Journal of Pediatric Rehabilitation Medicine - Volume 6, issue 4
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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: PURPOSE: To evaluate the safety and feasibility of virtual reality (VR) exercise as a novel acute rehabilitation intervention in a Pediatric Critical Care Unit (PCCU) setting. METHODS: Children aged 3–18 years with an anticipated PCCU stay > 48 hours, and baseline normal to moderate cognitive and functional disability were eligible. Exclusion criteria included: anticipated death, physical inability, or a contraindication to mobilization. Nintendo Wii™ Boxing was prescribed for a minimum of 10…minutes twice a day for 2 days. Primary outcomes were feasibility and safety. RESULTS: Of 21 eligible patients, 12 (57.1%) were enrolled and 8 completed the study. 41.7% (5/12) were males, and the median age was 11 (3,16) years. Four of the 8 participants who received the intervention were mechanically ventilated during Wii™ play. Participants used the Wii™ a median of 2 times (1,5) over the 2-day intervention period, for a median total duration of 54.5 (15, 224) minutes. There were no adverse events attributable to the intervention. Upper limb activity during Wii™ was significantly greater than the average daily activity (p=0.049). Grip strength did not change significantly from baseline (p=0.20). CONCLUSION: While the results of this pilot trial suggest that VR exercise may be safely applied in a subset of critically ill children, we observed several threats to its feasibility in this population.
Keywords: Pediatrics, critical care, acute rehabilitation, virtual reality gaming
Abstract: PURPOSE: Spina bifida is a common cause of pediatric disability and more prevalent in the Hispanic population. Significant health disparities exist in minority populations. Culturally adapted health interventions have been attempted in conditions such as pediatric asthma with improvement. This study aims to explore the influence of ethnicity and culture with regards to functional status and care satisfaction. METHODS: Study participants were recruited from the Children's Hospital Colorado Spinal Defects Clinic. Demographics and past…medical and surgical history were obtained via chart review. A questionnaire assessed ethnicity, acculturation, self-care, mobility, bowel and bladder function, and care satisfaction. RESULTS: A total of 70 subjects with spina bifida were included in the statistical analysis. There was no difference in PEDI self-care and mobility scores between ethnicities. The Hispanic group had higher urinary incontinence rates, higher percentage with bladder accidents, and lower satisfaction with bladder management. Regarding bowel function, the Hispanic group had lower satisfaction rates and a trend towards lower bowel continence. CONCLUSIONS: Further work is needed to understand the social and cultural differences between Hispanic and Non-Hispanic children and their families that impact bowel and bladder continence and care satisfaction. Once identified, culturally sensitive interventions may be implemented that can alleviate these apparent health disparities.
Keywords: Spina bifida, myelomeningocele, bowel, bladder function, incontinence, acculturation, ethnicity, Hispanic, Non-Hispanic, satisfaction with care
Abstract: PURPOSE: To evaluate the relationship between child- and parent-reported quality of life (QOL) and bowel and bladder continence among young children with spina bifida (SB). METHODS: 104 children ages 5–12 years and one of their parents/guardians completed the Pediatric Quality of Life Inventory – Generic Form (PedsQL; parent and child) and the Quality of Life in Spina Bifida Questionnaire (QOLSBQ, parent only). Data on continence, child age, and condition-specific variables were obtained…by chart review. RESULTS: Parent and child QOL scores (on all measures of QOL) were positively correlated; parents rated child QOL lower than children's self report. QOL scores did not differ based on continence status. Total PedsQL scores were associated with age and mobility based on child report and with mobility based on parent report. CONCLUSIONS: QOL may not be affected by continence status among young children with SB, though demographic (i.e., age) and condition-specific (i.e., functional mobility status) variables appear relevant. Additional research is needed to further evaluate condition-specific variables, other protective variables, and possible measurement issues that influence QOL in young children with SB.
Keywords: Spina bifida, continence, quality of life, children
Abstract: OBJECTIVES: It is not uncommon for children with cerebral palsy (CP) to be discovered dead during sleep (DDDS); however, the factors associated with this pattern of mortality remain unknown. The current study aims to describe the mortality associated with children with CP from a single, tertiary care center who were DDDS. METHODS: A retrospective (case-only) design to examine proportionate mortality and patient characteristics and co-morbidities that may be related to children DDDS between 1993…and 2011. RESULTS: There were 177 patients with CP whose deaths were reported to our institution during the study period, of which 19 were DDDS at home. The period proportionate mortality (PPM) was 114.5 per 1000. The average age at time of death was 17 years and 6 months (minimum, 6 years; maximum, 25 years). All but one of the DDDS patients had gastrointestinal feeding tubes, seizure disorders, respiratory disorders, and were non-ambulatory. Very importantly, our DDDS patients manifested clusters of respiratory disorders, namely recurrent aspiration pneumonia (10/19), asthma pneumonitis (4/19), food/vomitius inhalation (6/19), reactive airway disease (16/19), respiratory failure (14/19), chronic bronchitis (7/19), chronic obstructive lung disease (9/19), and nocturnal respiratory insufficiency (16/19). CONCLUSIONS: Respiratory disorders, severe motor disability, seizures, and intellectual status are possible co-morbidities that may be associated with DDDS. There is a need for further study in order to understand what type of monitoring and care (if any) may help prevent DDDS related to these co-morbidities and sleep disorders/abnormalities.
Abstract: AIMS: Children with cerebral palsy often have severe spasticity leading to deformity that requires multiple orthopedic surgeries. Intrathecal baclofen pump implantation effectively decreases severe spasticity. The objective of this study was to determine whether children who have a baclofen pump implanted at a young age have fewer orthopedic surgeries than those who have a baclofen pump implanted at later ages. METHODS: In this retrospective study of 310 children, we compared occurrence of surgery in…relation to having or not having the baclofen pump, by using survival analysis with surgery as the outcome, presence of baclofen pump as the exposure of interest, modeled as a time-dependent variable, and age as the time scale. RESULTS: There was no significant effect of pump placement on overall surgery frequency. Analyses by type of surgery showed that those without a pump in place had a 64% lower hazard of scoliosis surgery. CONCLUSIONS: No evidence was found to indicate that children who have a baclofen pump implanted at a young age have fewer orthopedic surgeries than those who have a baclofen pump implanted at later ages.
Keywords: Intrathecal baclofen, spasticity, cerebral palsy, orthopedic surgery
Abstract: PURPOSE: Cytomegalovirus (CMV) is a leading cause of congenital encephalopathy and cerebral palsy (CP). In this study we report the severity of disability in individuals who developed CP secondary to symptomatic congenital CMV encephalopathy. METHODS: The medical records of patients with CP secondary to symptomatic congenital CMV encephalopathy diagnosed from 1995 to 2011 were retrospectively reviewed. Gross Motor Functional Classification Scale (GMFCS) level, language function, and swallowing function were collected. RESULTS: Twenty-three patients…were found. Of those 23 patients, 83% (19/23) were at a GMFCS level IV or V, 9% (2/23) each GMFCS level II or III and none (0%) at GMFCS I. Eighteen patients were non-verbal, 3 had minimal to moderate verbal skills and 2 had no verbal impairment. Eighteen patients also had severe dysphagia requiring gastrostomy tube (GT) feedings, and 5 ate orally. There was a strong correlation between the severity of GMFCS and having a gastrostomy tube (p< 0.0006) and GMFCS and verbal skills (p< 0.0023). CONCLUSION: This study shows that patients with CP secondary to symptomatic congenital cytomegalovirus encephalopathy have a very high risk of having severe physical and cognitive disabilities. This information can help healthcare providers and caregivers plan for the potential long-term medical, rehabilitation, and financial needs of this group of patients.
Keywords: Cerebral palsy, cytomegalovirus, encephalopathy, gross motor function classification system
Abstract: Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by epilepsy, secondary musculoskeletal problems, and disturbances of sensation, perception, cognition, communication, and behavior. Spastic quadriparesis is the most severe form of spastic cerebral palsy. The present report describes the…management of a 5-year-old patient with early childhood caries and spastic quadriparesis. The oral manifestations and clinical guidelines are discussed considering the special health care needs in these patients so as to provide comprehensive dental care.
Keywords: Early childhood caries, spastic quadriparesis, dental management