Journal of pediatric rehabilitation medicine最新文献

{"title":"Screening colonoscopy utilization among adults living with spina bifida.","authors":"Hiren V Patel, Debbie Goldberg, Isabel Elaine Allen, Hillary L Copp, Lindsay A Hampson","doi":"10.1177/18758894261501063","DOIUrl":"10.1177/18758894261501063","url":null,"abstract":"<p><p>PurposeSpina bifida (SB) is the most common neural tube defect, often accompanied by neurogenic bladder and bowel dysfunction, hydrocephalus, and orthopedic sequelae. As life expectancy increases for individuals with SB, understanding disparities in healthcare utilization becomes crucial. This study examined colorectal cancer (CRC) screening colonoscopy utilization rates among adults living with SB.MethodUsing the California Health Care Access and Information database (2005-2017), a matched control group was established to compare colonoscopy utilization. Multivariable logistic regression analysis was performed to identify predictors of screening colonoscopy utilization.ResultsAmong individuals aged ≥50 years, 9.5% of those living with SB underwent screening colonoscopy compared to 13.0% of matched controls. After adjustment, SB was independently associated with lower odds of screening colonoscopy (OR 0.84, 95% CI 0.76-0.93).ConclusionFindings underscore the need for targeted interventions to improve CRC screening accessibility for this vulnerable population. Addressing structural barriers and enhancing patient-centered approaches may improve preventative care delivery and long-term health outcomes in individuals with SB.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894261501063"},"PeriodicalIF":1.0,"publicationDate":"2026-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149215839","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":"Provider assessment of caregiver reliability in preparation for intrathecal baclofen use in pediatric conditions.","authors":"Sruthi P Thomas, Jacqueline Buck, Tappan O'Reilly, Cameron Macdonald, Marina Ma, Kimberly E Sawyer","doi":"10.1177/18758894261490635","DOIUrl":"10.1177/18758894261490635","url":null,"abstract":"<p><p>PurposeThis qualitative study explored how physicians assess caregiver reliability when determining eligibility for intrathecal baclofen (ITB) therapy in non-ambulatory children with cerebral palsy (CP) and how barriers can be surmounted. Caregiver reliability is critical for patient safety and treatment success.MethodsTwenty-two providers across five pediatric specialties were interviewed, focusing on decision-making regarding ITB in children with CP characterized as Gross Motor Function Classification System IV-V. A conventional content analysis approach was employed, with codes developed inductively by a multidisciplinary team.ResultsProviders consistently cited caregiver reliability as a key factor in determining ITB eligibility. Reliability was often inferred from proxies such as geographic distance to care, social situation, and socioeconomic status. Providers acknowledged relying on \"gut instinct\" in the absence of standardized assessments. Suggested solutions to mitigate barriers included use of home health agencies, integration of social workers, and caregiver education programs.ConclusionWhile ITB can greatly benefit children with CP, its success hinges on caregiver reliability. Providers often use subjective or indirect indicators in their assessments, raising concerns for bias and inequitable access. A standardized, multidisciplinary evaluation process, such as the one proposed here, could improve fairness and outcomes in ITB patient selection. Future research should identify objective, evidence-based indicators of caregiver reliability.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894261490635"},"PeriodicalIF":1.0,"publicationDate":"2026-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13570951/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148944950","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":"Profile of individuals with full-scale intelligence quotient (FSIQ) scores in the National Spina Bifida Patient Registry (NSBPR).","authors":"Heidi Castillo, Sophia Drewry, Amy Heffelfinger, Jennifer T Queally, Kurt A Freeman, Vanessa Avemil, Richard Adams, Pamela Murphy, Kathryn Smith, Audrey Roach, Gregory Heuer, William Walker, Jonathan Castillo, Catharine Riley","doi":"10.1177/18758894261485648","DOIUrl":"10.1177/18758894261485648","url":null,"abstract":"<p><p>PurposeAlthough intelligence quotient (IQ) testing can help identify cognitive issues, data on IQ testing in the spina bifida (SB) population is limited and difficult to collect. This study aimed to identify factors influencing IQ test reporting among individuals in the National Spina Bifida Patient Registry (NSBPR).MethodsA descriptive analysis of 1,017 individuals aged 4 to 22 years from five NSBPR clinics was conducted. Characteristics of participants with a full-scale intelligence quotient (FSIQ) score (n=435) were compared to those without (n=582). Multivariable logistic regression was used to calculate odds ratios (ORs) and 95% confidence intervals (CIs) to determine the likelihood of having an FSIQ score, adjusting for sex, race, ethnicity, insurance status, functional level of lesion, and clinic.ResultsIndividuals who received full-time (OR=1.83, 95% CI: 1.16, 2.88) or some (OR=1.97, 95% CI: 1.38, 2.82) academic accommodations were more likely to have an FSIQ score. The mean age at IQ testing was 9.7 years (SD: 4.0), and mean FSIQ score was 81.3 (SD: 16.9).ConclusionHistory of academic accommodation was associated with having FSIQ scores. Average FSIQ score was lower than the normative population, highlighting the need for broader testing and care among people with SB.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894261485648"},"PeriodicalIF":1.0,"publicationDate":"2026-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13525100/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148850741","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":"Parents of youth and young adults with intellectual and developmental disabilities: Barriers experienced during transition.","authors":"Christine Bottrell Mirzaian, Rowan Smith, Cecily L Betz","doi":"10.1177/18758894261476176","DOIUrl":"10.1177/18758894261476176","url":null,"abstract":"<p><p>PurposeThe purpose of this study was to explore the experiences of parents of youth and young adults with intellectual and developmental disabilities who have undergone the transition from pediatric to adult healthcare as well as community-based transition and adult-focused services to better understand the barriers faced when individuals transition.MethodsEleven parents were recruited via email flyers and research information sheets, which were distributed to parent support/disability advocacy groups that are community partners of the Children's Hospital Los Angeles University Center for Excellence in Developmental Disabilities. The study interview guide consisted of 11 open-ended questions. The questions were designed to explore experiences with their youth and young adults' health care transition experience. Question items pertaining to barriers (five questions) with community-based services identified during the transition process are reported in this paper. All interviews were conducted via phone, audio-recorded, and transcribed.ResultsAnalysis of the data generated four major themes with subthemes. The day programs theme consisted of four subthemes: a) do not know what programs are available; b) lack of staffing; c) day program not appropriate; and d) waitlist. The education theme included four subthemes: a) no transition support provided; b) transition support not adequate; c) vocational training inadequate or not available; and d) need for adult supervision. The employment barrier theme contained three subthemes: a) loss of benefits; b) transition support not provided; and c) lack of accommodations or lack of options. The independent living barrier was composed of six subthemes: a) lack of resources; b) public benefits take a long time; c) self-determination services still inadequate; d) no transportation available; e) need to know to ask for services; and f) challenges pertaining to conservatorship.ConclusionThe findings revealed parents encountered numerous barriers to assisting their youth and young adults in assessing educational, employment, and community living services. The analysis supports the findings from previous studies and provides new insights and understanding.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894261476176"},"PeriodicalIF":1.0,"publicationDate":"2026-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13451400/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148685123","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":"Retrospective analysis of temporalis muscle thickness as a biomarker of functional level in adults with cerebral palsy.","authors":"Hyun Iee Shin, Rajashree Srinivasan, Saylee Dhamdhere, Annie Abraham, Heakyung Kim","doi":"10.1177/18758894261476165","DOIUrl":"10.1177/18758894261476165","url":null,"abstract":"<p><p>This retrospective cohort study investigated the association between temporalis muscle thickness (TMT) and functional level in adults with cerebral palsy. TMT is a non-invasive radiographic measure that can be measured from brain magnetic resonance imaging (MRI) scans and used as a surrogate marker for sarcopenia to reflect whole body skeletal muscle mass. Adults with cerebral palsy (CP) are at increased risk of functional decline and sarcopenia. TMT has emerged as a potential biomarker of global muscle mass and nutritional status; however, its clinical relevance to functional mobility in adults with CP remains unclear. This study sought to investigate the association between TMT and ambulatory function in adults with CP. This retrospective cross-sectional study included adults with CP who underwent brain MRI. TMT was measured bilaterally and averaged. Ambulatory function and past medical histories were extracted from medical records. A total of 140 adults with CP were included. In multivariable analysis, greater TMT was independently associated with higher odds of ambulatory function (adjusted OR 1.31, p=0.037). Tube feeding was significantly associated with lower odds of being ambulatory (adjusted OR 0.13, p=0.016). TMT measured on routine brain MRI was independently associated with ambulatory function in adults with CP. TMT may provide complementary information to established clinical classifications.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894261476165"},"PeriodicalIF":1.0,"publicationDate":"2026-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438326/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148669796","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":"Disability education in pediatric rehabilitation medicine physicians: A survey study.","authors":"Rebecca Caine, Caitlin Chicoine, Ashlee Bolger","doi":"10.1177/18758894261439983","DOIUrl":"10.1177/18758894261439983","url":null,"abstract":"<p><p>PurposeThis study aimed to assess pediatric rehabilitation medicine (PRM) physicians' experiences with disability education and opinions regarding a structured curriculum during graduate medical education.MethodsThis was a mixed-methods, descriptive survey study of current PRM physicians including PRM attendings, PRM fellows, and Pediatrics/Physical Medicine and Rehabilitation residents. Respondents completed an electronic survey via REDCap. Survey topics included prior disability education, current institutional disability education, and future development of formal disability education. Responses were de-identified. Data was analyzed with descriptive statistics and thematic analysis.ResultsSixty-five PRM physicians completed the survey. Four themes emerged to describe disability education of PRM physicians: 1) There is a lack of structured disability education, 2) PRM physicians are leaders in caring for children with disabilities and should receive formal education, 3) Patient-centered experiences are considered a key part of the disability curricula, 4) Disability education can aid PRM physicians in advocacy.ConclusionCurrent disability educational experiences are variable amongst PRM physicians, and there is no standardized approach. The majority of PRM physicians surveyed in this study perceived current disability education practices as inadequate and were in favor of a formal curriculum.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"250-258"},"PeriodicalIF":1.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438580/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147633603","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":"Home-based exercise training in boys with Duchenne muscular dystrophy: A 12-month intervention study.","authors":"Stian Hammer, Maria Vollsæter, Michel Toussaint, Ola Drange Røksund, Guri Brekke, Bjørge Herman Hansen, Haakon Krisitian Kvidaland, Lars Peder Bovim, Roy Miodini Nilsen, Tiina Andersen","doi":"10.1177/18758894261446029","DOIUrl":"10.1177/18758894261446029","url":null,"abstract":"<p><p>PurposeDuchenne muscular dystrophy (DMD) is a progressive X-linked neuromuscular disorder that reduces physical activity (PA) levels and leads to early loss of ambulation. The World Health Organization recommends promoting daily PA for children with disabilities. The primary aim of this study was to assess changes in PA level, physical function, and quality of life (QoL) after one year of a home-based exercise program in boys with DMD. Secondarily, it aimed to evaluate the suitability and safety of the exercise program for this patient group.MethodsIn this prospective longitudinal intervention study, 12 boys with DMD (ambulatory and non-ambulatory) participated in an individually tailored program combining strength and endurance training three times per week for one year. Another 11 boys with DMD served as a non-intervention comparison group. PA-levels were monitored using accelerometery. Secondary outcomes included upper-limb function, lung function, grip strength, endurance, and health-related QoL.ResultsLight and moderate-to-vigorous PA-levels increased in the intervention group but declined in the non-intervention group. Sedentary time increased in both groups. No adverse events were related to the intervention. While upper-limb function declined, other measures remained stable, with a small improvement in QoL.ConclusionHome-based, moderate-intensity exercise appears to be beneficial and safe, and may sustain PA-levels, functional abilities, and QoL in boys with DMD.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"217-230"},"PeriodicalIF":1.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13442673/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147868827","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":"Retraction: \"Advanced skeletal maturity in children and adolescents with myelomeningocele\".","authors":"","doi":"10.1177/18758894261445242","DOIUrl":"10.1177/18758894261445242","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"300"},"PeriodicalIF":1.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438700/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147948641","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":"Impact of optimized AFOs on functional outcomes in children with spastic cerebral palsy.","authors":"Teresa Long Pierce, Alyssa LaForme Fiss, Mark Geil, Karl Barner","doi":"10.1177/18758894261439984","DOIUrl":"10.1177/18758894261439984","url":null,"abstract":"<p><p>PurposeThis study aimed to compare the immediate functional impact of wearing ankle foot orthoses (AFOs) designed using the Optimal Segment Kinematics and Alignment approach to Rehabilitation (OSKAR method) versus wearing standard ankle foot orthosis (AFO)-footwear in children with spastic diplegic cerebral palsy.MethodsTen participants, ages seven to 13 years, from local pediatric clinics in a large suburban area participated in the study. Each participant wore both types of orthoses in a randomized order. This was determined by participants choosing a sealed envelope containing a sticker indicating which orthosis to be worn for the first data collection. Participants were assessed using three functional outcome measures: 1) the Pediatric Balance Scale (PBS), 2) Standardized Walking Obstacle Course, and 3) the Six-Minute Walk Test. Non-parametric Wilcoxon signed rank tests were used to compare outcome scores between the two conditions.ResultsTotal scores on the PBS were significantly higher when wearing the OSKAR AFO-footwear combinations (AFOFCs) (<i>median</i> = 50.50) versus standard AFOFCs (<i>median</i> = 47.00), <i>T</i> = 26.50, <i>p</i> = 0.034, <i>r</i> = 0.95, but all other immediate functional scores were comparable between conditions.ConclusionsAFOFCs designed using the OSKAR method may improve functional balance and should be considered when determining the orthotic prescription. These exploratory findings emphasize the need for further investigation of the effectiveness of OSKAR AFOFCs in children with spastic diplegic cerebral palsy (CP).</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"231-242"},"PeriodicalIF":1.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13443341/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147774460","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":"Atypical baclofen pump catheter dislodgement in spastic cerebral palsy - A case report.","authors":"Alex Landau, Kevin Batti, Tejas Shah, Andrew Kobets, Yuxi Chen","doi":"10.1177/18758894261454112","DOIUrl":"10.1177/18758894261454112","url":null,"abstract":"<p><p>Case DescriptionA 16-year-old male with spastic quadriparesis secondary to cerebral palsy underwent baclofen pump placement in August 2024. During a routine refill in September 2025, a hard, non-mobile bump was noted over the pump's central port. Ultrasound revealed low acoustic density material with tubelike structures at the site. Pediatric neurosurgery suspected catheter dislodgement, and the refill was deferred. Surgery two days later revealed that the pump tubing had migrated ventrally and calcified near the refill port, though the pump remained well-secured. Scar tissue was excised, and the tubing was repositioned behind the pump.DiscussionIt is estimated that 80-92% of patients diagnosed with cerebral palsy are affected by spasticity. Baclofen pumps are used when conservative treatments (e.g., bracing, therapy, oral antispasmodics, botulinum toxin) fail and require strict monitoring to ensure proper function. This case demonstrates an atypical baclofen pump catheter migration, where suspected dislodgement prevented the refill process, requiring surgical intervention. It underscores the importance of meticulous physical examination, ultrasound evaluation, and clinical judgment to prevent accidental catheter puncture during refills.ConclusionsRoutine follow-up with established care teams is essential for early detection of baclofen pump catheter dislodgement and to ensure proper positioning and function.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"293-297"},"PeriodicalIF":1.0,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13438788/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148391029","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}