05), destreza e mirar/apreender (r=0,27-0,33, p<0,05), e problemas comportamentais (r=0,38-0,49, p=0,001) foram correlacionadas com a participação em atividades físicas. A persistência nas tarefas, um aspecto da motivação, se correlacionou com o envolvimento em atividades físicas (r=0,45, p<0,001) e sociais (r=0,28, p<0,05). INTERPRETAÇÃO: Alterações persistentes do desenvolvimento de adolescentes com DCC são associadas com engajamento ativo-físico e social reduzidos, o que os coloca em risco para sua saúde física e mental. Estratégias de promoção de saúde deveriam ser consideradas.

International expert recommendations of clinical features to prompt referral for diagnostic assessment of cerebral palsy.

AIM: To establish international expert recommendations on clinical features to prompt referral for diagnostic assessment of cerebral palsy (CP). METHOD: An online Delphi survey was conducted with international experts in early identification and intervention for children with CP, to validate the results obtained in two previous consensus groups with Canadian content experts and knowledge users. We sent two rounds of questionnaires by e-mail. Participants rated their agreement using a 4-point Likert scale, along with optional open-ended questions for additional feedback. Additionally, a panel of experts and knowledge-users reviewed the results of each round and determined the content of subsequent surveys. RESULTS: Overall, there was high-level of agreement on: (1) six clinical features that should prompt referral for diagnosis; (2) two 'warning sign' features that warrant monitoring rather than immediate referral for diagnosis; and (3) five referral recommendations to other healthcare professionals to occur simultaneously with referral for diagnosis. INTERPRETATION: There was high agreement among international experts, suggesting that the features and referral recommendations proposed for primary care physicians for early detection of CP were broadly generalizable. These results will inform the content of educational tools to improve the early detection of CP in the primary care context. WHAT THIS PAPER ADDS: International experts provide strong agreement on clinical features to detect cerebral palsy. Consensus on clinical 'warning signs' to monitor over time. Referral recommendations from primary care to specialized health services are identified.

RECOMENDACIONES DE EXPERTOS INTERNACIONALES SOBRE CARACTERÍSTICAS CLÍNICAS PARA UNA DERIVACIÓN RÁPIDA PARA LA EVALUACIÓN DIAGNÓSTICA DE LA PARÁLISIS CEREBRAL: OBJETIVO: Establecer recomendaciones de expertos internacionales sobre características clínicas para iniciar derivación para la evaluación diagnóstica de la parálisis cerebral (PC). MÉTODO: Se realizó una encuesta online tipo Delphi con expertos en identificación e intervención temprana de niños con PC a fin de validar los resultados obtenidos en dos grupos de consenso realizados previamente en Canadá con expertos en contenidos y usuarios. Se enviaron dos rondas de cuestionarios por correo electrónico. Los participantes calificaron su acuerdo con un puntaje de 4 puntos en una escala Likert y con preguntas opcionales de respuesta abierta para comentarios adicionales. Además, un panel de expertos y usuarios revisaron los resultados de cada ronda y determinaron el contenido de las encuestas subsiguientes. RESULTADOS: En general, hubo un alto nivel de acuerdo sobre: ​​(1) seis características clínicas que requieren derivación rápida para el diagnóstico, (2) dos características de "señales de advertencia" que requieren monitoreo en lugar de referencia inmediata para el diagnóstico, y (3) cinco recomendaciones de referencia a otros profesionales de la salud que deben realizarse simultáneamente con la derivación para el diagnóstico. INTERPRETACIÓN: Hubo gran acuerdo entre los expertos internacionales, sugiriendo que las características y recomendaciones de referencia propuestas para los médicos de atención primaria para la detección de PC fue ampliamente generalizable. Estos resultados informarán el contenido de herramientas educativas para mejorar la detección precoz de PC en el contexto de atención primaria.

RECOMENDAÇÕES DE ESPECIALISTAS INTERNACIONAIS SOBRE ASPECTOS CLÍNICOS DISPARADORES DE ENCAMINHAMENTO PARA AVALIAÇÃO DIAGNÓSTICA EM PARALISIA CEREBRAL: OBJETIVO: Estabelecer recomendações de especialistas internacionais sobre os aspectos clínicos disparadores de encaminhamento para avaliação diagnóstica em paralisia cerebral (PC). MÉTODO: Um levantamento online internacional do tipo Delphi foi realizado com especialistas em identificação e intervenção precoce para crianças com PC, para validar os resultados obtidos em dois consensos prévios com especialistas no conteúdo e usuários canadenses. Enviamos duas rodadas de questionários por email. Os participantes pontuaram sua concordância usando uma escala Likert de 4 pontos, junto com questões abertas opcionais para informações adicionais. Além disso, um painel de especialistas e usuários revisaram os resultados de cada rodada, e determinaram o conteúdo das pesquisas subsequentes. RESULTADOS: Em geral, houve alto nível de concordância em: 1) seis aspectos clínicos que devem disparar encaminhamento para diagnóstico. 2) dois 'sinais de alerta' que merecem monitoramento mas não encaminhamento imediato para diagnóstico, e 3) cinco recomendações de encaminhamento para outros profissionais da saúde simultaneamente ao encaminhamento para diagnóstico. INTERPRETAÇÃO: Houve alta concordância entre especialistas internacionais, sugerindo que os aspectos e recomendações para encaminhamento propostos para médicos na atenção básica para a identificação precoce da PC foram amplamente generalizáveis. Estes resultados informarão o conteúdo de ferramentas educacionais para melhorar a detecção precoce de PC no contexto da atenção básica.

Associations Between Postoperative Management in the Critical Care Unit and Adolescent Developmental Outcomes Following Cardiac Surgery in Infancy: An Exploratory Study.

OBJECTIVES: Children with congenital heart disease are at high risk for developmental sequelae. Most studies focus on preoperative and intraoperative predictors of developmental impairment, with less attention to the postoperative period. The relationship between patient-related factors specific to the postoperative course in the PICU following cardiac surgery with long-term neurodevelopmental outcomes in adolescence was examined. DESIGN: Retrospective chart review of patients previously recruited to a study describing their developmental outcomes in adolescence. SETTING: Single tertiary care pediatric hospital in Canada. PATIENTS: Eighty adolescents, born between 1991 and 1999, with congenital heart disease who required open-heart surgery before 2 years old. MEASUREMENTS AND MAIN RESULTS: Several variables related to acuity of illness and complexity of postoperative course in the PICU were collected. Outcome measures included the Movement-Assessment Battery for Children-2 (motor), Leiter Brief Intelligence Quotient (cognition), and Strength and Difficulties Questionnaire (behavior). Analyses examined associations between PICU variables and long-term outcomes. Longer mechanical ventilation (ß = -0.49; p = 0.013) and dopamine use (ß = -14.41; p = 0.012) were associated with lower motor scores. Dopamine use was associated with lower cognitive scores (ß = -14.02; p = 0.027). Longer PICU stay (ß = 0.18; p = 0.002), having an open chest postoperatively (ß = 3.83; p = 0.017), longer mechanical ventilation (ß = 0.20; p = 0.001), longer inotrope support (ß = 0.27; p = 0.002), hours on dopamine (ß = 0.01; p = 0.007), days to enteral feeding (ß = 0.22; p = 0.012), lower hemoglobin (ß = -0.11; p = 0.004), and higher creatinine (ß = 0.05; p = 0.014) were all associated with behavioral difficulties. CONCLUSIONS: Several important developmental outcomes in adolescents were associated with factors related to their postoperative course in the PICU as infants. Findings may highlight those children at highest risk for neurodevelopmental sequelae and suggest new approaches to critical care management following open-heart surgery, with the aim of mitigating or preventing adverse long-term outcomes.

Online peer mentorship programmes for children and adolescents with neurodevelopmental disabilities: A systematic review.

BACKGROUND: Children and adolescents with neurodevelopmental disabilities may be less well integrated into their community than their peers. Online groups can be particularly accessible for individuals with neurodevelopmental disabilities, as individuals may be able to connect with a larger network than they would in their local community. This systematic review aimed at estimating the effectiveness of online peer mentorship programmes on children and adolescent's participation in life situations. METHODS: A systematic review was conducted to search Medline, PsycINFO, Embase, CINAHL, and Education Research Complete (ERIC) electronic databases. Thematic analysis was done for studies that used qualitative methodology. RESULTS: Eleven articles were included, and they examined the influences of five different structured online peer mentorship intervention programmes and six different online support groups. The disabilities included cerebral palsy (n = 3), autism spectrum disorder (n = 3), spina bifida (n = 2), attention deficit hyperactivity disorder (n = 2), and other neurodevelopmental disorders. The mentors included in the studies were caregivers of children with disabilities, youth and adults with disabilities, and a virtual peer actor. The mentees included in the studies were youth with disabilities (age 10-19 years) and their families. Intervention characteristics varied across the studies but consistently showed a unique potential to facilitate social networking and support. Intervention programmes with specific content and structure showed better participation outcomes than unstructured interventions. Presence of a moderator and participant characteristics (age and sociocultural background) was suggested to influence the outcomes of interventions. CONCLUSIONS: Online peer mentorship programmes appear to have positive influence on social engagement and participation in life situation for children and adolescents with disabilities. This paper discusses several areas that should be considered in future research studies to improve potential effectiveness and use of study designs that help to establish not only if interventions work but also for whom they work best and why.

Use of consensus methods to determine the early clinical signs of cerebral palsy.

OBJECTIVES: To develop expert-informed content regarding the early motor attributes of cerebral palsy (CP) that should prompt physician referral for diagnostic assessment of CP, as well as concurrent referral recommendations. This content will be used in the creation of knowledge translation (KT) tools for primary care practitioners and parents. METHODS: Two nominal group processes were conducted with relevant stakeholders, representing Canadian 'content experts' and 'knowledge-users', using an integrated KT approach. RESULTS: Six attributes were identified that should prompt referral for diagnosis. If the child demonstrates: Early handedness <12 months; stiffness or tightness in the legs between 6 and 12 months; persistent fisting of the hands >4 months; persistent head-lag >4 months; inability to sit without support >9 months; any asymmetry in posture or movement. Five referral recommendations were agreed upon: Motor intervention specialist (physical therapy and/or occupational therapy) for ALL; speech-language pathology IF there is a communication delay; audiology IF there is parental or healthcare professional concern regarding a communication delay; functional vision specialist (e.g., optometrist or occupational therapist) IF there is a vision concern (e.g., not fixating, following, or tracking); feeding specialist (e.g., occupational therapist, speech-language pathologist) IF there are feeding difficulties (e.g., poor sucking, poor swallowing, choking, and/or not gaining weight). CONCLUSION: Rigorous consensus methods provided the initial evidence necessary to inform the content of tools to assist primary care providers in the early detection of CP. Results will be validated through a Delphi process with international experts, and user-friendly formats of this KT tool will be developed collaboratively with stakeholders.