Abstract
Objective
Dyskinesia in cerebral palsy (CP) is a complex movement disorder that can significantly impact upper limb function. Despite a range of available tools, there is no consensus on best practice assessment of upper limb function in children with CP and dyskinesia. This study aimed to develop a clinical framework for the assessment of the impact of dyskinesia on upper limb function in children with CP.
Design
Modified Delphi study using expert consensus.
Methods
An expert panel of six highly experienced Australian therapists ranked assessment tools sourced from existing evidence-based literature using a five-point Likert scale. Tools rated as important for use “most” or “all” of the time, by 80% of respondents were accepted into the framework following two survey rounds and a third stage discussion.
Results
Of 21 tools, 12 were included in the framework under five categories: (i) screening for dyskinesia; (ii) measuring the severity of dyskinesia; (iii) Classifying upper limb functional ability; (iv) measuring upper limb functional ability; and (v) measuring upper limb movement.
Conclusions
The framework for assessing the impact of dyskinesia on upper limb function in CP aims to guide clinicians to improve assessment consistency and facilitate individualized goal-directed management. Further studies with a larger number of expert clinicians and researchers will further strengthen the utility of the framework.
Acknowledgments
Expert input from Simon Garbellini, Jennifer Lewis, Melinda Randall, Nadine Smith, Kirsty Stewart, and Megan Thorley is gratefully acknowledged.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Funding
The author(s) reported there is no funding associated with the work featured in this article.
Notes
1 Love S, Gibson N, Blair, E & Watson L. Cerebral Palsy Description Form [Internet]. Perth (WA): Australian Cerebral Palsy Register, 2013 [updated 2020; cited 2020 Jul 25]. Available from: https://cpregister.com/wp-content/uploads/2020/03/CP-Description-Form-Version-IV-21Feb2020.pdf
2 Platt MJ, Krageloh-Mann I, & Cans C. Surveillance of cerebral palsy in Europe: Reference and Training Manual. Medical Education. 2009; 43: 495–6.
3 Rosenbaum P, Paneth N, Leviton A, Goldstein M, & Bax M. A report: the definition and classification of cerebral palsy April 2006. Developmental Medicine & Child Neurology. 2007; 109(Supp): 8–14.
4 Jethwa A, Mink J, Macarthur C, Knights S, Fehlings T, & Fehlings D. Development of the Hypertonia Assessment Tool (HAT): a discriminative tool for hypertonia in children. Developmental Medicine & Child Neurology. 2010; 52: e83–7.
5 Barry M, Van Swearingen J. and Albright A. Reliability and Responsiveness of the Barry-Albright Dystonia Scale. Developmental Medicine and Child Neurology. 1999; 41(6): 404–411.
6 Monbaliu E, Ortibus E, De Cat J, Dan B, Heyrman L, Prinzie P…Feys H. The Dyskinesia Impairment Scale: a new instrument to measure dystonia and choreoathetosis in dyskinetic cerebral palsy. Developmental Medicine & Child Neurology. 2012; 54(3): 278–83.
7 Danielsson A, Vanmechelen I, Lidbeck C, Krumlinde-Sundholm L, Ortibus E, Monbaliu E, & Tedroff K. Reliability and validity of the Dyskinesia Impairment Scale in children and young adults with inherited or idiopathic dystonia. 2020; 9(8): 2597.
8 Eliasson A, Krumlinde-Sundholm L, Rösblad B, Beckung E, Arner M, Ohrvall A, & Rosenbaum P. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Developmental Medicine and Child Neurology. 2006; 48(7): 549-554.
9 Elvrum A, Andersen G, Himmelman K, Beckung E, Öhrvall A, Lydersen S, & Vik T. Bimanual Fine Motor Function (BFMF) Classification of Children with Cerebral Palsy: Aspects of Construct and Content Validity. Physical and Occupational Therapy in Pediatrics. 2016; 36(1): 1–16.
10 Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, & Pollock N. The Canadian Occupational Performance Measure: an outcome measure for occupational therapy. Canadian Journal of Occupational Therapy. 1990; 57: 82–7.
11 Krumlinde-Sundholm L, & Eliasson A-C. Development of the Assisting Hand Assessment: a Rasch-built measure intended for children with unilateral upper limb impairments. Scandinavian Journal of Occupational Therapy. 2003; 10: 16–26.
12 Greaves S, Imms C, Dodd K, & Krumlinde-Sundholm L. Development of the Mini-Assisting Hand Assessment: evidence for content and internal scale validity. Developmental Medicine & Child Neurology. 2013; 55: 1030–7.
13 Randall M, Imms C, Carey L, & Pallant J. Rasch analysis of the Melbourne Assessment of Unilateral Upper Limb Function. Developmental Medicine and Child Neurology. 2014; 56: 665–672.
14 Georgiades M, Elliott C, Wilton J, Blair E, Blackmore M, & Garbellini S. The neurological hand deformity classification for children with cerebral palsy. Australian Occupational Therapy Journal. 2014; 61, 394–402.
15 Garbellini, S., & Wilton, J. (2019). Neurological Hand Deformity Classification (NHDC). Retrieved from https://www.neurohanddeformity.com/
Additional information
Notes on contributors
Edward Ralph
Edward Ralph, MAPP, BPhys, is at the Department of Physiotherapy, Tasmanian Health Service - North West Region, Burnie, Australia.
Kate Carroll
Kate Carroll, PhD, BAppSci is at the Department of Physiotherapy, School of Primary and Allied Health Care, Faculty of Medicine, Nursing and Health Sciences, Monash University, Brisbane, Australia; The Royal Children’s Hospital, Parkville, VIC, Australia; Murdoch Children’s Research Institute, Parkville, Australia.
Marcella Danks
Marcella Danks, PhD, BPhys, is at the School of Allied Health, Faculty of Health Sciences, Australian Catholic University, Virginia, Australia.
Adrienne Harvey
Adrienne Harvey, PhD, MPhys, BPhys, is at the Neurodisability and Rehabilitation Group, Murdoch Children’s Research Institute, Melbourne, Australia.