TY - JOUR
T1 - The Role of Child Neurologists in the Management of Motor Disability in Cerebral Palsy
T2 - Establishing the Path Forward
AU - Gelineau-Morel, Rose
AU - Kim, Young Min
AU - O'Malley, Jennifer A.
AU - Wilson, Jenny L.
AU - Aravamuthan, Bhooma R.
N1 - Funding Information:
Funding: This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (Gelineau-Morel, 5T32HD069038-12 ) and the National Institute of Neurological Disorders and Stroke (Aravamuthan, 1K08NS117850-01 ).
Funding Information:
Funding: This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (Gelineau-Morel, 5T32HD069038-12) and the National Institute of Neurological Disorders and Stroke (Aravamuthan, 1K08NS117850-01). Declaration of interests: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Rose Gelineau-Morel reports a relationship with National Institute of Child Health and Human Development that includes funding grants. Bhooma Aravamuthan reports a relationship with National Institute of Neurological Disorders and Stroke that includes funding grants. Bhooma Aravamuthan reports a relationship with Hope for HIE that includes board membership. Bhooma Aravamuthan reports a relationship with Neurocrine Biosciences Inc that includes consulting or advisory. Bhooma Aravamuthan reports a relationship with UptoDate Inc that includes consulting or advisory. Jennifer O'Malley reports a relationship with PTC Therapeutics Inc that includes consulting or advisory. Jenny Wilson reports a relationship with the American Academy of Neurology that includes consulting or advisory. Jenny Willson is the site PI for multicenter research study sponsored by TEVA Pharmaceuticals.
Publisher Copyright:
© 2023 Elsevier Inc.
PY - 2023/7
Y1 - 2023/7
N2 - Background: Cerebral palsy (CP) is the most common motor disability of childhood, and yet the role of child neurologists and neurodevelopmentalists (CN/NDDs) in the management of children with CP is unclear. Although previous surveys showed that CN/NDDs believe they are uniquely expert in CP motor phenotyping and should be involved in CP management, others have demonstrated that training in CP management among CN/NDD residency programs is inadequate. Methods: In this article, we surveyed a group of CN/NDDs at the Child Neurology Society Cerebral Palsy Special Interest Group meeting on January 27, 2022. Questions addressed provider comfort with CP tone management including motor phenotyping, pharmacologic and surgical management, barriers and solutions to improving practice, and the use of systems-based care. Results: Responses from 42 participants demonstrated that CN/NDDs lack experience with CP tone management, with 48% and 58% of respondents reporting little to no experience in pharmacologic or surgical management, respectively. Primary barriers identified to improving comfort with CP tone management included lack of knowledge and ineffective treatment options, while most solutions centered on improving collaborations between CN/NDDs and other specialties. Only 50% of respondents reported currently using systems-based care in the management of patients with CP. Conclusions: An interdisciplinary, systems-based care model would allow for collaboration and knowledge sharing between involved specialties and provide high-value goal-directed care to maximize the functional outcomes for every individual with CP.
AB - Background: Cerebral palsy (CP) is the most common motor disability of childhood, and yet the role of child neurologists and neurodevelopmentalists (CN/NDDs) in the management of children with CP is unclear. Although previous surveys showed that CN/NDDs believe they are uniquely expert in CP motor phenotyping and should be involved in CP management, others have demonstrated that training in CP management among CN/NDD residency programs is inadequate. Methods: In this article, we surveyed a group of CN/NDDs at the Child Neurology Society Cerebral Palsy Special Interest Group meeting on January 27, 2022. Questions addressed provider comfort with CP tone management including motor phenotyping, pharmacologic and surgical management, barriers and solutions to improving practice, and the use of systems-based care. Results: Responses from 42 participants demonstrated that CN/NDDs lack experience with CP tone management, with 48% and 58% of respondents reporting little to no experience in pharmacologic or surgical management, respectively. Primary barriers identified to improving comfort with CP tone management included lack of knowledge and ineffective treatment options, while most solutions centered on improving collaborations between CN/NDDs and other specialties. Only 50% of respondents reported currently using systems-based care in the management of patients with CP. Conclusions: An interdisciplinary, systems-based care model would allow for collaboration and knowledge sharing between involved specialties and provide high-value goal-directed care to maximize the functional outcomes for every individual with CP.
KW - Cerebral palsy
KW - Children
KW - Developmental disability
KW - Dystonia
KW - Neurodevelopment
KW - Spasticity
KW - Tone
KW - Treatment
UR - http://www.scopus.com/inward/record.url?scp=85153796039&partnerID=8YFLogxK
U2 - 10.1016/j.pediatrneurol.2023.03.018
DO - 10.1016/j.pediatrneurol.2023.03.018
M3 - Article
C2 - 37121109
AN - SCOPUS:85153796039
SN - 0887-8994
VL - 144
SP - 33
EP - 38
JO - Pediatric Neurology
JF - Pediatric Neurology
ER -