Journal of pediatric rehabilitation medicine最新文献

{"title":"Award announcements 2023.","authors":"Elaine L Pico","doi":"10.3233/PRM-239019","DOIUrl":"10.3233/PRM-239019","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 4","pages":"683"},"PeriodicalIF":0.8,"publicationDate":"2023-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789337/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143433340","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"List of Reviewers 2023.","authors":"","doi":"10.3233/PRM-239018","DOIUrl":"10.3233/PRM-239018","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 4","pages":"679-681"},"PeriodicalIF":0.8,"publicationDate":"2023-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789361/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143433353","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Spina bifida global learning collaborative: Educating the next generation of clinicians, researchers, and advocates","authors":"N. Dosa, Yakob S. Ahmed, Ann I. Alriksson‐Schmidt, H. Castillo, Silvana Contepomi, Mary M. Locastro, Jan Koning, George Koutsouros, Elly Kutwa, Anjali Mahorta, Shade MacFarland, A. Öhrvall, Patricia O’Neill, Anneloes Overvelde, M. Peny-Dahlstrand, Andrea Shaw, Jessica Stockman, Zulma Tovar-Spinoza, Jonathan Castillo","doi":"10.3233/prm-230037","DOIUrl":"https://doi.org/10.3233/prm-230037","url":null,"abstract":"PURPOSE: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees. METHODS: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022–23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors. Education initiatives in Ethiopia, Sweden, Argentina, Ecuador, and the United States were evaluated vis-à-vis format and content. RESULTS: All of the education initiatives referenced the framework of the World Health Organization International Classification of Functioning, Disability and Health. Formats varied and included both virtual and interactive workshops, print materials, videos, and guides for small group discussion. Content addressed four domains: Folate Prevention, Neurosurgical Training, After Care, and Data Collection. A multidisciplinary approach, partnerships with families, and workforce pipeline training were identified as guiding themes for educating the next generation of SB researchers and clinicians in global health settings. CONCLUSION: The Spina Bifida Global Learning Collaborative is a transnational group of advocates, clinicians, and investigators whose mission is the advancement of SB-related global health education. Lessons learned from the collaborative are being leveraged to develop a global health curriculum for learners, which may improve services for individuals with SB around the globe.","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"101 38","pages":""},"PeriodicalIF":1.9,"publicationDate":"2023-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138958759","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":"Commentary on “Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study” by Szymanski et al.","authors":"Michael D. Partington","doi":"10.3233/prm-230068","DOIUrl":"https://doi.org/10.3233/prm-230068","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"110 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2023-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138959262","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":"Preliminary assessment of a standardized vision screening guideline in a pediatric inpatient rehabilitation unit","authors":"Jordan R. Wentz, Erin E. Wentz, Samuel R Pierce","doi":"10.3233/prm-220137","DOIUrl":"https://doi.org/10.3233/prm-220137","url":null,"abstract":"PURPOSE: This study aimed to evaluate the impact of a standardized vision screen guideline on occupational therapy vision screens in a pediatric inpatient rehabilitation unit. METHODS: Charts of patients admitted to a pediatric inpatient rehabilitation before guideline implementation (n = 47) versus charts after implementation (n = 47) were randomly, retrospectively reviewed to explore differences in visual skills screened and use of standardized assessments. RESULTS: Significant improvements (p <  = 0.05) were found in the number of visual skills screened (p = 0.034), use of standardized assessments (p = 0.005), and screening of the specific visual skills of accommodative amplitude (p = 0.05), suppression (p = 0.015), and double vision (p <  0.001). CONCLUSION: Implementation of a standardized vision screen guideline improved the frequency of vision screens during occupational therapy evaluations in a pediatric inpatient rehabilitation unit. The use of standardized assessments may also improve the quality of vision screens by encouraging staff to complete more comprehensive vision screens, including screening more visual skills, and by prompting use of standardized assessments, which can improve accuracy of screening procedures.","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"24 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2023-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138967364","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":"Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study","authors":"Konrad M. Szymanski, Cyrus M. Adams, Mohammad Y. Alkawaldeh, Paul F. Austin, Robin M. Bowman, H. Castillo, Jonathan Castillo, David I. Chu, Carlos R. Estrada, Michele Fascelli, Dominic C. Frimberger, Patricio C. Gargollo, Dawud G. Hamdan, Sarah L. Hecht, Betsy Hopson, D. Husmann, Micah A. Jacobs, A. MacNeily, D. McLeod, Peter D. Metcalfe, T. Meyer, R. Misseri, Joseph O. O’Neil, A. Rensing, Jonathan C. Routh, K. Rove, K. Sawin, B. Schlomer, Isaac Shamblin, Rebecca L. Sherlock, G. Slobodov, Jennifer Stout, Stacy T. Tanaka, Dana A. Weiss, John S. Wiener, Hadley M. Wood, E. Yerkes, Jeffrey Blount","doi":"10.3233/prm-220086","DOIUrl":"https://doi.org/10.3233/prm-220086","url":null,"abstract":"PURPOSE: This study aimed to analyze organ system-based causes and non-organ system-based mechanisms of death (COD, MOD) in people with myelomeningocele (MMC), comparing urological to other COD. METHODS: A retrospective review was performed of 16 institutions in Canada/United States of non-random convenience sample of people with MMC (born > = 1972) using non-parametric statistics. RESULTS: Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, and 53% in adulthood (documented COD: 74%). For 261 shunted individuals, leading COD were neurological (21%) and pulmonary (17%), and leading MOD were infections (34%, including shunt infections: 4%) and non-infectious shunt malfunctions (14%). For 32 unshunted individuals, leading COD were pulmonary (34%) and cardiovascular (13%), and leading MOD were infections (38%) and non-infectious pulmonary (16%). COD and MOD varied by shunt status and age (p < = 0.04), not ambulation or birthyear (p > = 0.16). Urology-related deaths (urosepsis, renal failure, hematuria, bladder perforation/cancer: 10%) were more likely in females (p = 0.01), independent of age, shunt, or ambulatory status (p > = 0.40). COD/MOD were independent of bladder augmentation (p= >0.11). Unexplained deaths while asleep (4%) were independent of age, shunt status, and epilepsy (p >= 0.47). CONCLUSION: COD varied by shunt status. Leading MOD were infectious. Urology-related deaths (10%) were independent of shunt status; 26% of COD were unknown. Life-long multidisciplinary care and accurate mortality documentation are needed.","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"118 9","pages":""},"PeriodicalIF":1.9,"publicationDate":"2023-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138590701","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":"Cecostomy tubes improve bowel continence for pediatric patients with spina bifida: A retrospective analysis of outcomes from a single clinic","authors":"Asma A. Taha, A. M. Eisen, Hana Q. Abdul Rahman, Kelsey E. Good, Kurt A. Freeman, Jennifer D. Kotzin, Margaret H. Wolf, N. Azar, Kelley R. Davis, J. C. Austin","doi":"10.3233/prm-220123","DOIUrl":"https://doi.org/10.3233/prm-220123","url":null,"abstract":"PURPOSE: Pediatric patients with spina bifida often experience neurogenic bowel dysfunction. Although cecostomy tubes could improve bowel continence, their effectiveness is not well established in this population. The aims of this study were to better understand the effectiveness of cecostomy tubes relative to other management strategies (between-subject) and to explore their effectiveness among patients who received these placements (within-subject). METHODS: Retrospective analysis of data from pediatric patients enrolled in a national spina bifida patient registry (n = 297) at a single multidisciplinary clinic was performed, covering visits between January 2014 –December 2021. Linear and ordinal mixed effect models (fixed and random effects) tested the influence of cecostomy status (no placement vs placement) and time (visits) on bowel continence while controlling for demographic and condition-specific covariates. RESULTS: Patients with cecostomy tubes had higher bowel continence compared to patients without placements (B = 0.695, 95% CI [0.333, 1.050]; AOR = 2.043, p = .007). Patients with cecostomy tubes had higher bowel continence after their placements compared to before (B = 0.834, 95% CI [0.142, 1.540]; AOR = 3.259, p = 0.011). CONCLUSION: Results indicate cecostomy tubes are effective for improving bowel continence in this pediatric population. Future research is needed to conduct risk analyses and determine the clinical significance of these effects.","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2023-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138590188","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":"Award announcements 2023.","authors":"Elaine L Pico","doi":"10.3233/PRM-239019","DOIUrl":"10.3233/PRM-239019","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 4","pages":"683"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139074402","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":"From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations.","authors":"Jonathan Castillo, Judy K Thibadeau, Tim Brei, Heidi Castillo","doi":"10.3233/PRM-239020","DOIUrl":"10.3233/PRM-239020","url":null,"abstract":"<p><p>Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational projects, such as The Lifespan Bowel Management Protocol, and social interventions taught through the American Academy of Pediatrics' Spina Bifida Transition ECHO. Through this open access issue, work by colleagues in Ethiopia, the Nordic countries, and Switzerland, as well as among other transnational populations is highlighted. The development of the Spina Bifida Global Learning Collaborative is also showcased, representing a training initiative across four continents. Correspondingly in this issue, JPRM published an update to the Transition Guidelines for the Care of People with Spina Bifida. The clinical guidelines are a product of the SBA Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention. While colleagues across the globe remain committed to native, immigrant, and displaced populations of individuals affected by SB, JPRM will continue to distribute premier research in multidisciplinary care, education, and advocacy.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 4","pages":"581-582"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789342/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139074403","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Six- and 12-month functional outcomes among patients with confirmed acute flaccid myelitis (AFM) with onset in 2018, United States.","authors":"Adriana S Lopez, Sarah Kidd, Eileen Yee, Kathleen Dooling, Janell A Routh","doi":"10.3233/PRM-220054","DOIUrl":"10.3233/PRM-220054","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 2","pages":"391-400"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11019776/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9604624","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}