Journal of Pediatric Rehabilitation Medicine - Volume 14, issue 3

Authors: Paleg, Ginny | Altizer, Wendy | Malone, Rachel | Ballard, Katie | Kreger, Alison

Article Type: Research Article

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. Show more

Keywords: Standing, stander, hypotonia, hypertonia, abduction

DOI: 10.3233/PRM-190660

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 433-441, 2021

Authors: Walker, Gregory A. | Wilson, Julie C. | Potter, Morgan N. | Provance, Aaron J. | Kirkwood, Michael | Howell, David R.

Article Type: Research Article

Abstract: PURPOSE: To examine the effect of age on postural control outcomes among patients being seen during their initial post-concussion clinical visit. METHODS: Youth patients were seen≤14 days post-concussion, and completed a series of postural control evaluations: tandem gait, Romberg, and Balance Error Scoring System (BESS) tests. RESULTS: We included 109 children 8–12 years of age (24% female, evaluated median = 7 [interquartile range = 4–10] days post-injury) and 353 adolescents aged 13–18 years (36% female, evaluated median = 7 [4–10 ] days post-injury). There was a higher proportion of children who demonstrated abnormal tandem gait relative to adolescents (26% vs. 11%; p … < 0.001). They also made more BESS errors in single (median = 5 [2–10 ] vs. 4 [2–6 ] errors) and tandem (median = 3 [1–6 ] vs. 2 [0–4]) firm stances. After covariate adjustment, children demonstrated worse tandem gait (adjusted odds ratio = 3.05, 95% CI = 1.68–5.53) and more firm surface BESS errors (double stance β=0.51, 95% CI = 0.22–0.80; single stance β= 1.18, 95% CI = 0.42–1.95; tandem stance β= 0.98, 95% CI = 0.28–1.68) than adolescents. CONCLUSIONS: Tandem gait and BESS performance following concussion differ in children compared to adolescents who present within 2 weeks of injury. Clinicians assessing and managing concussion should recognize age differences in postural control performance when assessing those with concussion. Show more

Keywords: Adolescence, youth, mild traumatic brain injury, postural balance

DOI: 10.3233/PRM-190665

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 443-450, 2021

Authors: Fragala-Pinkham, Maria | Pasternak, Amy | McDermott, Michael P. | Mirek, Elizabeth | Glanzman, Allan M. | Montes, Jacqueline | Dunaway Young, Sally | Salazar, Rachel | Quigley, Janet | Riley, Susan O. | Chiriboga, Claudia A. | Finkel, Richard S. | Tennekoon, Gihan | Martens, William B. | De Vivo, Darryl C. | Darras, Basil T.

Article Type: Research Article

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. Show more

Keywords: Spinal muscular atrophy, caregiver-reported outcome measure, Pediatric evaluation of Disability Inventory-Computer Adaptive Test, functional performance measure, psychometric properties

DOI: 10.3233/PRM-190664

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 451-461, 2021

Authors: Calhoun Thielen, Christina | Slavin, Mary D. | Ni, Pengsheng | Mulcahey, MJ

Article Type: Research Article

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  < 0.05). Consensus (>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. Show more

Keywords: Pediatric, spinal cord injury, patient reported outcome measure, rehabilitation, computer adaptive testing, bookmarking

DOI: 10.3233/PRM-200774

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 463-476, 2021

Authors: Karlovic, Helena | Franjic, Damir | Arapovic, Jurica

Article Type: Research Article

Abstract: PURPOSE: The aim of this study is to determine the factors influencing the decrease of the vaccination rate among children with nonprogressive neurodevelopmental disorders in Bosnia and Herzegovina. METHODS: This study included 149 parents of children with nonprogressive neurodevelopmental disorders. The children were rehabilitated at the University Clinical Hospital Mostar, from October 2017 to February 2019. RESULTS: The vaccination rate of children with nonprogressive neurodevelopmental disorders was 34.9% (P  < 0.001). Based on the results of this study, physicians were the most common source of information on vaccines and vaccination procedures for parents (70.3%), whereas the media …was rarely used as the source of the information (33%) (P  < 0.001). Of the cases, 58.4% accepted the opinion of the pediatrician (P  = 0.041). The vaccination of children was postponed on the physician’s recommendation in 87.6% of the cases (P  < 0.001). Among healthcare professionals, neuropediatricians or neurophysiatrists (P  = 0.023), together with pediatricians (P  < 0.001), most often suggested postponing the vaccination. CONCLUSION: Overall, this study showed that the majority of children with nonprogressive neurodevelopmental disorders were unvaccinated. The majority of the parents trusted the physicians’ opinion on vaccination. Neuropediatricians and neurophysiatrists most often postponed the regular vaccination of children. Show more

Keywords: Vaccination, hesitancy, nonprogressive, neurodevelopmental disorder, neurophysiatrist, neuropediatrician

DOI: 10.3233/PRM-200678

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 477-484, 2021

Authors: Swann-Thomsen, Hillary E. | Vineyard, Jared | Hanks, John | Hofacer, Rylon | Sitts, Claire | Flint, Hilary | Tivis, Rick

Article Type: Research Article

Abstract: PURPOSE: The goal of this study was to evaluate the performance of a pediatric stratification tool that incorporates health and non-medical determinants to identify children and youth with special health care needs (CYSHCN) patients according to increasing levels of complexity and compare this method to existing tools for pediatric populations. METHODS: This retrospective cohort study examined pediatric patients aged 0 to 21 years who received care at our institution between 2012 and 2015. We used the St. Luke’s Children’s Acuity Tool (SLCAT) to evaluate mean differences in dollars billed, number of encounters, and number of problems on the …problem list and compared the SLCAT to the Pediatric Chronic Conditions Classification System version2 (CCCv2). RESULTS: Results indicate that the SLCAT assigned pediatric patients into levels reflective of resource utilization and found that children with highly complex chronic conditions had significantly higher utilization than those with mild and/or moderate complex conditions. The SLCAT found 515 patients not identified by the CCCv2. Nearly half of those patients had a mental/behavioral health diagnosis. CONCLUSIONS: The findings of this study provide evidence that a tiered classification model that incorporates all aspects of a child’s care may result in more accurate identification of CYSHCN. This would allow for primary care provider and care coordination teams to match patients and families with the appropriate amount and type of care coordination services. Show more

Keywords: Pediatric complex care, care coordination, acuity, chronic conditions

DOI: 10.3233/PRM-200694

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 485-493, 2021

Authors: Durán, Cecilia | Abreu, María del Carmen | Dapueto, Juan J.

Article Type: Research Article

Abstract: PURPOSE: The aim of the study was to evaluate the Assessment and Orientation Treatment Program for children and adolescents with disabilities treated at the Center Teletón Uruguay from the perspective of the patients and their parents based on several patient reported outcome measures: health related quality of life (HRQOL), treatment satisfaction, family impact, and emotional distress. METHODS: The sample consisted of all the 126 dyads of children/adolescents with ages ranging from 2 to 18 years and their primary caregivers who entered the program from April to October 2012. A set of instruments were filled out by children and …parents before and six months after the program. T test for paired samples for continuous variables and McNemar’s test for categorical variables were used to assess changes pre and post intervention. RESULTS: There was a high prevalence of depression and anxiety in the caregivers. In the second evaluation, improvements that were statistically significant only for the caregivers were observed in the HRQOL of children, adolescents and caregivers. CONCLUSIONS: The patient reported outcome measures used were effective in detecting changes in several areas of the quality of life of children observed by their caregivers and in their own quality of life after the intervention. Show more

Keywords: Children with disabilities, quality of life, rehabilitation outcome, family caregivers

DOI: 10.3233/PRM-190632

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 495-503, 2021

Authors: Foster, Carolyn C. | Fuentes, Molly M. | Wadlington, Lauren A. | Jacob-Files, Elizabeth | Desai, Arti D. | Simon, Tamara D. | Mangione-Smith, Rita

Article Type: Research Article

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. Show more

Keywords: Children with medical complexity, rehabilitative and habilitative services, physical therapy, occupational therapy, speech therapy

DOI: 10.3233/PRM-190647

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 505-516, 2021

Authors: Jaffe, Ashlee | Powell, Maura | Konieczny, Tami | Osweiler, Carlene | Kreher, Genna

Article Type: Research Article

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. Show more

Keywords: WeeFIM, inpatient rehabilitation, quality improvement

DOI: 10.3233/PRM-190668

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 517-524, 2021

Authors: Saviola, Donatella | De Gaetano, Katia | Galvani, Romina | Bosetti, Sara | Abbati, Paola | Igharo, Vivian | De Tanti, Antonio

Article Type: Case Report

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. Show more

Keywords: Coffin-Siris syndrome, ARID1A, rare genetic disease, behavioural rehabilitation, cognitive rehabilitation

DOI: 10.3233/PRM-200785

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 3, pp. 525-532, 2021