Journal of Pediatric Rehabilitation Medicine - Volume 14, issue 2
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The Journal of Pediatric Rehabilitation Medicine (JPRM): An Interdisciplinary Approach Throughout the Lifespan is designed to parallel the multidisciplinary teams caring for children, adolescents and adults with childhood-onset physical disabilities and complex care needs worldwide. Published quarterly, topics include, and are not limited to, cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, limb deficiency, muscular dystrophy, stroke, cancer, developmental delays, and rare disorders. Furthermore, the journal welcomes papers dedicated to pediatric rehabilitation from a global health perspective.
The aim of JPRM is to engage a diverse group of international experts with the goal of providing readers with comprehensive information regarding children and adolescents requiring rehabilitation. JPRM brings together specialists from medicine, nursing, psychology, social work, nutrition, child life, family centered care, and occupational, physical, and speech therapy. For manuscript submissions, authorship involving at least two different specialties is encouraged, although not required, to facilitate a transdisciplinary and collaborative approach. Manuscripts are blinded and peer reviewed including biostatistical analysis. Authors are invited to submit original research, systematic and scoping reviews, guidelines, protocols, care pathways, case reports, book reviews, commentaries, editorials, and dates for future conferences.
Abstract: PURPOSE: Recognizing health disparities among children with cerebral palsy (CP) is necessary for understanding potential risk factors for CP and for implementing early and effective preventative and intervention treatments. However, there is currently little and conflicting evidence regarding the direct impact of contextual factors such as socioeconomic status (SES) for children with CP in the United States. These contextual factors include the complex social determinants of health on prematurity, comprehensive informed obstetric management for minority and vulnerable populations, and cumulative adversity disproportionately experienced by children, by gender, minority status, immigration, poverty, and structural racism. METHODS: This…study presents results from a review of health disparities among children with CP, using registry and population surveillance data from Australia, Canada, Scandinavia, the United Kingdom, Ireland, Turkey, and the United States. RESULTS: The review confirmed that there are significant health disparities among children with CP, both in terms of prevalence and severity, based on factors such as SES, neighborhood disadvantage, maternal education, gender, and minority status. CONCLUSION: Strategies need to be implemented in the United States to promote enablement and functioning among children with CP who face additional health disparities. This requires a greater understanding of population groups at increased risk, comprehensive assessment and care for young children with motor delays, and systematic population counts of children and adults with CP using registries and systems of neurodevelopmental surveillance across health, education, and community rehabilitation. These efforts also require sensitivity to structural and persistent racism, stigma, trauma-informed care, and culturally sensitive community engagement. Additional efforts are also required to improve outcomes over the life course for individuals living a life with CP from a framework of enablement, self-direction, equity and social justice.
Keywords: Cerebral palsy, early detection, enablement, registries, functioning, health disparities
Abstract: PURPOSE: The purpose of this study was to measure the growth of the Cerebral Palsy (CP) Research Network towards becoming a Learning Health Network in order to guide future development. METHODS: Thirteen CP Research Network leaders completed the Network Maturity Grid (NMG) which consists of six domains with eight to 10 components each. The six domains are Systems of Leadership, Governance and Management, Quality Improvement, Engagement and Community, Data and Analytics, and Research. Radar mapping was utilized to display mean scores on a 5-point ordinal scale (1 = not started to 5 =…idealized state) across domains and for individual components within domains. Consensus was reached for top priorities for the next 3–5 years. RESULTS: Domain scores ranged from 2.4 in Quality Improvement to 3.2 in System of Leadership. The lowest scoring component was clinician clinical decision support and the highest was common purpose. The following priority areas of focus were agreed upon moving forward: development of leaders, financial sustainability, quality improvement education and training, patient reported data, data quality and validation, and primary data collection. CONCLUSION: Results from this project will be utilized for strategic planning to improve the network. Conducting regular self-assessments of the network with the NMG will be useful in achieving the network’s ultimate goal to improve care and outcomes for individuals with CP.
Keywords: Cerebral palsy, learning health network, quality improvement
Abstract: BACKGROUND: Shared decision-making is a newer model of patient-centered healthcare; it is particularly important for people with chronic conditions including cerebral palsy. Health literacy is the ability of an individual to obtain, communicate, process, and understand health information and is a crucial component to shared decision-making. With the abundance of information that can be found on the internet, it can be difficult to navigate and determine which websites contain reliable information. OBJECTIVE: Provide a commentary article aimed to provide healthcare professionals a current, annotated list of reliable online resources in regards to cerebral palsy throughout the…lifespan with the goal of supporting health literacy and therefore improving shared decision-making and reducing disparity. CONCLUSION: Access to accurate and reliable information is an important aspect of health literacy, which in turn will optimize outcomes and build the foundation for shared decision-making between the provider and the patient. Educational materials should be easy to navigate and utilize. This article serves as a guide for reliable CP resources.
Keywords: Shared decision making, health literacy, cerebral palsy, resources
Abstract: PURPOSE: Investigate the efficacy and safety of multipattern incobotulinumtoxinA injections in children/adolescents with lower-limb cerebral palsy (CP)-related spasticity. METHODS: Phase 3 double-blind study in children/adolescents (Gross Motor Function Classification System – Expanded and Revised I–V) with unilateral or bilateral spastic CP and Ashworth Scale (AS) plantar flexor (PF) scores ⩾ 2 randomized (1:1:2) to incobotulinumtoxinA (4, 12, 16 U/kg, maximum 100, 300, 400 U, respectively) for two 12- to 36-week injection cycles. Two clinical patterns were treated. Pes equinus (bilateral or unilateral) was mandatory; if unilateral, treatment included flexed knee or adducted thigh. Endpoints: Primary:…AS-PF change from baseline to 4 weeks; Coprimary: investigator-rated Global Impression of Change Scale (GICS)-PF at 4 weeks; Secondary: investigator’s, patient’s, and parent’s/caregiver’s GICS, Gross Motor Function Measure-66 (GMFM-66). RESULTS: Among 311 patients, AS-PF and AS scores in all treated clinical patterns improved from baseline to 4-weeks post-injection and cumulatively across injection cycles. GICS-PF and GICS scores confirmed global spasticity improvements. GMFM-66 scores indicated better motor function. No significant differences between doses were evident. Treatment was well-tolerated, with no unexpected treatment-related adverse events or neutralising antibody development. CONCLUSION: Children/adolescents with lower-limb spasticity experienced multipattern benefits from incobotulinumtoxinA, which was safe and well-tolerated in doses up to 16 U/kg, maximum 400 U.
Keywords: Botulinum toxin, spasticity, cerebral palsy, all movement disorders, all paediatric, incobotulinum
Abstract: Serious adverse events (serious AEs) following the therapeutic use of Botulinum Toxin Type A (BoNT-A) are infrequent. Children with pediatric spasticity often have comorbidities that can cloud causation around an adverse event (AE). If a serious AE occurs, clear documentation of information sharing and informed consent as well as the provider-patient relationship are critical to minimizing litigation risks. Reviewing the litigation that has occurred following BoNT-A for pediatric spasticity can offer insight into how providers’ perspectives regarding this intervention may differ from those of the public who might serve as jurists. This article offers suggestions for content sharing during the…consent process to optimize patient understanding about potential adverse events.
Keywords: FDA label, indication, off label drug use, serious adverse events, idiosyncratic reactions, Black Box Warning, consent, information sharing, causation, Botulinum Toxin Type A, pediatric spasticity, Cerebral Palsy, medication guide
Abstract: PURPOSE: Pediatric outpatient procedures can be traumatic experiences for patients. This retrospective study, evaluates intramuscular midazolam as a safe option for anxiolysis during spasticity management injections. METHODS: We performed a retrospective chart review of 72 patients from a Tertiary Pediatric Hospital Outpatient Clinic. One hundred and twenty injections were administered over two years by a single practitioner. Comorbidities included asthma, sleep apnea, chronic obstructive disease, and epilepsy. Duration of sedation, safety of midazolam as determined through the use of the REACT (Respiration, Energy, Alertness, Circulation, Temperature) score, and frequency of side effects (prolonged sedation, breakthrough crying,…medication reversal, and emergent evaluation) were recorded. A student’s t test evaluated the relationship between the above comorbidities and duration of sedation. RESULTS: The average duration of sedation was 29 minutes (95% CI 26.51–31.35) with an average dose of midazolam of 0.20 mg/kg (95% CI 0.9–0.21). None of the subjects required medication reversal or emergent evaluation. 39% of the patients had prolonged sedation (> 30 minutes after medication administration), 22% had breakthrough crying, and 0% had respiratory events requiring oxygen, intubation or an emergency evaluation. No statistical significance found between the comorbidities and duration of sedation. CONCLUSION: Intramuscular midazolam is a possible effective anxiolytic medication strategy for outpatient pediatric injections. Additional studies are needed to ensure its safety and efficacy.
Abstract: PURPOSE: The purpose of this study was to create a clear, standardized test description to rate spasticity severity into four categories according to the definition given by Lance , referred to as the Velocity Dependent Measure of Spasticity (VDMS). METHOD: Muscle groups of the upper and lower limbs of children with neuromotor disorders were evaluated on their response to passive movement in a fast-versus slow-velocity test condition. The interrater and test-retest reliability were assessed using Gwet’s alpha one (95%-CI) and the percentage agreement. RESULTS: Two physiotherapists independently assessed 45 children and youths (age…4–19 years). The interrater reliability of the VDMS was substantial to almost perfect (Gwet’s alpha one: 0.66–0.99, n = 45) while the test-retest reliability was almost perfect as well (Gwet’s alpha one: 0.83–1.00, n = 42). CONCLUSION: The VDMS can be recommended as a reliable assessment with a standardized procedure to assess spasticity of the extremities in children with neuromotor disorders.
Abstract: PURPOSE: The aim of this study was to examine the relationship between gait analysis measures associated with crouch gait, functional health status and daily activity in ambulant cerebral palsy (CP). METHODS: Three-dimensional gait analysis was carried out on 35 ambulant participants with bilateral CP crouch gait (knee flexion at mid-stance (KFMS) ⩾ 19 0 ). KFMS, knee-flexion at initial contact, gait speed and step-lengths were extracted for analysis. Steps/day and sedentary time/day were assessed using an ActivPAL accelerometer. Functional health status was assessed using the five relevant domains of the…Pediatric Outcomes Data Collection Instrument (PODCI) questionnaire. Associations between variables were assessed with correlation coefficients and multivariable linear regression. RESULTS: There were no significant correlations between KFMS and PODCI domains (ρ = - 0.008–0.110) or daily activity (ρ = - 0.297–0.237) variables. In contrast, multivariable analysis found that step-length was independently associated with the Sports and Physical Function (p = 0.030), Transfers and Basic Mobility (p = 0.041) and Global Function (< 0.001) domains of the PODCI assessment. Gait speed was independently associated with mean steps/day (p < 0.001). CONCLUSIONS: Step length and gait speed are more strongly associated with functional health status and daily activity than knee flexion during stance in children and adolescents with CP crouch gait.
Keywords: Cerebral palsy, functional health status, gait/balance, activities of daily living
Abstract: PURPOSE: To assess the changes in balance function in children with cerebral palsy (CP) after two weeks of daily training with personalized balance games. METHODS: Twenty-five children with CP, aged 5 to 18 years were randomly selected for experimental or control groups. Over a period of two weeks, all participants received 8–9 game sessions for 15–20 minutes, totaling 150–160 minutes. The experimental group used personalized balance games available from the GAmification for Better LifE (GABLE) online serious gaming platform. Children from the control group played Nintendo Wii games using a handheld Wii Remote. Both groups received…the same background treatment. Recorded outcome measures were from a Trunk Control Measurement Scale (TCMS), Timed Up & Go Test (TUG), Center of Pressure Path Length (COP-PL), and Dynamic Balance Test (DBT). RESULTS: After two weeks of training in the experimental group TCMS scores increased by 4.5 points (SD = 3.5, p < 0.05) and DBT results increased by 0.88 points (IQR = 1.03, p < 0.05) while these scores did not change significantly in the control group. Overall, TUG and COP-PL scores were not affected in either group. CONCLUSION: This study demonstrates improvement of balancing function in children with CP after a two-week course of training with personalized rehabilitation computer games.
Keywords: Game therapy, serious games, physical therapy, rehabilitation, neurological disorders