Bhooma R Aravamuthan1, Michael Shevell2, Young-Min Kim2, Jenny L Wilson2, Jennifer A O'Malley2, Toni S Pearson2, Michael C Kruer2, Michael Fahey2, Jeff L Waugh2, Barry Russman2, Bruce Shapiro2, Ann Tilton2. 1. 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. aravamuthanb@wustl.edu. 2. 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.
Abstract
OBJECTIVE: 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. METHODS: 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). RESULTS: 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. DISCUSSION: 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.
OBJECTIVE: 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. METHODS: 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). RESULTS: 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. DISCUSSION: 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.
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Authors: Maya Chopra; Dustin L Gable; Jamie Love-Nichols; Alexa Tsao; Shira Rockowitz; Piotr Sliz; Elizabeth Barkoudah; Lucia Bastianelli; David Coulter; Emily Davidson; Claudio DeGusmao; David Fogelman; Kathleen Huth; Paige Marshall; Donna Nimec; Jessica Solomon Sanders; Benjamin J Shore; Brian Snyder; Scellig S D Stone; Ana Ubeda; Colyn Watkins; Charles Berde; Jeffrey Bolton; Catherine Brownstein; Michael Costigan; Darius Ebrahimi-Fakhari; Abbe Lai; Anne O'Donnell-Luria; Alex R Paciorkowski; Anna Pinto; John Pugh; Lance Rodan; Eugene Roe; Lindsay Swanson; Bo Zhang; Michael C Kruer; Mustafa Sahin; Annapurna Poduri; Siddharth Srivastava Journal: Ann Clin Transl Neurol Date: 2022-01-24 Impact factor: 4.511