Stability of the Motor Optimality Score Revised (MOS-R) in medically complex infants.

BACKGROUND: The Motor Optimality Score-Revised (MOS-R) is a clinical test of infant spontaneous movement at 3-5 months of age and has been associated with neurodevelopmental outcomes in infants with medical complexity. However the stability of the MOS-R tested at different developmental ages is not yet known. AIM: To determine if the repeated scoring of the MOS-R remained consistent when tested at two developmental ages in young infants. STUDY DESIGN: In this prospective cohort study, infants were tested twice with the MOS-R between 12 and 13 weeks corrected age (CA) and 14-16 weeks CA. Bland Altman Plots were used to calculate agreement between the scores. Infants were grouped as having higher or lower medical complexity. MOS-R threshold scores were analyzed to assess changes over time within each group using Fisher's exact test. SUBJECTS: 85 infants with history of hospitalization in a neonatal intensive care unit (NICU). RESULTS: The MOS-R scores had a high agreement with negligible bias (0.058) between timepoints (95 % CI -1.10, 1.22). Using a MOS-R cut point of 19, infants with higher medical complexity were more likely to change groups between timepoints than infants with lower medical complexity (p = 0.008), but this was not significantly different using cut points of 20 or 21. CONCLUSION: The MOS-R scores were stable when measured repeatedly in infants who were hospitalized in a NICU. Infants with high medical complexity had less stable MOS-R scores using certain cut points than infants with lower medical complexity.

Comparative Study of the Pain, Function, and Biomarkers of Joint Disease in the Transition to Adulthood in Individuals With and Without Cerebral Palsy.

BACKGROUND: Biomarkers have potential to identify early signs of joint disease. This study compared joint pain and function in adolescents and young adults with cerebral palsy compared with individuals without. METHODS: This cross-sectional study compared individuals with cerebral palsy ( n = 20), aged 13-30 yrs with Gross Motor Function Classification System I-III and age-matched individuals without cerebral palsy ( n = 20). Knee and hip joint pain measured using Numeric Pain Rating Scale and Knee injury and Osteoarthritis Outcome Score and Hip dysfunction and Osteoarthritis Outcome Score surveys. Objective strength and function were also measured. Biomarkers for tissue turnover (serum cartilage oligomeric matrix protein, urinary C-terminal crosslinked telopeptide of type II collagen) and cartilage degradation (serum matrix metalloproteinase 1, matrix metalloproteinase 3) were measured in blood and urinary samples. FINDINGS: Individuals with cerebral palsy had increased knee and hip joint pain, reduced leg strength, reduced walking and standing speeds, and ability to carry out activities of daily living ( P < 0.005) compared with controls. They also had higher serum matrix metalloproteinase 1 ( P < 0.001) and urinary C-terminal crosslinked telopeptide of type II collagen levels ( P < 0.05). Individuals with cerebral palsy who were Gross Motor Function Classification System I and II demonstrated reduced hip joint pain ( P = 0.02) and higher matrix metalloproteinase 1 levels ( P = 0.02) compared with Gross Motor Function Classification System III. INTERPRETATION: Individuals with cerebral palsy with less severe mobility deficits had higher matrix metalloproteinase 1 levels likely due to more prolonged exposure to abnormal joint loading forces but experienced less joint pain.

Supportive mobility devices across the lifespan in Cerebral Palsy: a modified Delphi study to establish stakeholder research priorities.

PURPOSE: The aim of this study was to co-develop research priorities and identify meaningful research questions with a diverse group of stakeholders representing the CP community for implementation in subsequent research activities. The overarching aim of this research was to 1) Understand the mobility experiences, supported mobility device (SMD) use, and desired participation outcomes of people with cerebral palsy (CP) across the lifespan; and 2) Describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes. MATERIALS AND METHODS: A three-round modified Delphi consensus study was conducted with a stakeholder advisory panel consisting of three adults with CP, two parents of children with CP, and four SMD providers. RESULTS: The advisory panel identified 11 unique topical categories focused on SMD selection and use, stratified by age group and stakeholder role. Questions or statements within each category were ranked, and top consensus and concordance statements were retained, reviewed, and refined for use in a co-developed focus group guide. Priorities were identified in three main groupings: (1) Age/GMFCS level/Environment-related; (2) Individual with CP/Caregiver need-related; and (3) Clinician/provider partnership-related. DISCUSSION: A modified Delphi process was a useful tool for stakeholders in co-developing research priorities related to SMD use across the lifespan. Drawing on the lived expertise of stakeholders is important in facilitating improved research translation in the CP community.

IMPLICATIONS FOR REHABILITATIONRoutine incorporation of stakeholder voices in research and clinical practice can critically inform teams without lived experience of cerebral palsy to co-create meaningful priorities and focus areas for supportive mobility device provision and use from a lived perspective.Stakeholders identified that access to trial equipment, device adaptability, provider knowledge and training, and a focus on the presence or absence of shared decision-making are among the top research priorities when engaging with individuals with cerebral palsy who use supportive mobility devices.Given the heterogeneous nature of cerebral palsy and evolving mobility needs for individuals across different Gross Motor Function Classification System levels, a lifespan perspective and future-oriented approach to supportive mobility device research and clinical practice are crucial to address device design and implementation as well as barriers to quality provision practices.

Robotic Ankle Training Improves Sensorimotor Functions in Children with Cerebral Palsy-A Pilot Study.

Children with cerebral palsy (CP) have sensorimotor impairments including weakness, spasticity, reduced motor control and sensory deficits. Proprioceptive dysfunction compounds the decreased motor control and mobility. The aims of this paper were to (1) examine proprioceptive deficit of lower extremities of children with CP; (2) study improvement in proprioception and clinical impairments through robotic ankle training (RAT). Eight children with CP participated in a 6-week RAT with pre and post ankle proprioception, clinical, biomechanical assessment compared to the assessment of eight typically developing children (TDC). The children with CP participated in passive stretching (20 min/session) and active movement training (20 to 30 min/session) using an ankle rehabilitation robot (3 sessions/week over 6 weeks, total of 18 sessions). Proprioceptive acuity measured as the plantar and dorsi-flexion motion at which the children recognized the movement was 3.60 ± 2.28° in dorsiflexion and -3.72 ± 2.38° in plantar flexion for the CP group, inferior to that of the TDC group's 0.94 ± 0.43° in dorsiflexion (p = 0.027) and -0.86 ± 0.48° in plantar flexion (p = 0.012). After training, ankle motor and sensory functions were improved in children with CP, with the dorsiflexion strength increased from 3.61 ± 3.75 Nm to 7.48 ± 2.75 Nm (p = 0.018) and plantar flexion strength increased from -11.89 ± 7.04 Nm to -17.61 ± 6.81 Nm after training (p = 0.043). The dorsiflexion AROM increased from 5.58 ± 13.18° to 15.97 ± 11.21° (p = 0.028). The proprioceptive acuity showed a trend of decline to 3.08 ± 2.07° in dorsiflexion and to -2.59 ± 1.94° in plantar flexion (p > 0.05). The RAT is a promising intervention for children with CP to improve sensorimotor functions of the lower extremities. It provided an interactive and motivating training to engage children with CP in rehabilitation to improve clinical and sensorimotor performance.

"That's frustrating": Perceptions of ankle foot orthosis provision, use, and needs among people with cerebral palsy and caregivers.

BACKGROUND: Cerebral palsy (CP) affects roughly 3 per 1000 births in the United States and is the most common pediatric developmental motor disability. Ankle foot orthoses (AFOs) are commonly prescribed to provide support and improve function for individuals with CP. OBJECTIVES: The study objective was to evaluate the lived experiences of individuals with CP and their caregivers regarding AFO access, use, and priorities. We examined experiences around the perceived purpose of AFOs, provision process, current barriers to use, and ideas for future AFO design. STUDY DESIGN: Secondary qualitative data analysis. METHODS: Secondary data analysis was performed on semistructured focus groups that included 68 individuals with CP and 74 caregivers. Of the focus group participants, 66 mentioned AFOs (16 individuals with CP and 50 caregivers). Deidentified transcripts were analyzed using inductive coding, and the codes were consolidated into themes. RESULTS: Four themes emerged: 1) AFO provision is a confusing and lengthy process, 2) participants want more information during AFO provision, 3) AFOs are uncomfortable and difficult to use, and 4) AFOs can benefit mobility and independence. Caregivers and individuals with CP recommended ideas such as 3D printing orthoses and education for caregivers on design choices to improve AFO design and provision. CONCLUSIONS: Individuals with CP and their caregivers found the AFO provision process frustrating but highlight that AFOs support mobility and participation. Further opportunities exist to support function and participation of people with CP by streamlining AFO provision processes, creating educational materials, and improving AFO design for comfort and ease of use.

Adult outcomes for children who sustained firearm-related spinal cord injuries.

OBJECTIVE: To describe the adult functional, participation, education, employment, and quality of life outcomes of children who incurred spinal cord injury (SCI) as the result of gun injuries vs. non-violent etiologies, as well as their utilization of health services. DESIGN: Retrospective-cohort study. Eligibility criteria were current age at least 18 years, at least 5 years after SCI, and injury prior to 19 years of age. After enrolling the gun injury group, we matched individuals with non-violent etiologies from the Midwest Regional SCI Model System database to the gun injury group's demographic characteristics. Adult outcomes included education level, employment, income, involvement with the criminal justice system, quality of life indicators using PROMIS and SCI-QOL item banks, and utilization of health services. PARTICIPANTS: Twenty-six participants with gun injury SCI matched with 19 participants with non-violent etiologies. RESULTS: Average age at injury was 15 years and current age was 44 years for both cohorts. Individuals from racial minority groups were over-represented in the gun injury cohort. The gun-injury cohort had lower educational attainment. Though employment rates were similar, the gun injury group had a lower income level. Both groups endorsed high average levels of function and quality of life on the PROMIS and SCI-QOL short forms. CONCLUSIONS: SCI etiology reflects racial characteristics of the sample and is associated with subsequent educational attainment and income. Rehabilitation planning should consider gun injury etiology in children not as a characteristic that determines a poor outcome, but as a risk factor for reduced educational attainment and lifetime income.

Relationship of anthropometric measurements and percent body fat mass to cardiovascular disease risk factors in adults with cerebral palsy.

INTRODUCTION: Adults with cerebral palsy (CP) face high morbidity from cardiovascular disease (CVD). Of concern, classic screening parameters are inconsistent in identifying CVD risk in this population. Dual-energy x-ray absorptiometry (DEXA), which provides direct measurements of fat mass (FM), may be an alternative screening method. OBJECTIVE: To evaluate whether FM measurement with DEXA is feasible in screening adults with CP and compare FM and anthropometric measures to CVD risk factors. DESIGN: Cross-sectional study. SETTING: Outpatient rehabilitation hospital. PARTICIPANTS: Forty-seven adults with CP. MAIN OUTCOME MEASURES: Weight, height, waist circumference (WC), and hip circumference (HC) were measured; waist-to-hip ratio (WHR) and body mass index (BMI) were calculated. Blood pressure (BP), FM by DEXA, hemoglobin A1c (HbA1c), and lipid measurements were obtained. Logistic regression models investigated odds ratios (ORs) and 95% confidence intervals (CIs) between anthropometric measurements/FM and CVD risk factors; correlations were assessed using Pearson correlation coefficients. RESULTS: Elevated BP or hypertension diagnosis was present in 47.8%; HbA1c ≥5.7% in 22.2%; and high-density lipoprotein (HDL) level below optimal for 33.3%. DEXA FM was obtained in 29 of 47 participants, as surgical metal and positioning limited many studies. Excess FM was noted in 75.9% versus 41.3% overweight/obese by BMI. WC correlated with HbA1c (r = 0.46, p = .002), HDL (r = -0.36, p = .018), and triglyceride (TG) levels (r = 0.30, p = .045); however at-risk WC values were associated only with odds of elevated HbA1c (OR 8.53, 95% CI 1.46-50.05; p = .018). HC correlated with HbA1c levels (r = 0.38, p = .011) and systolic BPs (r = 0.35, p = .019); similarly, ORs for elevated HC were weakly associated with elevated HbA1c and BPs (OR 1.08, 95% CI 1.01-1.16; p = .024 and OR 1.07, 95% CI 1.01-1.14; p = .024, respectively). WHR correlated with TGs; however few TG levels were elevated. FM measures were not associated with at-risk lab values or BPs. CONCLUSIONS: DEXA FM measurements may not be feasible for CVD screening in many adults with CP. Although CVD risk factors are frequently present, anthropometric measurements commonly used for general population screening may not translate well to adults with CP.

Spasticity-related pain in children/adolescents with cerebral palsy. Part 2: IncobotulinumtoxinA efficacy results from a pooled analysis.

PURPOSE: This pooled analysis of data from three Phase 3 studies investigated the effects of incobotulinumtoxinA on spasticity-related pain (SRP) in children/adolescents with uni-/bilateral cerebral palsy (CP). METHODS: Children/adolescents (ambulant and non-ambulant) were evaluated for SRP on increasingly difficult activities/tasks 4 weeks after each of four incobotulinumtoxinA injection cycles (ICs) using the Questionnaire on Pain caused by Spasticity (QPS; six modules specific to lower limb [LL] or upper limb [UL] spasticity and respondent type [child/adolescent, interviewer, or parent/caregiver]). IncobotulinumtoxinA doses were personalized, with all doses pooled for analysis. RESULTS: QPS key item responses were available from 331 and 155 children/adolescents with LL- and UL-spasticity, respectively, and 841/444 (LL/UL) of their parents/caregivers. IncobotulinumtoxinA efficacy was evident with the first IC. Efficacy was sustained and became more robust with further subsequent ICs. By Week 4 of the last (i.e. fourth) IC, 33.8-53.3% of children/adolescents reported complete SRP relief from their baseline pain for respective QPS items. Children/adolescents reported reductions in mean LL SRP intensity at levels that surpassed clinically meaningful thresholds. Similarly, parents/caregivers observed complete SRP relief and less frequent SRP with incobotulinumtoxinA. Similar results were found for UL SRP. CONCLUSION: These findings indicate that incobotulinumtoxinA could bring considerable benefit to children/adolescents with spasticity by reducing SRP, even during strenuous activities.

Measuring the inch stones for progress: Gross motor function in the developmental and epileptic encephalopathies.

OBJECTIVE: Developmental and epileptic encephalopathies (DEE) entail moderate to profound impairments in gross motor skills and mobility, which are poorly quantified with clinical outcomes assessments (COA) used in neuro-typical populations. We studied the motor domain of the Adaptive Behavior Assessment System-3 for ages 0-5 years (ABAS) used outside of its intended age range with a focus on raw scores. METHODS: In a cross-sectional survey, 117 parents of children with a variety of DEEs (ages 1-35 years, median = 9) completed the motor domain section of the ABAS. Floor and ceiling effects and associations with epilepsy-related factors were assessed with appropriate parametric and nonparametric statistical techniques. The sensitivity of the ABAS and additional measures of mobility borrowed from the cerebral palsy literature (Functional Activities Questionnaire (FAQ-22) walking level (FAQ-WL)) to different levels of the Functional Mobility Scale was determined. RESULTS: ABAS motor scores corresponded to a median age equivalent of 20.5 months (Inter-Quartile Range (IQR) 8-34). Most raw scores corresponded to standardized scores > 2 standard deviations below the ABAS standardization sample mean. ABAS raw scores demonstrated minimal floor and ceiling effects (<5%). In linear regression models, scores increased with age under 6 years (p < 0.0001) but flattened out thereafter. Scores varied substantially by DEE group (p < 0.001) and decreased with higher convulsive seizure frequency (<0.0001) and number of seizure medications (p < 0.001). ABAS and other motor scores were sensitive to important differences in mobility as represented by the FMS at 5 yards. Further, they correlated with declines in mobility function from 5 to 500 yards. SIGNIFICANCE: An out-of-range COA with raw scores may provide a measure of motor ability and mobility sensitive within the range of moderate to profound impairment seen in patients with DEE. This approach could shorten the time to appropriate COA development and ensure timely clinical trial readiness for novel therapies for rare DEEs.

Safety Profile and Lack of Immunogenicity of IncobotulinumtoxinA in Pediatric Spasticity and Sialorrhea: A Pooled Analysis.

IncobotulinumtoxinA, a pure botulinumtoxinA formulation, is free of accessory proteins. This analysis provides pooled safety data from phase 3 trials of children/adolescents (2-17 years), investigating incobotulinumtoxinA for the treatment of spasticity associated with cerebral palsy (at doses ≤20 U/kg (max. 500 U) per injection cycle (IC) for ≤6 ICs; three trials) or sialorrhea associated with neurologic disorders (at total doses of 20-75 U per IC for ≤4 ICs; one trial) for ≤96 weeks. Safety endpoints included the incidences of different types of treatment-emergent adverse events (TEAEs) and immunogenicity. IncobotulinumtoxinA dose groups were combined. Of 1159 patients (mean age 7.3 years, 60.4% males) treated with incobotulinumtoxinA, 3.9% experienced treatment-related TEAEs, with the most common being injection site reactions (1.3%) (both indications), muscular weakness (0.7%) (spasticity), and dysphagia (0.2%) (sialorrhea). Two patients (0.2%) experienced a treatment-related treatment-emergent serious adverse event, and 0.3% discontinued the study due to treatment-related TEAEs. No botulinumtoxinA-naïve patients developed neutralizing antibodies (NAbs) after incobotulinumtoxinA. All children/adolescents with known pre-treatment status and testing positive for Nabs at final visit (n = 7) were previously treated with a botulinumtoxinA other than incobotulinumtoxinA. IncobotulinumtoxinA was shown to be safe, with very few treatment-related TEAEs in a large, diverse cohort of children/adolescents with chronic conditions requiring long-term treatment and was without new NAb formation in treatment-naïve patients.

Development and Validation of a Deep Learning Method to Predict Cerebral Palsy From Spontaneous Movements in Infants at High Risk.

Importance: Early identification of cerebral palsy (CP) is important for early intervention, yet expert-based assessments do not permit widespread use, and conventional machine learning alternatives lack validity. Objective: To develop and assess the external validity of a novel deep learning-based method to predict CP based on videos of infants' spontaneous movements at 9 to 18 weeks' corrected age. Design, Setting, and Participants: This prognostic study of a deep learning-based method to predict CP at a corrected age of 12 to 89 months involved 557 infants with a high risk of perinatal brain injury who were enrolled in previous studies conducted at 13 hospitals in Belgium, India, Norway, and the US between September 10, 2001, and October 25, 2018. Analysis was performed between February 11, 2020, and September 23, 2021. Included infants had available video recorded during the fidgety movement period from 9 to 18 weeks' corrected age, available classifications of fidgety movements ascertained by the general movement assessment (GMA) tool, and available data on CP status at 12 months' corrected age or older. A total of 418 infants (75.0%) were randomly assigned to the model development (training and internal validation) sample, and 139 (25.0%) were randomly assigned to the external validation sample (1 test set). Exposure: Video recording of spontaneous movements. Main Outcomes and Measures: The primary outcome was prediction of CP. Deep learning-based prediction of CP was performed automatically from a single video. Secondary outcomes included prediction of associated functional level and CP subtype. Sensitivity, specificity, positive and negative predictive values, and accuracy were assessed. Results: Among 557 infants (310 [55.7%] male), the median (IQR) corrected age was 12 (11-13) weeks at assessment, and 84 infants (15.1%) were diagnosed with CP at a mean (SD) age of 3.4 (1.7) years. Data on race and ethnicity were not reported because previous studies (from which the infant samples were derived) used different study protocols with inconsistent collection of these data. On external validation, the deep learning-based CP prediction method had sensitivity of 71.4% (95% CI, 47.8%-88.7%), specificity of 94.1% (95% CI, 88.2%-97.6%), positive predictive value of 68.2% (95% CI, 45.1%-86.1%), and negative predictive value of 94.9% (95% CI, 89.2%-98.1%). In comparison, the GMA tool had sensitivity of 70.0% (95% CI, 45.7%-88.1%), specificity of 88.7% (95% CI, 81.5%-93.8%), positive predictive value of 51.9% (95% CI, 32.0%-71.3%), and negative predictive value of 94.4% (95% CI, 88.3%-97.9%). The deep learning method achieved higher accuracy than the conventional machine learning method (90.6% [95% CI, 84.5%-94.9%] vs 72.7% [95% CI, 64.5%-79.9%]; P < .001), but no significant improvement in accuracy was observed compared with the GMA tool (85.9%; 95% CI, 78.9%-91.3%; P = .11). The deep learning prediction model had higher sensitivity among infants with nonambulatory CP (100%; 95% CI, 63.1%-100%) vs ambulatory CP (58.3%; 95% CI, 27.7%-84.8%; P = .02) and spastic bilateral CP (92.3%; 95% CI, 64.0%-99.8%) vs spastic unilateral CP (42.9%; 95% CI, 9.9%-81.6%; P < .001). Conclusions and Relevance: In this prognostic study, a deep learning-based method for predicting CP at 9 to 18 weeks' corrected age had predictive accuracy on external validation, which suggests possible avenues for using deep learning-based software to provide objective early detection of CP in clinical settings.

The next generation of peer review.

Peer review is an important process that produces the evidence-based medicine that guides the standards by which we provide care. We all have a role to contribute to the advancement of our field through involvement in this process. Opportunities and guidance to the next generation of reviewers is essential to continue to move our field forward and is supported by the JPRM Residents and Fellows Program.

Physical and Environmental Barriers to Mobility and Participation in Children With Medical Complexity: A Qualitative Study.

This qualitative study evaluated barriers and facilitators to mobility in the homes of children with medical complexity (CMC) and the subsequent impact on CMC and their families. Eighteen caregivers of CMC were interviewed. Parents described that accessibility barriers impaired delivery of care at home and impacted the child's participation in family life. The most inaccessible areas were stairs and bathrooms. Mobility and transfers became more difficult as children grew larger. Parents and children sustained injuries from performance of activities of daily living (ADLs). When available, durable medical equipment (DME) and home modifications improved home access and typically were funded using insurance and state Title V funds. However, parents reported that larger home modifications, such as bathroom modifications, were cost prohibitive. A pediatrician's inquiry about mobility barriers may reveal crucial information about delivery of home care to CMC. CMC may be referred to rehabilitation specialists to address mobility needs.

Supportive mobility device use across the life span by individuals with cerebral palsy: A qualitative study.

AIM: To understand the mobility experiences, supportive mobility device (SMD) use, and desired participation outcomes of individuals with cerebral palsy (CP) across the life span, and describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes. METHOD: In the second phase of an overarching study, focus groups were conducted with 164 participants (68 individuals with CP; 32 females, 36 males; mean age 17y 8mo, SD 11y 11mo, range 3-68y), 74 caregivers (50 females, 24 males), and 22 healthcare providers (14 females, eight males) across four US cities. Sessions were audio-recorded, transcribed, and analysed using constant comparison. RESULTS: Six themes emerged. Five presented across all stakeholder groups: (1) the system is broken; (2) equipment is simultaneously liberating and restricting; (3) adaptation across the life span; (4) designed for transport, not for living; and (5) sharing our stories and sharing resources. One theme (theme 6) was specific to healthcare providers: caught in the middle. INTERPRETATION: This qualitative study underscores the simultaneous value and frustration associated with SMDs as described by the community with CP, and recognition among all stakeholders of the need to improve connections and resource networks within the community with CP to improve SMD design and provision processes across device types and across the life span for individuals with CP. WHAT THIS PAPER ADDS: Supportive mobility devices (SMDs) were most often equated with freedom, participation, and independence. Frustration with SMDs across the life span persisted with regard to design, function, cost, and maintenance. Stakeholders in the community with cerebral palsy are seeking greater networking and resource sharing to enhance SMD provision processes. Access to appropriate SMDs across the life span and the need for system improvement are critical.

OBJETIVO: Compreender as experiências de mobilidade, o uso de dispositivos de mobilidade de apoio e os resultados de participação desejados de pessoas com paralisia cerebral (PC) ao longo da vida e descrever como as perspectivas de cuidados de reabilitação e recursos profissionais podem influenciar os processos de tomada de decisão de mobilidade e resultados. MÉTODO: Na segunda fase de um estudo abrangente, foram realizados grupos focais com 164 participantes (68 pessoas com PC; 32 mulheres, 36 homens; idade média de 17 anos e 8 meses, DP 11 anos e 11 meses, faixa de 3 a 68 anos), 74 cuidadores (50 mulheres, 24 homens) e 22 profissionais de saúde (14 mulheres, oito homens) em quatro cidades dos EUA. As sessões foram gravadas em áudio, transcritas e analisadas por meio de comparação constante. RESULTADOS: Emergiram seis temas. Cinco apresentados em todos os grupos de partes interessadas: (1) o sistema está quebrado; (2) o equipamento está simultaneamente liberando e restringindo; (3) adaptação ao longo da vida; (4) projetado para transporte, não para a vida; e (5) compartilhar nossas histórias e recursos. Um tema (tema 6) era específico para os profissionais de saúde: "pego no meio". INTERPRETAÇÃO: Este estudo qualitativo ressalta o valor e a frustração simultâneos associados aos dispositivos de mobilidade de apoio, conforme descrito pela comunidade com CP, e o reconhecimento entre todas as partes interessadas da necessidade de melhorar as conexões e redes de recursos dentro da comunidade com CP para melhorar os processos de projeto e fornecimento de SMD em todos os dispositivos tipos e ao longo da vida para pessoas com PC.

Use of Frame Running for Adolescent Athletes With Movement Challenges: Study of Feasibility to Support Health and Participation.

Children and adolescents with movement challenges have lower instances of physical activity and longer time spent in sedentary behaviors compared to children with typical development. The purpose of this study was to investigate the feasibility of a sport-based youth development running program modified for accessibility using a running frame and to evaluate initial evidence for its efficacy on endurance and functional strength. We completed four 8-week seasons (2-3 times per week) in a combination of 3 different formats by season: online remote (winter and spring), in person in a community park (winter, spring, and summer), and in person in an afterschool setting (autumn). Participants included 13 athletes (average age 14.46 years, range 8-18 years, 4 females), who collectively completed 22 season blocks. Diagnoses included cerebral palsy (n = 10), arthrogryposis (n = 1), Dandy-Walker malformation (n = 1), and transverse myelitis (n = 1). In all settings, participants engaged in activities of social emotional learning, cardiovascular endurance, and muscle strengthening in a progressive manner. We found that each season format was feasible to administer with high attendance rates (76-97%) and positive qualitative feedback from athletes. In addition, promising average improvements in motor performance across a season (6 min frame running test, 170 m; timed up and go test, 8.44 s; five times sit to stand, 14.1 s; and Goal Attainment Scale, t = 65.01) were identified in the pilot data of this non-randomized cohort. Training in any of the proposed settings with an overall goal of completing a community race in a running frame is feasible and warrants further study.

Spasticity-related pain in children/adolescents with cerebral palsy. Part 1: Prevalence and clinical characteristics from a pooled analysis.

PURPOSE: A large prospective database from three Phase 3 studies allowed the study of spasticity-related pain (SRP) in pediatric cerebral palsy (CP). METHODS: Baseline (pretreatment) SRP data occurring during different activities in children/adolescents (aged 2-17 years, ambulant/nonambulant) with uni-/bilateral spastic CP was obtained using the Questionnaire on Pain caused by Spasticity (QPS; six modules specific to spasticity level [lower limb (LL) or upper limb (UL)] and type of respondent [child/adolescent, interviewer, or parent/caregiver]). RESULTS: At baseline, 331 children/adolescents with LL- and 155 with UL-spasticity completed at least one key item of their modules; LL/UL QPS modules of parent/caregivers were at least partially completed (key items) by 841/444 parents/caregivers. SRP with at least one activity at baseline was self-reported in 81.9% /69.7% (LLs/ULs) of children/adolescents with spasticity. Parents/caregivers observed LL/UL SRP behaviors in 85.9% /77.7% of their children, with multiple body regions affected. SRP negatively affected the great majority of the children in various ways. Child/adolescent-reported mean SRP intensity and parent/caregiver-observed mean SRP behavior frequencies were higher for LLs than ULs, and the level of SRP increased with more physically demanding activities. CONCLUSION: These data suggest SRP is more common and intense in pediatric CP than generally thought, emphasizing the need for effective, long-term pain management.

Association Between Daily Physical Activity and Clinical Anthropomorphic Measures in Adults With Cerebral Palsy.

OBJECTIVE: To describe the relationship between activity level and cardiovascular risk measures as well as describe general activity patterns of adults with cerebral palsy. DESIGN: Cross-sectional. SETTING: Academic outpatient rehabilitation clinic. PARTICIPANTS: Adults with cerebral palsy (N=47). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Gross Motor Functional Classification System (GMFCS) level was determined by validated self-report questionnaire. Activity (daily step count, walk time, sitting time, standing time, and transitional movements) over 6 days recorded using an activPAL. Weight, body mass index (BMI), and waist-to-hip ratio were measured. Bivariate relationships between anthropomorphic and activity measures were assessed. RESULTS: Thirty-eight participants completed all measurements. Nine were excluded because of incomplete activPAL data. The median age was 28.50 years (interquartile range [IQR]=24.25-47.00), range 18-77 years. Participants' GMFCS levels were I: 13%; II: 16%; III: 21%; IV: 34%; and V: 16%. Median steps/day for GMFCS I/II participants were 5258.3 (IQR=3606.8-6634.7), and median steps/day were 1681.3 (IQR=657.2-2751.8) and 30.0 (IQR=6.8-54.2) for GMFCS level III and IV/V participants, respectively. Significantly greater steps/day were found for GMFCS I/II or III participants compared to those GMFCS IV/V (P<.001 and P=.0074, respectively). In addition, 60.5% of the subjects had a BMI in the normal range, 10.5% were obese, 23.6% were overweight, and 5.3% were underweight. For subjects with GMFCS I/II, the Spearman's rank correlation coefficient for time standing and waist circumference was -0.73 (0.01). GMFCS III and GMFCS IV/V participants had respective correlations of -0.16 (0.71) and -0.01 (0.98). For subjects with GMFCS I/II, the Spearman's rank correlation coefficient for standing time and BMI was -0.55 (P=.08). For the GMFCS III and GMFCS IV/V groups the respective correlations were -0.19 (0.67) and 0.00 (1.00). CONCLUSIONS: Subjects with GMFCS level I or II who engaged in more activity tended to have more favorable anthropometric profiles. Subjects with GMFCS level III, IV, or V did not have a similar trend. Our findings suggest factors beyond activity patterns affect anthropometrics to a greater degree in those with higher GMFCS levels.

Degree of ventriculomegaly predicts school-aged functional outcomes in preterm infants with intraventricular hemorrhage.

BACKGROUND: Greater ventriculomegaly in preterm infants with intraventricular hemorrhage (IVH) has been associated with worse neurodevelopmental outcomes in infancy. We aim to explore the relationship between ventriculomegaly and school-age functional outcome. METHODS: Retrospective review of preterm infants with Grade III/IV IVH from 2006 to 2020. Frontal-occipital horn ratio (FOHR) was measured on imaging throughout hospitalization and last available follow-up scan. Pediatric Cerebral Performance Category (PCPC) scale was used to assess functional outcome at ≥4 years. Ordinal logistic regression was used to determine the relationship between functional outcome and FOHR at the time of Neurosurgery consult, neurosurgical intervention, and last follow-up scan while adjusting for confounders. RESULTS: One hundred and thirty-four infants had Grade III/IV IVH. FOHR at consult was 0.62 ± 0.12 and 0.75 ± 0.13 at first intervention (p < 0.001). On univariable analysis, maximum FOHR, FOHR at the last follow-up scan, and at Neurosurgery consult predicted worse functional outcome (p < 0.01). PVL, longer hospital admission, and gastrotomy/tracheostomy tube also predicted worse outcome (p < 0.05). PVL, maximum FOHR, and FOHR at consult remained significant on multivariable analysis (p < 0.05). Maximum FOHR of 0.61 is a fair predictor for moderate-severe impairment (AUC 75%, 95% CI: 62-87%). CONCLUSIONS: Greater ventricular dilatation and PVL were independently associated with worse functional outcome in Grade III/IV IVH regardless of neurosurgical intervention. IMPACT: Ventriculomegaly measured by frontal-occipital horn ratio (FOHR) and periventricular leukomalacia are independent correlates of school-age functional outcomes in preterm infants with intraventricular hemorrhage regardless of need for neurosurgical intervention. These findings extend the known association between ventriculomegaly and neurodevelopmental outcomes in infancy to functional outcomes at school age. FOHR is a fair predictor of school-age functional outcome, but there are likely other factors that influence functional status, which highlights the need for prospective studies to incorporate other clinical and demographic variables in predictive models.

Safety and efficacy of repeat long-term incobotulinumtoxinA treatment for lower limb or combined upper/lower limb spasticity in children with cerebral palsy.

PURPOSE: The open-label phase 3 "Treatment with IncobotulinumtoxinA in Movement Open-Label" (TIMO) study investigated longer-term safety and efficacy of incobotulinumtoxin A in children/adolescents with cerebral palsy (CP). METHODS: Patients on standard treatment, with unilateral or bilateral lower limb (LL) or combined upper limb (UL)/LL spasticity received four incobotulinumtoxinA injection cycles (16 or 20 Units/kg bodyweight total [maximum 400 or 500 Units] per cycle depending on ambulatory status/clinical pattern treated), each followed by 12-16 weeks' observation. Treatment for pes equinus was mandatory; flexed knee or adducted thigh were options for unilateral treatment and/or ULs for unilateral/bilateral treatment. The primary endpoint was safety; changes in Ashworth Scale and Gross Motor Function Measure-66 scores, and Global Impression of Change Scale scores at week 4 of each injection cycle were also evaluated. RESULTS: IncobotulinumtoxinA (≤500 Units for ≤98 weeks) was safe, well-tolerated, and effective across all endpoints for multipattern treatment of LL and combined LL/UL spasticity in ambulant/nonambulant children/adolescents with CP. Treatment effects increased with each injection cycle. No new/unexpected safety concerns were identified. CONCLUSION: IncobotulinumtoxinA showed a good safety and tolerability profile, with efficacy over multiple clinical presentations. As an adjunct treatment, it offers an effective, individualized treatment option for pediatric CP-related spasticity.