Cerebral Palsy in the 21^st Century: Is There Anything Left To Say?

Abstract

In April 2009 I was honoured to be asked to present the Emil Becker Lecture at the 35^th annual meeting of the German-Swiss-Austrian Society for Neuropaediatrics (Gesellschaft für Neuropädiatrie). Focusing on my interest and involvement as a clinician and researcher in cerebral palsy, I took the opportunity to look both back at the past 35 years and forward to what I believe are some of the important clinical challenges that are still to be addressed and solved in the 21^st century. This paper is therefore a personal reflection rather than a comprehensive review of the literature in cerebral palsy. It is my hope that these reflections will be of interest to others.

cerebral palsy - health services - research

References

• 1 Avery LM, Russell DJ, Raina PS. et al . Rasch analysis of the gross motor function measure: validating new the assumptions of the rasch model to create an interval-level measure.  Arch Phys Med Rehabil. 2003;  84 697-705
• 2 Boyce W, Gowland C, Hardy S. et al . Development of a Quality of Movement Measure for children with cerebral palsy.  Phys Ther. 1991;  71 820-832
• 3 Boyce W, Gowland C, Rosenbaum P. et al . Gross Motor Performance Measure for children with cerebral palsy: study design and preliminary findings.  J Pub Health. 1992;  83 ((Suppl 2)) S34-S40
• 4 Brehaut JC, Kohen DE, Garner RE. et al . Health among caregivers of children with health problems: findings from a Canadian population-based study.  Am J Public Health.. 2009 May 14; 
• 5 Brehaut J, Kohen D, Raina P. et al . The health of parents of children with cerebral palsy: how does it compare to other Canadian adults?.  Pediatrics. 2004;  114 ((2)) August
• 6 Eliasson AC, Krumlinde Sundholm L, Rösblad B. et al . The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability.  Dev Med Child Neurol. 2006;  48 549-554
• 7 Gorter JW, Ketelaar M, Rosenbaum P. et al . Use of the Gross Motor Function Classification System in infants with cerebral palsy: the need for reclassification at age 2 or older.  Dev Med Child Neurol. 2008;  51 46-52
• 8 Gorter JW, Rosenbaum PL, Hanna SE. et al . Limb distribution, type of motor disorder and functional classification of cerebral palsy: how do they relate?.  Dev Med Child Neurol. 2004;  46 461-467
• 9 Gowland C, Boyce W, Wright V. et al . Reliability of the Gross Motor Performance Measure.  Phys Ther. 1995;  75 597-602
• 10 Hägglund G, Lauge-Pedersen H, Wagner P. Characteristics of children with hip displacement in cerebral palsy.  BMC Musculoskelet Disord. 2007;  8 101
• 11 Haley SM, Coster WJ, Ludlow LH. et al . Pediatric Evaluation of Disability Inventory: Development, Standardization, and Administration Manual, Version 1.0 Boston: England Medical Center 1992
• 12 Heinen F, Schroeder AS, Fietzek U. et al . When it comes to botulinum toxin, children and adults are not the same: multimuscle option for children with cerebral palsy.  Mov Disord. 2006;  21 2029-2030
• 13 Heinen F, Kirschner J, Mall V. et al . GMFM und GMFCS – Messung und Klassifikation motorischer Funktionen. Russell DJ, Rosenbaum PL, Avery LM, Lane M. Huber 2006
• 14 Heinen F,. Schröder AS,. Döderlein L. et al . Grafikgestützter Konsensus für die Behandlung von Bewegungsstörungen bei Kindern mit bilateralen spastischen Zerebralparesen (BS-CP). Graphically based Consensus on the treatment of movement disorders in children with bilateral spastic cerebral palsy (BS-CP). Therapiekurven – CP-Motorik Motor treatment curves in CP. Monatsschr Kinderheilkd 0026–9298 (Print) 1433–0474 (Online), DOI 10.1007/s00112–009–2001–2.
• 15 Hidecker et al . personal communication.
• 16 Kennes J, Rosenbaum P, Hanna S. et al . Health status of school-aged children with cerebral palsy: information from a population-based sample.  Dev Med Child Neurol. 2002;  44 240-247
• 17 King G, King S, Rosenbaum P. et al . Family-centred caregiving and well-being of parents of children with disabilities: Linking process with outcome.  J Pediatr Psychol. 1999;  24 41-52
• 18 King S, Rosenbaum P, King G. Parents’ perceptions of care-giving: development and validation of a process measure.  Dev Med Child Neurol. 1996;  38 757-772
• 19 Krägeloh-Mann I, Horber V. The role of magnetic resonance imaging in elucidating the pathogenesis of cerebral palsy: a systematic review.  Dev Med Child Neurol. 2007;  49 144-151
• 20 Lane M, Russell D. Gross Motor Function Measure (GMFM) Self-Instructional Training Cd-Rom. Clinics in Developmental Medicine, Mac Keith Press
• 21 Morris C, Galuppi BE, Rosenbaum PL. Reliability of family report for the Gross Motor Function Classification System.  Dev Med Child Neurol. 2004;  46 455-460
• 22 Morris C, Kurinczuk JJ, Fitzpatrick R. et al . Who best to make the assessment? Professionals and families’ classifications of gross motor function are highly consistent.  Arch Disease Child. Published Online First:. 25 April 06;  , doi:10.1136/adc.2005.090597
• 23 Palisano RJ, Rosenbaum P, Bartlett D. et al . Content validity of the Expanded and Revised Gross Motor Function Classification System.  Dev Med Child Neurol. 2008;  50 744-750
• 24 Palisano R, Rosenbaum P, Walter S. et al . Development and reliability of a system to classify gross motor function in children with cerebral palsy.  Dev Med Child Neurol. 1997;  39 214-223
• 25 Palisano RJ, Tieman BL, Walter SD. et al . Effect of environmental setting on mobility methods of children with cerebral palsy.  Dev Med Child Neurol. 2003;  45 113-120
• 26 Parkes J, Dolk H, Hill N. Children and young people with cerebral palsy in Northern Ireland – Birth years 1977–1997. A comprehensive report from the Northern Ireland Cerebral Palsy Register. Belfast: Queen's University 2005
• 27 Raina P, O’Donnell M, Rosenbaum P. et al . The health and well-being of caregivers of children with cerebral palsy: what are the determinants?.  Pediatrics. 2005;  115 e626-e636
• 28 Rosenbaum PL. Screening tests and standardized assessments used to identify and characterize developmental delays.  Sem Ped Neurol. 1998;  5 1-7
• 29 Rosenbaum P, Cadman D, Russell D. et al . Issues in measuring change in motor function in children with cerebral palsy. A special communication.  Phys Ther. 1990;  70 125-131
• 30 Rosenbaum P, King S, Law M. et al . Family-centred services: A conceptual framework and research review.  Phys Occup Ther Pediatr. 1998;  18 1-20
• 31 Rosenbaum PL, Livingston MH, Palisano RJ. et al . Quality of life and health-related quality of life of adolescents with cerebral palsy.  Dev Med Child Neurol. 2007;  49 516-521
• 32 Rosenbaum PL, Palisano RJ, Bartlett DJ. et al . Developing the Gross Motor Function Classification System for Cerebral Palsy: Lessons and implications for classifying function in childhood disability.  Dev Med Child Neurol. 2008;  50 249-253
• 33 Rosenbaum PL, Walter SD, Hanna SE. et al . Prognosis for gross motor function in cerebral palsy: creation of motor development curves.  JAMA. 2002;  288 1357-1363
• 34 Russell D, Rosenbaum P, Cadman D. et al . The gross motor function measure: a means to evaluate the effects of physical therapy.  Dev Med Child Neurol. 1989;  31 341-352
• 35 Russell D, Rosenbaum PL, Avery L. et al . The Gross Motor Function Measure. GMFM-66 and GMFM-88 (Users’ Manual). Clinics in Developmental Medicine No. 159. London: Mac Keith Press 2002
• 36 Russell DJ, Avery LM, Walter SD. et al . Development and validation of algorithmic item sets for the GMFM-66: improved efficiency of administration in children with cerebral palsy.  Dev Med Child Neurol (submitted).
• 37 Scrutton D, Rosenbaum PL. The locomotor development of children with cerebral palsy. In: Connolly K, Forssberg H (Eds) Neurophysiology and Neuropsychology of Motor Development. London: Mac Keith Press 1997: 101-123
• 38 Soo B, Howard JJ, Boyd RN. et al . Hip displacement in cerebral palsy.  J Bone Joint Surg Am. 2006;  88 121-129
• 39 Stanley FJ, Blair E, Alberman E. Cerebral Palsies: Epidemiology and Causal Pathways. Cambridge University Press 2000
• 40 Streiner DL, Norman GR. Health measurement scales. A practical guide to their development and use, Fourth Edition. Oxford University Press 2008
• 41 Tieman B, Palisano RJ, Gracely EJ. et al . Gross motor capability and performance of mobility in children with cerebral palsy: a comparison across home, school, and outdoors/community settings.  Phys Ther. 2004;  84 419-429

Correspondence