Journal of Pediatric Rehabilitation Medicine - Volume 4, 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: Objective: Many outcome measures assess function of children with cerebral palsy (CP), but establishing meaningful clinical change remains challenging. This study explored correlations between subjective status ratings in several functional domains, made by children, parents, and medical professionals. The ratings were compared with three outcome measures in preparation for longitudinal work to establish minimal clinically important change. Method: Children were assessed with the Gross Motor Function Measure (GMFM), Pediatric Evaluation…of Disability Inventory (PEDI), and Cerebral Palsy Quality of Life Questionnaire for Children (CP-QOL). Respondents provided Likert scale and Linear Analogue Scale ratings of gross motor function, self care, social function, quality of life, and overall function. Correlations were calculated for outcome measure scores and ratings. Results: 122 children with CP across all GMFCS and MACS levels, 79 male, aged 8.1 ± 2.9 years generated status ratings by 27 child reports, 122 parent reports, and 110 medical professional reports. Most ratings were moderately to highly correlated between parents and medical professionals. Outcome measure scores were frequently significantly correlated with pertinent ratings from medical professionals and parents but usually not with child ratings. Conclusions: Parents and medical professionals have similar perceptions of gross motor, self-care, quality of life, and overall status for children with CP and these perceptions correlate with standard outcome measures, but often do not agree with children's ratings. Longitudinal use of subjective status ratings from parents and professionals should contribute to establishing minimal clinically important differences for CP outcome measures.
Keywords: Cerebral palsy, parent, outcome measures, function
Abstract: The objective of this cross-sectional study was to compare the activities and participation in the domains of mobility, self-care, domestic life and social functioning in young adults according to osteogenesis imperfecta (OI) type. Fifty-four former OI patients were invited to participate and were sent a structured questionnaire. Twenty-four patients (mean age: 25.0 years, SD: 2.6 years) with OI types I (n=7), III (n=7), IV (n =8) and V (n=2) completed the questionnaire. Participants with OI type…I reported full independence, and only few respondents with OI types IV and V reported some limitations in mobility and domestic life activities. Young adults with OI type III had significantly lower activity scores in aspects of mobility and domestic life and lower levels of participation in employment, sporting activities and transportation. Participation in leisure and social interactions were not different across OI types. Young adults with more severe types of osteogenesis imperfecta have greater activity limitations and participation restrictions. Our findings indicate the importance of promoting and facilitating involvement in meaningful activities and roles in young adults with moderate to severe forms of OI.
Keywords: Osteogenesis Imperfecta, activities and participation, outcomes
Abstract: We have described four typical clinical scenarios involving management of children and young people presenting with central nervous system (CNS) tumors. We identify the biological stages of brain development and describe the tumor-related and treatment-related late consequences faced by those travelling along the rehabilitation pathway. The long term clinical challenges for these young people extend from monitoring for tumor recurrence, second tumor development, endocrine deficits and the need for a co-ordinated approach…to rehabilitation during their transition from pediatric to adult services. This is the main focus for this series, the conversion of a 'cancer cure' to a 'true cure'.
Keywords: Brain tumor, clinical scenarios, brain development, cancer late effects, rehabilitation
Abstract: Brain tumors and their treatments in children result in a range of neurological complications that can affect daily function and rehabilitation potential, including neurocognitive sequelae, ototoxicity, seizure disorders, stroke, and peripheral neuropathy. Deficits in cognitive function, particularly learning and memory, attention and speed of information processing, can be debilitating. With new insights to the cellular and molecular etiology of these deficits, new therapies for cognitive decline after therapy are emerging. Management strategies…for other neurological complications are also emerging.
Keywords: Brain tumors, late effects, cognition, stroke, neuropathy, seizure
Abstract: The neuropsychological sequelae associated with the diagnosis and treatment of a brain tumor in childhood or adolescence are well described. Providers in the oncology field have become more aware of these problems in recent years, and some treatment regimens are now aimed at limiting neurocognitive toxicity. Nevertheless, the likelihood of cure for many brain tumors is still relatively low and aggressive treatment courses often cannot be avoided. The neuropsychological side effects of surgery, radiation,…chemotherapy, and even the tumor itself will remain difficult to avoid until tumor-directed therapy is improved in dramatic ways. After three decades of research and a multitude of published studies, the nature of these neurocognitive deficits and the associated risk factors are well-understood, but there is a paucity of research aimed at therapeutic interventions. This is the essential step that must be taken to translate our current understanding into improved quality of life for children who survive the underlying disease. Unfortunately, the current standard of care for treatment of these complex neurobehavioral deficits relies on a strained public school system. Recent advances and current approaches in treatment interventions for neuropsychological sequelae are reviewed in this article, including pharmacologic treatments, cognitive remediation derived from traumatic brain injury rehabilitation, and comprehensive school re-integration efforts. There is an acute need for further advances in this field, and a bright future of individualized school re-integration is within reach.
Keywords: Brain tumor, child, adolescent, late effects, neuropsychologic sequelae, neurocognitive dysfunction, radiation therapy, chemotherapy, cognitive remediation, school re-integration
Abstract: The modern era of research into the neurobehavioral late effects of pediatric brain tumor has been one of refinement in outcome measurement and advances in identification of risk factors for neurobehavioral impairment. There is no neuropsychological phenotype that encompasses all tumor types, treatments, and risk factors, though attention, working memory, processing speed, new learning, visuospatial and visuomotor functioning, executive functioning, and areas of academic achievement have been found to be at particular…risk. Additional socioemotional and broader quality of life problems have been found in both survivors and their families. Past research has identified neuropsychological risk factors that include tumor location, radiation therapy and dose, certain chemotherapy agents, neurological complications, and demographic factors such as young age and female gender. Recent refinement in measurement of risk is improving our prediction of neurobehavioral outcomes. Neuropsychological and psychosocial interventions are now being developed, and the evidence base supporting these interventions is growing. Simultaneous advances in each of these areas will facilitate translation of research into risk-adapted rehabilitative care such that resources can be most effectively re-allocated and the best possible outcomes achieved.
Keywords: Neuropsychology, pediatric brain tumor, rehabilitation, cognitive late effects
Abstract: Children with brain tumors experience significant functional deficits related to the primary disease process and also as a consequence of its treatment. As in adults, childhood brain tumors represent a heterogeneous group of tumors, which vary in pathologic characteristics, tumor biology, response to therapy, anatomic location, and age at diagnosis. With the advances in diagnostic strategies, neurosurgical techniques and therapeutic trials over the last 30 years, a greater proportion of these children are surviving into…adulthood. Accompanying this survival, knowledge and intervention regarding long-term effects and the consequences of functional deficits on independent living is necessary. Involvement of a pediatric physiatrist throughout the course of disease, from diagnosis through survivorship, assists in optimizing functional independence and quality of life for children with brain tumors.
Abstract: Musculoskeletal deficits remain significant impediments to the function and independence of children and adolescents following successful treatment of Central Nervous System Tumors (CNS)tumors. The sequelae often impair the function of the upper and lower extremities and manifest themselves as difficulties in gross and fine motor skills, which encompasses self care and walking. Overall, the five-year survival rate for children younger than 15 years with brain tumors is between 60 to 90 percent [1,5,9,13]. Approximately…two-thirds of survivors have long term neurological deficits . These neurologic deficits often manifest themselves as musculoskeletal abnormalities. It is essential to recognize the potential consequences of a CNS tumor and its associated treatments in an effort to prevent disability. Following the initial neurosurgical and oncologic treatment, the acute and chronic stages of the orthopaedic care for these patients differ significantly. Many of the rehabilitation and treatment principles for brain tumor patients have evolved from the principles used in stroke and traumatic brain injury. Orthopaedic treatment specifically includes preventing, identifying, and treating spasticity, contractures, bony and spinal deformities, and gait abnormalities.