Journal of pediatric rehabilitation medicine最新文献

{"title":"Global burden of chronic non-communicable diseases: Prenatal care and beyond, numerous challenges besiege investigation across the care continuum.","authors":"Jonathan Castillo, Judy K Thibadeau, Andrea Park, Tim Brei, Heidi Castillo","doi":"10.1177/18758894251331737","DOIUrl":"https://doi.org/10.1177/18758894251331737","url":null,"abstract":"<p><p>Recently, the National Institutes of Health (NIH) announced possible restructuring of indirect and administrative costs for funded research. Many entities have raised concern about the impacts that such funding restructuring may have on the future progress of biomedical investigation. The NIH has historically played a key role in research on relevant chronic conditions, including spina bifida and cerebral palsy. Such research funds have not only provided occasion for basic science investigational opportunities but also have allowed for enquiry into clinical, social, and environmental factors that impact disability-specific health outcomes, including those present in some of the world's most vulnerable communities. However, the journal's editorial board is nonetheless encouraged to see the growth and change of <i>Journal of Pediatric Rehabilitation Medicine</i> (JPRM), as the journal evolves from a special issue format to a collections format. The collections will serve as ever-growing \"homes\" for the latest research on childhood-onset physical disabilities and complex care needs, with the added benefit of greater accessibility and improved user interface. Furthermore, as reflected in this issue, <i>JPRM</i> will continue to offer a platform for research in multidisciplinary care of childhood disability throughout the lifespan as we weather the changes of time together as a committed global community of clinicians and investigators.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894251331737"},"PeriodicalIF":0.8,"publicationDate":"2025-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143730537","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Satisfactory long-term functional and radiological outcomes following hip reconstructive surgery in children with cerebral palsy.","authors":"Kathleen Montpetit, Souad Rhalmi, Mathieu Lalumiere, Noémi Dahan-Oliel, Doron Keshet, Dan Epstein, Reggie Hamdy","doi":"10.1177/18758894251316072","DOIUrl":"https://doi.org/10.1177/18758894251316072","url":null,"abstract":"<p><p>PurposeThis study aimed to evaluate long-term functional and radiological outcomes as well as parents' perception of change and overall satisfaction following hip reconstructive surgery in children with cerebral palsy (CP).MethodsMedical charts of children between three and 18 years of age with CP who had surgery between 1993 and 2014 by the same surgeon were reviewed. The study sample consisted of 44 children (Gross Motor Function Classification System levels I-V) aged 2-18 years representing 60 hips. Mean follow-up was 8.4 years [1.8-17.5]. A final follow-up evaluation was held to obtain post-operative anteroposterior pelvic radiographs and administer patient-reported outcomes to the caregivers.ResultsCare and Comfort Hypertonicity Questionnaire scores showed that 74-79% of caregivers reported no difficulty post-surgery in terms of child's pain or discomfort during position changes, when participating in general activities, or during sleep. The Lower Extremity Parent-Rated Change Form showed that 58-76% of caregivers reported a better status in their child's overall health, leg function, activity level, and pain post-surgery. Seventy-six percent of the caregivers indicated satisfaction with the overall changes since the surgery. For the 45 hips with both pre-operative and follow-up radiological outcomes, migration percentage improved significantly (p < 0.001) by 36.7%, and there was a 62.2% increase in the number of hips that were located post-operatively compared to pre-operatively. Acetabular coverage improved significantly (p < 0.001) from non-covered to covered in 46.7% of the hips and Shenton's line improved significantly (p < 0.001) from non-intact to intact in 66.7% of the hips.ConclusionHip reconstructive surgery improved long-term functional and radiological outcomes, as well as quality of life for children and caregivers, while changes were perceived as satisfactory to the families. Evaluating pain, function, and satisfaction is important to measure the impact of hip reconstructive surgery on daily life.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894251316072"},"PeriodicalIF":0.8,"publicationDate":"2025-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143669805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Quantitative ultrasound of submental and masticatory muscles in children with cerebral palsy.","authors":"Marloes L J Lagarde, Karen van Hulst, Corrie E Erasmus, Lenie van den Engel-Hoek, Alexander C H Geurts, Nens van Alfen","doi":"10.3233/PRM-230029","DOIUrl":"10.3233/PRM-230029","url":null,"abstract":"<p><strong>Purpose: </strong>Quantitative muscle ultrasound (QMUS) is potentially valuable as a diagnostic tool in central neurological disorders, as it provides information about changes in muscle architecture. This study aimed to investigate whether ultrasound images of the submental and masticatory muscles in children with spastic cerebral palsy (CP) differ from those obtained in a reference group, and whether observed ultrasound abnormalities differ between subgroups of children with different Eating and Drinking Ability Classification System (EDACS) levels to support its construct validity.</p><p><strong>Methods: </strong>A prospective cohort study was conducted in 25 children with spastic CP aged 3-18 years. QMUS of selected muscles was performed. Muscle thickness and echogenicity in the CP group were compared to previously collected reference values, and between different EDACS levels within the CP group.</p><p><strong>Results: </strong>Median echogenicity of all muscles was significantly higher in children with CP than in healthy controls. The temporalis muscle was significantly thinner in the CP group. There were no differences in muscle thickness or echogenicity between EDACS levels.</p><p><strong>Conclusion: </strong>QMUS is able to detect abnormal architecture of submental and masticatory muscles in children with spastic CP, but the interpretation of abnormalities in relation to the severity of mastication and swallowing problems needs further investigation.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"13-22"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141600258","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Showcasing the breadth of pediatric rehabilitation medicine.","authors":"Rachel Byrne, Heakyung Kim, Raffi Najarian, Elaine Pico, Justin Ramsey, Sruthi Thomas, Sara Tinsley","doi":"10.1177/18758894251319631","DOIUrl":"10.1177/18758894251319631","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"3-4"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143709920","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The functional secondary effect after an integrated rehabilitative intervention to learn reading and writing in a girl with Rubinstein-Taybi syndrome.","authors":"Donatella Saviola, Katia de Gaetano, Stefania Bruni, Margherita Chiari, Chiara Moschini, Erica Battagliola, Daniela Colla, Matteo Cantoni, Antonio De Tanti","doi":"10.3233/PRM-230051","DOIUrl":"10.3233/PRM-230051","url":null,"abstract":"<p><p>PURPOSEA case report of a six-year and five-month-old female admitted with typical symptoms of Rubinstein-Taybi syndrome is presented. Clinical and rehabilitation settings where she acquired her reading, writing, and communication skills are described.METHODSBecause of her cognitive disabilities, a multidisciplinary and long-term intervention (2014-2020) was necessary. Treatment included orthoptic, psychomotor, logopedic, occupational, and neuropsychological care. Her family and school were involved.RESULTSIncreased attention led to decreased dysfunctional behaviors. Test results are still below average, but there has been significant improvement. Better communication skills resulted from increased phonetic range, improved articulation, lexical-semantic structure, comprehension, and production of sentences. Digital technologies played a significant role in enhancing her communication skills, not just in social interactions but also in school activities. The patient is oriented in time and space with the help of agendas and calendars. She can express her needs and compose concise narratives. As a result of acquiring functional skills, she is better equipped to handle real-life situations, which has led to increased social and family activities.CONCLUSIONThis case report highlights the importance of personalized rehabilitation programs. Obtaining an early genetic diagnosis is crucial for timely tailored rehabilitation, and any delays in this process can hinder progress.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"47-56"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141437024","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"New-onset hydrocephalus in an adult with cerebral palsy: A case report and review of the literature.","authors":"Jeremy Roberts, Denesh Ratnasingam, Cristina Sarmiento","doi":"10.3233/PRM-240015","DOIUrl":"10.3233/PRM-240015","url":null,"abstract":"<p><p>Hydrocephalus is a common comorbidity associated with brain injuries, including cerebral palsy (CP). In CP, hydrocephalus typically presents in infancy or early childhood. This report describes a patient in their mid 20 s with mixed dyskinetic-spastic CP with adult-onset hydrocephalus of unknown cause initially presenting with new-onset bilateral lower extremity spasms. Multiple interventions were trialed, including ischial bursal steroid injections, botulinum toxin injections, trigger point injections, multiple oral medications, and physical and massage therapies without benefit. Given lack of treatment response, imaging of the neuraxis was obtained. Magnetic resonance imaging (MRI) of the brain demonstrated new diffuse moderate ventriculomegaly compared to prior MRI. Ophthalmologic evaluation demonstrated papilledema, and opening pressure on lumbar puncture was elevated to 44 mmHg H₂O. The patient underwent ventriculoperitoneal shunt placement with rapid and near-resolution of their spasms and pain. This patient represents a unique case of new-onset hydrocephalus in an adult with CP. To ensure appropriate and timely diagnosis and treatment, individuals with neurologic conditions such as CP should have ongoing surveillance and comprehensive evaluation for any neurologic or functional changes, including changes in baseline tone. Future research is needed to better understand if adults with CP are at higher risk for the development of hydrocephalus in adulthood.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"26-29"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142289668","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using technology to enhance prevention of pressure injuries in the spina bifida population.","authors":"Holly Kirkland-Kyhn, Tuba Sengul, Dilek Yilmaz Akyaz","doi":"10.1177/18758894251316073","DOIUrl":"10.1177/18758894251316073","url":null,"abstract":"<p><p>Patients with spina bifida (SB) are highly susceptible to pressure injuries (PIs) due to limited mobility and sensory deficits, and they may occur during multiple surgical procedures. The article highlights that PIs, which significantly increase hospital costs and extend patient stays, can be prevented mainly through evidence-based interventions. One of the critical technologies used at this stage is pressure mapping to monitor and optimize pressure distribution on surfaces, whether lying or seated, particularly during prolonged medical procedures. Additionally, the article emphasizes the importance of educating families and caregivers about early signs of PIs, photography, using electronic health records for tracking, and effective home care strategies to prevent these injuries post-discharge. Future research should investigate how to enhance prevention methods in hospital settings, especially for patients undergoing surgeries or other lengthy procedures. Overall, the article underscores the critical role of early identification of risk, intervention, and technological support in reducing the incidence and impact of PIs in patients with SB.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"57-60"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143433354","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Approach to obtaining a swallow study in a five-year-old with a disability and significant procedural anxiety: A case report.","authors":"Tyler Estes, Aaron Gaul, Allison Thornton, Laura Hobart-Porter","doi":"10.3233/PRM-230063","DOIUrl":"10.3233/PRM-230063","url":null,"abstract":"<p><p>CASE DESCRIPTIONA five-year-old male with spastic quadriplegia cerebral palsy and an expressive communication disorder presented because the family desired liberalization of diet. The diet consisted of pureed solids and no liquids due to deficits identified on bedside swallow evaluation; further dysphagia assessment had not been obtained due to significant procedural anxiety. Comprehensive approaches were taken involving premedication with buspirone, desensitization, distraction, and positive reinforcement. The fluoroscopic swallow study was successfully completed, and the patient's diet was upgraded to include moderately thickened liquids.DISCUSSIONProcedural anxiety management in special populations is not well-researched. The lack of definitive recommendations regarding these issues increases the difficulty of managing these patients. This case highlights one successful approach to addressing individual needs using widely-available pharmacologic and environmental techniques. Additionally, this case reinforces the need to identify underlying causes for procedural anxiety and involve an interdisciplinary team.CONCLUSIONSAttempts should be made to identify factors driving procedural anxiety. After discussing with the patient and family, relevant information should be relayed to staff with an open-ended invitation to propose ideas. While not all hospitals have equivalent resources, concerns related to unfamiliarity, underlying anxiety, and locus of control can be addressed with limited resource utilization, as demonstrated in this case.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"23-25"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141093095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and content validation of a survey assessing domains of sexual and reproductive health in adults with spina bifida.","authors":"Betsy Hopson, Ching Man Carmen Tong, Courtney Streur, Brandon G Rocque, Jeffrey Blount, Nataliya Ivankova, Donald H Lein","doi":"10.1177/18758894241304357","DOIUrl":"10.1177/18758894241304357","url":null,"abstract":"<p><p>PurposeIndividuals with spina bifida (SB) often face substantial gaps in sexual and reproductive health (SRH) knowledge leading to low use of contraception, poor utilization of preventative sexual health care, unintended pregnancies, missed opportunities to pursue their SRH goals, and increased risk of abuse and coercion. Validated questionnaires are needed to reliably test and track the SRH and self-efficacy of adults with SB. This study aimed to develop a survey with content validity to assess five SRH domains in adults with SB.MethodsAn initial survey was informed by a targeted literature review as well as stakeholder and expert opinions. Social cognitive theory's self-efficacy concept, known for its predictive power in behavior change among those with physical disabilities, guided its development. The survey items were iteratively reviewed online by national sexual health experts using a modified Delphi method, assessing item clarity, relevance, and comprehensiveness. Then, cognitive interviews of the refined instrument were conducted with five adults with SB to analyze acceptance and understanding.ResultsOf the 26 potential panel members invited to participate, 22 (85%) responded and agreed to participate. There were seven urologists (two adult, five pediatric), six developmental pediatricians, six registered nurses from SB clinics, two physiatrists, and one medicine-pediatrics trained internist. Consensus was achieved after three rounds for 100 survey items. Following each round, items were refined through researcher consensus until the content validity index was met (agreement = 0.8-1.0) for each question, ensuring all domains were adequately represented. These domains included sexual knowledge/education, sexual practice, sexual safety/risk profile, history of abuse, and perceived self-efficacy.ConclusionContent validity, clarity, and functionality of a novel survey that probes five domains of SRH in adults with SB was established. The survey can be utilized in both research and clinical settings to assess baseline SRH knowledge, identify risky behaviors, and screen for sexual abuse.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"389-396"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649447","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Glass half full: Non-invasive bladder biosensors for urinary volume monitoring in the neurogenic pediatric population.","authors":"Serena Ly, Eric A Kurzrock","doi":"10.1177/18758894241304358","DOIUrl":"10.1177/18758894241304358","url":null,"abstract":"<p><p>PurposeThe goal was to elucidate and present the current landscape of bladder biosensor technology for urinary volume monitoring in the management of neurogenic bladder. The need for such technology in managing neurogenic bladder in the pediatric population is discussed, as well as the challenges researchers currently face in advancing individual technologies.MethodsA literature review including 43 articles discussing bladder biosensor and related technology for continuous urinary volume monitoring was conducted. Articles ranged from original research studies to systematic reviews.ResultsVarious continuous bladder urine volume monitoring devices have been proposed and evaluated. These devices utilize principles of ultrasound, electrical impedance tomography, near infrared spectroscopy, pressure biosensor implantation, microwave radar, and frequency modulated continuous wave radar. While several studies have shown promise in correlating device measurements to bladder urinary volume changes, ultimately researchers have not been able to surmount the challenges of optimizing configuration of device components and the impacts of dynamic position, posture, body habitus, bladder location, and urine biochemical properties that demonstrate high interpersonal variability.ConclusionThe need for developing bladder biosensor technology to provide continuous urine volume monitoring in patients with neurogenic bladder remains great. Transitioning from a time-based clean intermittent catheterization approach to a volume-based approach would possibly improve neurogenic bladder patients' quality of life. While technologies face limitations that have stalled translation to clinical practice, there is potential to build upon past work to address current challenges and meet this ever-pressing need.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"420-425"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}