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Erratum to: 2023 updates to the spina bifida transition to adult care guidelines. 勘误:脊柱裂过渡到成人护理指南的 2023 年更新。
IF 1.9 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-249001
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引用次数: 0
Clinical feeding assessment: An effective screening test to predict aspiration in children in low resource settings. 临床喂养评估:在资源匮乏的环境中预测儿童误吸的有效筛查测试。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-220052
Vijeyta Dahiya, Naina Picardo, Ramanadham Thejesh, Mary John, Ajoy Mathew Varghese

Objective: Diagnosis and management of swallowing problems in children is crucial for improvement of their health status and quality of life. This study aimed to determine the accuracy of clinical feeding assessment (CFA) as a screening test to detect aspiration in children using fibreoptic endoscopic evaluation of swallowing (FEES) as the gold standard.

Methods: A prospective study of 80 children aged below 16 years who were referred to a paediatric otolaryngology clinic for swallowing complaints was completed from 2019 to 2020. Swallowing was assessed by both CFA and FEES. Presence of any one of the following symptoms was considered positive for aspiration in CFA: cough, wet vocal quality, and respiratory distress. Aspiration on FEES was measured using the Penetration Aspiration Scale. The clinical predictors of aspiration were analysed.

Results: The majority of the children (78.8%) had an associated neurological condition, with cerebral palsy being the most common. CFA had a sensitivity ranging from 80% to 100% and a specificity ranging from 68% to 79% for predicting true aspiration for different food consistencies. The significant risk factors predicting aspiration (p value <0.05) were history of prior intubation (p = 0.009), history of nasal regurgitation (p = 0.002) and spasticity on examination (p = 0.043).

Conclusion: This study showed that CFA can be used as a screening test in evaluation of paediatric dysphagia. In those with negative CFA, the chances of aspiration are less while those with positive CFA need further evaluation. In addition, the availability and cost-effectiveness of the test make it a good tool for screening aspiration in low-resource settings.

目的:儿童吞咽问题的诊断和治疗对改善他们的健康状况和生活质量至关重要。本研究旨在确定临床进食评估(CFA)的准确性,该评估是一种筛查测试,以检测儿童的误吸,使用光纤内窥镜吞咽评估(FEES)作为金标准。方法:2019年至2020年,完成了一项针对80名16岁以下儿童的前瞻性研究,这些儿童因吞咽问题被转诊至儿科耳鼻喉科诊所。吞咽通过CFA和FEES进行评估。在CFA中,出现以下任何一种症状都被认为是吸入阳性:咳嗽、声音潮湿和呼吸窘迫。FEES上的吸气量使用渗透吸气量表进行测量。分析了误吸的临床预测因素。结果:大多数儿童(78.8%)有相关的神经系统疾病,其中脑瘫最为常见。CFA在预测不同食物稠度的真实抽吸时的灵敏度在80%至100%之间,特异性在68%至79%之间。预测误吸的重要危险因素(p值结论:本研究表明,CFA可作为评估儿童吞咽困难的筛查测试。在CFA阴性的患者中,误吸的机会较小,而CFA阳性的患者需要进一步评估。此外,该测试的可用性和成本效益使其成为在低资源环境中筛查误吸的良好工具。
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引用次数: 0
Medical delivery without representation?: Examining disability representation within the healthcare community. 没有代表的医疗服务?研究医疗界中的残疾人代表。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-240013
Justin Ramsey, Christopher Raffi Najarian

Individuals with disabilities comprise approximately 13% of the overall population. This editorial explores recent events that may involve ableism. The recent COVID pandemic created a rapid need and pressure to develop ventilator allotment policies. Many concluded several state policies were discriminatory in nature toward persons with disabilities (PWD). Lack of disability representation in medical fields may contribute to such discrimination within state and hospital medical policies. The underrepresented numbers of PWD in medical fields are explored. We conclude that improved education for all medical providers is needed. Possible strategies for improving healthcare representation and delivery within the United States are discussed.

残疾人约占总人口的 13%。这篇社论探讨了近期可能涉及能力歧视的事件。最近的 COVID 大流行迅速产生了制定呼吸机分配政策的需求和压力。许多人认为,一些州的政策具有歧视残疾人(PWD)的性质。医疗领域缺乏残疾人代表可能会导致州和医院医疗政策中的歧视。我们探讨了残疾人在医学领域代表性不足的问题。我们的结论是,需要加强对所有医疗服务提供者的教育。我们还讨论了改善美国医疗保健代表性和服务的可能策略。
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引用次数: 0
Outcomes following intensive day rehabilitation for young people in Western Australia. 西澳大利亚州青少年日间强化康复后的成果。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-220102
Irwin Gill, Sue-Anne Davidson, Paul G Stevenson, Rae Robinson, Dayna Pool, Jane Valentine

Objective: Intensive rehabilitation aims to improve and maintain functioning in young people who experience disability due to illness or injury. Day rehabilitation may have advantages for families and healthcare systems over inpatient models of rehabilitation.

Methods: This study evaluated the goals and outcomes of a cohort of young people in Western Australia who attended a specialist intensive day rehabilitation programme ("iRehab") at Perth Children's Hospital. Analysis of the iRehab service database was performed. Rehabilitation goals and outcomes were recorded as per the Canadian Occupational Performance Measure (COPM), Children's Functional Independence Measure (WeeFIM), and Goal Attainment Scale (GAS).

Results: There were 586 iRehab admissions between August 11, 2011, and December 31, 2018. Admissions were divided by diagnosis: Cerebral Palsy (228, 38.5%), Acquired Brain Injury (125, 21.3%), Spinal Cord Disorders (91, 15.5%), and Other (141, 24.2%). Mean COPM Performance increased by 2.78 points from admission to discharge (95% CI 2.58 to 2.98, p < 0.001). Mean COPM Satisfaction was 3.29 points higher at discharge than admission (95% CI 3.07 to 3.51, p < 0.001). Mean total WeeFIM score improved by 6.51 points between admission and discharge (95% CI 5.56 to 7.45, p < 0.001), and by 3.33 additional points by six months post discharge (95% CI 2.14 to 4.53, p < 0.001). Mean GAS T-scores increased by 27.85 (95% CI 26.73 to 28.97, p < 0.001) from admission to discharge, and by 29.64 (95% CI 28.26 to 31.02, p < 0.001) from admission to six months post discharge, representing improvement consistent with team expectations.

Conclusion: This study describes a model by which intensive rehabilitation can be delivered in a day rehabilitation setting. A diverse population of young people who experienced disability achieved significant improvements in occupational performance, independence, and goal attainment after accessing intensive day rehabilitation. Improvements were measured in all diagnostic subgroups and were maintained six months after discharge.

目的:强化康复旨在改善和维持因病或因伤致残的青少年的功能。与住院康复模式相比,日间康复可能对家庭和医疗保健系统有好处:本研究对西澳大利亚州一批参加珀斯儿童医院日间强化康复专科项目("iRehab")的青少年的目标和结果进行了评估。研究人员对 iRehab 服务数据库进行了分析。康复目标和结果按照加拿大职业表现测量法(COPM)、儿童功能独立性测量法(WeeFIM)和目标达成量表(GAS)进行记录:2011年8月11日至2018年12月31日期间,共有586例iRehab入院。入院患者按诊断划分为脑瘫(228 人,38.5%)、获得性脑损伤(125 人,21.3%)、脊髓障碍(91 人,15.5%)和其他(141 人,24.2%)。从入院到出院,平均 COPM 表现提高了 2.78 分(95% CI 2.58 至 2.98,p < 0.001)。平均 COPM 满意度在出院时比入院时高 3.29 分(95% CI 3.07 至 3.51,p < 0.001)。入院至出院期间,WeeFIM平均总分提高了6.51分(95% CI为5.56至7.45,p <0.001),出院后六个月又提高了3.33分(95% CI为2.14至4.53,p <0.001)。从入院到出院,平均 GAS T 分数提高了 27.85 分(95% CI 26.73 至 28.97,p < 0.001),从入院到出院后六个月,平均 GAS T 分数提高了 29.64 分(95% CI 28.26 至 31.02,p < 0.001),这些改善符合团队的预期:本研究描述了一种在日间康复环境中提供强化康复治疗的模式。不同群体的残疾青少年在接受日间强化康复治疗后,在职业表现、独立性和目标实现方面都取得了显著改善。在所有诊断分组中都测量到了改善情况,并且在出院六个月后仍能保持。
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引用次数: 0
Qualitative feedback from caregivers in a multidisciplinary pediatric neuromuscular clinic. 多学科儿科神经肌肉诊所护理人员的定性反馈。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-230011
Skylar M Hess, Dorothy Adu-Amankwah, Cordelia R Elaiho, Liam R Butler, Sheena C Ranade, Brijen J Shah, Kristin Shadman, Robert Fields, Elaine P Lin

Objective: This study explored family satisfaction and perceived quality of care in a pediatric neuromuscular care clinic to assess the value of the multidisciplinary clinic (MDC) model in delivering coordinated care to children with neuromuscular disorders, such as cerebral palsy.

Methods: Caregivers of 22 patients were administered a qualitative survey assessing their perceptions of clinic efficiency, care coordination, and communication. Surveys were audio-recorded and transcribed. Thematic analysis was completed using both deductive and inductive methods.

Results: All caregivers reported that providers adequately communicated next steps in the patient's care, and most reported high confidence in caring for the patient as a result of the clinic. Four major themes were identified from thematic analysis: Care Delivery, Communication, Care Quality, and Family-Centeredness. Caregivers emphasized that the MDC model promoted access to care, enhanced efficiency, promoted provider teamwork, and encouraged shared care planning. Caregivers also valued a physical environment that was suitable for patients with complex needs.

Conclusion: This study demonstrated that caregivers believed the MDC model was both efficient and convenient for pediatric patients with neuromuscular disorders. This model has the potential to streamline medical care and can be applied more broadly to improve care coordination for children with medical complexity.

目的:本研究探讨了家庭对儿科神经肌肉护理诊所的满意度和对护理质量的感知,以评估多学科诊所(MDC)模式在为患有神经肌肉疾病(如脑瘫)的儿童提供协调护理方面的价值:对 22 名患者的护理人员进行了定性调查,评估他们对诊所效率、护理协调和沟通的看法。对调查进行了录音和转录。采用演绎法和归纳法完成了主题分析:结果:所有护理人员都表示,医疗服务提供者充分传达了病人护理的下一步措施,而且大多数护理人员表示,由于诊所的存在,他们对护理病人很有信心。主题分析确定了四大主题:护理服务、沟通、护理质量和以家庭为中心。护理人员强调,移动医疗中心模式促进了护理的可及性、提高了效率、促进了医疗服务提供者的团队合作,并鼓励共同制定护理计划。护理人员还重视适合有复杂需求的病人的物理环境:本研究表明,护理人员认为 MDC 模式对于儿科神经肌肉疾病患者来说既高效又方便。这种模式具有简化医疗护理的潜力,可以更广泛地应用于改善医疗复杂性儿童的护理协调。
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引用次数: 0
Factors influencing caregiver buy-in to early intervention physical therapy. 影响护理人员接受早期干预物理治疗的因素。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-230025
Andrea Fergus, Carlee Wyker, Nicole Heyl, Tayler Lewis, Katherine Hartsook

Objective: The family-centered care framework of Early Intervention (EI) has shifted the focus toward caregiver engagement, but the underlying processes that build this are unknown. The aims of this study were 1) to describe the process of caregiver engagement in therapy and (2) to identify factors perceived to influence caregiver buy-in, confidence, and engagement in EI.

Methods: This preliminary descriptive study utilized quantitative questionnaires and qualitative semi-structured interviews of EI participants (23 caregivers and four physical therapists). Interviews were transcribed and theme coded until saturation was achieved and a concept map was developed.

Results: All caregivers believed that their children benefited from EI, that they were empowered and confident in caring for their children, and their quality of life improved based on the quantitative data. The qualitative data revealed that building a rapport and therapeutic relationship is the foundation to developing buy-in. Reciprocal communication is critical to the relationship and the buy-in. Caregiver knowledge and awareness of progress foster caregiver buy-in and confidence once the relationship is established.

Conclusion: Improved understanding of the factors influencing the development of buy-in will provide a framework for the clinician to enhance caregiver buy-in. Enhanced buy-in may promote parental engagement and improved outcomes for the child and family.

目的:早期干预(EI)中以家庭为中心的护理框架已将重点转向照顾者的参与,但建立这种参与的基本过程尚不清楚。本研究的目的是:1)描述照护者参与治疗的过程;2)确定影响照护者接受、信任和参与早期干预的因素:这项初步描述性研究采用定量问卷调查和半结构式定性访谈的方法,访谈对象包括 23 名护理人员和 4 名物理治疗师。对访谈内容进行转录和主题编码,直至达到饱和并绘制出概念图:结果:根据定量数据,所有护理人员都认为他们的孩子从教育智能中受益,他们在护理孩子时增强了能力和信心,他们的生活质量也得到了改善。定性数据显示,建立融洽的治疗关系是培养认同感的基础。相互沟通对于建立关系和获得认同至关重要。一旦关系建立起来,护理人员对进展的了解和认识会促进护理人员的认同和信心:进一步了解影响 "认同 "形成的因素,将为临床医生提供一个框架,以增强护理人员的 "认同"。增强认同感可促进家长的参与并改善儿童和家庭的结果。
{"title":"Factors influencing caregiver buy-in to early intervention physical therapy.","authors":"Andrea Fergus, Carlee Wyker, Nicole Heyl, Tayler Lewis, Katherine Hartsook","doi":"10.3233/PRM-230025","DOIUrl":"10.3233/PRM-230025","url":null,"abstract":"<p><strong>Objective: </strong>The family-centered care framework of Early Intervention (EI) has shifted the focus toward caregiver engagement, but the underlying processes that build this are unknown. The aims of this study were 1) to describe the process of caregiver engagement in therapy and (2) to identify factors perceived to influence caregiver buy-in, confidence, and engagement in EI.</p><p><strong>Methods: </strong>This preliminary descriptive study utilized quantitative questionnaires and qualitative semi-structured interviews of EI participants (23 caregivers and four physical therapists). Interviews were transcribed and theme coded until saturation was achieved and a concept map was developed.</p><p><strong>Results: </strong>All caregivers believed that their children benefited from EI, that they were empowered and confident in caring for their children, and their quality of life improved based on the quantitative data. The qualitative data revealed that building a rapport and therapeutic relationship is the foundation to developing buy-in. Reciprocal communication is critical to the relationship and the buy-in. Caregiver knowledge and awareness of progress foster caregiver buy-in and confidence once the relationship is established.</p><p><strong>Conclusion: </strong>Improved understanding of the factors influencing the development of buy-in will provide a framework for the clinician to enhance caregiver buy-in. Enhanced buy-in may promote parental engagement and improved outcomes for the child and family.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"221-235"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11307095/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139513090","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}
引用次数: 0
Treatment of oromandibular dystonia with botulinum toxin A improves apnea in a teenager with quadriplegic cerebral palsy: A case report. 用 A 型肉毒毒素治疗口颌肌张力障碍可改善一名四肢瘫痪脑瘫青少年的呼吸暂停症状:病例报告。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-220105
Jeremy Roberts, Amy Tenaglia, Elisabeth Bellissimo, Heakyung Kim

This report describes a 15-year-old female with known spastic and dystonic quadriplegic cerebral palsy (CP), Gross Motor Function Classification System IV, and obstructive sleep apnea (OSA). She experienced decreased apneic episodes after receiving onabotulinumtoxin A (BoNT-A) injections for the treatment of oromandibular dystonia (OMD). After her OSA diagnosis, she initially received injections to the bilateral masseter and temporalis muscles with no effect on the frequency of nightly apneic episodes. Subsequently, the bilateral lateral pterygoid muscles were added and she was later noted to have fewer apneic episodes overnight. This case report describes the use of BoNT-A in the muscles of mastication for management of OMD and the ensuing improvement in OSA in a teenager with CP.

本报告描述的是一名 15 岁女性,已知患有痉挛性肌张力障碍四肢瘫痪型脑瘫(CP)、粗大运动功能分级系统 IV 级和阻塞性睡眠呼吸暂停(OSA)。为治疗口颌肌张力障碍(OMD),她接受了奥诺毒素 A(BoNT-A)注射,之后呼吸暂停发作减少。在确诊 OSA 后,她最初接受了双侧咀嚼肌和颞肌的注射,但对夜间呼吸暂停发作的频率没有影响。随后,她又接受了双侧翼外侧肌肉注射,后来她发现夜间呼吸暂停发作次数减少了。本病例报告介绍了在咀嚼肌中使用 BoNT-A 治疗 OMD 的情况,以及随后一名患有 CP 的青少年 OSA 的改善情况。
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引用次数: 0
REhabilitation Approaches in CHildren with cerebellar mutism syndrome (REACH): An international cross-disciplinary survey study. 小脑缄默症儿童康复方法(REACH):一项国际跨学科调查研究。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-230006
Sharyl Samargia-Grivette, Helen Hartley, Karin Walsh, Jurgen Lemiere, Allison D Payne, Emma Litke, Ashley Knight

Objective: Pediatric cerebellar mutism syndrome (pCMS) can occur following resection of a posterior fossa tumor and, although some symptoms are transient, many result in long-lasting neurological deficits. A multi-disciplinary rehabilitation approach is often used in cases of pCMS; however, there have been no clinical trials to determine gold standards in rehabilitation practice in this population, which remains a research priority. The purpose of this study was to identify and compare intervention practices used in pCMS throughout the disciplines of occupational and physical therapy, speech-language pathology, and neuropsychology across geographic regions.

Methods: A 55-question e-survey was created by an international multidisciplinary research group made up of members of the Posterior Fossa Society and sent to rehabilitation professionals in pediatric neuro-oncology centers in the US, Canada, and Europe.

Results: Although some differences in the type of intervention used in pCMS were identified within each discipline, many of the targeted interventions including dose, frequency, and intensity were similar within disciplines across geographic regions. In addition, there were common themes identified across disciplines regarding challenges in the rehabilitation of this population.

Conclusion: These results provide a foundation of current practices on which to build future intervention-based clinical trials.

目的:小儿小脑缄默综合征(pCMS)可在后窝肿瘤切除术后发生,虽然有些症状是一过性的,但许多症状会导致长期的神经功能缺损。pCMS 病例通常采用多学科康复治疗方法;然而,目前还没有临床试验来确定该人群康复治疗的黄金标准,这仍是研究的重点。本研究旨在确定和比较不同地区的职业和物理治疗、言语病理学和神经心理学等学科对 pCMS 采用的干预方法:由后窝协会成员组成的国际多学科研究小组制作了一份包含 55 个问题的电子调查表,并发送给美国、加拿大和欧洲儿科神经肿瘤中心的康复专业人员:结果:虽然各学科在小儿脑血管病中使用的干预类型存在一些差异,但许多有针对性的干预措施(包括剂量、频率和强度)在不同学科、不同地区都是相似的。此外,各学科还就该人群康复过程中面临的挑战确定了共同的主题:这些结果为当前的实践提供了一个基础,未来可以在此基础上开展基于干预的临床试验。
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引用次数: 0
Analysis of a model for pediatric physical therapy and clinical education via telehealth. 通过远程医疗进行儿科物理治疗和临床教育的模式分析。
IF 0.8 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-220112
Courtney McKenzie, Melanie Titzer, Alyssa Hutchinson, Camaran Dodge, Andrea Fergus

A novel entry-level collaborative clinical learning experience (CLE) in pediatric physical therapy (PT) delivered via telehealth was implemented involving 12 families, 54 DPT students, and 12 clinical instructors (CIs). Children of various ages, a wide range of home environments, and diagnoses received individualized PT via telehealth during a four-week CLE. Retrospective quantitative and qualitative analyses of student documentation, video recordings of sessions, and CI, student, and caregiver survey responses were performed. All children demonstrated qualitative improvements and 73% demonstrated quantitative improvements. CIs, students, and caregivers believed the children benefited from the experience and 98% believed the children were able to work toward their goals. Most students (95%) and CIs (100%) felt that it was a valuable and effective learning experience. Most (>71%) CIs and students believed students were able to learn in all relevant domains of the clinical performance instrument. This model provides a unique CLE for students in both pediatric PT and telehealth.

在儿科物理治疗(PT)领域,通过远程医疗提供了一种新颖的入门级合作临床学习体验(CLE),共有 12 个家庭、54 名 DPT 学生和 12 名临床导师(CI)参与其中。在为期四周的 CLE 中,不同年龄、不同家庭环境和不同诊断的儿童通过远程医疗接受了个性化的物理治疗。我们对学生文档、课程录像以及 CI、学生和护理人员的调查反馈进行了回顾性定量和定性分析。所有儿童在质量上都有所改善,73%的儿童在数量上有所改善。辅导员、学生和保育员都认为孩子们受益匪浅,98%的人认为孩子们能够朝着自己的目标努力。大多数学生(95%)和保育员(100%)认为这是一次宝贵而有效的学习经历。大多数(>71%)CI 和学生认为学生能够在临床表现工具的所有相关领域学到东西。这种模式为儿科 PT 和远程保健专业的学生提供了独特的 CLE。
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引用次数: 0
JPRM vol. 17 issue 1 Opening Editorial. JPRM 第 17 卷第 1 期开幕社论。
IF 1.9 Q4 PEDIATRICS Pub Date : 2024-01-01 DOI: 10.3233/PRM-249002
Heakyung Kim, Christopher Raffi Najarian, Justin W Ramsey, Sruthi Pandipati Thomas
{"title":"JPRM vol. 17 issue 1 Opening Editorial.","authors":"Heakyung Kim, Christopher Raffi Najarian, Justin W Ramsey, Sruthi Pandipati Thomas","doi":"10.3233/PRM-249002","DOIUrl":"10.3233/PRM-249002","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 1","pages":"1"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977388/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140326718","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}
引用次数: 0
期刊
Journal of pediatric rehabilitation medicine
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