From the Department of Neurology (B.R.A., T.S.P.), Division of Pediatric Neurology, Washington University School of Medicine and St. Louis Children's Hospital, St. Louis, MO; Departments of Pediatrics and Neurology/Neurosurgery (M.S.), Montreal Children's Hospital, McGill University, Montreal, Quebec, Canada; Division of Pediatric Neurology (J.L.Wilson, B.R.), Oregon Health & Science University, Portland, OR; Department of Pediatrics (Y-M.K.), Division of Pediatric Neurology, Loma Linda University School of Medicine, Loma Linda, CA; Stanford University School of Medicine (J.A.O.), Palo Alto, CA; Departments of Child Health (M.C.K.), Neurology & Genetics, University of Arizona College of Medicine, Phoenix, AZ; Program in Neuroscience (M.C.K.), Arizona State University, Tempe, AZ; Pediatric Movement Disorders Program and Neurogenetics Research Program (M.C.K.), Barrow Neurological Institute, Phoenix Children's Hospital, Phoenix, AZ; Department of Paediatrics (M.F.), Monash University, Melbourne, Australia; Department of Pediatrics (J.L.Waugh), Division of Pediatric Neurology and Department of Neurology and Neurotherapeutics, University of Texas Southwestern, Dallas, TX; Department of Neurology and Developmental Medicine (B.S.), The Kennedy Krieger Institute, Baltimore, MD; Louisiana State University Health Sciences Center New Orleans and Children's Hospital of New Orleans (A.T.), New Orleans, LA.
Neurology. 2020 Nov 24;95(21):962-972. doi: 10.1212/WNL.0000000000011036. Epub 2020 Oct 12.
To contextualize the role of child neurologists and neurodevelopmentalists (CNs/NDDs) in cerebral palsy (CP) care, we review the changing landscape of CP diagnosis and survey stakeholder CNs/NDDs regarding their roles in CP care.
The optimal roles of the multiple specialties involved in CP care are currently unclear, particularly regarding CP diagnosis. We developed recommendations regarding the role of CNs/NDDs noting (1) increasing complexity of CP diagnosis given a growing number of genetic etiologies and treatable motor disorders that can be misdiagnosed as CP and (2) the views of a group of physician stakeholders (CNs/NDDs from the Child Neurology Society Cerebral Palsy Special Interest Group).
CNs/NDDs felt that they were optimally suited to diagnose CP. Many (76%) felt that CNs/NDDs should always be involved in CP diagnosis. However, 42% said that their patients with CP were typically not diagnosed by CNs/NDDs, and 18% did not receive referrals to establish the diagnosis of CP at all. CNs/NDDs identified areas of their expertise critical for CP diagnosis including knowledge of the neurologic examination across development and early identification of features atypical for CP. This contrasts with their views on CP management, where CNs/NDDs felt that they could contribute to the medical team, but were necessary primarily when neurologic coexisting conditions were present.
Given its increasing complexity, we recommend early referral for CP diagnosis to a CN/NDD or specialist with comparable expertise. This contrasts with current consensus guidelines, which either do not address or do not recommend specific specialist referral for CP diagnosis.
为了使儿童神经科医生和神经发育学家(CNs/NDDs)在脑瘫(CP)治疗中的角色具体化,我们回顾了 CP 诊断的变化情况,并对利益相关者 CNs/NDDs 进行了调查,以了解他们在 CP 治疗中的角色。
目前,CP 治疗中涉及的多个专业的最佳角色尚不清楚,特别是在 CP 诊断方面。我们针对 CNs/NDDs 的角色提出了建议,指出(1)由于越来越多的遗传病因和可治疗的运动障碍可能被误诊为 CP,CP 诊断的复杂性不断增加,以及(2)一组医生利益相关者(来自儿童神经病学会脑瘫特别兴趣小组的 CNs/NDDs)的观点。
CNs/NDDs 认为他们最适合诊断 CP。许多人(76%)认为 CNs/NDDs 应该始终参与 CP 的诊断。然而,42%的人表示,他们的 CP 患者通常不是由 CNs/NDDs 诊断的,18%的人根本没有接受过转诊以确定 CP 的诊断。CNs/NDDs 确定了他们在 CP 诊断中具有专长的领域,包括对发育过程中的神经检查的了解以及对不典型 CP 特征的早期识别。这与他们对 CP 管理的看法形成对比,CNs/NDDs 认为他们可以为医疗团队做出贡献,但主要是在存在神经共存疾病时才有必要。
鉴于其日益复杂,我们建议尽早将 CP 诊断转介给 CN/NDD 或具有类似专业知识的专家。这与当前的共识指南形成对比,共识指南要么没有涉及,要么不建议针对 CP 诊断进行特定的专家转诊。