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Attitudes and practices of specialty physicians regarding the return to school process after pediatric acquired brain injury. 专科医生对儿童获得性脑损伤后返校过程的态度和做法。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-210130
Bethany L Johnson-Kerner, Kathleen Colao, Nathan K Evanson, J Michael Taylor

Purpose: More than 50,000 children are hospitalized yearly in the U.S. for acquired brain injury (ABI) with no established standards or protocols for school re-entry and limited resources for hospital-school communication. While ultimately the school has autonomy over curricula and services, specialty physicians were asked about their participation and perception of barriers in the school re-entry process.

Methods: Approximately 545 specialty physicians were sent an electronic survey.

Results: 84 responses (43% neurologists and 37% physiatrists) were obtained with a response rate of ∼15%. Thirty-five percent reported that specialty clinicians currently make the plan for school re-entry. The biggest challenge for school re-entry noted by physicians was cognitive difficulties (63%). The biggest gaps perceived by physicians were a lack of hospital-school liaisons to help design and implement a school re-entry plan (27%), schools' inability to implement a school re-entry plan (26%), and an evidence-based cognitive rehab curriculum (26%). Forty-seven percent of physicians reported that they did not have adequate medical personnel to support school re-entry. The most commonly used outcome measure was family satisfaction. Ideal outcome measures included satisfaction (33%) and formal assessment of quality of life (26%).

Conclusion: These data suggest that specialty physicians identify a lack of school liaisons in the medical setting as an important gap in hospital-school communication. Satisfaction and formal assessment of quality of life are meaningful outcomes for this provider group.

目的:美国每年有5万多名儿童因获得性脑损伤(ABI)住院治疗,但没有既定的重返校园标准或协议,医院与学校沟通的资源有限。虽然学校最终对课程和服务拥有自主权,但专科医生被问及他们在重返学校过程中的参与程度和对障碍的看法。方法:向大约545名专科医生发送了一份电子调查。结果:获得84个应答(43%的神经科医生和37%的物理科医生),应答率为~15%。35%的人报告说,专业临床医生目前正在制定重返校园的计划。医生指出,重新入学面临的最大挑战是认知困难(63%)。医生认为最大的差距是缺乏医院与学校的联系来帮助设计和实施重返校园计划(27%),学校无法实施重返学校计划(26%),以及循证认知康复课程(26%)。47%的医生报告说,他们没有足够的医务人员来支持重新入学。最常用的结果衡量标准是家庭满意度。理想的结果指标包括满意度(33%)和对生活质量的正式评估(26%)。结论:这些数据表明,专科医生认为,在医疗环境中缺乏学校联系是医院与学校沟通的一个重要差距。满意度和对生活质量的正式评估对这一提供者群体来说是有意义的结果。
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引用次数: 0
Medicine shouldn't be this hard: The intersection of physician moral injury and patient healthcare experience in pediatric complex care. 医学不应该这么难:在儿科复杂护理中,医生道德伤害和患者医疗经验的交叉点。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-230027
Erika Erlandson, Carrie Ramirez, Wendy Dean

Dr. Jay Neufeld's story in If I Betray These Words is a detailed account of one physician's catastrophic journey through moral injury when caring for pediatric patients with complex medical conditions [1]. Many clinicians may recognize Jay's journey in their own experiences, but what deserves parallel consideration are the journeys of patients and families when they are accompanied by physicians at risk of moral injury. This case study illustrates the tight link between drivers of physician moral injury and patients' negative healthcare experiences. These include (1) decisions directed by health insurance regulations and prior authorizations; (2) the electronic medical record (EMR); and (3) healthcare systems focused on revenue generation.

Jay Neufeld博士在《如果我怀疑这些话》中的故事详细描述了一位医生在照顾患有复杂疾病的儿科患者时经历的道德伤害的灾难性旅程[1]。许多临床医生可能在自己的经历中认识到周的旅程,但值得同时考虑的是,当患者和家人在有道德伤害风险的医生陪同下的旅程。这项案例研究说明了医生道德伤害的驱动因素与患者的负面医疗体验之间的紧密联系。其中包括(1)根据健康保险条例和事先授权作出的决定;(2) 电子病历(EMR);以及(3)注重创收的医疗保健系统。
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引用次数: 0
Open Topic. 打开主题。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01
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引用次数: 0
Feasibility of temperature monitoring smart socks in adolescents and young adults with spina bifida. 脊柱裂青少年体温监测智能袜的可行性。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-230030
Melissa A Bent, Abigail N Padilla, Sam P Wimmer, Kelleen Lopez, Veronica Beltran, Tishya A L Wren

Purpose: The purpose of the study was to determine if the use of continuous temperature monitoring smart socks is feasible in adolescents with spina bifida (SB) by obtaining user feedback on comfort.

Methods: Participants were provided temperature monitoring socks and a 4 G hub. Follow-up phone calls were performed to answer questions or discuss barriers. Sock temperatures were monitored throughout four weeks. Following sock wear, participants were asked to complete a satisfaction survey.

Results: Seventeen of the 33 participants enrolled (eight males, nine females) with a mean age of 14.8 years completed the study. Average sock wear was 8.0 hours per day for four weeks. The mean temperature was 83.4°F with a mean temperature differential between feet of -0.74°F (left-right). The duration of sock wear varied from 14.6 to 595.9 hours over the four-week period. Lastly, eleven participants (84.6%) reported that the socks were comfortable and very easy to put on.

Conclusion: Continuous temperature monitoring smart socks are an option for monitoring risk for developing pressure injuries in adolescents with SB. Future directions would include increasing sample size, obtaining normative data for temperature ranges in this population, and correlating to clinical outcomes.

目的:本研究旨在通过获取用户对舒适度的反馈,确定脊柱裂(SB)青少年使用连续体温监测智能袜是否可行:方法:向参与者提供体温监测袜和 4 G 集线器。方法:向参与者提供体温监测袜和 4 G 集线器,并通过后续电话回答问题或讨论障碍。对袜子的温度进行了为期四周的监测。穿袜子后,参与者被要求完成满意度调查:33 名参与者中有 17 人(8 男 9 女)完成了研究,他们的平均年龄为 14.8 岁。平均每天穿袜 8.0 小时,持续四周。平均气温为 83.4°F,双脚之间的平均温差为 -0.74°F(左右)。在四周的时间里,穿袜时间从 14.6 小时到 595.9 小时不等。最后,11 名参与者(84.6%)表示袜子穿着舒适,非常容易穿戴:连续体温监测智能袜是监测患有 SB 的青少年发生压力伤害风险的一种选择。未来的研究方向将包括增加样本量、获得该人群温度范围的标准数据以及与临床结果相关联。
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引用次数: 0
Abstracts of the 2023 World Congress on Spina Bifi da Research & Care - Urology. 2023年世界脊柱裂数据研究与护理泌尿外科大会摘要。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-239015
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引用次数: 0
Psychosocial and medical factors associated with intrathecal baclofen pump explants: A case series. 与鞘内巴氯芬泵移植相关的社会心理和医学因素:一个病例系列
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-210097
Fabiola Reyes, Whitney M Herge, Shelby L Cerza, Allen Savedra, Catherine E Thompson

Purpose: The goal of this retrospective chart review study was to explore factors that contributed to consideration of or actual pump explantation in pediatric patients with intrathecal baclofen (ITB) pumps.

Methods: Medical records of 30 patients with ITB pumps were reviewed. Quantitative data, including demographic, clinical, psychosocial, and service utilization variables were culled from the records. Qualitative data were collected from clinic visit notes, pump-related follow-up phone calls, and any pump-related emergency room visits.

Results: Of those reviewed, six underwent ITB pump explantation, and two considered explantation. Factors contributing to pump explantation or consideration of explantation included the following: postoperative infection, pump malfunction, non-adherence, anxiety/behavioral factors impacting the patient's tolerance of the pump, distance to the medical provider, frequency of required pump refill appointments, lack or perceived lack of intrathecal baclofen effect, and difficulty transitioning to adult care providers.

Conclusion: Due to the complex care regimen associated with ITB pumps and various psychosocial and logistical factors that impact treatment success, a standardized multidisciplinary pre-implantation education, screening, and assessment process should be developed. Such a process would ensure that patients/families receive appropriate education, including proactively identifying treatment barriers and potential complications, possibly minimizing dissatisfaction with treatment and the need for explantation.

目的:本回顾性图表回顾研究的目的是探讨在使用鞘内巴氯芬(ITB)泵的儿科患者中考虑或实际泵外植的因素。方法:回顾30例颅脑泵患者的病历资料。定量数据,包括人口统计、临床、社会心理和服务利用变量从记录中剔除。定性数据收集自门诊就诊记录、与泵相关的随访电话和任何与泵相关的急诊室就诊。结果:其中6例行体外移植,2例考虑体外移植。导致泵外植术或考虑泵外植术的因素包括:术后感染、泵故障、不依从性、影响患者对泵耐受性的焦虑/行为因素、与医疗提供者的距离、需要泵补充预约的频率、缺乏或感知缺乏鞘内巴氯芬效果,以及难以过渡到成人护理提供者。结论:由于与ITB泵相关的复杂护理方案以及影响治疗成功的各种社会心理和后勤因素,应制定标准化的多学科植入前教育,筛查和评估过程。这一过程将确保患者/家属接受适当的教育,包括主动识别治疗障碍和潜在的并发症,尽可能减少对治疗的不满和对手术的需要。
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引用次数: 0
Electrophysiological trajectories of concussion recovery: From acute to prolonged stages in late teenagers. 脑震荡恢复的电生理轨迹:从急性期到晚期青少年的长期阶段。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-210114
Mo Mortazavi, Francesca Arese Lucini, David Joffe, David S Oakley

Purpose: Numerous studies have reported electrophysiological differences between concussed and non-concussed groups, but few studies have systematically explored recovery trajectories from acute concussion to symptom recovery and the transition from acute concussion to prolonged phases. Questions remain about recovery prognosis and the extent to which symptom resolution coincides with injury resolution. This study therefore investigated the electrophysiological differences in recoveries between simple and complex concussion.

Methods: Student athletes with acute concussion from a previous study (19(2) years old) were tracked from pre-injury baseline, 24-48 hours after concussion, and through in-season recovery. The electroencephalography (EEG) with P300 evoked response trajectories from this acute study were compared to an age-matched population of 71 patients (18(2) years old) with prolonged post-concussive symptoms (PPCS), 61 (SD 31) days after concussion.

Results: Acute, return-to-play, and PPCS groups all experienced a significant deficit in P300 amplitude compared to the pre-injury baseline group. The PPCS group, however, had significantly different EEG spectral and coherence patterns from every other group.

Conclusion: These data suggest that while the evoked response potentials deficits of simple concussion may persist in more prolonged stages, there are certain EEG measures unique to PPCS. These metrics are readily accessible to clinicians and may provide useful parameters to help predict trajectories, characterize injury (phenotype), and track the course of injury.

目的:许多研究报告了脑震荡组和非脑震荡组之间的电生理差异,但很少有研究系统地探讨了从急性脑震荡到症状恢复以及从急性脑震荡过渡到长期阶段的恢复轨迹。有关恢复预后以及症状缓解与损伤缓解的吻合程度的问题依然存在。因此,本研究调查了简单脑震荡和复杂脑震荡恢复期的电生理差异:方法:对先前研究中患有急性脑震荡的学生运动员(19(2)岁)进行了从受伤前基线、脑震荡后 24-48 小时到赛季中恢复期的跟踪调查。将这项急性研究中的脑电图(EEG)和 P300 诱发反应轨迹与脑震荡后 61 天(标准偏差 31 天)、年龄匹配的 71 名脑震荡后症状(PPCS)延长期患者(18(2)岁)进行了比较:与受伤前基线组相比,急性期组、重返赛场组和 PPCS 组的 P300 波幅都出现了明显的缺陷。然而,PPCS 组的脑电图频谱和相干模式与其他各组均有显著不同:这些数据表明,虽然单纯脑震荡的诱发反应电位缺陷可能会持续较长时间,但 PPCS 有某些独特的脑电图测量指标。临床医生很容易获得这些指标,它们可提供有用的参数,帮助预测轨迹、描述损伤特征(表型)和跟踪损伤过程。
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引用次数: 0
Where words are powerless to express: Use of music in paediatric neurology. 语言无法表达的地方:音乐在儿科神经病学中的应用。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-200802
Anna K Szewczyk, Krystyna Mitosek-Szewczyk, Ewa Dworzańska

Music is an art form that strongly affects people and can elicit many different emotions at the same time, including happiness, anxiety, sadness, and even ecstasy. What is it about music that causes such a strong reaction from each of us? Music engages many senses, which in turn can produce a multiplicity of responses and help create more extensive neuronal connections, as well as influence behaviour through structural and functional changes in the brain. Music-based interventions as a therapeutic tool in rehabilitation are becoming more common. It is said that the impact of music on the human body is positive. However, what impact does music have on the young nervous system, especially the affected one? This review presents the advantages and disadvantages of the use of music in paediatric neurology to treat dyslexia, cerebral palsy, and stroke, among others. Potential negative impacts such as musicogenic epilepsy and hallucinations will be discussed.

音乐是一种强烈影响人们的艺术形式,可以同时引发许多不同的情绪,包括快乐,焦虑,悲伤,甚至狂喜。是什么让音乐引起了我们每个人如此强烈的反应?音乐涉及多种感官,从而产生多种反应,帮助建立更广泛的神经元连接,并通过大脑结构和功能的变化影响行为。以音乐为基础的干预作为康复治疗工具正变得越来越普遍。据说音乐对人体的影响是积极的。然而,音乐对年轻的神经系统,尤其是受影响的神经系统有什么影响呢?这篇综述介绍了在儿科神经学中使用音乐治疗阅读障碍、脑瘫和中风等疾病的利弊。潜在的负面影响,如音乐源性癫痫和幻觉将讨论。
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引用次数: 0
Obesity in ambulatory children with cerebral palsy in Turkey: A cross-sectional study. 土耳其脑瘫患儿肥胖:一项横断面研究。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-210093
Bilinc Dogruoz Karatekin, Gulnihal Kacar, Afitap Icagasioglu

Purpose: Obesity prevalence and the relationship between obesity and motor function in children with ambulatory cerebral palsy (CP) were investigated.

Methods: This was a cross-sectional study. The obesity profile of 75 children aged 2-18 years with ambulatory CP was investigated. GMFCS levels were recorded, and BMI was calculated using height and weight data and converted into Z-scores. Age- and gender-specific growth charts were used for children and adolescents.

Results: The mean BMI of the participants was 17.78, with an obesity rate of 18.67% and an overweight rate of 16%. Gross motor function was found to be associated with height, weight, and BMI (p < 0.05). No relationship was found between obesity + overweight and gender and CP subtype (p > 0.05).

Conclusion: Turkish children with CP had a higher rate of obesity compared to typically developing peers and also their counterparts in other countries. There is a need for studies to identify the causes of obesity and to develop effective intervention programs for prevention of it in children with CP.

目的:探讨动态脑瘫(CP)患儿的肥胖患病率及肥胖与运动功能的关系。方法:采用横断面研究。本文对75例2 ~ 18岁门诊CP患儿的肥胖情况进行了调查。记录GMFCS水平,使用身高和体重数据计算BMI并转换为z分数。儿童和青少年使用了特定年龄和性别的生长图表。结果:参与者的平均BMI为17.78,肥胖率为18.67%,超重率为16%。粗大运动功能与身高、体重和BMI相关(p < 0.05)。结论:与正常发育的同龄人和其他国家的同龄人相比,土耳其CP儿童的肥胖率更高。有必要进行研究,以确定肥胖的原因,并制定有效的干预方案,以预防儿童的肥胖。
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引用次数: 0
Abstracts of the 2023 World Congress on Spina Bifi da Research & Care - International Care. 2023 年世界脊柱裂研究与护理大会摘要--国际护理。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-239007
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引用次数: 0
期刊
Journal of pediatric rehabilitation medicine
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