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Are we speaking the same language? A pilot study to evaluate the agreement in clinical phenotyping of children with cerebral palsy

H. Eggink, D. Kremer, O.F. Brouwer, M.F. Contarino, M.E. van Egmond, A. Elema, K. Folmer, J.F. van Hoorn, L.A. van de Pol, V. Roelfsema, M.A.J. Tijssen (Groningen, Netherlands)

Meeting: 2016 International Congress

Abstract Number: 1715

Keywords: Ataxia: Clinical features, Cerebral palsy, Dystonia: Clinical features, Spasticity: Clinical features

Session Information

Date: Thursday, June 23, 2016

Session Title: Pediatric movement disorder

Session Time: 12:00pm-1:30pm

Location: Exhibit Hall located in Hall B, Level 2

Objective: The aim of this pilot study was determine the agreement of phenotypical classification of children with cerebral palsy among clinicians.

Background: Cerebral palsy (CP) consists of a group of syndromes characterized by abnormalities of posture and motor activity. Patients are phenotypically classified as spastic, dyskinetic, ataxic or combined CP. Correct classification is essential for communication between medical professionals especially to gain optimal and targeted treatment for the individual patient.

Methods: Fifteen children with CP (8 boys, 11y±4y, Gross Motor Function Measure range 1-5) were videotaped according to a standardized protocol. A total of nine clinicians (three pediatric neurologists, three pediatric rehabiliation doctors and three movement disorder specialists) scored the presence, severity and localisation of spasticity, dyskinesia and/or ataxia in each patient. Inter- and intrarater agreement of the most prominent symptom and observed phenotype (f.i. spastic-dyskinetic) were assessed using the Fleiss’ and Cohen’s Kappa.

Results: Preliminary results show moderate agreement (κ = 0.416) for the dominant symptom, but only slight agreement (κ = 0.186) for clinical phenotype in the nine clinicians. Agreement only slighty differed within the specialist groups (κ = 0.360-0.545). The severity of symptoms did not affect consensus, reflected by an >50% agreement in 2/5 non-ambulant and 5/10 ambulant children. Intra-observer measurements are currently retrieved and will be presented at the conference.

Conclusions: These preliminary results highlights the large differences in classification of neurological symptoms in children CP. There is a large disagreement, not only between different disciplines, but also between specialists of the same discipline. As the presence of spasticity and dyskinesia may require specific treatment strategies, it is important to improve the consensus in phenotyping. We suggest a multidisciplinary approach with the goal to optimize and monitor management of children with CP.

To cite this abstract in AMA style:

H. Eggink, D. Kremer, O.F. Brouwer, M.F. Contarino, M.E. van Egmond, A. Elema, K. Folmer, J.F. van Hoorn, L.A. van de Pol, V. Roelfsema, M.A.J. Tijssen. Are we speaking the same language? A pilot study to evaluate the agreement in clinical phenotyping of children with cerebral palsy [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/are-we-speaking-the-same-language-a-pilot-study-to-evaluate-the-agreement-in-clinical-phenotyping-of-children-with-cerebral-palsy/. Accessed June 14, 2025.
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