Journal of Pediatric Rehabilitation Medicine - Volume 15, issue 3
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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: Social media represents a significant source of health information for the public, especially during the COVID-19 pandemic where gatherings are limited. It is important for pediatric physical medicine and rehabilitation physicians to understand how their patients use these platforms in order to educate the public and provide sound medical advice on social media. Given the lack of current guidelines on medical education through social media, the purpose of this paper is to provide an overview of various online social media platforms and describe how they can be utilized to enhance pediatric patient education. It is necessary to understand the different…educational functions and limitations of the various social media platforms. This text provides a comprehensive overview of different social media platforms, their educational uses, limitations, and sample accounts. Relevant to the COVID-19 pandemic, social media can improve the efficiency of educational delivery and clinic workflow. Although social media is not meant to replace physician-patient relationships, it can be used as a surrogate for health information and improve— even start— physician-patient relationships. Despite the benefits of social media, pediatric physiatrists may be hesitant to utilize these platforms for several reasons. This text provides an overview of common barriers to social media usage by physicians and recommendations to overcome them. Given that the pandemic has led to increased social media usage, physicians should be aware of its implications on patient care and how they can be used to enhance the practice of pediatric physical medicine and rehabilitation. As social media usage by both patients and physicians grows, more research is needed to create recommendations on how pediatric physiatrists can best utilize social media to educate the public in an enjoyable manner while maintaining a professional image.
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Keywords: Social media, physical medicine and rehabilitation, physiatry, YouTube
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.
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Keywords: Post-acute care, subacute, pediatrics, children with medical complexity
Abstract: PURPOSE: Objectives included identifying programs that provide pediatric inpatient rehabilitation services (IPRs) across the United States (US), describing differences in location, admission criteria, available resources, personnel and staffing, and populations served between pediatric rehabilitation programs with the overall goal to evaluate rehabilitation needs in geographical areas with limited access for targeted program development. METHODS: Online survey emailed to pediatric physiatrists who worked or directed IPRs and completed between December 2018 to March 2019. RESULTS: Fifty respondents completed the survey of the seventy-one distributed. Fifty percent of pediatric inpatient rehabilitation services are within a free-standing pediatric hospital…with an average of 14 beds. Twenty-eight programs provide acute services with almost half providing accredited specialized programming. All respondents reported that inpatient rehabilitation treatment teams included pediatric physiatry, nursing, social work, and core therapy disciplines. CONCLUSION: Although characteristics of pediatric inpatient rehabilitation services vary, similarities exist with respect to team composition, clinical coverage, admission or documentation criteria, and outcome measures. The geographic distribution of pediatric IPRs including available specialty programming reveals resource-limited areas. Results from this study emphasize how practice standards or fiscal limitations impact program structure, resources, and ultimately short- and long-term healthcare outcomes among the population of pediatric rehabilitation patients.
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Abstract: PURPOSE: The current study’s aims were to (1) examine long-distance walking ability (6-minute walking test [6MWT]) and walking hemodynamic responses (i.e., heart rate) among youth with functional neurological symptom disorder (FNSD) before and after an integrative pediatric rehabilitation (IPR) program; and (2) explore factors predicting improvement in walking ability. METHODS: Thirty-one youth with FNSD participating in an IPR program were recruited. The IPR program was activated biweekly in an ambulatory format. Study measures included the 6MWT, hemodynamic characteristics, rate of perceived exertion (RPE), pain-intensity perception, and Child’s Somatization Inventory-24 (CSI-24). All measures were conducted upon admission to the…IPR and discharge. RESULTS: Findings indicated a significant increase in 6MWT distance, as well as decreases in heart rate, RPE, and pain-intensity perception from admission to discharge. At admission, CSI-24 and pain intensity predicted 6MWT distance (adjusted R2 = 0.68). Pain intensity predicted discharge 6MWT distance (adjusted R2 = 0.18). Initial 6MWT predicted changes in 6MWT distance from admission to discharge (adjusted R2 = 0.33). CONCLUSION: Using an integrative rehabilitation approach increases walking distance and decreases pain-related symptoms in youth with FNSD, emphasizing the need for collaboration between physical therapists and pediatric psychologists. Moreover, changes in walking ability may increase participation and thus should be the focus of IPR.
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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.
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Keywords: Early motor movement, Oral-feed, STEP, Diffusion MRI, taVNS, infant development
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 Multimodal stimulations (MMS) with sensory and motor interventions among stable hospitalized PNs. METHODS: This single-center, non-blinded pre-test post-test control group study 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.
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Keywords: Early intervention, multisensory stimulation, newborn intensive care units, preterm infants
Abstract: PURPOSE: This initiative aimed to assess adherence to Scottish Rite for Children’s serial casting protocol for children with idiopathic toe walking (ITW), factors related to adherence, and outcomes after education regarding the protocol. METHODS: 60 patients aged 7.1±2.7 years who completed serial casting were examined at baseline phase (n = 30) and post-education phase (n = 30). Protocols include weekly serial casting for 4 to 6 weeks to achieve 10° of ankle dorsiflexion (ADF) passive range of motion (PROM) with knees extended (KE), assessing the foot posture index (FPI-6) and single leg stance (SLS). Baseline phase evaluated adherence to protocols.…Education phase evaluated factors related to adherence and education regarding serial casting findings. Post-education phase evaluated the impact of the education phase. RESULTS: Serial casting averaged 4.8±1.5 weeks (n = 60). ADF PROM was measured with 100% adherence. ADF PROM KE averaged –10.7° pre-cast and significantly improved to +6.5° post-cast (n = 60), and it significantly improved post-cast post-education (p = 0.04). FPI-6 and SLS adherence significantly improved post-cast post-education. FPI-6 total score averaged +5.3 at baseline and +5.8 post-cast (n = 35). CONCLUSION: Education of staff in serial casting protocols improved adherence and patient outcomes. Patients with ITW and ADF PROM KE –10° benefit from serial casting to improve PROM and to allow for orthotic use post-casting.
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Abstract: PURPOSE: Adolescent idiopathic scoliosis (AIS) is associated with perturbation of orthostatic postural control. In humans, orthostatic postural control is organized around the gravitational vertical (GV). Perception of the GV involves a bottom-up process (central integration of multisensorial information) and a top-down process that uses cognitive mechanisms relying on body image. This study hypothesized that AIS would be associated with an erroneous central representation of verticality. The objective was to demonstrate an altered top-down process of sense of verticality in AIS. METHODS: This multicenter, single-blind, case-control study evaluated 63 adolescent girls with AIS divided into two groups (major AIS…(n = 31) and minor AIS (n = 32)) and 30 matched non-scoliotic adolescents. Participants scored their perception of trunk appearance in an upright position using a pictographic scale. The outcome measure was the difference between perception score and real trunk deformity. RESULTS: Participants with major AIS presented with misperception of their trunk appearance in an upright position when compared with those with minor AIS or controls. CONCLUSION: Adolescents with major AIS underestimate their trunk deformity in an upright position. This suggests an altered representation of body image, affecting top-down control of sense of verticality.
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Keywords: Adolescent idiopathic scoliosis, postural control, verticality perception, body image
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.
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Keywords: Down syndrome, PEDI, reliability, psychometric properties
Abstract: PURPOSE: The Measure of Processes of Care for Service Providers (MPOC-SP) is a valid and reliable instrument to measure the professionals’ perception of the extent to which they apply the principles of family-centered services in care for children with disabilities. This study aimed to evaluate the validity and reliability of the Korean translation of the MPOC-SP (Korean MPOC-SP). METHODS: The Korean MPOC-SP was completed by 132 rehabilitation service providers in 5 provinces in South Korea. Analyses for internal consistency, construct validity, and test-retest reliability were performed. RESULTS: The estimates of internal consistency (Cronbach’s alpha) of the…four scales of the Korean MPOC-SP ranged from 0.67 to 0.92. All the scales correlated highly with the other scales (r ranging from 0.61 to 0.77). In addition, all the items exhibited high item-total correlations (r s ranging from 0.40 to 0.83). Three scales had moderate to good reliability with ICCs ranging from 0.57 to 0.78; the ‘providing general information (PGI)’ scale showed low reliability (ICC 0.22). CONCLUSION: The Korean MPOC-SP can be considered a valid instrument for group-level research purposes with acceptable internal consistency, but caution is warranted regarding the low test-retest reliability of the PGI scale.
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Keywords: Family-centered care, pediatric rehabilitation, psychometric assessment, processes of care, self-assessment
Abstract: PURPOSE: Collaboration between physical therapists and caregivers of children who receive physical therapy is integral to providing family-centered care. Successful collaboration depends upon the therapeutic relationship built within the caregiver-therapist dyad. However, the nature of these relationships is not well understood. The purpose of this study was to explore the caregiver-pediatric physical therapist relationship from the perspectives of the caregiver and pediatric physical therapist. METHODS: A qualitative multiple case study methodology was used; a caregiver and pediatric physical therapist represented a bounded case. Each caregiver and therapist engaged in separate, semi-structured, in-depth interviews. RESULTS: Through within-…and cross-case coding, three themes were identified: physical therapist as a guide, the caregiver-pediatric physical therapist connection, and professional qualities and performance. CONCLUSION: These themes help to provide an understanding of the therapeutic relationships that can occur between caregivers and pediatric physical therapists, which can help support effective collaboration as part of providing family-centered care.
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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.
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Abstract: Determining when a child returns to school after an acquired brain injury is difficult to assess. Many factors affect a successful hospital-to-school reintegration. The hospital school simulation allowed the Acute Pediatric Inpatient Rehabilitation Unit (IRU) interdisciplinary team to assess how the patient was functioning at specific stages of the patient healing process to target goals that explicitly helped the patient safely reintegrate into school. A patient with an acquired brain injury (ABI) participated in a hospital school simulation where a novel school simulation rubric (SSR) tool was used to evaluate completion of specific activities the patient would experience in a…traditional classroom. Results were shared with the IRU team so accommodations and modifications could be made to the IRU school recommendations letter based on the results of the final SSR. Preliminary results were found to benefit the patient as they reintegrated back to school. This study highlights the need for ongoing communication between hospital providers and educational personnel to provide patients with academic supports for school reintegration.
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Keywords: Acquired brain injury, school reintegration, special education
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.
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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.
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Abstract: CASE DESCRIPTION: A 2-month-old child required a bilateral limb amputation, right transtibial, and left transfemoral after a deep burn compromising one-third of the body surface area. Traumatic amputations of lower limbs at such an early age are uncommon and underreported in the literature, especially in middle-income countries. OBJECTIVE: To describe the long-term follow-up of the prosthetization process after traumatic bilateral amputation of a 2-month-old patient. TREATMENT: The process started with compensatory prostheses for independent sitting, followed by exoskeletal devices with SACH feet, and finally introduced dynamic feet and knee to achieve progressively independent gait.…OUTCOMES: The patient achieved functionality, autonomy, and social interaction for his age. The habilitation process continues to improve his independent gait and support upcoming life changes. CONCLUSION: Through a multidisciplinary approach, family support, and timely changes of device components according to the child’s development, this patient has been able to achieve a normal life.
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