Disability Inventory-Computer Adaptive Test Research Articles

Efficacy of Early Intervention for Infants With Cerebral Palsy in an LMIC: An RCT.

To test efficacy of a parent-delivered multidomain early intervention (Learning through Everyday Activities with Parents [LEAP-CP]) for infants with cerebral palsy (CP) compared with equal-dose of health advice (HA), on (1) infant development; and (2) caregiver mental health. It was hypothesized that infants receiving LEAP-CP would have better motor function, and caregivers better mental health. This was a multisite single-blind randomized control trial of infants aged 12 to 40 weeks corrected age (CA) at risk for CP (General Movements or Hammersmith Infant Neurologic Examination). Both LEAP-CP and HA groups received 15 fortnightly home-visits by a peer trainer. LEAP-CP is a multidomain active goal-directed intervention. HA is based on Key Family Practices, World Health Organization. Primary outcomes: (1) infants at 18 months CA: Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT mobility); and (2) caregiver: Depression Anxiety and Stress Scale. Of eligible infants, 153 of 165 (92.7%) were recruited (86 males, mean age 7.1±2.7 months CA, Gross Motor Function Classification System at 18 m CA: I = 12, II = 25, III = 9, IV = 18, V = 32). Final data were available for 118 (77.1%). Primary (PEDI-CAT mobility mean difference = 0.8 (95% CI -1.9 to 3.6) P = .54) and secondary outcomes were similar between-groups. Modified-Intention-To-Treat analysis on n = 96 infants with confirmed CP showed Gross Motor Function Classification System I and IIs allocated to LEAP-CP had significantly better scores on PEDI-CAT mobility domain (mean difference 4.0 (95% CI = 1.4 to 6.5), P = .003) compared with HA. Although there was no overall effect of LEAP-CP compared with dose-matched HA, LEAP-CP lead to superior improvements in motor skills in ambulant children with CP, consistent with what is known about targeted goal-directed training.

Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators.

Infants who survive prematurity and other critical illnesses and require continued invasive mechanical ventilation (IMV) postdischarge (at home) are at high risk of developmental delays and disabilities. Studies of extremely preterm cohorts (<28-week gestation) demonstrate rates of 25% for intellectual disability (ID) and 7% for autism spectrum disorder (ASD). Rates of ASD and ID in children with IMV are unknown. This study aimed to determine neurodevelopmental disability risk in a cohort of children with postdischarge IMV. A consecutive series of children with IMV were assessed 1 month, 6 months, and 1 year after discharge. Cognitive, social, and communicative domains were assessed by a Developmental and Behavioral Pediatrician using (1) clinical adaptive test/clinical linguistic and auditory milestone scale (CAT/CLAMS) of the capute scales; (2) pediatric evaluation of disability inventory computer adaptive test (PEDI-CAT); and (3) modified checklist for autism in toddlers, revised (MCHAT-R). Red flag signs and symptoms of ASD using DSM-V criteria were noted. Longitudinal testing was reviewed. Expert consensus impressions of evolving ASD and/or ID were determined. Eighteen children were followed for 1 year; at 1 year, the median age (range) was 23 (17-42) months. Children were 44% male, 33% non-Hispanic White, 39% non-Hispanic Black, and 28% Hispanic. Fifteen (83%) children were prematurity survivors. Median (range) developmental quotients (DQs): full-scale DQ 59 (11-86), CAT DQ 66.5 (8-96), and CLAMS DQ 49.5 (13-100). Twelve (67%) children were highly suspicious for ASD and/or evolving ID. This cohort of children with at-home IMV demonstrates a higher risk of ASD and ID than prior premature cohorts. Larger investigations with longer follow-up are needed.

Post-Intensive Care Sequelae in Pediatrics-Results of an Early Rehabilitation Implementation Study.

To compare post-PICU discharge functioning, health-related quality of life (HRQL), and parental stress before and after the implementation of an early rehabilitation bundle. Prospective cohort substudy within an early rehabilitation implementation program, conducted at the PICUs at McMaster Children's Hospital and London Health Sciences, London, Ontario, Canada. A bundle consisting of: 1) analgesia-first sedation; 2) delirium monitoring and prevention; and 3) early mobilization. Patients with an anticipated 48-hour PICU length of stay were approached for consent to participate. Critically ill children with an anticipated 48-hour PICU length of stay were approached for consent to participate. Patient-/proxy-reported outcome measures were assessed at baseline, PICU discharge, and 1 and 3 months post-PICU discharge using: 1) Pediatric Evaluation of Disability Inventory Computer Adaptive Test to assess physical, social, cognitive, and responsibility/caregiver domains of functioning; 2) KIDSCREEN to assess HRQL; and 3) the Pediatric Inventory for Parents to assess caregiver stress. A total of 117 participants were enrolled. Patient demographic characteristics were similar in the pre- and post-intervention groups. Following bundle implementation, 30 of 47 respondents (63.8%) experienced functional decline and 18 of 45 (40%) experienced low HRQL at PICU discharge. Eighteen of 36 (50%) at 1 month and 14 of 38 (36.8%) at 3 months experienced either persistent functional decline and/or low HRQL; 2.8% and 2.6% at 1- and 3-month follow-up, respectively, experienced both persistent functional decline and low HRQL. There were no significant differences in the rates of persistent functional decline, low HRQL, or caregiver stress scores post-bundle compared with pre-rehabilitation bundle implementation. We were unable to adequately determine the efficacy of a rehabilitation bundle on patient-centered outcomes as this substudy was not powered for these outcomes. Our results did reveal that persistent low functioning is common in PICU survivors, more common than low HRQL, while experiencing both functional decline and low HRQL was uncommon.

Changes Induced by Early Hand-Arm Bimanual Intensive Therapy Including Lower Extremities in Young Children With Unilateral Cerebral Palsy

Intensive interventions are provided to young children with unilateral cerebral palsy (UCP), classically focused on the upper extremity despite the frequent impairment of gross motor function. Hand-Arm Bimanual Intensive Therapy Including Lower Extremities (HABIT-ILE) effectively improves manual dexterity and gross motor function in school-aged children. To verify if HABIT-ILE would improve manual abilities in young children with UCP more than usual motor activity. This prospective randomized clinical trial (November 2018 to December 2021), including 2 parallel groups and a 1:1 allocation, recruitment took place at European university hospitals, cerebral palsy specialized centers, and spontaneous applications at 3 sites: Brussels, Belgium; Brest, France; and Pisa, Italy. Matched (age at inclusion, lesion type, cause of cerebral palsy, and affected side) pairs randomization was performed. Young children were assessed at baseline (T0), 2 weeks after baseline (T1), and 3 months after baseline (T2). Health care professionals and assessors of main outcomes were blinded to group allocation. At least 23 young children (in each group) aged 12 to 59 months with spastic/dyskinetic UCP and able to follow instructions were needed. Exclusion criteria included uncontrolled seizures, scheduled botulinum toxin injections, orthopedic surgery scheduled during the 6 months before or during the study period, severe visual/cognitive impairments, or contraindications to magnetic resonance imaging. Two weeks of usual motor activity including usual rehabilitation (control group) vs 2 weeks (50 hours) of HABIT-ILE (HABIT-ILE group). Primary outcome: Assisting Hand Assessment (AHA); secondary outcomes: Gross Motor Function Measure-66 (GMFM-66), Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), and Canadian Occupational Performance Measure (COPM). Of 50 recruited young children (26 girls [52%], median age; 35.3 months for HABIT-ILE group; median age, 32.8 months for control group), 49 were included in the final analyses. Change in AHA score from T0 to T2 was significantly greater in the HABIT-ILE group (adjusted mean score difference [MD], 5.19; 95% CI, 2.84-7.55; P < .001). Changes in GMFM-66 (MD, 4.72; 95% CI, 2.66-6.78), PEDI-CAT daily activities (MD, 1.40; 95% CI, 0.29-2.51), COPM performance (MD, 3.62; 95% CI, 2.91-4.32), and satisfaction (MD, 3.53; 95% CI, 2.70-4.36) scores were greater in the HABIT ILE group. In this clinical trial, early HABIT-ILE was shown to be an effective treatment to improve motor performance in young children with UCP. Moreover, the improvements had an impact on daily life activities of these children. ClinicalTrials.gov Identifier: NCT04020354.

A Prospective, Longitudinal Study of Caregiver-Reported Adaptive Skills and Function of Individuals with HNRNPH2-related Neurodevelopmental Disorder

Abstract Objectives This study presents a cohort of individuals in a natural history study with de novo pathogenic missense variants in HNRNPH2 causative of HNRNPH2-related neurodevelopmental disorder (NDD) to describe individuals’ adaptive functional abilities. Methods We measured adaptive function using the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) and the Vineland Adaptive Behavior Scale (VABS-III). Results were compared using inferential statistics and regression analysis. Results Sixty-seven individuals carried known pathogenic or likely pathogenic variants in HNRNPH2. Thirty-five participants (2.89–42.04 years, 83% female) and caregivers completed PEDI-CAT assessments with 25 of these participants completing the VABS-III. Sixteen, three and two participants completed a follow-up PEDI-CAT assessment at one, two and three years respectively. Individuals had mean normative scores less than age-matched peers across all domains on both PEDI-CAT and VABS-III measures, with 91% participants &lt; 5th percentile on both the PEDI- CAT and VABS-III. Verbal and ambulatory participants had significantly higher PEDI-CAT scores across all domains, using both raw and normative data. There was no significant change in PEDI-CAT scores over 3 years. Conclusions Overall scores, both raw and normative, are low across all individuals with HNRNPH2-related NDD using both the PEDI-CAT and VABS-III. PEDI-CAT normative scores do not likely represent the clinical variability, but raw scores may be able to capture functional variability. In a small sample, longitudinal data from the PEDI-CAT domain scores demonstrate stability in performance at 3 years. Trial Registration: ClinicalTrials.gov NCT03492060.

Home-based virtual reality-enhanced upper limb training system in children with brain injury: a randomized controlled trial.

Rehabilitation of upper limb function can be challenging in children with brain lesion. Recent virtual reality (VR) rehabilitation may be an additional treatment option in pediatric rehabilitation. To assess the feasibility and effectiveness of a home-based VR-enhanced rehabilitation program with wearable multi-inertial measurement unit (IMU) sensors on upper limb functions in children with brain injury. This multicenter single blind randomized controlled trial included 40 children with cerebral palsy (CP) or static brain injury. Subjects were randomized 1:1 to experimental and control group. Both the groups maintained the same therapeutic content and dose of occupational therapy during the intervention period. The experimental group performed additional training at home using the VR-enhanced program for at least 30 min/day, 5 days/week, for 6 weeks. VR training consisted of daily activities or games promoting wrist and forearm articular movements using wearable IMU sensors. The Melbourne Assessment of Unilateral Upper Limb Function-version 2 (MA2), Upper Limb Physician's Rating Scale (ULPRS), Pediatric Evaluation of Disability Inventory-computer adaptive test (PEDI-CAT), computerized 3D motion analysis, and user satisfaction survey were performed. Mann-Whitney U test was used to compare treatment effects between groups, and Friedman and Wilcoxon signed-rank tests were used to compare pre and post intervention. Overall 35 children (15 in VR group and 20 in control group) completed the protocol. In the experimental group, an average VR training time was 855 min. The accuracy of motion measured by MA2, segmental movements by ULPRS, daily living capability and social cognitive function by PEDI-CAT, movement time and shoulder movement pattern by motion analysis showed significant improvements. However, there were no significant differences in any of the functional outcome measures compared to the control group. All the children and parents reported positive experiences. Home-based VR training though it had limited impact on improving upper limb function, it could help improve social cognitive function, movement pattern, and efficiency in children with brain injury and could be an effective means of extending clinical therapy to the home. CRIS.nih.go.kr: identifier KCT0003172.

Improving Functional Abilities in Children and Adolescents with Autism Spectrum Disorder Using Non-Invasive REAC Neuro Psycho Physical Optimization Treatments: A PEDI-CAT Study.

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that affects communication, social interaction, and behavior. Non-invasive neuromodulation techniques, such as radioelectric asymmetric conveyer (REAC) technology, have gained attention for their potential to improve the endogenous bioelectric activity (EBA) and neurobiological processes underlying ASD. Neuro Postural Optimization (NPO) and Neuro Psycho Physical Optimization (NPPO) treatments are non-invasive and painless neuromodulation treatments that utilize REAC technology and have shown promising results in improving the symptoms of ASD. This study aimed to evaluate the effects of NPO and NPPO treatments on functional abilities in children and adolescents with ASD using the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT). The study consisted of 27 children and adolescents with ASD who underwent a single session of NPO followed by 18 sessions of NPPO treatment over a period of one week. The results showed significant improvements in the children's and adolescents' functional abilities across all domains of the PEDI-CAT. These findings suggest that NPO and NPPO may be effective treatments for improving functional abilities in children and adolescents with ASD.

Physical activity and physical fitness in children with heritable connective tissue disorders.

Health problems in patients with heritable connective tissue disorders (HCTD) are diverse and complex and might lead to lower physical activity (PA) and physical fitness (PF). This study aimed to investigate the PA and PF of children with heritable connective tissue disorders (HCTD). PA was assessed using an accelerometer-based activity monitor (ActivPAL) and the mobility subscale of the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT). PF was measured in terms of cardiovascular endurance using the Fitkids Treadmill Test (FTT); maximal hand grip strength, using hand grip dynamometry (HGD) as an indicator of muscle strength; and motor proficiency, using the Bruininks-Oseretsky Test of Motor Proficiency-2 (BOTMP-2). A total of 56 children, with a median age of 11.6 (interquartile range [IQR], 8.8-15.8) years, diagnosed with Marfan syndrome (MFS), n = 37, Loeys-Dietz syndrome (LDS), n = 6, and genetically confirmed Ehlers-Danlos (EDS) syndromes, n = 13 (including classical EDS n = 10, vascular EDS n = 1, dermatosparaxis EDS n = 1, arthrochalasia EDS n = 1), participated. Regarding PA, children with HCTD were active for 4.5 (IQR 3.5-5.2) hours/day, spent 9.2 (IQR 7.6-10.4) hours/day sedentary, slept 11.2 (IQR 9.5-11.5) hours/day, and performed 8,351.7 (IQR 6,456.9-1,0484.6) steps/day. They scored below average (mean (standard deviation [SD]) z-score -1.4 (1.6)) on the PEDI-CAT mobility subscale. Regarding PF, children with HCTD scored well below average on the FFT (mean (SD) z-score -3.3 (3.2)) and below average on the HGD (mean (SD) z-score -1.1 (1.2)) compared to normative data. Contradictory, the BOTMP-2 score was classified as average (mean (SD) z-score.02 (.98)). Moderate positive correlations were found between PA and PF (r(39) = .378, p < .001). Moderately sized negative correlations were found between pain intensity and fatigue and time spent actively (r(35) = .408, p < .001 and r(24) = .395 p < .001, respectively). This study is the first to demonstrate reduced PA and PF in children with HCTD. PF was moderately positively correlated with PA and negatively correlated with pain intensity and fatigue. Reduced cardiovascular endurance, muscle strength, and deconditioning, combined with disorder-specific cardiovascular and musculoskeletal features, are hypothesized to be causal. Identifying the limitations in PA and PF provides a starting point for tailor-made interventions.

Trunk Control Measurement Scale (TCMS): Psychometric Properties of Cross-Cultural Adaptation and Validation of the Spanish Version

The aim of this study was to develop a Spanish Version of the Trunk Measurement Scale (TCMS-S) to analyze its validity and reliability and determine the Standard Error of Measurement (SEM) and Minimal Detectable Change (MDC) in children with Cerebral Palsy (CP). Participants were assessed twice 7-15 days apart with the TCMS-S and once with the Gross Motor Function Measurement-88 (GMFM-88), Pediatric Disability Inventory-Computer Adaptive Test (PEDI-CAT), Cerebral Palsy Quality of Life (CPQoL), and Gross Motor Classification System (GMFCS). Internal consistency was evaluated using Cronbach's alpha, and the intraclass correlation (ICC) and kappa coefficients were used to investigate the agreement between the assessments. Finally, 96 participants with CP were included. The TCMS-S showed excellent internal consistency (Cronbach's alpha = 0.95 [0.93 to 0.96]); was highly correlated with the GMFM-88 (rho = 0.816) and the "mobility" subscale of the PEDI-CAT (rho = 0.760); showed a moderate correlation with the "feeling about functioning" CPQoL subscale (rho = 0.576); and differentiated between the GMFCS levels. Excellent test-retest agreement was found for the total and subscale scores (ICC ≥ 0.94 [0.89 to 0.97). For the total TCMS-S score, an SEM of 1.86 and an MDC of 5.15 were found. The TCMS-S is a valid and reliable tool for assessing trunk control in children with CP.

Is Mobility Sufficient to Understand Community Participation of Adolescents and Young Adults With Cerebral Palsy? The Mediating and Moderating Roles of Contextual Factors

ObjectiveTo explore whether self-determination and family socioeconomic status (SES) mediate and/or moderate the relationship between mobility and community participation of adolescents and young adults with cerebral palsy (CP). DesignSurvey. SettingOnline platform. ParticipantsOf 55 eligible adolescents/young adults with CP, 50 agreed to participate and 2 were excluded. The final convenience sample included 48 individuals (N=48), aged 15-32 years, levels I-IV of the Gross Motor Function Classification System and I-II of the Communication Function Classification System. Main Outcome MeasuresThe Temple University Community Participation Measure documented the amount, breadth, and insufficiency/sufficiency ratios of participation across 26 community settings. The ARC Self-determination Scale and the Mobility Scale of the Pediatric Evaluation of Disability Inventory–Computer Adaptive Test (PEDI-CAT) measured individuals’ self-determination (ie, autonomy, psychological empowerment, self-realization) and mobility skills, respectively. The Brazilian Economic Classification Criteria–2021 assessed family SES. ResultsAnalyses of mediating/moderating effects revealed that the influence of individuals’ mobility skills on their breadth of community participation was mediated by autonomy. Family SES moderated the indirect effect of mobility on community participation breadth through autonomy. When the model was adjusted for participants’ age, individuals with higher SES reported greater breadth in community participation than those from moderate and lower SES for all mobility levels. However, the magnitude of the differences among individuals of different SES levels diminished as mobility increased. ConclusionsThe mobility skills of youths with CP influence their community participation through autonomy. To foster greater engagement of these individuals in the community, rehabilitation professionals should focus not only on improvement of mobility skills but also on the promotion of self-determined behaviors, especially autonomy.

Early childhood developmental skills of children with tracheostomies and ventilators recently discharged home.

Infants who survive prematurity and critical illnesses but require ongoing invasive mechanical ventilation (IMV) are at high risk for developmental disabilities. However, their detailed developmental profiles are largely unknown. To understand the developmental profiles of a cohort of young children with IMV after hospital-to-home transition. Developmental testing was completed 1 month after hospital discharge to determine functioning within motor, cognitive, and communicative domains using (1) the Clinical Adaptive Test/Clinical Linguistic and Auditory Milestone Scale (CAT/CLAMS);(2) the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT); and (3) The Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS). To complement validated testing, semi-structured interviews were conducted with parents to understand perceived influences on neurodevelopment. Twenty children were evaluated at median (range) age 11 (5-27) months. Nearly half (45%) were male, 40% non-Hispanic Black, and 25% Hispanic. Sixteen(80%) children were survivors of prematurity. After gestational age correction, median (range) full-scale developmental quotients (DQ) were 69.5 (8-119): CAT DQ 62.5 (3-113) and CLAMS DQ 71.5 (12-125). Parents described that prolonged restrictionwithin the hospital crib away from caregivers, despite hospital therapists, impedes development. Home environments improve development primarily through increased time with parents, but also play outside of the crib. Onemonth after hospital discharge only 10% were receiving early intervention therapies. Children with IMV display wide ranges of neurodevelopmental skills with a majority experiencing substantial delays in motor, communicative, and adaptive functioning. The degree and cross-domain challenges highlight the need for targeted and timely therapeutic strategies.

Impact of Occupational Therapy on Self-Care After Selective Dorsal Rhizotomy Among Children With Cerebral Palsy.

Selective dorsal rhizotomy (SDR) is an established treatment for spastic cerebral palsy (CP). The effects and predictors of occupational therapy's benefit for self-care after SDR in children with CP have not been thoroughly investigated. To identify changes in self-care after occupational therapy post-SDR and determine whether changes were affected by age, Gross Motor Function Classification System (GMFCS) level, and number of occupational therapy dressing sessions. In this retrospective cohort study, we collected outcomes pre-SDR, at discharge, and at 1-yr follow-up. Paired t tests and regression analysis were performed. Commission on Accreditation of Rehabilitation Facilities-accredited pediatric inpatient rehabilitation facility. Seventy-three children (GMFCS Levels I-III, ages 4-17 yr) diagnosed with spastic CP who underwent SDR from 2014 to 2018. After having SDR, each child received an average of twice daily occupational therapy for an average of 37.3 days. The Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) and Functional Independence Measure for Children® (WeeFIM) were used to assess self-care performance. The mean WeeFIM dressing (upper and lower body) and mean PEDI-CAT daily activities scores from baseline to discharge and mean WeeFIM lower body dressing at 1-yr follow-up improved significantly. The improvement in lower body dressing correlated with GMFCS level and the number of occupational therapy dressing sessions. The improvement in upper and lower extremity dressing and PEDI-CAT daily activities scores suggests that inpatient occupational therapy post-SDR may provide benefits. What This Article Adds: Children diagnosed with CP may undergo surgical interventions to improve their ability to walk. This article demonstrates the benefit of occupational therapy services after SDR to improve upper and lower body dressing skills.

Maintenance of Functional Gains Following a Goal-Directed and FES-Assisted Cycling Program for Children With Cerebral Palsy.

This study investigated whether the functional improvements associated with functional electrical stimulation-assisted cycling, goal-directed training, and adapted cycling in children with cerebral palsy were maintained 8 weeks after the intervention ceased. The intervention (2 × 1-hour supervised sessions and 1-hour home program/week) ran for 8 weeks. Primary outcomes were the Gross Motor Function Measure (GMFM-88) and the Canadian Occupational Performance Measure (COPM). Secondary outcomes included the GMFM-66 and goal scores, 5 times sit-to-stand test (FTSTS), Participation and Environment Measure-Children and Youth (PEM-CY), Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT), and cycling power output (PO). Outcomes were assessed at baseline, 8 and 16 weeks. Twenty children participated (mean age = 10 years 3 months; SD = 2 years 11 months; Gross Motor Function Classification System II = 5, III = 6, and IV = 9). Improvements were retained above baseline at 16 weeks on the GMFM and COPM. Improvements in cycling PO, PEDI-CAT scores, PEM-CY environmental barriers and FTSTS were also retained. Functional improvements in children with cerebral palsy were retained 8 weeks post-intervention.

Functioning of Children and Adolescents with Cancer.

The aim of the current study was to evaluate the functioning of children and adolescents diagnosed with cancer. This was a cross-sectional, observational study, with children and adolescents diagnosed with cancer, from 2 to 18 years of age, of both sexes, invited to participate in the city of Juiz de Fora, Minas Gerais, Brazil. The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) questionnaire was applied to the caregivers to assess the functioning of the participants, in four domains: daily activities, mobility, social/cognitive, and responsibility. In total, 33 children and adolescents participated, of both sexes, with a mean age of 9.23 years. The results showed that in the mobility category, participants older than 8 years presented worse functioning (OR = 22.000, 95% CI = 3.415–141.733, p = 0.0001). Children older than 8 years of age and adolescents with different types of cancer showed a higher chance of presenting lower mobility than their normal peers of the same age and compared with children under 8 years of age. Understanding the impact of childhood cancer is important for the physiotherapist to determine treatment strategies for this population who live with dysfunctions left by the cancer treatment.

PICU Survivorship: Factors Affecting Feasibility and Cohort Retention in a Long-Term Outcomes Study.

Our understanding of longitudinal outcomes of Pediatric Intensive Care Unit (PICU) survivors is limited by the heterogeneity of follow-up intervals, populations, and outcomes assessed. We sought to demonstrate (1) the feasibility of longitudinal multidimensional outcome assessment and (2) methods to promote cohort retention. The objective of this presented study was to provide details of follow-up methodology in a PICU survivor cohort and not to present the outcomes at long-term follow-up for this cohort. We enrolled 152 children aged 0 to 17 years admitted to the PICU in a prospective longitudinal cohort study. We examined resource utilization, family impact of critical illness, and neurodevelopment using the PICU Outcomes Portfolio (POP) Survey which included a study-specific survey and validated tools: 1. Functional Status Scale, 2. Pediatric Evaluation of Disability Inventory Computer Adaptive Test, 3. Pediatric Quality of Life Inventory, 4. Strengths and Difficulties Questionnaire, and 5. Vanderbilt Assessment Scales for Attention Deficit-Hyperactivity Disorder. POP Survey completion rates were 89%, 78%, and 84% at 1, 3, and 6 months. Follow-up rates at 1, 2, and 3 years were 80%, 55%, and 43%. Implementing a longitudinal multidimensional outcome portfolio for PICU survivors is feasible within an urban, tertiary-care, academic hospital. Our attrition after one year demonstrates the long-term follow-up challenges in this population. Our findings inform ongoing efforts to implement core outcome sets after pediatric critical illness.

An Experiential Learning Activity Using an Online Judgment-Based Pediatric Functional Measure During Hybrid Instruction With Doctor of Physical Therapy Students

Background and Purpose. Mandated remote instruction provided an opportunity to introduce Doctor of Physical Therapy (DPT) students to online judgment-based measures used in clinical practice. In this method/model presentation, we report the operational feasibility, educational outcomes, and student satisfaction of a new learning activity providing entry-level DPT students with the experience to administer, score, and interpret the results of a pediatric, online, judgment-based functional assessment. Method/Model Description and Evaluation. Following introduction and demonstration, student pairs completed the web-based Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) using written case information detailing a child's typical functional mobility performance. Students then completed a course assignment to interpret test results, identify a complementary performance-based test, and develop intervention goals. Operational feasibility (time, technical, and economic needs), educational outcomes (PEDI-CAT scoring accuracy, assignment results), and student survey feedback were retrospectively evaluated. Outcomes. Within a 3-semester hour course, 2 hours (13%) were devoted to this activity, which was completed using a free test application and the university-supported learning management system. Student-generated PEDI-CAT normative scores were 100% consistent with instructor scores, and 43 of 46 student pairs (94%) generated scaled scores within the 95% confidence interval for the instructor's PEDI-CAT-generated score. Assignment results (mean grade = 45.7/50) indicated comprehension of material evidenced by test result interpretation and development of a physical therapist (PT) Evaluation and intervention goals. Student feedback was positive for the use of case-based learning and web-based test administration experience as a learning activity. Discussion and Conclusion. Use of a written case and an online judgment-based assessment proved feasible and successful for exposing entry-level DPT students to test administration, item content, normative and standard scoring differences, and developing a PT Evaluation statement and intervention goals setting. During mandated hybrid instruction, this learning activity addressed the curriculum objectives related to PT examination in preparation for clinical practice.

Analysis of Social Skills and Functional Characteristics of Adolescents with Cerebral Palsy

Abstract This study aims to describe the repertoire of adolescents with cerebral palsy in relation to social skills and to characterize their levels of gross motor function, communication, and functional activities. As an analytical observational study, 15 adolescents with cerebral palsy participated: five with articulated speech and ten without articulated speech. The instruments used were Identification Form; Social Skills Inventory for Students Without Articulated Speech; Social Skills Inventory for Adolescents; Expanded and Revised Gross Motor Function Classification System; Communication Function Classification System; and Pediatric Evaluation Disability Inventory Computer Adaptive Test - Adapted Brazilian Version. With quantitative and qualitative descriptive analysis, the results did not indicate a significant difference in the total score between groups, but the participants showed developmental deficits. Adolescents without articulated speech are more motor and communicatively compromised. Studies like this can contribute to the production of knowledge in the fields of Psychology, Special Education, and Social Skills.

Early detection of Australian Aboriginal and Torres Strait Islander infants at high risk of adverse neurodevelopmental outcomes at 12 months corrected age: LEAP-CP prospective cohort study protocol.

IntroductionNeurodevelopmental disorders (NDD), including cerebral palsy (CP), autism spectrum disorder (ASD) and foetal alcohol spectrum disorder (FASD), are characterised by impaired development of the early central nervous system, impacting cognitive and/or physical function. Early detection of NDD enables infants to be fast-tracked to early intervention services, optimising outcomes. Aboriginal and Torres Strait Islander infants may experience early life factors increasing their risk of neurodevelopmental vulnerability, which persist into later childhood, further compounding the health inequities experienced by First Nations peoples in Australia. The LEAP-CP prospective cohort study will investigate the efficacy of early screening programmes, implemented in Queensland, Australia to earlier identify Aboriginal and Torres Strait Islander infants who are ‘at risk’ of adverse neurodevelopmental outcomes (NDO) or NDD. Diagnostic accuracy and feasibility of early detection tools for identifying infants ‘at risk’ of a later diagnosis of adverse NDO or NDD will be determined.Methods and analysisAboriginal and/or Torres Strait Islander infants born in Queensland, Australia (birth years 2020–2022) will be invited to participate. Infants aged <9 months corrected age (CA) will undergo screening using the (1) General Movements Assessment (GMA); (2) Hammersmith Infant Neurological Examination (HINE); (3) Rapid Neurodevelopmental Assessment (RNDA) and (4) Ages and Stages Questionnaire-Aboriginal adaptation (ASQ-TRAK). Developmental outcomes at 12 months CA will be determined for: (1) neurological (HINE); (2) motor (Peabody Developmental Motor Scales 2); (3) cognitive and communication (Bayley Scales of Infant Development III); (4) functional capabilities (Paediatric Evaluation of Disability Inventory-Computer Adaptive Test) and (5) behaviour (Infant Toddler Social and Emotional Assessment). Infants will be classified as typically developing or ‘at risk’ of an adverse NDO and/or specific NDD based on symptomology using developmental and diagnostic outcomes for (1) CP (2) ASD and (3) FASD. The effects of perinatal, social and environmental factors, caregiver mental health and clinical neuroimaging on NDOs will be investigated.Ethics and disseminationEthics approval has been granted by appropriate Queensland ethics committees; Far North Queensland Health Research Ethics Committee (HREC/2019/QCH/50533 (Sep ver 2)-1370), the Townsville HHS Human Research Ethics Committee (HREC/QTHS/56008), the University of Queensland Medical Research Ethics Committee (2020000185/HREC/2019/QCH/50533) and the Children’s Health Queensland HHS Human Research Ethics Committee (HREC/20/QCHQ/63906) with governance and support from local First Nations communities. Findings from this study will be disseminated via peer-reviewed publications and conference presentations.Trial registration numberACTRN12619000969167.

Cross-sectional, quantitative analysis of motor function in females with HNRNPH2-related disorder

AimsTo describe the gross motor function of individuals with HNRNPH2-related disorder (OMIM 300986, Mental Retardation, X-linked, Syndrome, Bain Type; MRXSB) and determine the associations between clinician-measured motor function and caregiver-reported mobility scores. MethodsDevelopmental histories of 17 female participants with HNRNPH2-related disorder (mean age 11.2 years, range 2.7–37.1 years) with various genotypes within and adjacent to the nuclear localization sequence (NLS) were analyzed. Participants performed the Gross Motor Function Measure-88 (GMFM-88) and caregivers completed developmental histories and the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT). ResultsAll participants had measurable and quantifiable motor impairments. A strong positive correlation between the clinician-measured GMFM-88 total score and the caregiver-reported PEDI-CAT mobility domain score was established. Motor deficits were noted more often in individuals who were nonverbal. The 2 participants with genotypes adjacent to the NLS appear to have milder motor phenotypes. ConclusionsThe GMFM-88 and PEDI-CAT are useful and feasible measures of mobility in individuals with HNRNPH2-related disorders. Convergent validity was established between the clinician-measured GMFM-88 raw scores and caregiver-reported PEDI-CAT mobility domain scores. Factors including verbal status and genotype may impact motor abilities.

School Readiness in Children Born

The objective of this study was to determine whether school readiness differs between children born <30 weeks' gestation who are classified as at risk for developmental coordination disorder (DCD) and those who are not. This study was a prospective cohort study of children born <30 weeks' gestation. Children were classified as at risk for DCD at a corrected age of 4 to 5 years if they scored <16th centile on the Movement Assessment Battery for Children-Second Edition (MABC-2), had a full scale IQ score of ≥80 on the Wechsler Preschool and Primary Scale of Intelligence-Fourth Edition (WPPSI-IV), and had no cerebral palsy. Children were assessed on 4 school readiness domains: (1) health/physical development [Physical Health domain of Pediatric Quality of Life Inventory (PedsQL), Pediatric Evaluation of Disability Inventory Computer Adaptive Test, and Little Developmental Coordination Disorder Questionnaire], (2) social-emotional development (Strengths and Difficulties Questionnaire and PedsQL psychosocial domains), (3) cognitive skills/general knowledge (WPPSI-IV), and (4) language skills (WPPSI-IV). Of 123 children assessed, 16 were ineligible (IQ < 80 or cerebral palsy: n = 15; incomplete MABC-2: n = 1); 28 of 107 (26%) eligible children were at risk for DCD. Children at risk for DCD had poorer performance on all school readiness domains, with group differences of more than 0.4 SD in health/physical development, social-emotional development, and language skills and up to 0.8 SD for cognitive skills/general knowledge compared with those not at risk of DCD. Being at risk for DCD in children born <30 weeks' gestation is associated with challenges in multiple school readiness domains, not only the health/physical domain.