Journal of Pediatric Rehabilitation Medicine - Volume 16, issue 2
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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: Data continue to accumulate indicating that many systematic reviews are methodologically flawed, biased, redundant, or uninformative. Some improvements have occurred in recent years based on empirical methods research and standardization of appraisal tools; however, many authors do not routinely or consistently apply these updated methods. In addition, guideline developers, peer reviewers, and journal editors often disregard current methodological standards. Although extensively acknowledged and explored in the methodological literature, most clinicians seem unaware of these issues and may automatically accept evidence syntheses (and clinical practice guidelines based on their conclusions) as trustworthy. A plethora of methods and tools are recommended…for the development and evaluation of evidence syntheses. It is important to understand what these are intended to do (and cannot do) and how they can be utilized. Our objective is to distill this sprawling information into a format that is understandable and readily accessible to authors, peer reviewers, and editors. In doing so, we aim to promote appreciation and understanding of the demanding science of evidence synthesis among stakeholders. We focus on well-documented deficiencies in key components of evidence syntheses to elucidate the rationale for current standards. The constructs underlying the tools developed to assess reporting, risk of bias, and methodological quality of evidence syntheses are distinguished from those involved in determining overall certainty of a body of evidence. Another important distinction is made between those tools used by authors to develop their syntheses as opposed to those used to ultimately judge their work. Exemplar methods and research practices are described, complemented by novel pragmatic strategies to improve evidence syntheses. The latter include preferred terminology and a scheme to characterize types of research evidence. We organize best practice resources in a Concise Guide that can be widely adopted and adapted for routine implementation by authors and journals. Appropriate, informed use of these is encouraged, but we caution against their superficial application and emphasize their endorsement does not substitute for in-depth methodological training. By highlighting best practices with their rationale, we hope this guidance will inspire further evolution of methods and tools that can advance the field.
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Abstract: PURPOSE: The International Alliance of Academies of Childhood Disability created a COVID-19 Task Force with the goal of understanding the global impact of COVID-19 on children with disabilities and their families. The aim of this paper is to synthesize existing evidence describing the impact of COVID-19 on people with disabilities, derived from surveys conducted across the globe. METHODS: A descriptive environmental scan of surveys was conducted. From June to November 2020, a global call for surveys addressing the impact of COVID-19 on disability was launched. To identify gaps and overlaps, the content of the surveys was compared to…the Convention on the Rights of the Child and the International Classification of Functioning, Disability and Health. RESULTS: Forty-nine surveys, involving information from more than 17,230 participants around the world were collected. Overall, surveys identified that COVID-19 has negatively impacted several areas of functioning - including mental health, and human rights of people with disabilities and their families worldwide. CONCLUSION: Globally, the surveys highlight that impact of COVID-19 on mental health of people with disabilities, caregivers, and professionals continues to be a major issue. Rapid dissemination of collected information is essential for ameliorating the impact of COVID-19 across the globe.
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Keywords: COVID-19, disability, ICF, survey, human rights
Abstract: PURPOSE: Numerous studies have reported electrophysiological differences between concussed and non-concussed groups, but few studies have systematically explored recovery trajectories from acute concussion to symptom recovery and the transition from acute concussion to prolonged phases. Questions remain about recovery prognosis and the extent to which symptom resolution coincides with injury resolution. This study therefore investigated the electrophysiological differences in recoveries between simple and complex concussion. METHODS: Student athletes with acute concussion from a previous study (19(2) years old) were tracked from pre-injury baseline, 24–48 hours after concussion, and through in-season recovery. The electroencephalography (EEG) with P300 evoked response…trajectories from this acute study were compared to an age-matched population of 71 patients (18(2) years old) with prolonged post-concussive symptoms (PPCS), 61 (SD 31) days after concussion. RESULTS: Acute, return-to-play, and PPCS groups all experienced a significant deficit in P300 amplitude compared to the pre-injury baseline group. The PPCS group, however, had significantly different EEG spectral and coherence patterns from every other group. CONCLUSION: These data suggest that while the evoked response potentials deficits of simple concussion may persist in more prolonged stages, there are certain EEG measures unique to PPCS. These metrics are readily accessible to clinicians and may provide useful parameters to help predict trajectories, characterize injury (phenotype), and track the course of injury.
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Keywords: Acute concussion, prolonged post-concussion syndrome, return to play, electroencephalogram, event related potentials
Abstract: PURPOSE: This study assessed concussion knowledge in concussed youth and parents treated at a multi-disciplinary concussion center. METHODS: Youth (n = 50) and parents (n = 36) were approached at the beginning of a clinical visit. Participants completed a 22-item, previously published concussion knowledge survey before the visit. RESULTS: Responses were compared with previously collected, published data from adolescents in a high school setting (n = 500). The patient group was divided into those with one (n = 23) vs. two or more concussions (n = 27). Chi-square analyses compared total correct responses between youth, parents, and the high school sample.…T-tests assessed differences in knowledge based on prior concussions, age, and gender. All groups showed high accuracy for return-to-play guidelines (>90%) and similar knowledge of concussion-related symptoms (72.3% vs. 68.6%). Significant knowledge gaps about diagnosis, neurological consequences, and long-term risks were present across groups (19% to 68% accuracy). The patient group more often misattributed neck symptoms to concussion (X2 < 0.005). Prior concussion and gender were not significant predictors of concussion knowledge (p > 0.5). CONCLUSION: Community and clinically-based educational techniques may not be effectively communicating knowledge about concussion diagnosis, symptoms, long-term risks, and neurological implications of concussion. Educational tools need to be tailored to specific settings and populations.
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Keywords: Multidisciplinary care, sport-related concussion, education, knowledge
Abstract: PURPOSE: The primary aim was to describe sports participation of Dutch children and adolescents with lower limb deficiencies (LLD). The secondary aim was to explore perceived limitations concerning sports participation. METHODS: A total of 103 children and adolescents with LLD, aged 8–18 years (mean 11.7 years), were asked about their sports participation using a study-specific self-report questionnaire. RESULTS: Children and adolescents with LLD frequently (78%) participated in sports activities, and most of them (68%) participated in the sport of their preference. Just over half of all children (52%) perceived an inability to participate in specific sports.…Physical performance (running) and endurance were mentioned as the most limiting factors in participating in certain sports. CONCLUSION: Children and adolescents with LLD in the Netherlands participate in a variety of sports. Despite dependency on lower limb prostheses in most cases, children and adolescents with LLD have a high potentiality of participating in sports.
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Keywords: Sports participation, lower limb deficiency, lower limb prostheses, children and adolescents
Abstract: PURPOSE: This study aimed to investigate the stability of the Gross Motor Function Classification System (GMFCS) in children with cerebral palsy (CP) in the two to four year age band, the frequency at which children were reclassified, and trends of reclassification to higher or lower ability. METHODS: This retrospective study included 164 children with CP between 24 to 48 months old with two or more GMFCS ratings at least 12 months apart between their second and fourth birthdays. GMFCS ratings were captured closest to 24, 36, and 48 months. Stability and reclassification trends were analyzed using inferential statistics.…Frequency of reclassification, age at ratings, duration between ratings, and corresponding change rate were analyzed using descriptive statistics. RESULTS: When comparing ratings closest to second and fourth birthdays, a linear weighted kappa of 0.726 was found. Of the total population, 46.95% changed GMFCS levels at any time between two to four years of age, the majority of which were reclassified to a higher level of ability. CONCLUSION: Findings suggest the GMFCS is less stable in the two to four year age band compared to older age bands. Due to the importance of providing accurate guidance for caregivers and high rate of reclassification, it is recommended GMFCS levels be reassessed every six months during this period of time.
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Keywords: Cerebral palsy, gross motor function classification system, two to four year age band
Abstract: PURPOSE: This pilot study investigated the efficacy of passive range of motion (PROM) during the first year of life to prevent development of shoulder contractures in children with brachial plexus birth injury (BPBI) and identified facilitators and barriers to caregiver adherence with daily PROM. METHODS: Five caregivers of children with upper trunk BPBI participated in retrospective interviews about the frequency with which they performed PROM during their child’s first year of life including facilitators and barriers to daily adherence. Medical records were reviewed for documentation of caregiver-reported adherence and documented evidence of shoulder contracture by age one.…RESULTS: Three of the five children had documented shoulder contractures; all three had delayed initiation or inconsistent PROM in the first year of life. Two without shoulder contractures received consistent PROM throughout the first year of life. Making PROM part of the daily routine was a facilitator to adherence while family contextual factors were barriers. CONCLUSION: Absence of shoulder contracture may be related to consistent PROM throughout the first year of life; decreased frequency of PROM after the first month of life did not increase the risk of shoulder contracture. Consideration of family routines and context may facilitate adherence with PROM.
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Keywords: Brachial plexus birth injury, passive range of motion, contracture prevention, caregiver adherence
Abstract: PURPOSE: Family-centered rehabilitative care optimizes outcomes for children with significant developmental disabilities. Family-centered services involve assessing family resources that promote positive developmental outcomes for children. Little is known regarding family resources in the context of caring for a child with developmental disabilities in Brazil due to an absence of validated measures. This study describes the translation and cultural adaptation of the Family Resource Scale and explored the measurement quality of the resulting measure (the Brazilian-Family Resource Scale, or B-FRS). METHODS: A rigorous serial translation process that emphasized linguistic accuracy as well as cultural adaptation was utilized. The resulting…27-item B-FRS was theoretically related and reflected the contextual intent of the original measure. RESULTS: A four-factor scoring approach yielded acceptable internal consistency estimates for the subscales and total scale score. Overall, low levels of family resources were reported by caregivers of children with Congenital Zika Syndrome. Low family resources were associated with parental depressive and stress-related symptoms. CONCLUSION: Confirmatory factor analysis of the B-FRS in a larger sample is recommended. Practitioners in Brazil should broadly consider family needs and resources to provide family-centered care that is effective for the child and engages the family in a way that highlights their strengths and promotes positive developmental trajectories.
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Keywords: Congenital zika syndrome, Brazil, family resources, cross-cultural questionnaire adaptation
Abstract: PURPOSE: This study aimed to provide a reliable and valid translation of the Scoliosis Research Society-22 (SRS-22r) questionnaire, compare it with the EQ-5D-5 L questionnaire, and analyse health-related quality of life (HRQoL) of patients with idiopathic scoliosis (IS) in Slovenia in order to potentially improve their rehabilitation processes. METHODS: A matched-case-control study was performed to assess internal consistency reliability, test-retest reliability, concurrent validity, and discriminative validity. The questionnaire was returned by 25 adolescent IS patients, 25 adult IS patients, and 25 healthy controls (87%, 71%, and 100% response rate, respectively). RESULTS: Internal consistency was high for all…four scales in the adult IS group, but lower among the adolescent patients. Test-retest reliability of the SRS-22r was high to very high in both patient groups. Correlations between SRS-22r and EQ-5D-5 L were low or close to zero among adolescent patients and moderate or high among adult IS patients. SRS-22r domain scores were statistically significantly different between adult patients and healthy controls. CONCLUSION: The study proved that the Slovenian version of SRS-22r has the psychometric properties needed to measure HRQoL, whereby it appears to be more reliable for adults than adolescents. When used with IS adolescents, SRS-22r is affected by a severe ceiling effect. It could be used for longitudinal follow-up of adult patients after rehabilitation treatment. Additionally, some important issues that adolescents and adults with IS are faced with were identified.
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Keywords: Idiopathic scoliosis, quality of life, SRS 22r, validity, reliability
Abstract: PURPOSE: To assess the performance of premature infant oral motor intervention for transition from gavage to full spoon feeding in preterm infants. METHODS: Preterm neonates born between 28 + 0 –32 + 6 weeks gestation (n = 32) were randomised into an intervention group (premature infant oral motor intervention) for five minutes twice a day along with routine care (n = 16) and a control group (routine care, n = 16) once they reached a feed volume of at least 150 ml/kg/day administered by gavage method. The primary outcome measure was time (in days) to transition from gavage to full spoon feeds. RESULTS:…The mean (SD) time to transition from gavage to full spoon feeds was attained significantly earlier in the intervention group than the control group (9.93 [5.83 ] vs 16.43 [10.46 ] days; mean difference, -6.5 days; 95% CI, -12.58 to -0.41). There was no significant difference between the two groups in terms of the duration of hospital stay, rates of physiological stability, and culture positive sepsis. CONCLUSION: Premature infant oral motor intervention, as used in this specific population, significantly reduces the time to transition to full spoon feeds without increasing culture positive sepsis and physiological instability.
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Abstract: PURPOSE: The Wii Balance Board (WBB) can be used for assessment of steady state balance (SSB), but its reliability has not been studied in children aged 6–9 years. This study aimed to determine the test-retest reliability of the WBB for measuring SSB in this population. A secondary aim was to determine the minimum detectable change (MDC) and standard error of measurement (SEM) of the WBB in children aged 6–9 years. METHODS: 52 children between 6–9 years of age participated. “One leg stand balance” was used to assess center of pressure velocity (COPV) and center of pressure area (COPA)…on three occasions by the same tester. Two tests were conducted on the same day (Day 1) and the third test was performed on another day (Day 2), with a period of 5–13 days between the two test days. Intraclass correlation coefficient (ICC 3,1 ), SEMs, and MDC were calculated. RESULTS: Intra-day test-retest reliability of COPA was found to be good (ICC3,1 =0.86; 95% confidence interval [CI]: 0.75, 0.92) and that of COPV was also found to be good (ICC3,1 =0.87; 95% CI: 0.77, 0.92). Inter-day test-retest reliability was found to be good for COPA (ICC3,1 = 0.87; 95% CI: 0.75, 0.93) and COPV (ICC3,1 = 0.89; 95% CI: 0.81, 0.94). SEM for COPA in intra-day testing was 18.90 mm2 (15.78%), and in inter-day testing it was 16.44 mm2 (13.61%). SEM for COPV in intra-day testing was 1.12 mm/s (7.6%), and in inter-day testing it was 1.01 mm/s (6.9%). MDC for COPA in intra-day testing was 52.41mm2 (42.75%), and in inter-day testing was 45.58 mm2 (35.75%). MDC for COPV in intra-day testing was 3.11 mm/s (21.2%), and in inter-day testing it was 2.80 mm/s (18.9%). CONCLUSION: The WBB has good test-retest reliability for assessing SSB of children between 6-9 years. COPA measurements appear to be less sensitive to clinical changes in SSB when compared to COPV. Assessment of validity of the WBB in this age group is recommended before it can be considered as a potential balance assessment tool in children.
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Keywords: Wii Balance Board, center of pressure, reliability, steady state balance
Abstract: PURPOSE: This exploratory study demonstrates the application of functionally relevant physical exercises (FRPE) to objectively assess physical functioning among children with chronic pain. Intensive interdisciplinary pain treatment (IIPT) focuses on functional improvements as a primary outcome. FRPEs aim to enhance clinical assessments and monitoring by providing relevant data for physical and occupational therapies. METHODS: Children enrolled in three weeks of IIPT provided data for study. They completed two self-report measures of functioning (Lower Extremity Functioning Scale [LEFS] and Upper Extremity Functioning Index [UEFI]), measure of pain intensity, and six separate FRPEs (box carry, box lifts, floor to stand,…sit to stand, step ups, and modified six-minute walk test). Data from 207 participants aged 8–20 years old were analyzed. RESULTS: Upon admission, over 91% of children could perform each FRPE at some level to provide clinicians with a baseline assessment of functional strength. Following IIPT, all children were able to complete FRPEs. Overall, children reported statistically significant gains in functioning on all subjective reports and FRPEs (p ’s < 0.001). Spearman correlations demonstrated that LEFS and UEFI were weakly to moderately correlated to all FRPEs at admission (r’s between.43–.64, p ’s < 0.001 and.36–.50, p ’s < 0.01 respectively). Correlations between all subjective and objective measures were comparatively lower at discharge. CONCLUSION: FRPEs appear to serve as good objective measures of strength and mobility for children with chronic pain, measuring variability across patients and change over time, which is unique from subjective data gathered via self-report. Due to face validity and objective measurement of functioning, from a clinical practice perspective, FRPEs provide meaningful information to support initial assessment, treatment planning, and patient monitoring. This study offers initial support for a novel measurement method that is easily administered and replicated to effectively measure functional improvement in children with chronic pain.
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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.
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Abstract: Acute flaccid myelitis (AFM) is a “polio-like” neurologic disorder of the spinal cord gray matter characterized by asymmetric, flaccid limb weakness of rapid onset following prodromal viral illness. It has affected the pediatric population of the United States since 2014, but there is a paucity of literature describing the post-acute comprehensive rehabilitation management that maximizes functional outcomes for patients. This case series attempts to mitigate this by describing the complete acute and post-acute care course of six children diagnosed with AFM in Western Pennsylvania. It is critical that pediatric rehabilitation medicine providers be knowledgeable about the complex medical and rehabilitation…management for patients with AFM.
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Abstract: Virtual reality (VR) technology has seen increasing use in physical rehabilitation and in the management of acute and chronic pain. Functional movement disorders (FMDs) are a source of disability with no known association to neurologic pathology, and patients are generally offered multidisciplinary treatment approaches to improve functional movement. However, patients who are not compliant with rehabilitation may have persistent FMD and long-term disability. Given VR’s use in physical rehabilitation, it may serve as a useful adjunct for the management of FMD. Utilizing an application called MovementTM to create a playlist of targeted applications for the restoration of motor function…and balance, this case study presents the application of VR as a tool to engage patients in physical therapy for the management of FMD. The VR games were selected to encourage movement while customization of levels within the games facilitated achievement of physical therapy goals. Physical rehabilitation aided by VR, when used in collaboration with a multidisciplinary care team, may be used to facilitate recovery from FMD.
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Keywords: Functional movement disorder, functional neurologic disorder, psychogenic movement disorder, conversion disorder, dyskinesias, virtual reality