Showing papers in "Journal of pediatric rehabilitation medicine in 2021"

Immersive virtual reality in children with upper limb injuries: Findings from a feasibility study

Abstract: PURPOSE:Children who sustain Upper Limb Injuries (ULIs), including fractures and burns, may undergo intensive rehabilitation. The discomfort of therapy can reduce their compliance, limit their range of motion (ROM) and lead to chronic pain. Virtual Reality (VR) interventions have been found to reduce anticipated and procedural pain. This feasibility study aimed to explore perceptions and impacts of a custom-made, fully immersive Head-Mounted Display VR (HMD-VR) experience within a United Kingdom (UK) National Health Service (NHS) outpatient rehabilitation service for children with ULIs. METHODS:Ten children aged 9–16 in one UK Children’s hospital trialled HMD-VR during one rehabilitation session. They, their parents (n = 10), and hospital physiotherapy staff (n = 2) were interviewed about their perceptions of pain, difficulty, enjoyability, therapeutic impacts, benefits, and limitations. Children rated the sessions on enjoyability, difficulty, and pain compared to usual rehabilitation exercises. Physiotherapists were asked to provide range of motion readings. RESULTS: Inductive thematic analysis of interview data generated three themes, ‘Escape through Engagement’; ‘Enhanced Movement’; and ‘Adaptability and Practicality’. Children rated the session as more enjoyable, less difficult and painful than their usual rehabilitation exercises. Findings suggested that HMD-VR was an engaging, enjoyable experience that distracted children from the pain and boredom of therapy. Also, it seemed to enhance the movement they achieved. Participants perceived it was useful for rehabilitation and adaptable to individual needs and other patient groups. Suggestions were made to increase adaptability and build in practical safeguards. CONCLUSION: Findings from this small-scale feasibility study suggested HMD-VR was perceived as usable, acceptable, and effective with potential for further development. Future work could include larger scale trials.

Addressing disparities among children with cerebral palsy: Optimizing enablement, functioning, and participation.

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.

How children and their parents value using the Canadian Occupational Performance Measure (COPM) with children themselves.

Abstract: PURPOSE: Although the Canadian Occupational Performance Measure (COPM) is used with children, it is unclear how they and their parents experience this. This study aims to investigate the opinions of children and their parents about the COPM when it is used with children. METHODS: Semi-structured interviews were performed with 23 children varying in age between 8 and 18 years. The transcripts of the interviews were analysed using MAXQDA software to discover overarching themes. Parents' responses to an eight-item multiple-choice questionnaire were analysed using SPSS software. RESULTS: Five themes extracted from the interviews with the children show: My way of doing the COPM; The COPM shows my own problems and wishes for change; The COPM is important for identifying the support I need; The influence of my parents and my therapist; and The COPM is suitable for me. The children experienced the COPM as a valuable tool for determining and measuring the impact of an intervention. The parents experienced the COPM as suitable for their child and judged that the child's scores were useful for showing the outcome of an intervention. CONCLUSION: Both the children and their parents valued the COPM as an outcome measure for intervention.

Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic.

Abstract: PURPOSE To determine characteristics associated with self-management independence and quality of life (QOL) among adolescents and young adults with spina bifida (AYASB) engaged in a spina bifida (SB) health care transition clinic. METHODS During SB transition visits, Eighty-eight AYASB ages 14-20 completed the Adolescent/Young Adult Self-management and Independence Scale II Self-Report/SB (AMIS II-SR/SB), scores ranging from 1-7 with 7 indicating full independence in activities, and the QUAlity of Life Assessment in Spina bifida for Teens (QUALAS-T), which has two subscales, family/independence (QFI) and bowel/bladder (QBB), with scores ranging from 0-100 with 100 indicating maximal QOL score. Demographic and clinical variables were collected from the electronic medical record. RESULTS The baseline AMIS II-SR/SB score was 3.3 (SD 1.0). Baseline scores for QUALAS-T QFI and QBB subscales were 73.8 (SD 19.9) and 63.8 (SD 25.8). Older age was associated with a higher baseline AMIS II-SR/SB score (p = 0.017). Over time, AMIS II-SR/SB total significantly improved (p < 0.001), but QFI and QBB did not. AYASB not on chronic intermittent catheterization (CIC) and those using urethral CIC significantly improved in AMIS II-SR/SB total scores (p = 0.001), but those using abdominal channel CIC did not. CONCLUSION Baseline bladder management method was associated with self-management improvement for AYASB engaged in a SB-specific transition clinic.

IncobotulinumtoxinA for the treatment of lower-limb spasticity in children and adolescents with cerebral palsy: A phase 3 study.

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.

Personalized balance games for children with cerebral palsy: A pilot study.

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.

The association between gait analysis measures associated with crouch gait, functional health status and daily activity levels in cerebral palsy.

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) ⩾ 190). 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.

Feasibility of motor-assisted elliptical to improve walking, fitness and balance following pediatric acquired brain injury: A case series

Abstract: PURPOSE Walking, fitness, and balance deficits are common following acquired brain injury (ABI). This study assessed feasibility, acceptability, and usefulness of a modified motor-assisted elliptical (ICARE) in addressing walking, fitness, and balance deficits in children with chronic ABIs. METHODS Three children (> 5 years post-ABI) completed 24 ICARE exercise sessions (exercise time, speed, and time overriding motor-assistance gradually increased) to promote mass repetition of gait-like movements and challenge cardiorespiratory fitness. Parents' and children's perceptions of ICARE's safety, comfort, workout, and usability were assessed. Cardiovascular response, gait and balance outcomes were assessed. RESULTS No adverse events occurred. Parent's Visual Analogue Scale (VAS) scores of perceived device safety (range 80-99), workout (range 99-100), and usability (range 75-100) were high, while comfort were 76-80 given commercial harness fit and arm support. Children's VAS scores all exceeded 89. Comfortable walking velocity, 2-Minute Walk Test, fitness, and Pediatric Balance Scale scores improved post-training, with many outcomes surpassing established minimal clinically important differences. CONCLUSION Following engagement in moderate- to vigorous-intensity exercise promoting repetitive step-like movements on a specially adapted motor-assisted elliptical, three children with chronic ABI demonstrated improvements in walking, fitness and balance. Future research in community-based environments with a larger cohort of children with ABI is needed.

Motivation and motivation-related factors in children with disabilities.

Abstract: PURPOSE Assessing motivation and motivation-related factors will contribute to a better understanding of motivation and the development of optimal rehabilitation conditions. The purpose of this study was to determine the motivation level and investigate the relationship of motivation level with socio-demographic characteristics (i.e., age, gender, comorbidities), functional level, and family satisfaction with rehabilitation centers in children with disabilities. METHODS Sixty-two children with disabilities were included in the study, and the socio-demographic characteristics were recorded. Children were assessed by the Pediatric Motivation Scale (PMOT) and the Pediatric Functional Independence Measure (WeeFIM). Also, parents were asked to complete a questionnaire titled, "A patient satisfaction instrument for outpatient physical therapy clinics." RESULTS The mean age of the children was 12.16 ± 3.19 years. Total PMOT and WeeFIM scores were found to be 93.71 ± 9.66 and 108.23 ± 22.14, respectively. There was a positive correlation between children's PMOT score and the satisfaction score of their families that was statistically significant (r= 0.602, p< 0.05). CONCLUSION The level of family satisfaction with rehabilitation centers was found to be positively correlated with the motivation level of children. Improving family satisfaction with rehabilitation centers, potentially through modifying the physical conditions of rehabilitation centers and focusing on the interest of the family, may increase the motivation level of children, and thus may improve rehabilitation outcomes.

Foot and ankle somatosensory deficits in children with cerebral palsy: A pilot study.

Abstract: Purpose To investigate foot and ankle somatosensory function in children with cerebral palsy (CP). Methods Ten children with spastic diplegia (age 15 ± 5 y; GMFCS I-III) and 11 typically developing (TD) peers (age 15 ± 10 y) participated in the study. Light touch pressure and two-point discrimination were assessed on the plantar side of the foot by using a monofilament kit and an aesthesiometer, respectively. The duration of vibration sensation at the first metatarsal head and medial malleolus was tested by a 128 Hz tuning fork. Joint position sense and kinesthesia in the ankle joint were also assessed. Results Children with CP demonstrated significantly higher light touch pressure and two-point discrimination thresholds compared to their TD peers. Individuals with CP perceived the vibration stimulus for a longer period compared to the TD participants. Finally, the CP group demonstrated significant impairments in joint position sense but not in kinesthesia of the ankle joints. Conclusions These findings suggest that children with CP have foot and ankle tactile and proprioceptive deficits. Assessment of lower extremity somatosensory function should be included in clinical practice as it can guide clinicians in designing more effective treatment protocols to improve functional performance in CP.

Using ICF-CY WHO principles to guide rehabilitation following sudden cardiac arrest in an adolescent with ALCAPA.

Abstract: This case report details the complex rehabilitation of an adolescent patient with congenital heart disease with anomalous origin of the left coronary artery from the pulmonary artery (ALCAPA) who presented with a sudden cardiac arrest. The International Classification of Functioning, Disability and Health for Children and Youth, World Health Organization (ICF-CY WHO) principles were used to guide the course of the patient's acute inpatient rehabilitation.

Inclination, hip abduction, orientation, and tone affect weight-bearing in standing devices

Abstract: Purpose With children who are unable to stand or walk independently in the community, therapists commonly use standing devices to assist lower-extremity weight-bearing which is important for bone and muscle health. In addition, positioning in hip abduction may improve hip stability and range of motion. This is the first study to explore the effect of angle of inclination, hip abduction, body orientation, and tone on weight-bearing in pediatric standing devices. Methods This descriptive exploratory study used a convenience sample of 15 participants (2 with normal tone, 5 with generalized hypotonia, and 8 with hypertonia) (mean age of 5 years and 10 months, range of 3 years 4 months to 9 years 7 months); 13 of whom used standing devices at home, as well as 2 typically developing siblings (normal tone). Each child stood in 36 positions to measure the amount of weight-bearing through footplates. Results Weight-bearing was highest with 60 degrees of abduction and no inclination (upright) in supine positioning for children with low and normal tone. Children with high muscle tone bore most weight through their feet with no abduction (feet together) and no inclination (upright) in prone positioning. Overall, supine positioning resulted in more weight-bearing in all positions for children with low and normal tone. Prone positioning resulted in slightly more weight-bearing in all positions for children with high tone. Conclusions Weight-bearing was affected by all three of the variables (inclination, abduction, and orientation) for participants with high, normal, and low tone. To determine optimal positioning, all standers should include a system to measure where and how much weight-bearing is occurring in the device.

Clinical aspects of congenital primary lymphedema

Abstract: Purpose Lymphedema is a specific type of edema with a chronic, progressive nature. The aim of the present study is to report clinical findings related to edema and its location in children with primary lymphedema. Methods Sixty-eight children with congenital primary lymphedema were evaluated at the Godoy Clinic in Sao Jose do Rio Preto, Brazil, between 2014 and 2017. A retrospective, cross-sectional study was conducted involving the analysis of clinical data on the location of edema in 68 children with congenital primary lymphedema. We evaluated the charts of all children with this condition in the period analyzed, recording the affected limbs and conditions associated with lymphedema. Results Sixty-eight children, 37 girls (54.41%) and 31 boys (45.58%), were evaluated. Conclusion We found that congenital primary lymphedema predominantly affects the lower limbs and is more prevalent in girls than boys.

Capsular distention for adhesive capsulitis in a pediatric patient with acute flaccid myelitis: A case report.

Abstract: Introduction Acute Flaccid Myelitis (AFM) is a recently recognized pediatric condition characterized by flaccid paralysis that can cause lifelong deficits. Adhesive Capsulitis (AC) is a chronic condition that causes loss of passive range of motion in the shoulder due to joint contracture. Case report This is a case report of a 15-year-old male who suffered from shoulder pain with progressive loss of passive range of motion after AFM, diagnosed with AC based on exam and radiology. After failing conservative management, the patient was successfully treated with ultrasound guided corticosteroid injection. Discussion/conclusion AC is uncommonly reported in pediatric patients. However, secondary adhesive capsulitis is frequently associated with disorders of shoulder immobility in adults. This case contributes to the body of literature regarding pediatric frozen shoulder, highlights the successful use of ultrasound guided injections for management, and suggests a relationship between AFM and AC which may be beneficial for pediatric physiatrists in treating patients with shoulder pain or immobility related to this condition.

Psychometric properties of the PEDI-CAT for children and youth with spinal muscular atrophy.

Abstract: Purpose The purpose of this study was to examine the psychometric properties of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) in children and youth with Spinal Muscular Atrophy (SMA). Methods In this prospective cross-sectional study, caregivers of children and youth with SMA completed the PEDI-CAT Daily Activities and Mobility domains. A subset of caregivers completed a questionnaire about the measure. Results Mean ranks of scaled scores for Daily Activities (n = 96) and Mobility (n = 95) domains were significantly different across the three SMA types and across the three motor classifications. Normative scores indicated that 85 participants (89.5%) had limitations in Mobility and 51 in Daily Activities (53.1%). Floor effects were observed in≤10.4%of the sample for Daily Activities and Mobility. On average, caregivers completed the Mobility domain in 5.4 minutes and the Daily Activities domain in 3.3 minutes. Most caregivers reported that they provided meaningful information (92.1%), were willing to use the PEDI-CAT format again (79%), and suggested adding content including power wheelchair mobility items. Conclusion Convergent validity was demonstrated for the Daily Activities and Mobility domains. Normative scores detected limitations in Mobility and Daily Activity performance for most participants with SMA. The PEDI-CATwas feasible to administer and caregivers expressed willingness to complete the PEDI-CAT in the future.

Development and initial validation of ability levels to interpret pediatric spinal cord injury activity measure and pediatric measure of participation scores.

Abstract: Purpose To develop ability levels and descriptions to interpret Pediatric Spinal Cord Injury Activity Measure (PEDI-SCI AM) and Pediatric Measure of Participation (PMoP) scores. Methods Mixed-methods approach to 1.) create item maps using PEDI-SCI AM and PMoP calibration data; 2.) employ bookmarking methods and an iterative consensus process including semi-structured interviews, focus groups and surveys to establish PEDI-SCI AM and PMoP level score cut-points and descriptions; 3.) use calibration sample data to examine mean score differences across levels [analyses of variance (ANOVAs)] and assess the sample distribution (%) across levels; 4.) repeat in a separate validation sample; 5.) develop level descriptions. Throughout the mixed methods approach, the sample participants include children with spinal cord injury (SCI), parents of children with SCI, and professionals who work with children with SCI. Results Four or five ability levels were identified for each PEDI-SCI AM and PMoP domain along with descriptions for each level. ANOVA results revealed significant overall differences for level mean scores and pairwise comparisons (p 80%) was achieved for all PEDI-SCI AM and some PMoP level descriptions. Conclusion PEDI-SCI AM and PMoP score cut-points identify different levels of activity and participation among children with SCI. These levels and descriptions provide clinical relevance for PEDI-SCI and PMoP numeric scores.

Neuromuscular mechanisms that contribute to gross motor performance in survivors of childhood acute lymphoblastic leukemia.

Abstract: PURPOSE This study explored neuromuscular mechanisms and clinical measures that contribute to countermovement jump performance in survivors of childhood acute lymphoblastic leukemia (ALL CCS) compared to age- and sex-matched peers. METHODS This exploratory cross-sectional observational study examined 12 participants, six ALL CCS and six age- and sex-matched peers (7-16 years). During a countermovement jump, rates of muscle activation of lower leg muscles were measured with electromyography, and joint torques and peak jump height with force plates and a motion capture system. Clinical measures included muscle extensibility, balance, and mobility measured by active ankle dorsiflexion, Bruininks-Oseretsky Motor Proficiency (BOT-2), and Timed Up and Go (TUG) tests. RESULTS Compared to peers, ALL CCS demonstrated reduced gastrocnemius muscle extensibility and tibialis anterior rate of muscle activation, decreased jump height, and poorer performance on the BOT-2 and TUG. Jump height was significantly correlated with clinical measures of the BOT-2 and TUG. CONCLUSION These ALL CCS demonstrated neuromuscular impairments that may impact jump performance, an essential childhood physical activity. Further research is needed to explore intervention strategies to improve the neuromuscular mechanisms that contribute to high-level gross motor skills in ALL CCS.

Caregiver and provider experiences of physical, occupational, and speech therapy for children with medical complexity.

Abstract: Purpose Children with medical complexity (CMC) often use rehabilitative services ("therapy") to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC. Methods Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy. Interviews were recorded, transcribed and coded to identify caregiver and provider reported themes. Applied thematic analysis was used to characterize themes related to study objectives. Results Participants endorsed challenges setting therapy goals amongst competing patient and family priorities. They also identified logistical challenges to obtaining therapy, including transition from early intervention services to school-based years. Participants raised concerns about variability in obtaining school-based therapy and insurance coverage of community-based therapy. Overall, funding, salary, credentialing requirements, and training impacts the pediatric therapy workforce's ability to meet the need of CMC. Conclusion Setting the ideal "dose" of therapy within the individual and family context can be challenging for CMC. Sufficient government programming, insurance coverage, and workforce availability were barriers to obtaining services. This study adds a more detailed understanding of therapy for CMC that can be used to inform future research and policy work.

Rehabilitation in a rare case of coffin-siris syndrome with major cognitive and behavioural disorders.

Abstract: BACKGROUND Coffin-Siris syndrome is a rare genetic disease with heterozygous variants in the ARID1A, ARID1B, ARID2, DPF2, SMARCA4, SMARCB1, SMARCE1 or SOX11 genes. It may manifest with somatic anomalies, deafness, urogenital malformations, recurrent infections, mental retardation, speech deficit, agenesis of the corpus callosum, convulsions, hypotonia, developmental delay, and scoliosis. CASE REPORT A 14-year-old boy with Coffin-Siris syndrome due to variants in the ARID1A gene was referred to the clinic. His rehabilitation over a 9-year period was described. The problem of assessment and the approach to rehabilitation was discussed, enabling a progressive remodelling of the cognitive-behavioural disorders that most hindered the possibility of his acquiring new skills and achieving social and family integration. CLINICAL REHABILITATION A protracted, customised, multiprofessional rehabilitation approach, centred on realistic functional objectives, implemented with the direct involvement of the family and school, was the only way to achieve the maximum independence and social and family integration permitted by his residual disability.

The adolescent and young adult self-management and independence scale (AMIS-II): Expanding evidence for validity and reliability.

Abstract: PURPOSE The purpose of this longitudinal study was to evaluate the internal consistency reliability and construct validity of the Adolescent/Young Adult Self-Management and Independence Scale-II (AMIS-II), an interview-based measure of self-management for youth with chronic health conditions. METHODS A diverse sample of adolescents and young adults (AYA) with spina bifida (SB) (n = 64 AYA; mean 20.88; age range 18-25 years) completed an AMIS-II interview. Six years earlier, parents from 55 families completed questionnaires that assessed children's responsibility for SB-related care (Sharing of Spina Bifida Management Responsibilities) and their ability to perform skills across condition-related tasks (The Spina Bifida Independence Survey). Parents also reported on child's communication skills, adaptive behaviors, and independent management of finances (Adaptive Behavior Assessment System-Second Edition; Scales of Independent Behavior-Revised). Descriptive and correlational analyses were conducted to assess the construct validity and the internal consistency reliability of the AMIS-II. RESULTS The AMIS-II demonstrated excellent internal consistency reliability (AMIS-II total scale α= 0.95; subscales α= 0.90 -0.91). Evidence in support of construct validity was found in associations between the AMIS-II and measures of child responsibility for SB-related care, ability to perform condition-related skills, and adaptive behaviors (r's = 0.378 -0.777; p's < 0.05). CONCLUSION This study provides further evidence of strong reliability and validity for the AMIS-II. Additional research with this measure will facilitate a better understanding of factors related to self-management behaviors in adolescents and young adults with spina bifida.

Rehabilitation therapies in Rett syndrome across the lifespan: A scoping review of human and animal studies.

Abstract: Purpose To perform a scoping review of the evidence for therapeutic interventions to manage functional impairments associated with Rett syndrome (RTT) throughout the lifespan. Methods MEDLINE, EMBASE, PsycINFO, CENTRAL, CINAHL, Scopus and Index to Chiropractic Literature were searched systematically up to December 2019. Two investigators independently reviewed all search results and extracted those that met the inclusion criteria. Human and animal model studies pertaining to therapies that increase functional ability or treat RTT-associated symptoms in all age groups were included. Relevant studies were grouped into intervention categories and rated using the Oxford Centre of Evidence Based Medicine Levels of Evidence. Demographics of participants, interventions, and outcomes were summarized. Results Ninety-one articles representing 88 studies met the inclusion criteria, of which 80 were human clinical studies and eight were studies using animal models. Study designs were primarily case series and only six studies involved participants above the age of 40. Conclusion A small number of rigorously studied rehabilitation interventions have been published. Published studies aim to address a wide variety of functional impairments. Research regarding implementation of therapies for older patients with RTT is lacking and requires further exploration.

Hip surgery and radiology reporting for children with cerebral palsy prior to initiation of a hip surveillance program.

Abstract: PURPOSE Hip displacement impacts quality of life for many children with cerebral palsy (CP). While early detection can help avoid dislocation and late-stage surgery, formalized surveillance programs are not ubiquitous. This study aimed to examine: 1) surgical practices around pediatric hip displacement for children with CP in a region without formalized hip surveillance; and 2) utility of MP compared to traditional radiology reporting for quantifying displacement. METHODS A retrospective chart review examined hip displacement surgeries performed on children with CP between 2007-2016. Surgeries were classified as preventative, reconstructive, or salvage. Pre- and post-operative migration percentage (MP) was calculated for available radiographs using a mobile application and compared using Wilcoxon Signed Ranks test. MPs were also compared with descriptions in the corresponding radiology reports using directed and conventional content analyses. RESULTS Data from 67 children (115 surgical hips) were included. Primary surgery types included preventative (63.5% hips), reconstructive (36.5%), or salvage (0%). For the 92 hips with both radiology reports and radiographs available, reports contained a range of descriptors that inconsistently reflected the retrospectively-calculated MPs. CONCLUSION Current radiology reporting practices do not appear to effectively describe hip displacement for children with CP. Therefore, standardized reporting of MP is recommended.

A resource guide to understanding cerebral palsy: Commentary on collaboration to support health literacy and shared decision making

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.

Improving WeeFIM score completion rates: An interdisciplinary inpatient rehabilitation unit quality improvement project.

Abstract: Purpose The WeeFIM is a tool commonly used in pediatric rehabilitation settings to measure objective patient progress while receiving comprehensive therapy services on inpatient rehabilitation units. This Quality Improvement (QI) project aimed for 95% of inpatients to have complete, on-time documented and displayed WeeFIM scores upon admission and discharge by 12/2017. Methods An interdisciplinary team examined historic WeeFIM completion rates. Using Plan-Do-Study-Act cycles, a unified flowsheet was developed in the electronic health record (EHR) to revamp workflow and identify opportunities for improvement, data accuracy, and finally sustainability. Progress was monitored in real time via an automated data visualization tool which monitored score timeliness and completeness. Results On-time admission completion rates increased from 0% to 95% during the intervention period. On-time discharge completion rates increased from 0% to 89% during the intervention period. This change has been sustained over two years with on-time admission and discharge scores averaging 79.4% and 77.9% respectively, and 96.4% of scores completed. Conclusion Changes in the completion rate of WeeFIMs are sustainable, evidenced by ongoing maintenance of our initial gains over the course of multiple months. The incorporation of WeeFIM documentation into the workflow increased on-time and overall completion rates. The success of this project shows that integrating new tasks into provider workflows helps drive completion.

The use and safety of intramuscular midazolam during in-office botulinum toxin injections in pediatric patients

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.

Opinions on rehabilitation care of young adults with transversal upper limb reduction deficiency in their transition to adulthood.

Abstract: PURPOSE: Young adults with transversal upper limb reduction deficiency experience limitations regarding education, employment and obtaining a driver's license. Contribution of rehabilitation care within these domains has been reported to be inadequate. This study evaluates the needs and suggestions of participants in rehabilitation care. METHODS: Two online focus groups with young adults and parents met during 4 consecutive days. Health care professionals joined a face-to-face focus group. Data analysis was based on framework analysis. RESULTS: The rehabilitation team was mainly consulted for problems with residual limb or for prostheses. Young adults and their parents were mostly unaware of resources regarding education, job selection or obtaining a driver's license. Professionals stated that these subjects were addressed during periodic appointments. Young adults didn't always attend these appointments due to limited perceived benefit. To improve rehabilitation care, participants suggested methods for providing relevant information, facilitating peer contact and offering dedicated training programs to practice work-related tasks, prepare for job interviews or enhance self-confidence. CONCLUSION: Periodic appointments do not fulfil needs of young adults with transversal upper limb reduction deficiency. To improve care, rehabilitation teams should offer age-relevant information, share peer stories, and create dedicated training programs.

Spinal cord infarction in children: Can gymnastics be a cause?

Abstract: Introduction Spinal cord infarction (SCI) in children is rare and difficult to diagnose. Fibrocartilaginous embolism (FCE) is probably the underlying cause for some unexplained cases of spinal cord infarcts. Abrupt back pain followed by a progressive syndrome of myelopathy appears to be the typical presentation, with a close temporal relationship between the onset of symptoms and preceding minor trauma. Supportive care and rehabilitation are essential in the treatment of children with SCI. Case report A previously healthy 12-year-old girl who practiced acrobatic gymnastics was admitted to a rehabilitation centre 14 days after being diagnosed with an acute anterior SCI with no identified cause. Sensory modality of pin prick and light touch were impaired, with the former more significantly affected. She was not able to run and had difficulty on monopodal standing and performing motor sequencing. Additionally, she mentioned ineffective cough along with flatus incontinence and normal bladder function. After a 4-week multidisciplinary rehabilitation program her neurologic deficits improved. Discussion Given the patient's age and clinical presentation, a literature review led to the consideration of FCE as the most likely definitive diagnosis. It should be recognized as a cause of SCI especially in those involved in sport activities, even if previous trauma is denied.

Prevalence of elimination disorders and comorbid psychiatric disorders in Iranian children and adolescents

Abstract: PURPOSE: Currently, there is a paucity of studies on the prevalence of Elimination Disorders among Iranian children and adolescents. Due to the ongoing need to monitor the health status of these children and adolescents, the present study aims to investigate the prevalence of Elimination Disorders and comorbid disorders in Iranian children and adolescents. METHODS: In this cross-sectional study, 29,781 children and adolescents age 6 to 18 years old were selected and studied from all the provinces in Iran. The sampling was carried out by employing a multistage cluster sampling method, and several clinical psychologists using semi-structured interviews collected the data. Furthermore, clinical psychologists collected demographic information (including information about gender, age, place of residence, education level, and parental education level). The collected data were analyzed using SPSS version 20. RESULTS: Generally, the prevalence of Elimination Disorders was found to be 5.4 covering both enuresis (p= 5.4, 95 CI = 5.1-5.7) and encopresis (p= 0.13, 95 CI = 0.09-0.2). The total prevalence of comorbid disorders was 38, and among the comorbid disorders, Attention Deficit Hyperactivity Disorder (ADHD) (p= 11, 95 CI = 9.5-12.7) and Separation Anxiety (p= 10.6, 95 CI = 9.1-12.2) were the most prevalent. CONCLUSION: The prevalence of Elimination Disorders in Iranian children and adolescents is moderate compared to similar studies elsewhere. As for comorbid disorders, ADHD and Separation Anxiety were found to be the most prevalent disorders. Since Elimination Disorders coexist with psychiatric disorders in children, further studies of these comorbidities may give better insight into the treatment and prognosis of Elimination Disorders. © 2021 - IOS Press. All rights reserved.