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JPRM cerebral palsy special issue 2023. JPRM 脑瘫特刊 2023。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-239002
Heakyung Kim, Rachel Byrne, Michael Green
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引用次数: 0
Reliability of the Wii Balance Board for measurement of steady state balance in children aged 6-9 years. Wii平衡板测量6-9岁儿童稳态平衡的可靠性。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-210106
Hemant Juneja, Christian Frandsen, Nina Odgaard Nielsen, Kim Larsen, Jeanette Praestegaard

Purpose: The Wii Balance Board (WBB) can be used for assessment of steady state balance (SSB), but its reliability has not been studied in children aged 6-9 years. This study aimed to determine the test-retest reliability of the WBB for measuring SSB in this population. A secondary aim was to determine the minimum detectable change (MDC) and standard error of measurement (SEM) of the WBB in children aged 6-9 years.

Methods: 52 children between 6-9 years of age participated. "One leg stand balance" was used to assess center of pressure velocity (COPV) and center of pressure area (COPA) on three occasions by the same tester. Two tests were conducted on the same day (Day 1) and the third test was performed on another day (Day 2), with a period of 5-13 days between the two test days. Intraclass correlation coefficient (ICC 3,1), SEMs, and MDC were calculated.

Results: Intra-day test-retest reliability of COPA was found to be good (ICC3,1 =0.86; 95% confidence interval [CI]: 0.75, 0.92) and that of COPV was also found to be good (ICC3,1 =0.87; 95% CI: 0.77, 0.92). Inter-day test-retest reliability was found to be good for COPA (ICC3,1 = 0.87; 95% CI: 0.75, 0.93) and COPV (ICC3,1 = 0.89; 95% CI: 0.81, 0.94). SEM for COPA in intra-day testing was 18.90 mm2 (15.78%), and in inter-day testing it was 16.44 mm2 (13.61%). SEM for COPV in intra-day testing was 1.12 mm/s (7.6%), and in inter-day testing it was 1.01 mm/s (6.9%). MDC for COPA in intra-day testing was 52.41mm2 (42.75%), and in inter-day testing was 45.58 mm2 (35.75%). MDC for COPV in intra-day testing was 3.11 mm/s (21.2%), and in inter-day testing it was 2.80 mm/s (18.9%).

Conclusion: The WBB has good test-retest reliability for assessing SSB of children between 6-9 years. COPA measurements appear to be less sensitive to clinical changes in SSB when compared to COPV. Assessment of validity of the WBB in this age group is recommended before it can be considered as a potential balance assessment tool in children.

目的:Wii平衡板(WBB)可用于评估稳态平衡(SSB),但其在6-9岁儿童中的可靠性尚未研究。本研究旨在确定WBB在该人群中测量SSB的重测信度。第二个目的是确定6-9岁儿童WBB的最小可检测变化(MDC)和测量标准误差(SEM)。方法:52名6-9岁儿童参与。采用“单腿站立平衡法”对压力中心速度(COPV)和压力中心面积(COPA)进行了三次评估。在同一天(第1天)进行两次试验,在另一天(第2天)进行第三次试验,两次试验之间间隔5-13天。计算类内相关系数(ICC 3,1)、sem和MDC。结果:COPA的日内重测信度较好(ICC3,1 =0.86;95%可信区间[CI]: 0.75, 0.92), COPV的预后也较好(ICC3,1 =0.87;95% ci: 0.77, 0.92)。COPA的日间重测信度较好(ICC3,1 = 0.87;95% CI: 0.75, 0.93)和COPV (ICC3,1 = 0.89;95% ci: 0.81, 0.94)。白天检测时COPA的SEM为18.90 mm2(15.78%),白天检测时为16.44 mm2(13.61%)。白天检测时,COPV的扫描电镜为1.12 mm/s(7.6%),白天检测时为1.01 mm/s(6.9%)。COPA在日间检测的MDC为52.41mm2(42.75%),日间检测的MDC为45.58 mm2(35.75%)。COPV在日间检测中的MDC为3.11 mm/s(21.2%),在日间检测中的MDC为2.80 mm/s(18.9%)。结论:WBB评价6 ~ 9岁儿童SSB具有较好的重测信度。与COPV相比,COPA测量对SSB的临床变化似乎不太敏感。在将WBB作为儿童潜在的平衡评估工具之前,建议对该年龄组的WBB进行效度评估。
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引用次数: 0
Frequency, facilitators, and barriers for range of motion to prevent shoulder contracture in brachial plexus birth injury: A pilot study. 为预防臂丛神经产伤患者肩部挛缩而进行活动幅度训练的频率、促进因素和障碍:一项试点研究。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-220090
Jennifer Wingrat, Matthew J Elrick

Purpose: This pilot study investigated the efficacy of passive range of motion (PROM) during the first year of life to prevent development of shoulder contractures in children with brachial plexus birth injury (BPBI) and identified facilitators and barriers to caregiver adherence with daily PROM.

Methods: Five caregivers of children with upper trunk BPBI participated in retrospective interviews about the frequency with which they performed PROM during their child's first year of life including facilitators and barriers to daily adherence. Medical records were reviewed for documentation of caregiver-reported adherence and documented evidence of shoulder contracture by age one.

Results: Three of the five children had documented shoulder contractures; all three had delayed initiation or inconsistent PROM in the first year of life. Two without shoulder contractures received consistent PROM throughout the first year of life. Making PROM part of the daily routine was a facilitator to adherence while family contextual factors were barriers.

Conclusion: Absence of shoulder contracture may be related to consistent PROM throughout the first year of life; decreased frequency of PROM after the first month of life did not increase the risk of shoulder contracture. Consideration of family routines and context may facilitate adherence with PROM.

目的:本试验性研究调查了臂丛神经先天性损伤(BPBI)患儿出生后第一年内被动活动范围(PROM)对预防肩部挛缩发展的有效性,并确定了护理人员坚持每天进行PROM的促进因素和障碍:五名上躯干 BPBI 患儿的护理人员参加了回顾性访谈,了解他们在患儿出生后第一年内进行 PROM 的频率,包括坚持每天进行 PROM 的促进因素和障碍。我们还查阅了医疗记录,以了解护理人员报告的坚持情况和一岁前肩部挛缩的记录证据:结果:五名儿童中有三名患有有记录的肩部挛缩,这三名儿童在出生后的第一年里都延迟了PROM的启动或PROM不一致。两名没有肩部挛缩的患儿在出生后的第一年里一直接受了PROM。将PROM作为日常生活的一部分是坚持PROM的促进因素,而家庭环境因素则是障碍:没有肩部挛缩可能与在婴儿出生后的第一年中始终坚持实施PROM有关;婴儿出生一个月后减少实施PROM的频率并不会增加肩部挛缩的风险。对家庭常规和环境的考虑可能有助于坚持实施PROM。
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引用次数: 0
Editorial. 社论。
IF 1.9 Q4 PEDIATRICS Pub Date : 2023-01-01 DOI: 10.3233/PRM-230026
This issue of JPRM contains “Guidance to best tools and practices for systematic reviews”. This paper is being published simultaneously in multiple journals. It aims to provide a reference point for review authors, peer reviewers, and editors to improve their understanding of the rationale behind current methodological expectations of a systematic review, with or without meta-analysis. Systematic reviews are important across biomedicine but very often they are subpar and not trustworthy; this has been documented across diverse medical subspecialties including pediatric rehabilitation. An example is a recent study that found low or very low confidence in almost all recent systematic reviews reporting on interventions for children with cerebral palsy [1]. As editors and peer reviewers of various journals, we find the ongoing poor compliance of authors and journal editors with review expectations discouraging. We sought to identify practical solutions but discovered that, while guidelines for sound conduct and reporting of systematic reviews are available from many sources, they do not appear to be routinely and/or widely applied. The more we searched for comprehensive guidance in a single place, the more we realized we might have to create it. In our Guidance, multiple tables and figures summarize key concepts and wherever possible link to additional resources. The extensive references allow interested readers to locate and parse the original work on which our guidance is based. The Concise Guide is a quick reference to the multiple tools currently recommended for development, reporting, and critical appraisal of a systematic review. We emphasize the difference between a reporting guideline (PRISMA 2020) [2] and a methodology which will guide the requirements for specific types of reviews. We provide recommendations for specific tools for risk of bias evaluation for specific types of literature. We emphasize that tools that evaluate systematic reviews such as AMSTAR 2 [3] and ROBIS [4] are also not methodologies, but instead inform authors on ways their final work might be reviewed or judged by others. One of the six sections of the Guidance focuses on assessment of the overall certainty of evidence of a body of literature. This is a relatively new requirement of systematic reviews per PRISMA 2020; it involves a number of core concepts and processes for which we recommend the GRADE approach [5]. Authors and peer reviewers may take advantage of extensive references on GRADE along with their online resources and workshops. In the GRADE framework, the overall certainty of the evidence rating is the culmination of a systematic review. We caution authors, however, that systematic reviews should not superficially provide facile recommendations for or against interventions, but instead summarize the evidence available to answer the research questions posed. This Guidance is intended to improve common systematic review problems, but we also hope it provide
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引用次数: 0
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
期刊
Journal of pediatric rehabilitation medicine
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