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BACKGROUND: The literature on cognitive and academic outcomes for children with sickle cell disease (SCD) who experience perinatal risk factors is limited. We aimed to evaluate if low birthweight (LBW), gestational age, and history of neonatal intensive care unit (NICU) admission were associated with neurocognitive functioning, grade retention, or receipt of early intervention or formal educational support in children with SCD. PROCEDURES: This prospective birth cohort study included 336 participants, ages 8-18, with SCD, who received cognitive testing as part of standard of care and whose caregivers completed behavioral rating scales. Multivariable generalized linear regression models were used to examine associations between perinatal risks and outcome variables, after adjusting for demographic and medical covariates. RESULTS: The prevalence of NICU admission and LBW were 12.03% and 13.50%, respectively. Lower birthweight, earlier gestational age, and NICU admission were associated with worse working memory performance and receipt of early intervention services. Lower birthweight and NICU admission were also associated with slower processing speed. History of NICU admission was associated with caregiver ratings of hyperactivity and emotional dysregulation. The effects of perinatal risk factors on neurocognitive, academic, or educational outcomes were not dependent on SCD genotype. CONCLUSIONS: History of LBW or NICU admission was associated with worse cognitive outcomes and increased use of early intervention services among children with SCD. Early identification of perinatal risk factors will help identify children who will benefit from formal developmental or neuropsychological evaluations to manage the comorbidity of SCD and perinatal risks and facilitate increased intervention.
Subject(s)
Anemia, Sickle Cell , Humans , Anemia, Sickle Cell/complications , Female , Male , Child , Adolescent , Risk Factors , Prospective Studies , Infant, Newborn , Intensive Care Units, Neonatal , Infant, Low Birth Weight , Pregnancy , Gestational Age , Follow-Up StudiesABSTRACT
BACKGROUND: Prediction of outcomes in perinatal arterial ischemic stroke (PAIS) is challenging. We performed a systematic review and meta-analysis to determine whether infarct characteristics can predict outcomes in PAIS. METHODS: A systematic search was conducted using five databases in January 2023. Studies were included if the sample included children with neonatal or presumed PAIS; if infarct size, location, or laterality was indicated; and if at least one motor, cognitive, or language outcome was reported. The level of evidence and risk of bias were evaluated using the Risk of Bias in Non-Randomized Studies of Interventions tool. Meta-analyses were conducted comparing infarct size or location with neurological outcomes when at least three studies could be analyzed. RESULTS: Eighteen full-text articles were included in a systematic review with nine included in meta-analysis. Meta-analyses revealed that small strokes were associated with a lower risk of cerebral palsy/hemiplegia compared with large strokes (risk ratio [RR] = 0.263, P = 0.001) and a lower risk of epilepsy (RR = 0.182, P < 0.001). Middle cerebral artery (MCA) infarcts were not associated with a significantly different risk of cerebral palsy/hemiplegia compared with non-MCA strokes (RR = 1.220, P = 0.337). Bilateral infarcts were associated with a 48% risk of cerebral palsy/hemiplegia, a 26% risk of epilepsy, and a 58% risk of cognitive impairment. CONCLUSIONS: Larger stroke size was associated with worse outcomes across multiple domains. Widely heterogeneous reporting of infarct characteristics and outcomes limits the comparison of studies and the analysis of outcomes. More consistent reporting of infarct characteristics and outcomes will be important to advance research in this field.
Subject(s)
Ischemic Stroke , Neuroimaging , Humans , Ischemic Stroke/diagnostic imaging , Ischemic Stroke/complications , Infant, NewbornABSTRACT
[This corrects the article DOI: 10.3389/fped.2024.1361757.].
ABSTRACT
BACKGROUND: Developmental delays are common among children with sickle cell disease (SCD). Existing guidelines support consistent screening to increase the identification of deficits and support referral to rehabilitative interventions, yet adherence remains variable. This study sought to assess current practices and identify barriers and facilitators to improve developmental screening for children 0-3 years with SCD. PROCEDURE: A mixed methods approach, guided by the Exploration and Preparation stages of the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework, assessed developmental screening practices among primary care providers and hematologists. Phase 1 included the SCD Developmental Surveillance and Screening Guideline and Practice Survey. Phase 2 included the SCD Developmental Screening Organizational Survey alongside semi-structured interviews. Descriptive and qualitative methods summarized the findings. RESULTS: Thirty-three providers from general pediatrics and hematology completed phase 1. Use of standardized developmental screening measures was variable, with the most frequently used being the Modified Checklist for Autism in Toddlers (77%) and the Ages and Stages Questionnaire (55%). Fifteen providers participated in phase 2, and reported they were most likely to engage in changes to improve their practice (mean = 4.4/5) and least likely to support spiritual health and well-being (mean = 3.5/5). Three themes emerged:(i) developmental screening is not standardized or specific to SCD, (ii) children with SCD benefit from a multidisciplinary team, and (iii) healthcare system limitations are a barrier. CONCLUSIONS: Developmental screening is inconsistent and insufficient for young children with SCD. Providers are interested in supporting children with SCD, but report a lack of standardized measures and consistent guidance as barriers.
Subject(s)
Anemia, Sickle Cell , Humans , Anemia, Sickle Cell/diagnosis , Infant , Male , Child, Preschool , Female , Infant, Newborn , Developmental Disabilities/diagnosis , Developmental Disabilities/etiology , Mass Screening/methods , Surveys and QuestionnairesABSTRACT
Purpose: This study aimed to identify determinants influencing the utilization of early intervention services among young children with sickle cell disease (SCD) based on perspectives from medical and early intervention providers. Design and methods: Early intervention and medical providers from the catchment area surrounding St. Jude Children's Research Hospital and Washington University were recruited (20 total providers). Interviews were completed over the phone and audio recorded. All interviews were transcribed verbatim, coded, and analyzed using inductive thematic analysis. Results: Three overarching themes were identified from both groups: Awareness (e.g., lack of awareness about the EI system and SCD), Access (e.g., difficulties accessing services), and Communication (e.g., limited communication between medical and early intervention providers, and between providers and families). Although these three themes were shared by medical and early intervention providers, the differing perspectives of each produced subthemes unique to the two professional fields. Conclusions: Early intervention services can limit the neurodevelopmental deficits experienced by young children with SCD; however, most children with SCD do not receive these services. The perspectives of early intervention and medical providers highlight several potential solutions to increase early intervention utilization among young children with SCD.
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Aim: The rise of wearable sensing technology shows promise for addressing the challenges of measuring motor behavior in pediatric populations. The current pediatric wearable sensing literature is highly variable with respect to the number of sensors used, sensor placement, wearing time, and how data extracted from the sensors are analyzed. Many studies derive conceptually similar variables via different calculation methods, making it hard to compare across studies and clinical populations. In hopes of moving the field forward, this report provides referent upper limb wearable sensor data from accelerometers on 25 variables in typically-developing children, ages 3-17 years. Methods: This is a secondary analysis of data from three pediatric cohorts of children 3-17 years of age. Participants (n = 222) in the cohorts wore bilateral wrist accelerometers for 2-4 days for a total of 622 recording days. Accelerometer data were reprocessed to compute 25 variables that quantified upper limb movement duration, intensity, symmetry, and complexity. Analyses examined the influence of hand dominance, age, gender, reliability, day-to-day stability, and the relationships between variables. Results: The majority of variables were similar on the dominant and non-dominant sides, declined slightly with age, and were not different between boys and girls. ICC values were moderate to excellent. Variation within individuals across days generally ranged from 3% to 32%. A web-based R shiny object is available for data viewing. Interpretation: With the use of wearable movement sensors increasing rapidly, these data provide key, referent information for researchers as they design studies, and analyze and interpret data from neurodevelopmental and other pediatric clinical populations. These data may be of particularly high value for pediatric rare diseases.
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Sexual harassment is pervasive in academic health fields. Although a predominantly female profession, early career academics and trainees in occupational therapy (OT) remain vulnerable to sexual harassment. We aimed to describe experiences of sexual harassment of female-identifying academic OT practitioners. We conducted surveys and interviews using Interpretive Phenomenological Analysis to examine participants' experiences. Ten participants completed the survey and/or interview. Experiences ranged from inappropriate comments to persistent sexual assault. Four themes (blurred lines, unbalanced consequences, "how did I get here?" and "we don't talk about it") were generated based on participant responses. Power dynamics and the cultures and values of the OT profession were underlying elements of all themes. The consequences of sexual harassment were severe and affected personal and professional growth. For OT research and education to thrive, stronger support for victims and consistent, appropriate consequences for perpetrators are necessary to minimize negative outcomes for victims.
Subject(s)
Occupational Therapy , Sexual Harassment , Humans , Female , Male , Surveys and QuestionnairesABSTRACT
Abstract Introduction The role of systemic marginalization in negatively impacting the health and wellbeing of individuals and populations is well-established. Although the profession has begun to address the impact of colonialism in clinical and educational contexts, these topics are less represented in the underpinning theories, models, and frameworks that guide research, practice, and education. Objective To identify and analyze peer-reviewed journal articles about professional theories, models, and frameworks describing justice-oriented constructs. Method We searched for journal articles published between 1971 and 2021 as indexed in PubMed/Medline, EMBASE, Scopus, PsycInfo, CINAHL, and Web of Science. We used the Levac et al. methodology and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews extension (PRISMA-ScR) and the JBI Scoping Review Network. Included articles featured theories, models, frameworks that described justice-oriented constructs. Results Forty-five articles published from 1987 to 2021 met inclusion criteria. These included 19 models, 19 frameworks, five theories, and two paradigms. The majority of articles originated in Canada, the United States, and Australia and within the past 20 years. The most commonly described constructs were inclusion, culture, and occupational justice. Conclusion This scoping review provides an overview of publications describing theories, models, and frameworks in occupational therapy literature that include justice-oriented constructs. Although justice-oriented constructs were the central topic in 35 articles, the context was not explicitly connected to professional activity. Only seven articles discussed research, which reveals a major concern considering its foundational role in the profession.
Resumo Introdução O papel da marginalização sistémica no impacto negativo na saúde e no bem-estar dos indivíduos e das populações está bem estabelecido. Embora a profissão tenha começado a abordar o impacto do colonialismo em contextos clínicos e educacionais, estes tópicos estão menos representados nas teorias, modelos e enquadramentos subjacentes que orientam a investigação, a prática e a educação. Objetivo Identificar e analisar artigos de periódicos revisados por pares sobre teorias, modelos e estruturas profissionais que descrevem construtos orientados para a justiça. Método Pesquisamos artigos de periódicos publicados entre 1971 e 2021 indexados em PubMed/Medline, EMBASE, Scopus, PsycInfo, CINAHL e Web of Science. Usamos o Levac et al. metodologia e seguiumos a extensão Preferred Reporting Items for Systematic Reviews and Meta-Analyses para extensão Scoping Reviews (PRISMA-ScR) e a JBI Scoping Review Network. Os artigos incluídos apresentavam teorias, modelos e estruturas que descreviam construções orientadas para a justiça. Resultados Quarenta e cinco artigos publicados de 1987 a 2021 preencheram os critérios de inclusão. Estes incluíram 19 modelos, 19 estruturas, cinco teorias e dois paradigmas. A maioria dos artigos teve origem no Canadá, nos Estados Unidos e na Austrália nos últimos 20 anos. Os construtos mais comumente descritos foram inclusão, cultura e justiça ocupacional. Conclusão Esta revisão de escopo fornece uma visão geral das publicações que descrevem teorias, modelos e estruturas na literatura de terapia ocupacional que incluem construtos orientados para a justiça. Embora os construtos orientados para a justiça tenham sido o tema central em 35 artigos, o contexto não estava explicitamente ligado à atividade profissional. Apenas sete artigos discutiram a pesquisa, o que revela uma grande preocupação considerando o seu papel fundacional na profissão.
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Motor skills and movement-related functioning significantly shape how children experience and interact with the world around them. Among infants and young children, developmental motor disorders contribute to delays with motor, cognitive, and psychosocial development. Early and accurate identification of these disorders is necessary to facilitate timely access to therapeutic interventions that minimize the long-term effects of disability on everyday activities and participation. In the United States, motor assessments commonly used among children 0 to 3 years focus on completion of specific motor skills at a single point in time, which provides only a part of the greater picture that is a child's motor and movement-related functioning. Video-capture methods, like the General Movements Assessment (GMA) and the Infant Motor Profile (IMP), offer greater accuracy and predictive power to (1) identify motor deficits in young children and (2) facilitate early access to supportive, therapeutic intervention.
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Theories, models, and frameworks provide the foundation for occupational therapy education, research, and clinical practice. While most have a systems approach focus, other factors, such as societal influences and structural inequities, also contribute to health. Using a cross-sectional design, this study identified the gaps in occupational therapy models of practice and presents a novel approach, the PAIRE (Recognize Privilege, Acknowledge Injustice, and Reframe Perspective to Reach Equity) Model. PAIRE is focused on achieving occupational equity through the reciprocal and intersectional impact of the provider/team, the person/people seeking occupational therapy, and the occupation-in-context, with continuous influences of access, context, and justice. We describe the components of PAIRE and illustrate its functionality in education, research, and clinical practice contexts as well as case examples.
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This review aimed to identify and describe individual-level behavioral interventions for children 0-18 years of age with sickle cell disease (SCD). PRISMA guidelines were followed at each stage of this review. Twenty-seven studies were included, representing six intervention types: disease knowledge (n = 7), self-management (n = 7), pain management (n = 4), school functioning (n = 4), cognitive health (n = 4), and mental health (n = 2). Most interventions targeted older children (5+ years), while only two examined interventions for children 0-3 years. This review suggests that offering education about disease knowledge, self-management, and pain management interventions can be beneficial for this population. Future research is needed to understand interventions to support young children and the impact of SCD on development.
Subject(s)
Anemia, Sickle Cell , Behavior Therapy , Adolescent , Child , Child, Preschool , Humans , Anemia, Sickle Cell/therapy , Behavior Therapy/methods , Pain Management , Self-Management , Infant, Newborn , Infant , Patient Education as TopicABSTRACT
OBJECTIVES: Sleep issues are common in children with cerebral palsy (CP), although there are challenges in obtaining objective data about their sleep patterns. Actigraphs measure movement to quantify sleep but their accuracy in children with CP is unknown. Our goals were to validate actigraphy for sleep assessment in children with CP and to study their sleep patterns in a cross-sectional cohort study. METHODS: We recruited children with (N = 13) and without (N = 13) CP aged 2-17 years (mean age 9 y 11mo [SD 4 y 10mo] range 4-17 y; 17 males, 9 females; 54% spastic quadriplegic, 23% spastic diplegic, 15% spastic hemiplegic, 8% unclassified CP). We obtained wrist and forehead actigraphy with concurrent polysomnography for one night, and home wrist actigraphy for one week. We developed actigraphy algorithms and evaluated their accuracy (agreement with polysomnography-determined sleep versus wake staging), sensitivity (sleep detection), and specificity (wake detection). RESULTS: Our actigraphy algorithms had median 72-80% accuracy, 87-91% sensitivity, and 60-71% specificity in children with CP and 86-89% accuracy, 88-92% sensitivity, and 70-75% specificity in children without CP, with similar accuracies in wrist and forehead locations. Our algorithms had increased specificity and accuracy compared to existing algorithms, facilitating detection of sleep disruption. Children with CP showed lower sleep efficiency and duration than children without CP. CONCLUSIONS: Actigraphy is a valid tool for sleep assessment in children with CP. Children with CP have worse sleep efficiency and duration.
Subject(s)
Actigraphy , Cerebral Palsy , Adolescent , Cerebral Palsy/complications , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Male , Polysomnography , SleepABSTRACT
AIM: To summarize developmental delay among infants and toddlers with sickle cell disease (SCD). METHOD: This systematic review included studies that reported developmental outcomes of children with SCD between 0 months and 48 months of age and followed standards set forth by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS: Ten studies were included, describing 596 unique developmental assessments. The rate of developmental delay ranged from 17.5% to 50% and increased with age. Cognition was the only domain included in all studies and the most frequently identified delay. One study reported that more severe SCD genotypes predicted worse development, while five studies reported no difference in rates of developmental delay across genotypes. INTERPRETATION: These findings emphasize the need for standardized screening to identify children with SCD at risk of delay at a young age to facilitate appropriate referrals for therapeutic intervention. Frequent and comprehensive developmental screening is necessary among all SCD genotypes.
Subject(s)
Anemia, Sickle Cell/complications , Developmental Disabilities/etiology , Anemia, Sickle Cell/diagnosis , Child, Preschool , Developmental Disabilities/diagnosis , Humans , Infant , Infant, NewbornABSTRACT
BACKGROUND: Cerebral palsy (CP) is the leading cause of disability in children. While motor deficits define CP, many patients experience behavioral and cognitive deficits which limit participation. The purpose of this study was to contribute to our understanding of developmental delay and how to measure these deficits among children with CP. METHODS: Children 5 to 15 years with hemiplegic CP were recruited. Cognition and motor ability were assessed. The brain injury associated with observed motor deficits was identified. Accelerometers measured real-world bilateral upper extremity movement and caregivers completed behavioral assessments. RESULTS: Eleven children participated, 6 with presumed perinatal stroke. Four children scored below average intelligence quotient while other measures of cognition were within normal limits (except processing speed). Motor scores confirmed asymmetrical deficits. Approximately one third of scores indicated deficits in attention, behavior, or depression. CONCLUSIONS: Our findings corroborate that children with CP experience challenges that are broader than motor impairment alone. Despite the variation in brain injury, all participants completed study procedures. IMPLICATIONS: Our findings suggest that measuring behavior in children with CP may require a more comprehensive approach and that caregivers are amenable to using online collection tools which may assist in addressing the therapeutic needs of children with CP.
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The Infant Toddler Activity Card Sort (ITACS) is a new measure that engages caregivers in goal development by measuring participation in early childhood. Initial evaluation of the ITACS is required to assess its psychometric properties. To evaluate test-retest reliability, concurrent validity, and between-group differences of the ITACS. Caregivers (N = 208) of children 0-3 years, who were typically developing (TD) or had a developmental delay (DD), completed the ITACS and Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) with repeat assessment after 2 weeks later (n = 117). The ITACS demonstrated moderate concurrent validity with the PEDI-CAT. Children with DD had significantly more activity concerns on the ITACS than TD. Adequate test-retest reliability was not achieved. The ITACS is a useful tool for identifying caregiver concerns in activity engagement; interventions can be tailored to address concerns and increase participation in childhood routines.
Subject(s)
Caregivers , Disability Evaluation , Child , Child, Preschool , Humans , Infant , Psychometrics , Reproducibility of ResultsABSTRACT
Whole-brain resting-state functional MRI (rs-fMRI) during 2 wk of upper-limb casting revealed that disused motor regions became more strongly connected to the cingulo-opercular network (CON), an executive control network that includes regions of the dorsal anterior cingulate cortex (dACC) and insula. Disuse-driven increases in functional connectivity (FC) were specific to the CON and somatomotor networks and did not involve any other networks, such as the salience, frontoparietal, or default mode networks. Censoring and modeling analyses showed that FC increases during casting were mediated by large, spontaneous activity pulses that appeared in the disused motor regions and CON control regions. During limb constraint, disused motor circuits appear to enter a standby mode characterized by spontaneous activity pulses and strengthened connectivity to CON executive control regions.
Subject(s)
Gyrus Cinguli/physiology , Neuronal Plasticity/physiology , Rest/physiology , Adult , Brain Mapping , Executive Function/physiology , Female , Gyrus Cinguli/cytology , Gyrus Cinguli/diagnostic imaging , Healthy Volunteers , Humans , Magnetic Resonance Imaging , Male , Nerve Net/physiologySubject(s)
Brain/physiopathology , Neuronal Plasticity/physiology , Stroke/physiopathology , Adolescent , Age of Onset , Humans , Infant, Newborn , MaleABSTRACT
BACKGROUND: Development is rapid in the first years of life. Developmental delays appearing during this critical period have the potential to persist throughout the child's life. Available standardized assessments for this age record a child's ability to successfully complete discrete skills but fail to capture whether the child incorporates those skills into daily routines that are meaningful to the child and family. The Infant Toddler Activity Card Sort (ITACS) is a newly developed photograph-based early intervention tool to measure the participation-related concept of activity competence using caregiver report. The purpose of the present study was to use Rasch analysis to determine if ITACS items comprehensively measure the construct of child activity competence. RESULTS: A total of 60 child/caregiver dyads participated. The dichotomous caregiver-reported responses (present vs. absent) on the 40 individual ITACS items were used in Rasch analysis, and three iterations of the model were completed. The final model included 51 child/caregiver dyads and 67 ITACS assessments with a good spread of individual ability measure (6.47 logits). All items demonstrated adequate infit except for "sleeping" (range 0.68-1.54). Five items (sleeping, eating at restaurants, brushing teeth, crawling, and interact with pets) demonstrated high Mean Square (MNSQ) outfit statistics and one (take a bath) demonstrated low MNSQ outfit. ITACS items demonstrated a good spread of item difficulty measures (6.27 logits), and a clear ceiling was observed. Three activity items (smiling, breastfeeding, and playing with adults) were rarely endorsed as concerns. The activities most likely to be reported as challenging were "crying/communicating" and "going to school". Person and item reliability statistics were adequate (0.79 and 0.80, respectively). The separation between individuals and between items were adequate to good (1.96 and 1.99, respectively). CONCLUSIONS: Findings indicate that ITACS items are measuring a unidimensional construct--activity competence in early childhood. The Rasch analysis of caregiver responses suggest that some activities are more likely to be considered challenging and may be important targets for intervention. These results provide evidence to further validate the ITACS as a caregiver report measure and support its use in the early intervention setting to facilitate caregiver driven goal development.
ABSTRACT
To induce brain plasticity in humans, we casted the dominant upper extremity for 2 weeks and tracked changes in functional connectivity using daily 30-min scans of resting-state functional MRI (rs-fMRI). Casting caused cortical and cerebellar regions controlling the disused extremity to functionally disconnect from the rest of the somatomotor system, while internal connectivity within the disused sub-circuit was maintained. Functional disconnection was evident within 48 h, progressed throughout the cast period, and reversed after cast removal. During the cast period, large, spontaneous pulses of activity propagated through the disused somatomotor sub-circuit. The adult brain seems to rely on regular use to maintain its functional architecture. Disuse-driven spontaneous activity pulses may help preserve functionally disconnected sub-circuits.