Journal of Pediatric Rehabilitation Medicine - Volume 17, issue 1

Authors: Kim, Heakyung | Najarian, Christopher Raffi | Ramsey, Justin W. | Thomas, Sruthi Pandipati

Article Type: Editorial

DOI: 10.3233/PRM-249002

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 1-1, 2024

Authors: Ramsey, Justin | Najarian, Christopher Raffi

Article Type: Editorial

Abstract:  Individuals with disabilities comprise approximately 13% of the overall population. This editorial explores recent events that may involve ableism. The recent COVID pandemic created a rapid need and pressure to develop ventilator allotment policies. Many concluded several state policies were discriminatory in nature toward persons with disabilities (PWD). Lack of disability representation in medical fields may contribute to such discrimination within state and hospital medical policies. The underrepresented numbers of PWD in medical fields are explored. We conclude that improved education for all medical providers is needed. Possible strategies for improving healthcare representation and delivery within the United States are …discussed. Show more

Keywords: Equity, inclusion, healthcare

DOI: 10.3233/PRM-240013

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 3-7, 2024

Authors: Thomas, Sruthi P. | Novak, Iona | Ritterband-Rosenbaum, Anina | Lind, Karin | Webb, Annabel | Gross, Paul | McNamara, Maria

Article Type: Position Paper

Abstract: The prevalence of cerebral palsy (CP) varies globally, with higher rates and burden of disease in low- and middle-income countries. CP is a lifelong condition with no cure, presenting diverse challenges such as motor impairment, epilepsy, and mental health disorders. Research progress has been made but more is needed, especially given consumer demands for faster advancements and improvements in the scientific evidence base for interventions. This paper explores three strategies to accelerate CP research: consumer engagement, global clinical trial networks, and adaptive designs. Consumer engagement involving individuals with lived experience enhances research outcomes. Global clinical trial networks provide efficiency through …larger and more diverse participant pools. Adaptive designs, unlike traditional randomized controlled trials, allow real-time modifications based on interim analyses, potentially answering complex questions more efficiently. The establishment of a CP Global Clinical Trials Network, integrating consumer engagement, global collaboration, and adaptive designs, marks a paradigm shift. The Network aims to address consumer-set research priorities. While challenges like ethical considerations and capacity building exist, the potential benefits for consumers, clinicians, researchers, and funding bodies are substantial. This paper underscores the urgency of transforming CP research methodologies for quicker translation of novel treatments into clinical practice to improve quality of life for those with CP. Show more

Keywords: Cerebral palsy (CP), clinical trials, adaptive designs, global research networks, consumer engagement

DOI: 10.3233/PRM-240014

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 9-17, 2024

Authors: Katsma, Mark | Liu, Haiqing | Pan, Xiaoyu | Ryan, Kyle J. | Roye, David P. | Chambers, Henry G.

Article Type: Other

Keywords: Cerebral palsy, orthopedic surgery, musculoskeletal, adults

DOI: 10.3233/PRM-240018

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 19-33, 2024

Authors: Newell, Amber | Liang, Neal | Moskowitz, Jan | Lee, Nancy | Pan, Xiaoyu Norman | Kim, Heakyung

Article Type: Research Article

Abstract: PURPOSE: Cerebral palsy (CP) is a prevalent motor disorder affecting children, with evolving demographics indicating an increasing survival into adulthood. This shift necessitates a broader perspective on CP care, particularly in addressing the often overlooked aspect of sexuality. The purpose of this study was to investigate experiences of, challenges with, and related factors of sexuality and intimacy that people with CP are facing. METHODS: This was a descriptive and cross-sectional single institution survey among individuals with CP, ages 18 to 65, who had the ability to independently complete an online survey. RESULTS: A …total of 40 respondents participated in the survey (Gross Motor Function Classification System [GMFCS] level I/II, 32.5%; III, 35%; IV, 32.5%). Of those, 45% were partnered, 60% had past sexual experience, 47.5% were currently sexually active at the time of submitting the survey, 80% had masturbation experience, and 45.8% believed it had positive effect on their self-esteem. Only 10% received sex education tailored for people with disability, whereas school (72.5%) and internet (35%) were the most common sources of sex education. Muscle spasms, positioning difficulty, and pain/discomfort were the most common physical challenges experienced during intimate activity amongst all function stratifications. Stratification analysis showed that, compared to higher functioning respondents, a smaller proportion of lower functioning respondents were partnered (GMFCS IV, 23.1%; quadriplegic, 31.6%), had past or current sexual experience (GMFCS IV, 44.4%, 36.4%; quadriplegic, 42.1%, 26.3%, respectively), and had masturbation experience (GMFCS IV, 61.5%); Also, they had worse Quality of Life Scale scores on average (GMFCS IV, 88.4; quadriplegic, 88.3) and a higher rate of reported positive effects of sexual experiences on self-esteem than negative (GMFCS IV, 38.5%; quadriplegic, 35%). Show more

DOI: 10.3233/PRM-240006

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 35-45, 2024

Authors: Ayoubi, Lubna | Pruente, Jessica | Daunter, Alecia K. | Erickson, Steven R. | Whibley, Daniel | Whitney, Daniel G.

Article Type: Research Article

Abstract: PURPOSE: This study aimed to describe opioid prescription patterns for children with vs. without cerebral palsy (CP). METHODS: This cohort study used commercial claims from 01/01/2015–12/31/2016 and included children aged 2–18 years old with and without CP. Opioid prescription patterns (proportion exposed, number of days supplied) were described. A zero-inflated generalized linear model compared the proportion exposed to opioids in the follow-up year (2016) and, among those exposed, the number of days supplied opioids between cohorts before and after adjusting for age, gender, race, U.S. region of residence, and the number of co-occurring neurological/neurodevelopmental disabilities (NDDs). …RESULTS: A higher proportion of children with (n  = 1,966) vs. without (n  = 1,219,399) CP were exposed to opioids (12.1% vs. 5.3%), even among the youngest age group (2–4 years: 9.6% vs. 1.8%), and had a greater number of days supplied (median [interquartile range], 8 [5–13 ] vs. 6 [4–9 ] days; P  < 0.05). Comparing children with opioid exposure with vs. without CP, a greater number of days supplied was identified for older age, Asian race/ethnicity, and without co-occurring NDDs, and a lower number of days supplied was observed for Black race/ethnicity and with ≥1 co-occurring NDDs. CONCLUSION: Children with CP are more likely to be exposed to opioids and have a higher number of days supplied. Show more

Keywords: Cerebral palsy, opioids, epidemiology

DOI: 10.3233/PRM-230009

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 47-56, 2024

Authors: Ratnasingam, Denesh | Woehrlen, Tess | Koerber, Samantha | Drenth, Emma | Marupudi, Neena | Concepcion, Melisa | Erlandson, Erika

Article Type: Research Article

Abstract: PURPOSE: The use of intrathecal medications for the management of spasticity and various pain syndromes in the adult population has been previously reported. However, no evidence-based guidelines currently exist in the pediatric population. This case series presents patients (n  = 8) with pediatric-onset disability who underwent placement of intrathecal baclofen pumps initially for management of severe spasticity. Despite titration of dose and use of oral analgesia, their uncontrolled pain persisted. Each patient was transitioned to a combination of baclofen and analgesic intrathecal therapy. The outcome in pain improvement and quality of life, as reported by patients and/or caregivers, were retrospectively reviewed. …METHODS: Retrospective review of the background and decision-making process regarding transition to combination intrathecal therapy identified patient selection characteristics. Each patient and/or their caregivers completed a survey regarding improvements in pain, spasticity, function, and quality of life following initiation of combination intrathecal medications. RESULTS: Survey results revealed improvements in functional and pain assessments after initiation of combination baclofen and analgesic intrathecal medication. Patients and caregivers reported decreases in pain and oral spasticity medications. CONCLUSION: Use of pumps with antispasmodic and analgesic medication for combination intrathecal medication delivery should be considered in the management of patients with childhood-onset disabilities who have both severe spasticity and pain. Show more

Keywords: Spasticity, pain, intrathecal medication management

DOI: 10.3233/PRM-220100

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 57-66, 2024

Authors: Deshpande, Nikhil | Gormley, Mark E. | Deshpande, Supreet

Article Type: Research Article

Abstract: PURPOSE: Infants can have muscle hypertonia due to cerebral palsy, muscle strength imbalances due to brachial plexus palsy, refractory clubfoot, and torticollis. These muscle problems can cause significant development impairments. A child with severe sialorrhea and dysphagia from leukodystrophy can aspirate, causing respiratory problems. Botulinum toxin (BoNT) injections can improve these conditions but may lead to adverse effects from the toxin spreading to non-targeted muscles, potentially impacting breathing, swallowing, and overall strength. This is particularly concerning in infants. This study assessed the safety of BoNT injections in children less than one year of age. METHODS: This was a …retrospective cohort study. RESULTS: Forty-seven patients (22 male, 25 female) received BoNT injections before one year of age (three to 12 months). Thirty-seven received one round of injections and 10 were injected on multiple occasions. Forty-five received onabotulinumtoxinA (15–100 units [U], 1.9–15.2 U/kg), one received abobotulinumtoxinA (70 U, 9.0 U/kg), and one received incobotulinumtoxinA (25 U, 3.5 U/kg). Lower extremities were treated in 15 patients, upper extremities in 38, the sternocleidomastoid in two, and the salivary glands in one. Forty-five patients had no reported complications. One experienced transient fever, vomiting, and diarrhea. The parent of another reported subjective weakness in one muscle. CONCLUSION: BoNT injections in children less than one year of age appear to be safe. Show more

Keywords: Botulinum toxin, infants, spasticity, brachial plexus injury

DOI: 10.3233/PRM-220003

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 67-73, 2024

Authors: Boyer, Elizabeth | Huang, Qiyin | Ngwesse, Stacy | Nelson, Jennifer | Oh, Jinseok | Konczak, Jürgen

Article Type: Research Article

Abstract: PURPOSE: There is no established clinical standard to evaluate ankle proprioception in children with cerebral palsy (CP). This study compared ankle position sense of children with CP to age-matched children who are typically developing (TD). METHODS: Children aged 6–17 years participated (15 CP, 58 TD). Using a custom-built device, the ankle was passively rotated to two positions for 25 trials. Using a psychophysical forced-choice paradigm, participants indicated which position was more plantarflexed. A psychometric function was fitted to the response data to determine the just noticeable difference (JND) threshold and the associated uncertainty (random error) for ankle position …sense. RESULTS: Median JND thresholds for the CP group were elevated (CP: 4.3°, TD: 3.0°). Three children with CP exceeded the 95th percentile of TD. No differences in random error were found. CONCLUSION: This method assessed ankle proprioception relative to norm data and identified position sense impairments in children with CP. Using this method can provide data on proprioceptive status in CP, augmenting the assessment of motor impairment. Show more

Keywords: Balance, human, position sense, somatosensory, kinesthesia

DOI: 10.3233/PRM-220140

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 75-83, 2024

Authors: Evangelou, Gabriela | Adams, Skye Nandi

Article Type: Research Article

Abstract: PURPOSE: In accordance with South Africa’s restrictions to mitigate the spread of COVID-19, some speech-language pathologists (SLPs) attempted to engage in novice teletherapy regimes to ensure continuity of care for children with cerebral palsy (CP). This study aimed to explore the experiences of caregivers of children with CP implementing SLP teletherapy during COVID-19 in South Africa. The goal was to shed light on how these families can be better supported and how teletherapy practices can be adjusted for this population. METHODS: This study employed a qualitative phenomenological research design using in-person and virtual semi-structured interviews with …18 purposively sampled participants with children with CP who received speech and language teletherapy during COVID-19. The data was evaluated using an inductive thematic analysis approach whereby themes elicited from the caregivers’ narratives were analyzed. RESULTS: Interviews (n  = 18) unveiled the significant understanding caregivers gained by becoming integral and active stakeholders in the provision of teletherapy. Caregivers were able to meaningfully communicate and bond with their children with CP. However, caregivers also assumed the burden that teletherapy placed on them, as they had to renegotiate their role during the pandemic in order to provide routine teletherapy. CONCLUSION: Findings indicated the need for person-centered SLP teletherapy interventions that utilize contextually and culturally responsive techniques and resources. Show more

Keywords: Cerebral palsy, caregiver, COVID-19, teletherapy, South Africa

DOI: 10.3233/PRM-220118

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 85-96, 2024

Authors: Mahmood, Qamar | Habibullah, Shaista | Aurakzai, Hazrat Ullah

Article Type: Research Article

Abstract: PURPOSE: This study aimed to assess the effectiveness of simple and basic home-based exercise programs (HEPs), including pediatric massage (PM), executed by caregivers at their homes in the management of children with spastic cerebral palsy (CP). METHODS: Sixty-eight children with spastic CP (diplegia) aged 4–12 years were randomly assigned to PM and HEP groups for a randomized controlled trial continuing from November 01, 2021 to June 2022. Parents provided home-based exercises to both groups, five times a week for 12 weeks. However, the PM group was additionally provided with PM. Modified Ashworth Scale (MAS), …Gross Motor Function Measure (GMFM-88) and Gross Motor Function Classification System (GMFCS) were used for evaluation of spasticity and gross motor activity at baseline as well as after six and 12 weeks of intervention. Comparative analysis of data was carried out with SPSS-20. RESULTS: Mean age in HEP and PM groups was 6.65±2.12 and 7.09±2.22 years respectively. Data revealed homogeneity of both groups at the beginning of study. The PM group showed a statistically significant decrease in MAS scores after six and 12 weeks of intervention (p  < 0.05) when compared with the HEP group, but similar changes did not happen in GMFM scores and GMFCS levels. However, comparative analysis revealed statistically significant change in GMFM scores and GMFCS levels (p  < 0.05) when compared from baseline to 12 weeks of intervention in both groups. CONCLUSION: PM along with HEPs can be used effectively to reduce spasticity and to improve gross motor ability if performed for a period of at least six and 12 weeks respectively. In conjunction with HEPs, PM has better outcomes in the management of tone and movement disorders of spastic CP than HEPs alone Show more

Keywords: Children, gross motor function, modified Ashworth scale, pediatric massage, spastic cerebral palsy

DOI: 10.3233/PRM-220135

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 97-106, 2024

Authors: Meriggi, Paolo | Mandalà, Martina | Randazzo, Mattia | Brazzoli, Elena | Castagna, Anna | Di Giusto, Valentina | Cavallini, Anna | Marzegan, Alberto | Lencioni, Tiziana | Olivieri, Ivana

Article Type: Research Article

Abstract: PURPOSE: Unilateral cerebral palsy (UCP) represents about 30–40% of overall cerebral palsy diagnoses. Upper limb impairment has a significant negative impact on activities of daily living (ADL), and recent studies have shown that the use of virtual reality (VR) can increase motivation and promote an improvement in ADL. This preliminary study was aimed at exploring the acceptability and usability of a VR rehabilitation treatment, using the VITAMIN Platform, for children with UCP. A secondary goal of the study was to compare the results of usual standardized clinical scales and questionnaires with kinematic results as well as with the quantitative …measures acquired by the VITAMIN platform in each exercise of the rehabilitation sessions. METHODS: Six children with UCP (aged 7–15) were recruited for a preliminary investigation in using a non-immersive VR system. The treatment was composed of 10 weekly sessions of 45 minutes. Each child played five types of exergames, using the impaired upper limb to hit virtual objects projected on a wide screen. Standardized clinical scales, kinematic analysis, and questionnaires were used to extensively assess upper limb function before and at the end of treatment. Five typically-developing children provided a reference for the instrumented kinematic assessment. RESULTS: At the end of the treatment, Melbourne Assessment 2 (MA2) scores increased for all the participants (mean increase in range of movement (ROM) + 19.1%, accuracy + 4.6%, dexterity + 13.1%, fluency + 10.3%). Shoulder flexion-extension ROM also improved (mean increase + 10.5°), and according to the kinematic analysis, shoulder movements became more similar to reference profiles. These results were confirmed by a general improvement in performing ADL, assessed by the ABILHAND-Kids questionnaire. Finally, a general agreement among the different measures and indexes emerged from the acquired data. CONCLUSION: The results show that VR treatment with the VITAMIN platform could be engaging and functional for rehabilitation of children with UCP. The good agreement among the qualitative and quantitative measures and indexes confirms the potential of such novel treatment. However, due to the limited sample size and small number of sessions, further and larger investigations are required to evaluate the effectiveness and to generalize the results. Show more

Keywords: Virtual reality, unilateral cerebral palsy, hemiplegic children, rehabilitation, upper limb function

DOI: 10.3233/PRM-230028

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 107-123, 2024

Authors: Roberts, Jeremy | Tenaglia, Amy | Bellissimo, Elisabeth | Kim, Heakyung

Article Type: Case Report

Abstract: This report describes a 15-year-old female with known spastic and dystonic quadriplegic cerebral palsy (CP), Gross Motor Function Classification System IV, and obstructive sleep apnea (OSA). She experienced decreased apneic episodes after receiving onabotulinumtoxin A (BoNT-A) injections for the treatment of oromandibular dystonia (OMD). After her OSA diagnosis, she initially received injections to the bilateral masseter and temporalis muscles with no effect on the frequency of nightly apneic episodes. Subsequently, the bilateral lateral pterygoid muscles were added and she was later noted to have fewer apneic episodes overnight. This case report describes the use of BoNT-A in the muscles of …mastication for management of OMD and the ensuing improvement in OSA in a teenager with CP. Show more

Keywords: Oromandibular dystonia, botulinum toxin, apnea, cerebral palsy, case report

DOI: 10.3233/PRM-220105

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 125-129, 2024

Authors: Mirbagheri, Sedigheh Sadat | Bahramizadeh, Mahmood | Aminian, Gholamreza | Dalvand, Hamid | Farahmand, Farzam | Vahedi, Mohsen

Article Type: Case Report

Abstract: PURPOSE: This study examined the effects of a dynamic neoprene orthosis on kinematic variables of gait in children with spastic bilateral cerebral palsy (CP). METHODS: Five children (whose median age was 9.6 years and who ranged in age from six to 12) with spastic bilateral CP and flexed knee at levels I-III of the Gross Motor Function Classification System were examined using kinematic gait analysis in three different conditions: 1) with dynamic neoprene orthosis; 2) without dynamic neoprene orthosis (immediate effect); and 3) without orthosis after six weeks of intervention. RESULTS: The comparison between condition one …(with dynamic neoprene orthosis) and condition two (without dynamic neoprene orthosis) demonstrated the existence of improvements in minimum hip and knee flexion variables. Moreover, the results indicated that the improvements remained constant in several key gait variables after six weeks. CONCLUSION: The results varied from subject to subject, and there were signs of improvement in some of the subjects. Therefore, it was not possible to draw conclusions at a group level. Nonetheless, a number of individuals may benefit from this type of orthosis. Show more

Keywords: Cerebral palsy, dynamic neoprene orthosis, muscle spasticity, walking

DOI: 10.3233/PRM-200806

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 131-138, 2024

Authors: MacCarthy, Matthew

Article Type: Other

Keywords: Disability, cerebral palsy, sport, lifespan, lived experience

DOI: 10.3233/PRM-240012

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 139-141, 2024

Article Type: Correction

DOI: 10.3233/PRM-249001

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 17, no. 1, pp. 143-143, 2024