Journal of Pediatric Rehabilitation Medicine - Volume 15, issue 2
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The Journal of Pediatric Rehabilitation Medicine (JPRM): An Interdisciplinary Approach Throughout the Lifespan is designed to parallel the multidisciplinary teams caring for children, adolescents and adults with childhood-onset physical disabilities and complex care needs worldwide. Published quarterly, topics include, and are not limited to, cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, limb deficiency, muscular dystrophy, stroke, cancer, developmental delays, and rare disorders. Furthermore, the journal welcomes papers dedicated to pediatric rehabilitation from a global health perspective.
The aim of JPRM is to engage a diverse group of international experts with the goal of providing readers with comprehensive information regarding children and adolescents requiring rehabilitation. JPRM brings together specialists from medicine, nursing, psychology, social work, nutrition, child life, family centered care, and occupational, physical, and speech therapy. For manuscript submissions, authorship involving at least two different specialties is encouraged, although not required, to facilitate a transdisciplinary and collaborative approach. Manuscripts are blinded and peer reviewed including biostatistical analysis. Authors are invited to submit original research, systematic and scoping reviews, guidelines, protocols, care pathways, case reports, book reviews, commentaries, editorials, and dates for future conferences.
Abstract: Peer review is an important process that produces the evidence-based medicine that guides the standards by which we provide care. We all have a role to contribute to the advancement of our field through involvement in this process. Opportunities and guidance to the next generation of reviewers is essential to continue to move our field forward and is supported by the JPRM Residents and Fellows Program.
Keywords: Peer review, residents, fellows, pediatric rehabilitation medicine
Abstract: PURPOSE: A multi-institutional and multidisciplinary pediatric physical medicine rehabilitation healthcare system was developed to meet regional patient needs. METHODS: A ten-year experience meeting regional patient care needs in northeast Florida and southern Georgia is described. RESULTS: A collaborative effort of multiple institutions resulted in the recruitment of a pediatric physical medicine and rehabilitation physician in June 2009, followed by planning stages that included initiation, development, and structuring of the program. Phase I : selection of clinic spaces, training of existing staff, creating specialized programs. Phase II : recruitment of an additional physician and dedicated advanced practice…registered nurse, hospital nursing and radiology personnel training, development of protocols for specific disease entities, formulating a team approach for patient care, development of dedicated clinics for disease processes. Phase III : incorporating care into existing multidisciplinary clinics, education of existing physical, occupational, and speech therapists in dedicated remote clinics on early detection and management of specialty issues. Phase IV : ongoing education provided by rehabilitation faculty. Quality improvement aspects included outcome studies, coordinating with the Cerebral Palsy Research Network databank, and others. All phases overlapped in time and are ongoing, adapting to new needs. CONCLUSION: A collaborative program can be created to provide comprehensive pediatric physical medicine and rehabilitation in regions lacking such a system.
Abstract: PURPOSE: Cognitive impairments frequently occur in children and adolescents with acquired brain injury (ABI), causing significant disabilities in daily life. Current paper-and-pencil neuropsychological tests do not capture the complexity of daily life activities, often failing to objectify subtle cognitive impairments. Virtual Reality (VR) simulations might overcome this discrepancy, as it resembles daily life situations. The aim of this study was to evaluate the feasibility, user-experience and preference of a VR simulation with a non-immersive (computer monitor; CM)) and immersive (head mounted display; HMD)) VR setup. METHODS: Children and adolescents with ABI (n = 15) and typically developing children and…adolescents (n = 21) completed a VR-task with a CM and HMD. RESULTS: Both VR setups were feasible for children and adolescents with ABI. User-experience was enhanced with the HMD compared to CM in both groups. Side effects were low and comparable for both groups, and there were no differences between setups (HMD and CM). The majority of the children and adolescents with ABI preferred the HMD. CONCLUSION: VR simulations appear feasible to use in paediatric rehabilitation. The preference for a VR setup should be discussed with the child. Further research is needed to develop more sensitive measures to further explore the potential of VR for cognitive assessment.
Abstract: PURPOSE: Congenital myotonic dystrophy (CDM) results in hypotonia and acute respiratory distress at birth. Previous studies show that prolonged periods of intubation (>4 weeks) correlate with increased mortality rates. The objective is to describe the use and duration of respiratory support in newborns with CDM and how these relate to mortality. METHODS: A retrospective chart review was performed at a tertiary pediatric hospital among children with confirmed diagnosis of CDM. The main outcome measures were: mortality, duration of invasive mechanical ventilation (IMV) and non-invasive partial pressure ventilation (NIPPV), along with long-term use of respiratory support and equipment.…RESULTS: A total of 18 subjects met inclusion criteria, 83%.f which had documented respiratory distress at birth, 39%.equired NIPPV, and 50%.equired intubation in the neonatal period. The earliest NIPPV was initiated at day one of life, and the latest extubation to NIPPV was at 17 days of life. CONCLUSION: This cohort required IMV for shorter periods with earlier transitions to NIPPV which suggests a possible change in practice and earlier transition to NIPPV recently. Further data are needed to determine if there is a possible correlation between the need for NIPPV/IMV and mortality rates.
Abstract: PURPOSE: Early mobility (EM) and patient communication have known benefits for critically ill patients, but perceived barriers exist, notably related to family and caregiver concerns. Caregiver perceptions of an EM and communication therapy protocol in the pediatric intensive care unit (PICU) were assessed. METHODS: Caregivers of PICU patients at a free-standing academic children’s hospital completed a survey using a Likert-type agreement scale on their perceptions surrounding the safety of EM, benefits of EM and communication, and barriers to EM and communication services. RESULTS: Forty caregivers completed the survey. Most agreed or strongly agreed that EM helped…their child get stronger (76%), improved their child’s mood (57%), helped them to be involved in their child’s care (86%), and improved their child’s overall experience (78%). Most disagreed with statements relating to EM causing fear or pain (57%). Caregivers agreed that communication therapy improved overall ICU experience (75%). Free-text comments emphasized meaningful relationships with rehabilitation and unit staff. CONCLUSION: Caregivers perceived EM and communication interventions as enriching to their child’s ICU experience and the majority did not perceive that EM caused fear or pain.
Keywords: Early mobility, PICU, barriers, communication, physical therapy
Abstract: PURPOSE: To compare scoring systems and their ability to capture short and long-term recovery of paediatric patients with acute encephalitis. To identify clinical predictors of short-term outcomes by correlating functional outcome measures at 1 month post diagnosis of acute encephalitis. METHODS: Patients with encephalitis diagnosed between July 2011 and 2016 based on Granerod’s criteria were studied in this retrospective cohort study. Functional outcome scores on WeeFIM, LOS, GOS-E, mRS and ICF at initial presentation and 1, 3, 6 and 12 months later were compared. RESULTS: WeeFIM and LOS scores both showed maximum change in the first 3…months, reflecting highest recovery in this period. With WeeFIM, the greatest change occurred within the first month following diagnosis. On univariate analysis, seizure frequency in the first month, presence of movement disorder, presence of autonomic dysfunction and lower baseline functional score was associated with poorer WeeFIM scores at 1 month. The latter three variables remained statistically significant on multivariate analysis. CONCLUSION: WeeFIM is a potentially preferred functional outcome assessment tool as it demonstrated greatest recovery within the first month due to a trend of high responsiveness and relatively low ceiling effect. Presence of autonomic dysfunction and movement disorders at diagnosis correlated with poorer outcome at 1 month post diagnosis.
Abstract: PURPOSE: The Radboud Dysarthria Assessment (RDA) was published in 2014. Adaptation into a pediatric version (p-RDA) was required because of relevant differences between children and adults. The purpose of this study was to assess the feasibility of the p-RDA and to test intra-rater and inter-rater reliability as well as the validity of the two severity scales (function and activity level). METHODS: Video recordings were made of 35 participants with (suspected) dysarthria (age 4 to 17 years) while being assessed using the p-RDA. Intra-rater reliability was assessed by one, and inter-rater reliability by two experiments using the Intraclass Correlation…Coefficient (ICC). Validity of the severity scales was tested by correlating the consensus scores with the independently rated scores on four communication scales, three mobility scales, and one self-care scale using Spearman correlation coefficients (r s ). RESULTS: The assessment was applicable for 89% of the tested sample, with good intra-rater and inter-rater reliability (ICC = 0.88–0.98 and 0.83–0.93). The p-RDA severity scales (function and activity level) correlated from substantially to strongly with the communication scales (r s = 0.69–0.82 and 0.77–0.92) and self-care scale (r s = 0.76–0.71) and correlated substantially with the mobility scales (r s = 0.49–0.60). CONCLUSION: The feasibility, reliability and validity of the p-RDA are sufficient for clinical use.
Abstract: PURPOSE: This study aimed to gain knowledge about which walking-related everyday life activities and situations are relevant for parents of children with a neuromotor disorder and adolescents undergoing inpatient neurorehabilitation. METHODS: Two focus group interviews with purposive samples were performed, one with seven parents of children with acquired or congenital neuromotor disorders, and one with four adolescents undergoing inpatient neurorehabilitation. Data were analyzed with a qualitative descriptive research approach. RESULTS: Parents identified 120 activities that they considered as relevant in their everyday life and the adolescents identified 113 activities. Based on these activities, ten different categories…that have a direct relation to walking in everyday life were identified. “Dealing with obstacles,” “moving in public areas,” “moving in a group,” and “walking in general” were perceived as the highest priority categories by the focus group participants. CONCLUSION: Activities incorporating walking tasks related to moving in a group or public areas and dealing with obstacles are perceived as meaningful by adolescents and parents in their everyday life. Addressing these categories in the goal setting process with families could facilitate the definition of walking-related goals aimed at increasing children’s and adolescents’ independence in daily life.
Abstract: Rett syndrome (RTT) is a severe neurodevelopmental disorder resulting in a wide range of functional impairments and therefore greatly impacts the lives of both patients and their families. While genetic and medical aspects have been studied for several decades, rehabilitation intervention research is still in its infancy. In this study, the investigating researchers have presented a rehabilitative framework by using music therapy for girls with RTT. This model is founded upon the use of music therapy in light of Stern’s proposal of subjective experience and affect attunement; it also refers to Rosenbaum’s family-centered rehabilitation medicine perspective. This study both describes…the theory behind this intervention and presents a newly developed outcome measure. This novel tool may have future clinical and research applications. Music therapy for patients with RTT has not been well researched yet, and, as a result, is not universally recommended. However this study’s findings suggest that music therapy is an important component of multidisciplinary therapy. Further collaborative research should be encouraged in order to study and implement the use of music therapy in the treatment of severe disabilities. Projects such as the Enablin+ program with the support from the European Commission constitute fundamental tools in promoting integrative medical research and international networks.
Keywords: Rett syndrome, affect attunement, family-centered medicine, rehabilitation, sense of self, integration
Abstract: BACKGROUND: Wernicke’s encephalopathy (WE), a neurological disorder due to the deficiency of thiamine, is often underdiagnosed in the pediatric population. The classic triad of mental status changes, oculomotor abnormality, and ataxia is observed in only 16–21% of all pediatric presentations. Wernicke’s is most often associated with alcohol dependence, but also malignancy, parenteral nutrition, and gastrointestinal (GI) malformations. The correlation between following a Ketogenic diet and acquiring Wernicke’s, however, has not previously been reported. CASE REPORT: A 16-year-old previously healthy male presented with an eleven-day history of neurological deficits and GI upset. The patient had recently lost one hundred…pounds while following a “ketogenic” diet. He was subsequently diagnosed with Wernicke’s, received intravenous thiamine, and was transferred to the inpatient rehabilitation, where he received extensive diet education. After making significant functional improvement, he was discharged home. RELEVANCE: This case illustrates the importance of including Wernicke’s in the differential diagnosis when a pediatric patient presents with neurological deficits after rapid weight loss. Wernicke’s encephalopathy may be fatal in the pediatric population, therefore, it must be treated immediately if clinically suspected. Children presenting with Wernicke’s would benefit from early intervention, intensive inpatient rehabilitation, and comprehensive education regarding the role of food and exercise on weight loss and health.