Journal of Pediatric Rehabilitation Medicine - Volume 1, issue 3
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Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach is an international journal designed to parallel the multi-disciplinary team approach of caring for a child with an acute or chronic disease. The issues will primarily be themed and broad in scope including, but not be limited to cerebral palsy, traumatic brain injury, spinal cord injury, spina-bifida, amputation, muscular dystrophies of all types, stroke, cancer, mental retardation, developmental delays, and others.
The aim is to include a wide range of experts who care for children with the above diagnosis. Authorship by two different disciplines is requested though not required to encourage an interdisciplinary and collaborative approach. The goal is for the reader to obtain not just the medical perspective, but also nursing, occupational, physical and speech therapy, psychology, home care, etc., in providing the most comprehensive care for children. Manuscripts will be blinded and peer reviewed with appropriate feedback. Statistical analysis will be reviewed by the biostatistician. Readers are encouraged to submit and or suggest case reviews, commentaries, editorials, original research, conference schedules, or reviews.
Abstract: Although neuromuscular diseases primarily affect an individual's physical functioning, the cognitive and psychosocial effects of these conditions can be quite significant. This paper provides an overview of a subset of neuromuscular diseases and their associated neurocognitive risks. It provides a heuristic for thinking about the associated neuropsychological differences in children and adolescents with neuromuscular disorder. Areas for further research are identified and practical guidelines for optimizing functioning within the school setting are…provided.
Abstract: The dystrophinopathies are a group of disorders that are characterized by absence or deficiency of functional dystrophin, a large cytoskeletal protein of striated muscle that is closely associated with transmembrane glycoprotein complexes. The most severe dystrophinopathy is Duchenne Muscular Dystrophy (DMD), a progressive disorder of all striated muscle that leads to death via cardiorespiratory failure in the second to third decades of life. Other dystrophinopathies include the similar but somewhat milder Becker…Muscular Dystrophy (BMD) and X-linked dilated cardiomyopathy (XLDCM) where the cardiac manifestations predominate. While this review will focus specifically on the cardiac aspects of the dystrophinopathies, the principal elements of screening and monitoring cardiac status are applicable to patients with a broad range of myopathies and muscular dystrophies.
Abstract: Duchenne Muscular Dystrophy (DMD) is an X-linked recessive disorder which features progressive muscle wasting and weakness. Despite advances in treatment, the weakness of DMD will eventually necessitate a wheelchair for almost all children. The goal of wheelchair use is to maximize function and mobility while minimizing discomfort and postural abnormalities. Because of the large variation of patient symptoms and functional deficits, no single wheelchair would adequately serve the needs of all children with DMD.…Unfortunately, little information to guide selection of equipment for children with DMD is available. This article discusses the decision-making processes regarding appropriate time to provide equipment, the evaluation of DMD clients, and reviews the numerous options in order to help prescribers, caregivers and clients design an appropriate wheelchair system.
Abstract: Background: Families of children with complex chronic medical illnesses (CCMI) benefit from coordinated, family-centered healthcare. Objective: Compare parental perceptions of inpatient family-centered care for children with CCMI in structured clinical programs (SCPs) with those who are not in SCPs. Design/Methods: Cross-sectional mail survey of parents of children with CCMIs using the 56-item Measure of Processes of Care (MPOC) to rate perceptions of family-centered healthcare. We compared responses of SCP to non-SCP children.…Results: 215 (36.6%) of 588 surveys were returned. Response rates were 40.0% for SCP and 33.8% for non-SCP children. The proportion of favorable (6--7) ratings was higher for the SCP group than for the non-SCP group (52.4% vs. 48.3%, p < 0.035). The proportion of unfavorable ratings was also different (5.4% vs. 12.3%, p = < 0.001). SCP families felt care was directed at the whole child and consistent. Non-SCP families reported more unmet needs and less recognition of their role. Conclusions: Parents of children with CCMI perceive inpatient care as more family-centered when provided in conjunction with a SCP. Children receiving non-SCP care may benefit from inclusion in SCPs dedicated to their needs. Further studies to determine the best way to provide this care are needed.
Keywords: Family-centered care, children with complex chronic medical illness, parents perceptions of care, MPOC
Abstract: The purposes of this paper are to: 1) present a conceptual framework that supports development of a computer adaptive test (CAT) outcome measure of physical functioning for children with cerebral palsy; 2) illustrate the development and refinement of an item bank for use in the CAT; and 3) describe the intended application of these newly developed items in a CAT platform. Improvement in physical functioning is one of the most important developmental and rehabilitative outcomes for…children with cerebral palsy (CP). Computer adaptive testing technology provides means to improve outcome measures. We adopted a conceptual framework appropriate to support a CAT of physical functioning consisting of 4 sub-domains: lower extremity skills, upper extremity skills, physical activity, and global physical health. Review of existing tests and measures of physical function, expert clinician review, and cognitive testing were used to identify, develop and refine sets of items (item banks) that reflect the breadth of each sub-domain. These item banks will be used to develop contemporary parent-report instruments by application of Item Response Theory (IRT) analyses, leading to a CAT outcome measure. Such CAT approaches can efficiently assess broad areas of physical functioning across a wide age-range and levels of severity of children with CP.
Abstract: The purpose of this study is to report the short-term outcome of intrathecal baclofen therapy on the function of individuals with diplegic cerebral palsy (CP) and the health-related quality of life (HRQL) of their caregivers. Eight pediatric patients with spastic diplegia were treated with ITB following failed oral spasticity management and were followed for a minimum of 2 years. Physical and functional outcomes were assessed using Ashworth Scores (AS), Physician Rating Scale (PRS), and a subset…of the Functional Independence Measure for children (WeeFIM). HRQL was assessed using SF-36, CES-D short form, Impact on Family Scale, Life Orientation Test, Rand Social Support Scale, and Social Desirability Scale. At final follow-up, AS was significantly reduced (all p ⩽ 0.03). The PRS scale showed statistically significant improvement in four out of six subscales: median gait pattern (p = 0.05), median hind foot strike (p = 0.03), median knee position (p = 0.03) and median hind foot gait (p = 0.05). The WeeFIM score improved significantly with a mean increase of 32% (p = 0.03). ITB therapy significantly reduced spasticity and improved the function of these eight children with diplegic CP. HRQL of the parents or the caregivers remained stable despite the surgical intervention and follow-up visits required for pump refills.
Keywords: Cerebral palsy, diplegia, intrathecal baclofen, health-related quality of life, function
Abstract: Spasticity, a common symptom accompanying cerebral palsy (CP), can severely affect patients' function and cause disability in childhood. Intrathecal baclofen (ITB) therapy is a widely used treatment to reduce spasticity in quadriparetic CP patients. Likewise, adults sustaining strokes and subsequent spastic hemiplegic have proven excellent candidates as well from ITB therapy. However, data on ITB treatment in pediatric patients with hemiplegic CP are lacking. This is the first report to present such a case. A…nine-year old girl with spastic hemiplegic CP failed chemical denervation and serial casting of lower extremity spasticity and an associated equinovarus contracture. An ITB bolus test revealed an improvement in her Ashworth score from a mean of 2.8 to 1.2 on the involved side, whereas the unaffected side stayed constant from a mean of 1.3 to 1.2. The patient was subsequently treated with continuous ITB with improvement of Ashworth scores from a mean of 2.8 at baseline to 1.1 at 17 months after implantation of the ITB pump. Subsequent surgery was performed to correct the residual ankle deformity resulting in improvements in passive range of motion, gait function and brace tolerance. Hemiplegic CP pediatric patients can be successfully treated with ITB to reduce spasticity, improve function, and retain postoperative surgical correction without affecting the normal side.