Journal of Pediatric Rehabilitation Medicine - Volume 2, issue 1
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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: Survival into adulthood for individuals with spina bifida has significantly improved over the last 40 years. Health services research suggests the majority of patients with spina bifida are now over 18 years old. Adults with spina bifida have ongoing increased medical needs compared to the general population, including spina bifida-specific care, age-related secondary disabilities, and general adult medical needs. Unlike pediatric-aged patients, adults may not have access to multi-disciplinary spina bifida clinics and must…often coordinate their own care with adult providers less familiar with spina bifida and the associated monitoring and treatment issues. This article will provide an overview of the medical issues of adults with spina bifida, highlighting areas that are different than pediatric care.
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Abstract: Objective: Spinal Cord Injury (SCI) in the pediatric population is an uncommon but potentially devastating entity that may be unfamiliar to many practitioners. Because its treatment requires a long-term, well-planned, integrated approach, understanding the natural history, treatment, and common comorbidities of pediatric SCI is crucial for all physicians caring for these children. We present a review of the current literature on this topic to discuss the current standard of medical and rehabilitation care of pediatric…SCI patients. Data Sources: Studies for this review article were obtained by a thorough PubMed search, including but not limited to the terms "spinal cord injury," "SCI," "spinal rehabilitation," and "pediatric spinal injury." Frequently referenced articles of particular prominence in the field were also reviewed. Study Selection: Studies were included primarily to illustrate specific clinical situations in this overview article. Data Extraction: Studies were reviewed by the authors (JG and HK) and clinically important details were incorporated into the review. Data Synthesis: Not applicable. Conclusions: Pediatric SCI, while relatively uncommon, is a life-changing event for affected children and their families, physically, medically, and economically. Providing multidisciplinary care, as well as early and extensive rehabilitation, translates into superior outcomes. However, more research remains necessary to identify tactics for better community integration and increased educational, financial, and social success.
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Abstract: Myelomeningocele is associated with other neurological abnormalities, including hydrocephalus, Chiari II malformations, syringomyelia, and secondary tethered cord syndrome. Tethered cord syndrome occurs because of abnormal attachment of the spinal cord to the caudal dural sac, causing cord ischemia. Occasionally, symptoms of progressive neurological deterioration may occur and can significantly affect the long-term outcome of these patients. Proper management of patients with myelomeningocele requires long-term follow-up and evaluation of signs of neurological deterioration…that suggest secondary tethered cord syndrome. Treatment of these patients may target symptoms, such as urological intervention for bladder dysfunction, or it may target the tethered cord itself. Recently, many studies have shown that tethered cord release can significantly improve symptoms in these patients.
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Abstract: The purpose of this article is to provide an overview of skin issues in children with spina bifida. Included in the discussion below is a review of the etiology of pressure ulcers and the updated 2007 pressure ulcer definition and pressure ulcer staging system as defined by the National Pressure Ulcer Advisory Panel (NPUAP). Pediatric risk factors for skin breakdown are presented including risk factors unique to children with spina bifida. Pediatric pressure ulcer risk assessment…scales are described. The 5 Million Lives Kids' Campaign which has a focus on preventing hospital-acquired pressure ulcers in children is also reviewed along with evidence based prevention strategies. The key to preventing skin breakdown and pressure ulcers in children with spina bifida is early identification of the child's individual risk factors so that a prevention protocol can be implemented in all settings: hospital, home and the community. Options for wound management, dressing selection and pain management are included.
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Abstract: Myelodysplasia is a complex patient problem that continues to present challenges for multidisciplinary care teams. The spectrum of bladder and bowel dysfunction created by this neurologic lesion is broad and requires long-term surveillance of these organ systems. This review outlines the diagnosis and management of urologic issues of the spina bifida patient throughout infancy, childhood and adolescence. Specifically, examining different approaches to care of these patients (proactive vs reactive), quality of life…issues and medical and surgical management options and decision-making at each phase of life.
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Abstract: Myelodysplasia is a congenital neural tube defect commonly affecting bladder and bowel function. Management of fecal incontinence is paramount to achieve patient independence and self-confidence. When conservative measures fail alternative invasive methods can be successfully applied. The Malone antegrade continence enema (MACE) was introduced in the late 1980's to treat spina bifida patients with fecal incontinence refractory to conservative management. Since its introduction, multiple successful variations have been described and its role…has expanded. Indeed, the MACE has revolutionized the care of myelodysplastic patients, their bowel function, and ultimately their self image.
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Abstract: Cerebral palsy is attributed to non-progressive disturbances in the developing fetal or infant brain. The APOE ε4 allele has been associated with poor outcome after brain injury in adults but may be protective among very young children. We conducted this study to explore the hypothesis that the APOE ε4 is associated with lowered severity of cerebral palsy. 158 individuals with CP and their parents were genotyped for APOE. Mean age was 9.1 years; 54% were males.…61% were preterm at birth; 34% less than 30 weeks gestation. 30% of the CP subjects had at least one ε4 allele. There was a trend towards significance for subjects with at least one ε4 allele assigned to the low severity group (p = 0.11). The greater number of ε4 alleles, the more likely an individual was in the low severity CP group (p = 0.12). Individuals with brain injury in the perinatal period were almost 5 times more likely to be in the low severity group (p < 0.01). Family analysis via the TDT supported a protective effect of APOE ε4. Further study is needed to confirm that, in contrast to adults, the APOE ε4 allele appears to confer protection and/or facilitate recovery after brain injury in the fetus or newborn, particularly when that injury occurs around term.
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Abstract: This article describes the development and efficacy of the Intensive Motor Skills Program conducted at Primary Children's Medical Center. The program was designed for children with cerebral palsy who have undergone a medical procedure and were determined to need a "jumpstart" to gain functional skills. Data was collected from parent interviews that determine desired outcomes during the two-week program. Parent ratings of performance and satisfaction were then analyzed to determine parents' perceptions of the…program. Information was also collected and analyzed from therapists' short-term objectives and parent satisfaction surveys. The results indicated that parents perceived positive changes in their children's performance on goals addressed during the program. Positive changes in parents' satisfaction with how their child performed on the defined goals were also noted. Therapists documented that children in the program required decreasing levels of assistance on short-term objectives as the program progressed.
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