Journal of Pediatric Rehabilitation Medicine - Volume Pre-press, issue Pre-press
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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: Transcutaneous auricular vagus nerve stimulation (taVNS) is a non-invasive neuromodulation technique that may improve oromotor skills when paired with feeding in at-risk infants, but effects on other motor function and how motor function relates to white matter (WM) microstructure are unknown. METHODS: In this prospective study, infants failing oral feeds and slated for gastrostomy tube (G-tube) placement received taVNS paired with bottle feeding daily for 2-3 weeks. The effects of taVNS-paired feeding on general and specific head movements were investigated using the Specific Test of Early infant motor Performance (STEP) and diffusion MRI obtained before and after…taVNS treatment. Scores between and within groups (taVNS responders, attained full oral feeds; non-responders, received G-tubes) were compared. RESULTS: Performance on head movement items improved significantly in responders but not in non-responders (p < 0.05). Total STEP scores were significantly higher in responders after taVNS treatment than non-responders (p = 0.04). One STEP item, rolling by arm, was associated with significantly greater change in WM tract microstructure (p < 0.05) in the responders. CONCLUSION: These results suggest that pairing feeding with taVNS may affect specific head and neck movements to a greater extent in infants who are able to attain full oral feeds.
Keywords: Early motor movement, Oral-feed, STEP, Diffusion MRI, taVNS, infant development
Abstract: Virtual reality (VR) technology has seen increasing use in physical rehabilitation and in the management of acute and chronic pain. Functional movement disorders (FMDs) are a source of disability with no known association to neurologic pathology, and patients are generally offered multidisciplinary treatment approaches to improve functional movement. However, patients who are not compliant with rehabilitation may have persistent FMD and long-term disability. Given VR’s use in physical rehabilitation, it may serve as a useful adjunct for the management of FMD. Utilizing an application called MovementTM to create a playlist of targeted applications for the restoration of motor function…and balance, this case study presents the application of VR as a tool to engage patients in physical therapy for the management of FMD. The VR games were selected to encourage movement while customization of levels within the games facilitated achievement of physical therapy goals. Physical rehabilitation aided by VR, when used in collaboration with a multidisciplinary care team, may be used to facilitate recovery from FMD.
Keywords: Functional movement disorder, functional neurologic disorder, psychogenic movement disorder, conversion disorder, dyskinesias, virtual reality
Abstract: PURPOSE: The aim of this study was to assess serum vitamin D levels and related factors in children with cerebral palsy (CP). METHODS: One hundred and nineteen children with CP between the ages of 1 year to 10 years 9 months who were admitted to the children’s inpatient rehabilitation unit of a tertiary rehabilitation hospital between January 1, 2017, and December 31, 2018, were included in this study. Demographic and clinical characteristics were obtained from the patient files. CP types and serum 25 hydroxyvitamin D (25OHD) levels were recorded. Gross Motor Function Classification System (GMFCS) was used to…assess the functional level. RESULTS: Mean age was 5.1±2.9 years. Forty-two (35.3%) were girls, 105 (88.3%) were spastic, and 14 (11.7%) were ataxic and mixed type CP. Mean GMFCS level was 4 (IQR:2). Thirty-one (26.1%) were getting extra liquid feed while the rest were eating a normal diet. Mean serum 25OHD level was 27.4±15.7 (3–79) ng/mL. Vitamin D levels were normal in 68 children (57.1%), whereas 36 (30.3%) had vitamin D insufficiency and 15 (12.6%) showed vitamin D deficiency. Those whose serum vitamin D levels were within a normal range had a median age of 3.8 (IQR:4.2) years. On the other hand, mean age was 6.4 (4.3) years for those with low vitamin D level (p < 0.0001). Vitamin D level was 19.8 (21.4) ng/mL in those (n = 88) who had regular diets, whereas it was 31.0 [16 ] ng/mL in those (n = 31) who were getting extra liquid feed (p = 0.015). There was no statistically significant correlation between vitamin D level and gender, GMFCS, CP type, season or antiepileptic drug treatment. A binary logistic regression model showed that older age and having only regular meals were significant risk factors for low vitamin D. CONCLUSION: In this study, 42.9% of the children with CP had low vitamin D. Older children with CP or those who had regular diets were higher risk groups in terms of low vitamin D.
Abstract: Sjögren-Larsson syndrome (SLS) is a rare neurocutaneous disorder characterized by the presence of congenital ichthyosis, spasticity, and mental retardation. As with other rare genetic diseases, treatment is mainly symptomatic. Due to the absence of definitive treatment, lifelong follow-up and support of patients are important to improve the quality of life. A 7-year-old female child who was diagnosed as having SLS was referred to the rehabilitation clinic. After 20 sessions of a rehabilitation program, she started walking independently with the additional contribution of ankle-foot orthoses (AFOs). The contribution of the short-term rehabilitation approach and especially the administration of AFOs to the…independence level of the patient is emphasized herein.
Abstract: PURPOSE: Assess the effects of stay-at-home orders on access to services utilized by families of children with disabilities (CWD). METHODS: Cross-sectional weekly surveys were fielded over four weeks, during which western Pennsylvania was under stay-at-home orders. Respondents were divided into families of CWD (N = 233) or without CWD (N = 1582). Survey questions included measures of socio-economic status, and families of CWD answered questions regarding access to services pre and post-initiation of stay-at-home orders. Differences between families with and without CWD were analyzed using chi-square tests. RESULTS: Among families of CWD that had used services previously, 76.6% of survey…respondents stated that they had decreased access, with the greatest percentage experiencing loss among those previously utilizing early intervention (75.5%), outpatient therapies (69.1%), or school-based therapies (80.7%). Compared to families without CWD, families of CWD were more likely to report lower pre-COVID-19 annual incomes (p < 0.001), job or income loss related to COVID-19 (p < 0.001), and higher levels of perceived stress (p < 0.001). CONCLUSION: CWD experienced loss of services during stay-at-home orders implemented as COVID-19 mitigation measures. Due to decreased access to needed services, CWD may be at risk of medical complications and loss of developmental progress.
Abstract: PURPOSE: Noxious sensory inputs from the neonatal Intensive Care Unit (NICU) and lack of placental support negatively impact neuronal organization which has implications later in life. Evidence regarding early interventions (EI) on preterm neonates (PN) at high risk for developmental motor disorders is limited and inconclusive. This study focuses on neuromotor changes following Multi-Modal Stimulations (MMS) with sensory and motor interventions among stable hospitalized PNs. METHODS: This single-center, single-blinded pre-test post-test control group study design will recruit 60 PNs admitted to the Level II and III NICU of a recognized tertiary care teaching hospital by convenience sampling method…into two groups by block randomization. Group A (n = 30) will receive MMS trial lasting for 30 minutes per session for five days per week, until discharge of the neonate from the NICU; Group B (n = 30) will receive regular lifesaving care from the NICU. Anthropometric evaluation, physiological status, and Infant Neurological International Battery (INFANIB) will be the outcome measures used to analyze the neuromotor behavioral modifications among the hospitalized PNs. All the outcome measures will be recorded at baseline, after every five days (to compare trajectories of scores between the groups), and at the end of the intervention at the time of discharge of neonate from the NICU. RESULTS: Demographic and outcome measures will be assessed for their normality using the Shapiro-Wilk test. Within and between-group comparisons will be analyzed by the repeated measures analysis of variance/Friedman test and independent t-test/Mann-Whitney U test respectively. CONCLUSION: MMS, which includes both sensory and motor interventions, will, to the best of the authors’ knowledge, be the first trial for modifying the neuromotor behavior of hospitalized PNs. If successful, the clinical effects of this protocol could be revolutionary in mitigating developmental impairments of PNs.
Keywords: Early intervention, multisensory stimulation, newborn intensive care units, preterm infants
Abstract: PURPOSE: The need for pediatric post-acute facility care (PAC) is growing due to technological advances that extend the lives of many children, especially those with complex medical needs. The objectives were to describe [1 ] the types and settings of PAC; [2 ] the clinical characteristics of the pediatric patients requiring PAC; and [3 ] perceptions of PAC care delivery by clinical staff. METHODS: An online survey was administered between 6/2018 to 12/2018 to administrative leaders in PAC facilities that have licensed beds for children and who were active members of the Pediatric Complex Care Association. Survey topics…included types of health services provided; pediatric patient characteristics; clinical personnel characteristics; and perceptions of pediatric PAC health care delivery. RESULTS: Leaders from 26 (54%) PAC facilities in 16 U.S. states completed the survey. Fifty-four percent identified as skilled nursing facility/long-term care, 19% intermediate care facilities, 15% respite and medical group homes, and 12% post-acute rehabilitation facilities. Sixty-nine percent of facilities had a significant increase in the medical complexity of patients over the past 10 years. Most reported capability to care for children with tracheostomy/invasive ventilation (100%), gastrostomy tubes (96%), intrathecal baclofen pump (89%), non-invasive positive pressure ventilation (85%), and other medical technology. Most facilities (72%) turned away patients for admission due to bed unavailability occasionally or always. Most facilities (62%) reported that insurance reimbursement to cover the cost of providing PAC to children was not acceptable, and most reported that it was difficult to hire clinical staff (77%) and retain staff (58%). CONCLUSION: PAC in the U.S. is provided to an increasingly medically-complex population of children. There is a critical need to investigate financially-viable solutions for PAC facilities to meet the patient demands for their services and to sufficiently reimburse and retain staff for the challenging and important care that they provide.
Keywords: Post-acute care, subacute, pediatrics, children with medical complexity
Abstract: PURPOSE: Coffin-Siris syndrome (CSS) is a rare genetic disorder characterized by the presence of particular facies, congenital malformations, intellectual developmental disorder, behavioral issues, and speech and language impairment. Thorough neuropsychological assessments in the case of CSS have been reported infrequently, and its subdomains are poorly defined. A detailed description of the clinical, neurocognitive, behavioral, socio-adaptive sequelae of the patient with CSS is provided. RESULTS: The clinical diagnosis in the patient was confirmed by genetic analysis, which identified the presence of mutation of ARID1B gene; the parents’ Sanger sequencing reported normal. The neuropsychological assessments revealed borderline intellectual functioning (IQ-75,…verbal > performance) with a mild socio-adaptive deficit score of 64 as suggested by the adaptive scale. The behavioral profile reported that the child had significant difficulties in the attention subdomain with concern in social and thought subdomains. The child met the profile for mild severity of Autism Spectrum Disorder and did not meet the criteria for Attention Deficit Hyperactivity Disorder. In addition, the child had scholastic difficulties in reading and mathematical skills. CONCLUSION: Neurocognitive, behavioral, socio-adaptive functioning and comorbidity assessment in order to provide holistic management of such children after thorough evaluation is essential for their overall functioning.
Abstract: PURPOSE: Down Syndrome (DS) is a common genetic disorder caused by trisomy 21. Due to cognitive challenges associated with DS, individuals often experience difficulty performing activities of daily living (ADLs), at levels that can range from mild to significant. This study aimed to measure psychometric properties of the Italian version of the Pediatric Evaluation of Disability Inventory (PEDI-I) in the DS population. METHODS: The PEDI-I was administered to children with DS. The internal consistency was examined using Cronbach’s Alpha. Test-retest reliability was demonstrated by intraclass correlation coefficient (ICC) and Bland–Altman plots. The concurrent validity was evaluated with the…Italian version of the Barthel Index. RESULTS: The PEDI-I was administered to 54 children with DS. Cronbach’s Alpha showed statistically significant values (0.899 –0.986). The ICC confirmed the reproducibility of the scale with a range of (0.988 –1), while Bland-Altman plots showed a smallest detectable change of (0.18–1.63). The Pearson Correlation Coefficient with the Barthel Index showed statistically significant values for all PEDI-I subscales (range 0.75–0.95). CONCLUSION: The study provides evidence of good test-retest reliability and convergent validity when used in children with DS. Other psychometric proprieties need to be investigated in future studies.
Keywords: Down syndrome, PEDI, reliability, psychometric properties