Journal of Pediatric Rehabilitation Medicine - Volume Pre-press, issue Pre-press
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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: This case report details the complex case of an adolescent patient with chondroblastic osteosarcoma in the setting of Li-Fraumeni syndrome, leading to hemipelvectomy and post-operative complications. International Classification of Functioning principles were used as a roadmap for optimization of functional restoration and transition of care coordination.
Keywords: Li-Fraumeni syndrome (LFS), ICF principles, rehabilitation, case report, amputation
Abstract: PURPOSE: Acute flaccid myelitis (AFM), an uncommon but serious neurologic condition, primarily affects children, and can progress quickly to paralysis and respiratory failure. Data on long-term outcomes of patients with AFM are limited. This study reports on functional status through 12 months for AFM patients who became ill in 2018 in the United States. METHODS: Health departments collected information on outcomes at 6 and 12 months after onset of AFM using a standardized form that asked patients or their parents/guardians about functional status. Analyses were restricted to confirmed cases. RESULTS: Of the 238 confirmed AFM cases…reported to CDC in 2018, 90 (38%) had assessments at 6 months, 82 (34%) at 12 months, and 49 (21%) at both 6 and 12 months. Among the 49 patients with data at both time points, the proportion of patients reporting significant or severe impairment at 6 months ranged from 2% to 59% depending on the outcome. Although proportions decreased by 12 months and ranged from 2% to 51%, most patients had some impairment at 12 months. No deaths were reported. CONCLUSION: Six- and 12-month outcomes in patients with onset of AFM in 2018 span a wide range of functionality, particularly of upper and lower extremities. Importantly, improvement appears to occur over time in some patients.
Abstract: PURPOSE: This study aimed to identify factors, including degree of disability, that contribute to the caregiver burden of raising children with cerebral palsy in Sri Lanka. METHODS: Participants were caregivers of children with cerebral palsy attending the pediatric neurology clinic of the only tertiary care center in southern Sri Lanka. The locally validated Caregiver Difficulties Scale (CDS) was administered, and demographic information was obtained in a structured interview. Disability data was accessed through the medical record. RESULTS: Of 163 caregivers who participated in this study, 133 (81.2%) demonstrated a moderate to high level of burden, and…91 (55.8%) were at high risk for psychological burden. In the bivariate analysis, caregiver burden significantly correlated with degree of physical disability based on the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS), the presence of medical co-morbidities, and having two or more children. However, only the GMFCS level and number of children remained significant predictors of caregiver burden after controlling for confounding effects. CONCLUSION: Raising a child with cerebral palsy in Sri Lanka is likely to cause caregiver burden, particularly if they have a high level of disability or one or more siblings. Monitoring caregiver burden as part of routine cerebral palsy management is important, which allows targeting psychosocial support to families most in need.
Keywords: Caregiver burden, cerebral palsy, level of disability, GMFCS, MACS
Abstract: As with the wide range in spina bifida (SB) incidence rates across nations, there is also wide variance in topics encountered by clinicians today. Both the wide variance in SB incidence rates and the wide diversity of topics to be addressed provide the backdrop for any dialogue among professionals serving this population. On the international stage, the World Congress on Spina Bifida Research and Care has been the only conference dedicated solely to research, practical challenges, and real-life solutions for those living with SB, their families, and caregivers. As a conference with a clear sense of the growing global village,…the 2023 congress showcased innovative research from junior to preeminent investigators. Topical areas included urology, neurosurgery, global health, prenatal surgery, and transition to adult care amid others. Ultimately, through the dissemination of a compendium of conference abstracts, we hope that professionals will be aided and inspired to continue to improve the education, advocacy, and care among the many communities of individuals affected by SB globally.
Keywords: Myelomeningocele, interdisciplinary collaboration, global health, quantitative and qualitative research, multidisciplinary approach