Journal of pediatric rehabilitation medicine最新文献

{"title":"Abstracts of the 2023 World Congress on Spina Bifi da Research & Care - Transition.","authors":"","doi":"10.3233/PRM-239014","DOIUrl":"https://doi.org/10.3233/PRM-239014","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 s1","pages":"S97-S111"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9684220","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":"Abstracts of the 2023 World Congress on Spina Bifi da Research & Care - Orthopedics, Physical Therapy & Occupational Therapy.","authors":"","doi":"10.3233/PRM-239011","DOIUrl":"https://doi.org/10.3233/PRM-239011","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 s1","pages":"S69-S80"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9684226","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":"Efficacy of intrathecal morphine administration in pediatric patients undergoing selective dorsal rhizotomy.","authors":"Jared Pennington,&nbsp;Shawnelle Contini,&nbsp;Miraides Brown,&nbsp;Nupur Goel,&nbsp;Tsulee Chen","doi":"10.3233/PRM-220048","DOIUrl":"https://doi.org/10.3233/PRM-220048","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this study was to evaluate the effectiveness of intrathecal morphine following selective dorsal rhizotomy in pediatric patients previously diagnosed with cerebral palsy.</p><p><strong>Methods: </strong>This was a retrospective, cohort analysis over the course of four years. The analysis consisted of a treatment group which received intrathecal morphine (5 mcg/kg) injection and a control group that did not receive the injection prior to dural closure. All patients underwent multilevel laminectomies for selective dorsal rhizotomy at Akron Children's Hospital. The effectiveness of the treatment was measured by total dose of hydromorphone administered on patient-controlled analgesia (PCA), number of days on oral narcotics, and cumulative dose of oral narcotic.</p><p><strong>Results: </strong>Of the analyzed 15 pediatric patients, seven patients received intrathecal morphine injection while the other eight did not receive the treatment prior to dural closure. There was a difference of 1135 mcg in total PCA dose between the study group (3243 mcg) and the control group (4378 mcg). The total PCA dose based on weight was lower in the study group (163 mcg/kg) than in the control group (171 mcg/kg).</p><p><strong>Conclusion: </strong>Based on these findings, the administration of intrathecal morphine clinically reduces the opiate need in the first 96 hours post-operatively.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 1","pages":"109-114"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9685512","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":"Translation and preliminary validation of the Brazilian family resources scale in a sample of parents of children with congenital Zika virus syndrome.","authors":"Sarah Barker Ladd, Natalie A Williams, Pompéia Villachan-Lyra, Emmanuelle Chaves, Cody Hollist, Renata Trefiglio Mendes Gomes, Leopoldo Nelson F Barbosa","doi":"10.3233/PRM-220025","DOIUrl":"10.3233/PRM-220025","url":null,"abstract":"<p><strong>Purpose: </strong>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).</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 2","pages":"337-350"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9959726","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":"Global COVID-19 childhood disability data coordination: A collaborative initiative of the International Alliance of Academies of Childhood Disability.","authors":"Verónica Schiariti, Ana Carolina de Campos, Isabella Pessóta Sudati, Arnab K Seal, Priscilla E Springer, Heather Thomson, Susan Wamithi, Guorong Wei, Alicia Spittle, Bernadette Gillick","doi":"10.3233/PRM-220035","DOIUrl":"10.3233/PRM-220035","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 2","pages":"275-286"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9959728","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":"2023 updates to the spina bifida transition to adult care guidelines.","authors":"Ellen Fremion, Melissa Kaufman, Shubhra Mukherjee, Pamela Murphy, Kathryn Smith","doi":"10.3233/PRM-230052","DOIUrl":"10.3233/PRM-230052","url":null,"abstract":"<p><strong>Purpose: </strong>This article provides an update to the 2018 Spina Bifida Association's Transition to Adult Care Guidelines.</p><p><strong>Methods: </strong>A workgroup of topic experts was convened including authors from the initial guideline workgroup. The workgroup reviewed and updated the primary, secondary, and tertiary outcome goals, clinical questions, and guideline recommendations based on a literature review.</p><p><strong>Results: </strong>Twenty-two additional articles were identified from the literature search. Updated references included observational studies describing transition to adult care outcomes, transition care model initiatives, and a validated self-management assessment tool.</p><p><strong>Conclusion: </strong>Structured transition initiatives increase the likelihood of establishing with adult care, decrease acute care use for young adults with spina bifida, and have the potential to improve quality of life and optimize chronic condition management. However, there is still a need to implement structure transition practices more broadly for this population using these recommended guidelines.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 4","pages":"583-593"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789338/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139074400","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":"Motor function outcomes in children with open prenatal repair of Spina Bifida Aperta at 36-month follow-up: The Zurich cohort.","authors":"Brittany Brun, David A Wille, Sonja M Schauer, Ueli Moehrlen, Martin Meuli, Beatrice Latal, Beth Padden","doi":"10.3233/PRM-220096","DOIUrl":"10.3233/PRM-220096","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to describe outcomes of motor function with a special focus on ambulation ability at 36 months among children with open prenatal repair of spina bifida aperta (SB).</p><p><strong>Methods: </strong>A prospective cohort study was conducted including 87 patients with open prenatal repair of SB at the investigating center born between 2010 and 2018. Anatomic lesion level and motor function level in the neonatal period, as well as motor function level, ambulation status, and use of orthotics and assistive devices at 36 months were assessed.</p><p><strong>Results: </strong>At 36 months, ambulation was assessed in 86 children; of those, 86% (n = 74) were ambulating. Independent of ambulation, orthotics were worn in 81.6% (71/87) and assistive devices in 47.1% (41/87). Children with a lower lumbar or sacral motor function level were the first to reach independent ambulation and were more likely to ambulate at 36 months than children with higher motor function levels (p = < .001). The anatomic lesion level determined on the neonatal MRI correlated with ambulation status at 36 months (p = < 0.001).</p><p><strong>Conclusion: </strong>At 36 months, most children with open prenatal repair for SB showed favourable ambulation status. However, most still used assistive devices or orthotics. Anatomic lesion level on neonatal MRI, motor function level during the neonatal period, and motor function level at 36 months were associated with ambulation status at 36 months.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 4","pages":"595-604"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789323/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139074404","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":"Abstracts of the 2023 World Congress on Spina Bifi da Research & Care - Self-Management & Quality of Life.","authors":"","doi":"10.3233/PRM-239013","DOIUrl":"https://doi.org/10.3233/PRM-239013","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 s1","pages":"S87-S95"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9684221","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":"Abstracts of the 2023 World Congress on Spina Bifi da Research & Care - General Pediatrics.","authors":"","doi":"10.3233/PRM-239005","DOIUrl":"https://doi.org/10.3233/PRM-239005","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 s1","pages":"S11-S25"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9711660","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":"Psychometric properties of the English language version of the C-BiLLT evaluated in typically developing Canadian children.","authors":"Jael N Bootsma,&nbsp;Fiona Campbell,&nbsp;Dayle McCauley,&nbsp;Sarah Hopmans,&nbsp;Danijela Grahovac,&nbsp;B J Cunningham,&nbsp;Michelle Phoenix,&nbsp;Olaf Kraus de Camargo,&nbsp;Johanna Geytenbeek,&nbsp;Jan Willem Gorter","doi":"10.3233/PRM-210101","DOIUrl":"https://doi.org/10.3233/PRM-210101","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to 1) investigate the convergent and discriminant validity, internal consistency, and test-retest reliability of the Canadian English version of the Computer-Based instrument for Low motor Language Testing (C-BiLLT-CAN), and 2) explore feasibility of the C-BiLLT assessment for children with cerebral palsy (CP) and complex communication needs in the Canadian health care context.</p><p><strong>Methods: </strong>Eighty typically developing children between 1.5 and 8.5 years of age completed the C-BiLLT-CAN, the Peabody Picture Vocabulary Test-IV (PPVT-4), the receptive language sub-test of the New Reynell Developmental Language Scales (NRDLS), and/or the Raven's 2. Correlations between raw scores were calculated for estimates of convergent and discriminant validity. Internal consistency was calculated for all items and separately for items pertaining to vocabulary and grammar. To calculate the standard error of measurement (SEM) and intraclass correlation coefficient (ICC), 33 participants were re-tested with the C-BiLLT within three weeks. Feasibility was explored with nine participants with CP.</p><p><strong>Results: </strong>C-BiLLT-CAN's convergent validity was good to excellent (Spearman's rho > 0.78) and discriminant validity was higher than hypothesized (Spearman's rho > 0.8). Internal consistency (Cronbach's alpha = 0.96), test-retest reliability (ICC > 0.9), and measurement error (SEM < 5%) were excellent. The feasibility study could not be fully completed due to the COVID-19 pandemic. Preliminary data demonstrated some technical and practical barriers for using the C-BiLLT in children with CP in Canada.</p><p><strong>Conclusion: </strong>The C-BiLLT-CAN showed good to excellent psychometric properties in a sample of typically developing children, indicating that it is an adequate test for measuring language comprehension in English-speaking Canadian children. Further research is needed to investigate the feasibility of the C-BiLLT-CAN in children with CP.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"16 1","pages":"71-81"},"PeriodicalIF":1.9,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10116130/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10056072","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}