Journal of pediatric rehabilitation medicine最新文献

PurposeThis project aimed to describe the current status and future needs for the management of pediatric neural tube defects (NTDs) at a referral center in Mwanza, Tanzania, and thus can offer a model for other affected areas in sub-Saharan Africa.MethodsA descriptive study design was used to collect and describe data from pediatric patients with NTDs admitted to and treated at Bugando Medical Center in collaboration with Mwanangu Development Tanzania in Mwanza, Tanzania.ResultsBetween January 2018 and August 2022, a total number of 3160 children with NTDs presented to a referral medical center. Thirty-one percent of the patients were from Mwanza, 13% from Geita, 11% from Tabora, 10% from Simiyu, and the rest came from more distant regions of Tanzania. Hydrocephalus and spina bifida were the most common NTD diagnoses recorded that required ventriculoperitoneal shunt interventions in the neurosurgical services.ConclusionEarly neural development disorders are common in sub-Saharan Africa, with spina bifida and hydrocephalus being the most prominent NTDs. The treatment and special education of affected children and adolescents are major public health challenges. As the development of protocols and guidelines for neurosurgical procedures is needed to improve the burden of pediatric hydrocephalus in sub-Saharan Africa, a report on how this is done simply, practically, and effectively here at a referral medical center in Tanzania may benefit countries with similar health issues.This study was approved by the Regional Ethic Review Board in Mwanza Tanzania (Certificate No. CREC/682b/2023).

BackgroundChiari II malformation occurs in one of 1000 live births and causes posterior fossa malformation. In Chiari II malformation, a lumbosacral meningomyelocele is nearly always present. Achondroplasia is the most common cause of dwarfism, occurring in one of 26,000 live births. Both Chiari II malformation and achondroplasia can cause compression at the craniocervical junction and consecutive hydrocephalus.Case presentationThe case of a three-year-old male with Chiari II malformation, lumbosacral meningomyelocele, and achondroplasia is presented. To the authors' knowledge, this is the second such case that has been reported so far. A surgical therapy of a lumbosacral meningomyelocele and an implantation of a ventriculoperitoneal shunt was performed in the first month after birth. At the age of two years, occipitoatlantoaxial stenosis required spinal decompression and laminectomy. The child presented in the outpatient department with life-threatening respiratory dysregulation, comprising prolonged expiratory apnoea with cyanosis (PEAC), acquired central hypoventilation syndrome, central sleep apnoea and obstructive sleep apnoea. He also presented with delayed language development, paraplegia, a neurogenic bladder, and dwarfism. The patient received non-invasive ventilation and had an individually adapted set of assistive and therapeutic devices. Cough insufficiency necessitated the adaption of mechanical insufflation-exsufflation. Speech and language therapy, physiotherapy, and occupational therapy were performed regularly. The patient started attending kindergarten just before his fourth birthday. At his one year follow-up, the patient's language capacities substantially improved and PEAC was not reported anymore.ConclusionWhen osseous, cerebral, and spinal disease are accompanied by life-threatening respiratory impairment, the following factors can reduce the impact of disability and can foster participation: treatment by an interdisciplinary team, the availability of assistive and rehabilitative technologies, living in a barrier-free home, a developmentally appropriate environment, and the continuous presence of trained caregivers.

PurposeThis study aimed to evaluate long-term functional and radiological outcomes as well as parents' perception of change and overall satisfaction following hip reconstructive surgery in children with cerebral palsy (CP).MethodsMedical charts of children between three and 18 years of age with CP who had surgery between 1993 and 2014 by the same surgeon were reviewed. The study sample consisted of 44 children (Gross Motor Function Classification System levels I-V) aged 2-18 years representing 60 hips. Mean follow-up was 8.4 years [1.8-17.5]. A final follow-up evaluation was held to obtain post-operative anteroposterior pelvic radiographs and administer patient-reported outcomes to the caregivers.ResultsCare and Comfort Hypertonicity Questionnaire scores showed that 74-79% of caregivers reported no difficulty post-surgery in terms of child's pain or discomfort during position changes, when participating in general activities, or during sleep. The Lower Extremity Parent-Rated Change Form showed that 58-76% of caregivers reported a better status in their child's overall health, leg function, activity level, and pain post-surgery. Seventy-six percent of the caregivers indicated satisfaction with the overall changes since the surgery. For the 45 hips with both pre-operative and follow-up radiological outcomes, migration percentage improved significantly (p < 0.001) by 36.7%, and there was a 62.2% increase in the number of hips that were located post-operatively compared to pre-operatively. Acetabular coverage improved significantly (p < 0.001) from non-covered to covered in 46.7% of the hips and Shenton's line improved significantly (p < 0.001) from non-intact to intact in 66.7% of the hips.ConclusionHip reconstructive surgery improved long-term functional and radiological outcomes, as well as quality of life for children and caregivers, while changes were perceived as satisfactory to the families. Evaluating pain, function, and satisfaction is important to measure the impact of hip reconstructive surgery on daily life.

Recently, the National Institutes of Health (NIH) announced possible restructuring of indirect and administrative costs for funded research. Many entities have raised concern about the impacts that such funding restructuring may have on the future progress of biomedical investigation. The NIH has historically played a key role in research on relevant chronic conditions, including spina bifida and cerebral palsy. Such research funds have not only provided occasion for basic science investigational opportunities but also have allowed for enquiry into clinical, social, and environmental factors that impact disability-specific health outcomes, including those present in some of the world's most vulnerable communities. However, the journal's editorial board is nonetheless encouraged to see the growth and change of Journal of Pediatric Rehabilitation Medicine (JPRM), as the journal evolves from a special issue format to a collections format. The collections will serve as ever-growing "homes" for the latest research on childhood-onset physical disabilities and complex care needs, with the added benefit of greater accessibility and improved user interface. Furthermore, as reflected in this issue, JPRM will continue to offer a platform for research in multidisciplinary care of childhood disability throughout the lifespan as we weather the changes of time together as a committed global community of clinicians and investigators.

PurposeThis study aimed to translate the English version of the Mini-Eating and Drinking Ability Classification System (Mini-EDACS) into Dutch and assess its psychometric properties and applicability among preschool-aged children with cerebral palsy (CP) in the Netherlands.MethodsForty-eight children with CP (18-36 months) were included. Inter-rater reliability of the Dutch version of the Mini-EDACS was assessed between two speech and language therapists (SLTs) and between two SLTs and parents. Construct validity was established by hypothesis testing regarding the expected strength of the correlation between Mini-EDACS level and sum score of (a) the Pediatric Eating Assessment Tool (PEDI-EAT-10) and (b) the Montreal Children's Hospital Feeding Scale (MCH-FS).ResultsThe level of agreement for Mini-EDACS level was almost perfect between SLTs (weighted kappa (k_w) = 0.83) and substantial between parents and SLTs (parents vs SLT-1: k_w= 0.77; parents vs SLT-2: k_w= 0.70).Kendall's tau-b correlation between Mini-EDACS and PEDI-EAT-10 was 0.66 (p < 0.001), slightly lower than hypothesized, and 0.52 (p < 0.001) between Mini-EDACS and MCH-FS, aligning with the hypothesis. Applicability was found to be good.ConclusionThe Dutch version of the Mini-EDACS showed sufficient inter-rater reliability, construct validity and applicability and can be used in clinical care in the Netherlands to promote unambiguous communication between healthcare professionals and parents.

Purpose: Acquired brain injury (ABI) is prevalent among young people (4-25 years). When ABI-related problems persist, treatment in a rehabilitation center (RC) may be indicated. However, there is wide variability regarding the delivery of care across Dutch RCs, including assessments, interventions, and psychoeducational (PE) materials. The aim was to create a consensus-based framework with preferred assessments, interventions, and PE-materials to be used in pediatric ABI rehabilitation. A national framework could optimize the delivery of comparable care for this population.

Methods: For this three-round Delphi study, healthcare professionals (physiatrists, psychologists, social workers, physical/occupational/speech/language therapists) from RCs providing care for young people with ABI were invited to participate. In the first two (online) rounds, currently used assessments/interventions/PE-materials were collected, stepwise-prioritized, subsequently listed per discipline, and classified per International Classification of Functioning (ICF) domain. Results from rounds one/two were discussed in a consensus meeting (in person), aiming to reach agreement on assessments/interventions/PE-materials in the national framework and how to use them in current practice.

Results: Seventy-four healthcare professionals from 12 RCs participated. After Delphi round one, 163 assessments, 39 interventions, and 64 PE-materials were collected. After round two, the selection was narrowed down to n = 51/n = 34/n = 28, respectively. After round three, consensus was reached on 37 assessments, 25 interventions (divided over all disciplines/classified per ICF domain), 27 PE-materials, as well as on the use of the framework by all participating RC to enhance clinical reasoning in current practice.

Conclusion: A consensus-based national framework in ABI rehabilitation has been developed and is now available to optimize the delivery of care for young people with ABI across Dutch RCs.

PurposeMost children hospitalized with traumatic brain injury (TBI) acquire new impairments that impact function and health-related quality of life. However, there is a lack of standardized, multidisciplinary, longitudinal rehabilitative services for children with TBI.MethodsThis single center, retrospective study evaluated rehabilitative services during acute hospitalization and identified the frequency of unmet needs, defined as new or untreated impairments at the first acquired brain injury (ABI) clinic visit.ResultsAnalysis was conducted for 148 children hospitalized for TBI (mild/complicated mild [51%], moderate [14%], or severe [35%]) and evaluated at ABI clinic (median of 63 [43-122] days post-hospitalization). Eighty-two (55%) patients had at least one unmet need at initial clinic assessment. Executive function impairments were found in children with mild/complicated mild TBI (32%), despite only 5% of them receiving speech therapy (ST) prior to the clinic. Only 13% of children with severe TBI received outpatient ST at first clinic visit despite 26% and 20% identified as having executive function and communication impairments. Earlier consultation of physical therapy, occupational therapy, ST, and physiatry was associated with discharge home versus inpatient rehabilitation, all p < .05.ConclusionThis study demonstrates the importance of timely inpatient acute hospital rehabilitative care coordinated with longitudinal, multidisciplinary follow-up for children after TBI.

PurposePatients who have undergone lower limb surgery require rehabilitation to regain movement and function in the affected leg. Unfortunately, physical rehabilitation can be painful, reducing compliance and recovery. This feasibility study aimed to demonstrate that immersive virtual reality (IVR) applications can provide potential benefits of anxiety reduction and pain distraction for children during gait rehabilitation, increased engagement and enjoyment, and improved perceived walking quality.MethodsThis study included 15 children aged 11-16 who required weight-bearing rehabilitation following lower limb surgery. A mixed methods (quantitative and qualitative) approach and a multidirectional perspective (patients, parents and physiotherapists) were adopted to measure. Changes in anxiety (General Anxiety Disorder-7) and pain (visual analogue scale) before and after the intervention were assessed. Qualitative data were collected through interviews with children, their parents, and physiotherapists, focusing on their experiences, satisfaction, perceived effectiveness, and acceptability of the IVR intervention.ResultsResults demonstrated that IVR for rehabilitation after lower limb surgery in children (1) reduced anticipatory anxiety; (2) reduced the level of pain experienced during gait rehabilitation; (3) improved rehabilitation, such that children were walking more than expected and with better quality; (4) increased confidence; (5) made rehabilitation more enjoyable; and (6) was delivered via a system that was easy to learn and accept.ConclusionThis rehabilitation IVR is the first product of its class for paediatric lower limb postoperative rehabilitation. These preliminary results will inform improvements to the system in a future multi-site study with a large calculated sample size to demonstrate its clinical effectiveness and safety in acquiring medical device markings and adoption.

PurposeThis retrospective cohort study sought to examine participant skill and functional progression in an adaptive snow sports program for children and young adults with disabilities.MethodsOne hundred twelve individuals, majority male, who participated in at least 2 adapted ski or snowboard sessions were evaluated by trained adaptive instructors. The primary outcome measure was standardized skill level ranging from 1-novice to 9-expert. Secondary outcome measures of cognitive, emotional, social, physical, and independence scores, were rated on a scale from 1-5, with 5 being the highest.ResultsThe median number of sessions per participant was 4 (range 2-65 sessions) and median participation duration was 2 years (range 2-10 years). A Wilcoxon-rank sum test demonstrated an improvement in final skill level compared to baseline (p < 0.0001), with an average increase of 1.2 skill levels per participant and an average increase of 0.48 skill levels per year of involvement. There were also improvements from initial session to final session in all secondary outcomes: social (p = 0.002), emotional (p = 0.018), physical (p < 0.0001), and independence (p < 0.0001) scores.ConclusionOverall, there were improvements in all measured domains. This uses objective and functional measures to validate ongoing engagement with this adaptive skiing program at the athlete, volunteer, and organizational levels.

PurposeRocking in a rocking chair may facilitate trunk muscle activation in children with spinal cord injury (SCI). To assess this, children with SCI and typically developing (TD) children were evaluated for increases in trunk muscle activation, muscle activation patterns, and correlation of trunk muscle activation with trunk control during rocking.MethodsEleven children with SCI and 10 TD children aged 1-12 years rocked while surface electromyography activity in arm, leg, and trunk muscles was captured. Mean muscle activity during rocking and at baseline were compared for each muscle. Temporal activation patterns of SCI and TD groups were compared using cluster analysis. Correlation of trunk control and trunk muscle activation was assessed.ResultsSignificantly higher muscle activity was found during rocking versus quiet sitting for each muscle (p < 0.05). Cluster analysis of temporal muscle activation patterns revealed two disparate SCI groups; one SCI group's muscle activation timing was similar to the TD group. Correlation analysis indicated greater trunk muscle activation in lower trunk muscles for participants with better trunk control.ConclusionRocking activates the neuromuscular system and is feasible for children with trunk impairment due to SCI, suggesting its potential as a home-based activity for extending practice beyond the clinic.