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This systematic review aims to investigate the relationship between muscle mass and specific health outcomes in pediatric populations with neuromuscular disorders. A search was performed for any relevant studies published in English from 1996 to 2023 in five databases. To be included in this analysis, articles must have had participants with an average age ≤21, focus on children with neuromuscular disabilities, and primarily examine relationships between muscle mass and any functional or health outcomes measure. Studies including typically developing children were used to contrast and enhance findings. Thirty-two studies were included, with 10,129 unique individuals represented: seventeen studies focused on healthy/typically developing children; seven on children with cerebral palsy; three on children with Duchenne muscular dystrophy; two on children with sarcopenia; and one study each on children with osteoporosis, congenital muscular dystrophy, and other various neurologic disorders. Thirteen studies assessed functional outcomes, ten assessed bone outcomes, and nine assessed other cardiovascular/metabolic outcomes. All of the included studies demonstrated relationships between muscle mass and respective outcomes in varying measures. The results of this review demonstrate that there is a consistently recognized relationship between muscle mass and important health outcomes in children, supporting clinically targeting muscle mass as a means to optimize desired outcomes.
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CONTEXT: Spinal cord injury (SCI) presents significant challenges due to its debilitating nature and potential complications. While few medications have shown efficacy in improving neurological recovery, 4-Aminopyridine (4-AP), a voltage-gated potassium channel blocker, has been used clinically off-label to improve neurologic function in adults with spinal cord-related paralysis. However, evidence regarding its safety and effectiveness in the pediatric population remains scarce, as it is approved for use in older patients. FINDINGS: This manuscript reports the case of a pediatric patient who sustained a traumatic cervical SCI. Initial neurological assessment indicated a C1 motor complete SCI. Surgical intervention for bullet removal and spinal fusion was carried out, followed by comprehensive inpatient rehabilitation. CONCLUSION/CLINICAL RELEVANCE: 4-AP was introduced three months post-injury and was well-tolerated without obvious adverse effects. Notably, he exhibited neurological and functional improvement after four months of 4-AP use, though his improvement followed the expected trajectory of recovery. To date, this case represents the first case of 4-AP administration in a pediatric SCI patient, and therefore these findings contribute valuable clinical insight. By documenting the clinical trajectory of this case, this manuscript suggests 4-AP may be safe for use in pediatric patients.
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BACKGROUND: Nerve transfer surgery is sometimes offered to patients with acute flaccid myelitis (AFM). The objectives of this study were to evaluate surgical efficacy, assess which clinical and neurophysiological data are valuable for preoperative planning, and report long-term outcomes. METHODS: This is a single-center, retrospective case series of patients with AFM who received nerve transfer surgery. All patients had preoperative electromyography and nerve conduction studies (EMG/NCS). Matched control muscles that did not receive nerve transfer surgery were defined in the same cohort. RESULTS: Ten patients meeting inclusion criteria received a total of 23 nerve transfers (19 upper extremity, four lower extremity). The mean age at symptom onset was 3.8 years, surgery was 0.5 to 1.25 years after diagnosis, and mean follow-up was 2.3 years (range 1.3 to 4.5 years). Among muscles with preoperative strength Medical Research Council (MRC) grade 0, muscles receiving nerve transfers performed significantly better than those that did not (MRC grade 2.17 ± 0.42 vs 0 ± 0, respectively, P = 0.0001). Preoperative EMG/NCS predicted worse outcomes in recipient muscles with more abundant acute denervation potentials (P = 0.0098). Donor nerves found to be partially denervated performed equally well as unaffected nerves. Limited data suggested functional improvement accompanying strength recovery. CONCLUSIONS: Nerve transfer surgery is an effective strategy to restore strength for patients with AFM with persistent, severe motor deficits. Postoperative outcomes in patients with complete paralysis are better than the natural history of disease. This study demonstrates the utility of preoperative clinical and electrophysiological data in guiding patient selection for nerve transfer surgery.
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Transferência de Nervo , Doenças Neuromusculares , Humanos , Lactente , Pré-Escolar , Estudos Retrospectivos , Prognóstico , Doenças Neuromusculares/cirurgiaRESUMO
STUDY DESIGN: Cross-sectional study. OBJECTIVES: Work-related disability is common in persons with spinal cord injury (SCI). The aims of this study are to examine the associations of employment with self-perceived health (SPH) and quality of life (QoL) across 22 countries and to explore the covariates around employment and SPH and QoL. SETTING: Community. METHODS: We analyzed 9494 community-dwelling persons with SCI aged 18-65. We performed an adjusted regression and path analysis. The independent variable was 'employment' and the dependent variables were two single items: QoL (very poor to very good) and SPH (excellent to poor). Covariates included the Gross Domestic Product (GDP), education, time since SCI, age, gender, years of employment after SCI, SCI level (paraplegia, tetraplegia), and completeness of SCI. RESULTS: Participants' mean age was 47, 74% were male, and 63% had paraplegia. We found an association between employment and QoL and SPH. While the magnitude of the effect of employment on QoL did not differ across GDP quartiles, its perceived effect on QoL was found to be significant in the highest GDP quartile. Employment was predictive of good SPH in two GDP quartiles (Q1 and Q4), but significant across all quartiles when predicting poor perceptions, with the magnitude of effect varying significantly. CONCLUSIONS: Employment is closely related to QoL and SPH depending on the GDP. We may positively influence the QoL and SPH in the SCI population to promote better employment outcomes by considering the infrastructure and economy.
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Qualidade de Vida , Traumatismos da Medula Espinal , Humanos , Masculino , Pessoa de Meia-Idade , Feminino , Estudos Transversais , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/complicações , Inquéritos e Questionários , Emprego , Paraplegia/complicaçõesRESUMO
Muscle loss is consistently associated with immobility and paralysis and triggers significant metabolic and functional changes. The negative effects of sarcopenia are amplified in children who are in the process of building their muscle mass as part of development. Because muscle mass loss is consistently associated with increased morbidity and mortality throughout life, optimizing the size and health of muscles following a neurologic injury is an objective target for therapeutic interventions. This review hypothesizes that muscle mass correlates with functional outcomes in children with paralysis related to spinal cord-related neurologic deficits. We propose that the measurement of muscle mass in this population can be used as an objective outcome for clinical long-term care. Finally, some practical clinical approaches to improving muscle mass are presented.
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OBJECTIVE: Provide proof-of-concept for development of a Pediatric Functional Status eScore (PFSeS). Demonstrate that expert clinicians rank billing codes as relevant to patient functional status and identify the domains that codes inform in a way that reliably matches analytical modeling. DESIGN: Retrospective chart review, modified Delphi, and nominal group techniques. SETTING: Large, urban, quaternary care children's hospital in the Midwestern United States. PARTICIPANTS: Data from 1955 unique patients and 2029 hospital admissions (2000-2020); 12 expert consultants representing the continuum of rehabilitation care reviewed 2893 codes (procedural, diagnostic, pharmaceutical, durable medical equipment). MAIN OUTCOME MEASURES: Consensus voting to determine whether codes were associated with functional status at discharge and, if so, what domains they informed (self-care, mobility, cognition/ communication). RESULTS: The top 250 and 500 codes identified by statistical modeling were mostly composed of codes selected by the consultant panel (78%-80% of the top 250 and 71%-78% of the top 500). The results provide evidence that clinical experts' selection of functionally meaningful codes corresponds with codes selected by statistical modeling as most strongly associated with WeeFIM domain scores. The top 5 codes most strongly related to functional independence ratings from a domain-specific assessment indicate clinically sensible relationships, further supporting the use of billing data in modeling to create a PFSeS. CONCLUSIONS: Development of a PFSeS that is predicated on billing data would improve researchers' ability to assess the functional status of children who receive inpatient rehabilitation care for a neurologic injury or illness. An expert clinician panel, representing the spectrum of medical and rehabilitative care, indicated that proposed statistical modeling identifies relevant codes mapped to 3 important domains: self-care, mobility, and cognition/communication.
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Estado Funcional , Pacientes Internados , Criança , Humanos , Estudos Retrospectivos , Atividades Cotidianas , AutocuidadoRESUMO
OBJECTIVES: To explore the challenges in diagnosing acute flaccid myelitis (AFM) and evaluate clinical features and treatment paradigms associated with under recognition. STUDY DESIGN: This was a retrospective multicenter study of pediatric patients (≤18 years) who were diagnosed with AFM from 2014 to 2018 using the Centers for Disease Control and Prevention's case definition. RESULTS: In 72% of the cases (126 of 175), AFM was not considered in the initial differential diagnosis (n = 108; 61.7%) and/or the patient was not referred for acute care (n = 90; 51.4%) at the initial clinical encounter, and this did not improve over time. Although many features of the presentation were similar in those initially diagnosed with AFM and those who were not; preceding illness, constipation, and reflexes differed significantly between the 2 groups. Patients with a non-AFM initial diagnosis more often required ventilatory support (26.2% vs 12.2%; OR, 0.4; 95% CI, 0.2-1.0; P = .05). These patients received immunomodulatory treatment later (3 days vs 2 days after neurologic symptom onset; 95% CI, -2 to 0; P = .05), particularly intravenous immunoglobulin (5 days vs 2 days; 95% CI, -4 to -2; P < .001). CONCLUSIONS: Delayed recognition of AFM is concerning because of the risk for respiratory decompensation and need for intensive care monitoring. A non-AFM initial diagnosis was associated with delayed treatment that could have a clinical impact, particularly as new treatment options emerge.
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Viroses do Sistema Nervoso Central , Infecções por Enterovirus , Mielite , Doenças Neuromusculares , Criança , Humanos , Mielite/diagnóstico , Mielite/terapia , Doenças Neuromusculares/diagnóstico , Doenças Neuromusculares/terapia , Viroses do Sistema Nervoso Central/diagnóstico , Viroses do Sistema Nervoso Central/terapia , Estudos Retrospectivos , Infecções por Enterovirus/diagnóstico , Infecções por Enterovirus/terapiaRESUMO
Objectives: To conduct a systematic review to examine the scientific literature for rehabilitation/habilitation among individuals with pediatric-onset spinal cord injury (SCI). Methods: A literature search of multiple databases (i.e., PubMed/MEDLINE, CINAHL, EMBASE, PsychINFO) was conducted and was filtered to include studies involving humans, published as full-length articles up to December 2020, and in English. Included studies met the following inclusion criteria: (1) ≥50% of the study sample had experienced a traumatic, acquired, nonprogressive spinal cord injury (SCI) or a nontraumatic, acquired, noncongenital SCI; (2) SCI onset occurred at ≤21 years of age; and (3) sample was assessed for a rehabilitation/habilitation-related topic. Studies were assigned a level of evidence using an adapted Sackett scale modified down to five levels. Data extracted from each study included author(s), year of publication, country of origin, study design, subject characteristics, rehabilitation/habilitation topic area, intervention (if applicable), and outcome measures. Results: One hundred seventy-six studies were included for review (1974-2020) with the majority originating from the United States (81.3%). Most studies were noninterventional observational studies (n = 100; 56.8%) or noninterventional case report studies (n = 5; 2.8%). Sample sizes ranged from 1 to 3172 with a median of 26 (interquartile range [IQR], 116.5). Rehabilitation/habilitation topics were categorized by the International Classification of Functioning, Disability and Health (ICF); most studies evaluated ICF Body Function. There were 69 unique clinical health outcome measures reported. Conclusion: The evidence for rehabilitation/habilitation of pediatric-onset SCI is extremely limited; nearly all studies (98%) are level 4-5 evidence. Future studies across several domains should be conducted with novel approaches to research design to alleviate issues related to sample sizes and heterogeneity.
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Traumatismos da Medula Espinal , Criança , Bases de Dados Factuais , Humanos , Avaliação de Resultados em Cuidados de Saúde , Estados UnidosRESUMO
OBJECTIVES: To establish the utility and feasibility of the International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 in pediatric SCI populations. METHODS: This was a noninterventional, repeated measure design conducted in Pennsylvania, Maryland, Illinois, Kentucky, and South Carolina. The International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 was administered repeatedly, twice at the point of care and once over the phone. Time to complete the data set was recorded. Inter- and intrarater reliability was examined by intraclass correlation coefficients (ICC) with 95% confidence intervals (CI), and agreement between the bowel function basic data set variables and medical records was calculated using percentages. Intrarater reliability involved the same person administering the data once at the point of care and once over the phone. RESULTS: Forty-one children/youth ages 1 to 20 years participated in this study. Average time to complete the data set was 5.17 minutes. Interrater reliability was good to excellent (ICC ≥ 0.75) for most variables. Five variables had moderate interrater reliability (ICC = 0.05-0.74) and three had poor interrater reliability (ICC < 0.05). With the exception of one variable that had poor intrarater reliability (constipating agent, ICC = 0.00) and one that approached moderate reliability (digital evacuation, ICC = 0.74), intrarater reliability was good to strong for every bowel variable (ICC = 0.88-1.00). Only 12 (32%) medical records had explicit documentation of one or more of the variables on the Basic Bowel Function Basic Data Set V2.0. CONCLUSION: The results support future research with a larger and more diverse sample of children with SCI to build upon the psychometric work described herein.
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Traumatismos da Medula Espinal , Adolescente , Adulto , Criança , Pré-Escolar , Humanos , Lactente , Psicometria , Reprodutibilidade dos Testes , South Carolina , Adulto JovemRESUMO
BACKGROUND: Acute flaccid myelitis (AFM) is an anterior horn disorder that manifests as rapid onset muscle weakness or paralysis. Development of scoliosis in pediatric AFM patients has been anecdotally reported, but associated risk factors or incidence have yet to be determined. METHODS: Pediatric AFM patients treated over a 10-year period at a tertiary care center were identified. Patients were considered to have scoliosis if there was radiographic evidence of coronal curvature ≥15 degrees. Number of limbs affected, independent ambulation and head control, ventilator requirement at initial admission, and long-term ventilatory support (≥1 year) were recorded. Muscle strength and functional status were assessed by manual muscle testing (MMT) and Physical Abilities and Mobility Scale (PAMS), respectively. Areas of spinal cord lesion on initial MRI were recorded. Bivariate analyses were performed, with alpha set to 0.05. RESULTS: Fifty-six AFM patients (27 scoliosis, 29 no scoliosis) were identified. Mean time from AFM presentation to scoliosis diagnosis was 0.93 years. Mean major Cobb angle at first radiograph was 31.7 ± 14.3 degrees. Lack of independent ambulation, ventilator dependence at time of admission or long term, number of limbs affected, and decreased MMT and PAMS scores were more common in patients who developed scoliosis (all, p < .05). Patients who developed scoliosis had more extensive thoracic spinal cord involvement on initial MRI (p = .03). CONCLUSION: AFM patients who develop scoliosis are more likely to be ventilator dependent, lack independent ambulation, and have more extensive thoracic SCI.
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Viroses do Sistema Nervoso Central , Mielite , Escoliose , Traumatismos da Medula Espinal , Criança , Humanos , Mielite/diagnóstico por imagem , Mielite/etiologia , Doenças Neuromusculares , Estudos Retrospectivos , Escoliose/diagnóstico por imagem , Escoliose/etiologiaRESUMO
OBJECTIVES: To qualitatively describe bone health changes in children with acute flaccid myelitis (AFM) and assess relationships with muscle mass and strength and functional performance. METHODS: Retrospective analysis of a cohort of 79 children with AFM seen consecutively in one specialized academic center between January 1, 2007, and December 31, 2019. RESULTS: Of the 79 participants who were aged 4 months to 21 years old, 41 (52%) had bone density measured by dual energy absorptiometry (DXA) and 32 of them (78%) were diagnosed with low bone mass (LBM). We recorded 25 fractures that occurred after onset of neurologic deficit in 14 of the children in the cohort (18%). Lean muscle mass correlated with bone mass and functional performance as assessed by Physical Abilities and Mobility Scale (PAMS) but not with muscle strength as assessed by manual muscle testing (MMT). Bone density in the lower limbs was associated with ambulatory status. CONCLUSION: Children with AFM have a high likelihood of muscle and bone loss and frequently sustain pathologic fractures. Bone health in children with AFM should be carefully monitored, and efforts should be made to preserve bone mass and maximize muscle mass.
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Viroses do Sistema Nervoso Central , Traumatismos da Medula Espinal , Densidade Óssea , Criança , Humanos , Mielite , Doenças Neuromusculares , Estudos RetrospectivosRESUMO
STUDY DESIGN: Clinical trial. OBJECTIVE: To demonstrate that a 12-week exoskeleton-based robotic gait training regimen can lead to a clinically meaningful improvement in independent gait speed, in community-dwelling participants with chronic incomplete spinal cord injury (iSCI). SETTING: Outpatient rehabilitation or research institute. METHODS: Multi-site (United States), randomized, controlled trial, comparing exoskeleton gait training (12 weeks, 36 sessions) with standard gait training or no gait training (2:2:1 randomization) in chronic iSCI (>1 year post injury, AIS-C, and D), with residual stepping ability. The primary outcome measure was change in robot-independent gait speed (10-meter walk test, 10MWT) post 12-week intervention. Secondary outcomes included: Timed-Up-and-Go (TUG), 6-min walk test (6MWT), Walking Index for Spinal Cord Injury (WISCI-II) (assistance and devices), and treating therapist NASA-Task Load Index. RESULTS: Twenty-five participants completed the assessments and training as assigned (9 Ekso, 10 Active Control, 6 Passive Control). Mean change in gait speed at the primary endpoint was not statistically significant. The proportion of participants with improvement in clinical ambulation category from home to community speed post-intervention was greatest in the Ekso group (>1/2 Ekso, 1/3 Active Control, 0 Passive Control, p < 0.05). Improvements in secondary outcome measures were not significant. CONCLUSIONS: Twelve weeks of exoskeleton robotic training in chronic SCI participants with independent stepping ability at baseline can improve clinical ambulatory status. Improvements in raw gait speed were not statistically significant at the group level, which may guide future trials for participant inclusion criteria. While generally safe and tolerable, larger gains in ambulation might be associated with higher risk for non-serious adverse events.
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Exoesqueleto Energizado , Procedimentos Cirúrgicos Robóticos , Robótica , Traumatismos da Medula Espinal , Terapia por Exercício , Marcha , Humanos , Traumatismos da Medula Espinal/complicações , CaminhadaRESUMO
Introduction: Acute flaccid myelitis (AFM) is a recently described diagnosis that primarily impacts the pediatric population. It is characterized by profound proximal muscle weakness with resultant orthopedic manifestations similar to well-known neuromuscular conditions. While the incidence of AFM has been rising, management outcomes are understudied. Here, we describe the first known case of hip reconstruction in AFM. Case Report: A 5-year-old female presented with painful bilateral hip subluxations 2 years after being diagnosed with AFM. Imaging confirmed substantial uncovering of the femoral heads, right greater than left, with reduction on abduction views. Given the extent of her hip pathology and symptoms, she underwent bilateral Dega and varus derotational osteotomies with adductor lengthening, achieving a 35° correction in femoral neck angle and 30° reduction in femoral anteversion bilaterally. At 2 years postoperatively, she was asymptomatic without recurrence of hip displacement. Conclusion: Reconstructive femoral osteotomies can be effective for achieving painless, reduced hips in patients with AFM. Thus, surgeons may reasonably extrapolate current concepts utilized for other low-tone neuromuscular conditions to inform approach to AFM.
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OBJECTIVES: To investigate the performance of the Physical Abilities and Mobility Scale (PAMS) in children receiving inpatient rehabilitation for paralysis related to spinal cord disease and injury (SCD/SCI). METHODS: Participants were 146 children with paralysis related to SCD/SCI, aged 2-21, admitted between January 2010 and 2017 for inpatient rehabilitation at a single free-standing academically affiliated pediatric rehabilitation hospital. Retrospective chart review was performed to obtain admission and discharge scores on the PAMS and the functional independence measure for children (WeeFIM®), collected as part of clinical care. Internal consistency was evaluated using Cronbach's alpha. Inter-rater reliability was evaluated through overall agreement, Pearson correlations, and intraclass correlations. Construct validity was examined through exploratory factor analysis. Criterion validity was explored through correlations of PAMS overall and item scores with WeeFIM® total and subscale scores. Sensitivity to change was tested using paired t-tests examining differences between admission and discharge scores for each item and for the total score on the PAMS. RESULTS: Internal consistency and inter-rater reliability were high (0.94 at admission and 0.95 at discharge). Total PAMS scores are highly correlated with total WeeFIM®, mobility, self-care, and cognitive subscores at admission and discharge. Correlations with the WeeFIM® ranged from low (cognitive) to strong (mobility). Total PAMS score and all individual items increased significantly between admission and discharge. CONCLUSIONS: The PAMS is a useful measure capturing incremental and granular functional motor skills changes occurring during inpatient rehabilitation for children with spinal cord-related paralysis.
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Pacientes Internados , Traumatismos da Medula Espinal , Adolescente , Adulto , Criança , Pré-Escolar , Humanos , Paralisia , Reprodutibilidade dos Testes , Estudos Retrospectivos , Medula Espinal , Traumatismos da Medula Espinal/reabilitação , Adulto JovemRESUMO
Acute flaccid myelitis (AFM) is a disabling, polio-like illness mainly affecting children. Outbreaks of AFM have occurred across multiple global regions since 2012, and the disease appears to be caused by non-polio enterovirus infection, posing a major public health challenge. The clinical presentation of flaccid and often profound muscle weakness (which can invoke respiratory failure and other critical complications) can mimic several other acute neurological illnesses. There is no single sensitive and specific test for AFM, and the diagnosis relies on identification of several important clinical, neuroimaging, and cerebrospinal fluid characteristics. Following the acute phase of AFM, patients typically have substantial residual disability and unique long-term rehabilitation needs. In this Review we describe the epidemiology, clinical features, course, and outcomes of AFM to help to guide diagnosis, management, and rehabilitation. Future research directions include further studies evaluating host and pathogen factors, including investigations into genetic, viral, and immunological features of affected patients, host-virus interactions, and investigations of targeted therapeutic approaches to improve the long-term outcomes in this population.
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Viroses do Sistema Nervoso Central/diagnóstico por imagem , Viroses do Sistema Nervoso Central/reabilitação , Infecções por Enterovirus/epidemiologia , Hipotonia Muscular , Debilidade Muscular , Mielite/diagnóstico por imagem , Mielite/reabilitação , Doenças Neuromusculares/diagnóstico por imagem , Doenças Neuromusculares/reabilitação , Viroses do Sistema Nervoso Central/líquido cefalorraquidiano , Viroses do Sistema Nervoso Central/virologia , Criança , Infecções por Enterovirus/líquido cefalorraquidiano , Infecções por Enterovirus/complicações , Saúde Global , Humanos , Imageamento por Ressonância Magnética , Hipotonia Muscular/etiologia , Debilidade Muscular/etiologia , Mielite/líquido cefalorraquidiano , Mielite/virologia , Doenças Neuromusculares/líquido cefalorraquidiano , Doenças Neuromusculares/virologia , Avaliação de Resultados da Assistência ao PacienteRESUMO
Individuals with spinal cord injury/disorder (SCI/D) are at high risk for developing secondary osteoporosis. Bone loss after neurologic injury is multifactorial and is dependent on the time from and extent of neurologic injury. Most bone loss occurs in the first year after complete motor paralysis, and fractures occur most commonly in the distal femur and proximal tibia (paraplegic fracture). The 2019 International Society for Clinical Densitometry Position Statement in SCI establishes that dual-energy X-ray absorptiometry (DXA) can be used to both diagnose osteoporosis and predict lower extremity fracture risk in individuals with SCI/D. Pharmacologic treatments used in primary osteoporosis have mixed results when used for SCI/D-related osteoporosis. Ambulation, standing, and electrical stimulation may be helpful at increasing bone mineral density (BMD) in individuals with SCI/D but do not necessarily correlate with fracture risk reduction. Clinicians caring for individuals with spinal cord-related paralysis must maintain a high index of suspicion for fragility fractures and consider referral for surgical evaluation and management.
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Fraturas Ósseas/etiologia , Fraturas Ósseas/terapia , Osteoporose/etiologia , Osteoporose/terapia , Atenção Primária à Saúde , Traumatismos da Medula Espinal/complicações , Absorciometria de Fóton , Densidade Óssea , HumanosRESUMO
BACKGROUND: Acute flaccid myelitis (AFM) is an illness defined by rapid onset of flaccid paralysis in one or more limbs or bulbar muscles, with MRI findings of predominantly spinal cord gray matter abnormalities spanning one or more spinal segments following a viral illness. Individuals with AFM may require rehabilitation to promote recovery. Activity-based restorative therapy (ABRT) has previously been shown to result in positive outcomes in children with neurologic deficits related to AFM. OBJECTIVES: This study examined functional changes in a group of children with AFM who participated in ABRT in an inpatient setting. METHODS: Retrospective chart review of children with AFM admitted to a single inpatient rehabilitation unit from 2014 to 2018. Children were assessed using the Functional Independence Measure for Children (WeeFIM), Manual Muscle Testing (MMT), Spinal Cord Independence Measure (SCIM), and the Physical Abilities and Mobility Scale (PAMS) as part of routine clinical care; the Modified Rankin Scale for Neurologic Disability was completed retrospectively. RESULTS: Children showed significant improvements across all outcome measures, with effect sizes ranging from moderate to large. Significant change was also seen across all muscle groups on MMT, with effect sizes ranging from small to large. Consistent with previous reports, children demonstrated better function in distal than proximal muscle groups at both admission and discharge. CONCLUSION: Children with AFM who participated in ABRT increased muscle strength and made functional gains across all outcome measures. These results support the utility of rehabilitation in the long-term care of children with AFM and residual neurologic deficit.
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Viroses do Sistema Nervoso Central/fisiopatologia , Viroses do Sistema Nervoso Central/reabilitação , Mielite/fisiopatologia , Mielite/reabilitação , Doenças Neuromusculares/fisiopatologia , Doenças Neuromusculares/reabilitação , Terapia Ocupacional , Desempenho Físico Funcional , Modalidades de Fisioterapia , Adolescente , Criança , Criança Hospitalizada , Pré-Escolar , Avaliação da Deficiência , Humanos , Lactente , Avaliação de Resultados em Cuidados de Saúde , Recuperação de Função Fisiológica , Estudos RetrospectivosRESUMO
Study design: Consensus among international experts. Objectives: The objective of this project was to develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set. Setting: International expert working group. Methods: The published guidelines for developing the International SCI Basic Data Sets were used to develop the International SCI/D Education Basic Data Set. Existing measures and literature on education and disability were reviewed to develop a preliminary draft of the basic education data set through iterative modifications via biweekly conference calls and email communication. The draft was disseminated to the larger International Workgroup for Development of Pediatric SCI/D Basic Data Sets and then to the members of the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups and interested individuals for comments. All feedback received was taken into consideration before the final data set was approved by ISCoS and ASIA. Results: The finalized version of the International SCI/D Education Basic Data Set Version 1.0 contains 16 items divided into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes. Most of the variables have been adapted from established measures. This data set is intended for children and youth up to and including high school, but not for emerging adults in higher education or postsecondary vocational training or trade schools. Conclusion: The International SCI/D Education Basic Data Set has been developed for collection of a minimal amount of highly relevant information on the education experience in children and youth with SCI/D. Further validation work is needed. Sponsorship: This project was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).