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Using the Communication Function Classification System (CFCS) . Mary Jo Cooley Hidecker, PhD, CCC-A/SLP . Speech-Language Pathology University of Central Arkansas Email: MJCHidecker@uca.edu . Cerebral Palsy Definition.
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Mary Jo Cooley Hidecker, PhD, CCC-A/SLP
University of Central Arkansas
“describes a group of permanent disorders of the development of movement and posture, causing activity limitations, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.
The motor disturbances of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems”Rosenbaum, et al. (2007)
Annotations of each term follow, including:“ ‘sensation’ – Vision, hearing and other sensory modalities may be affected, both as a function of the ‘primary’ disturbance(s) to which CP is attributed, and as a secondary consequence of activity limitations that restrict learning and perceptual development experiences.”“ ‘communication’ – Expressive and/or receptive communication and/or social interaction skills may be affected, both as a function of the ‘primary’ disturbance(s) to which CP is attributed, and as a secondary consequence of activity limitations that restrict learning and perceptual development experiences.” Rosenbaum, et al. (2007)
Few recent studies conducted by SLPs and audiologists
Many citations are based on published U.S. research in 1950’s and 1960’s
Need for CP epidemiological studies of communication and eating
In U.S., no national registry of individuals with CP
Expensive research to carry out and maintain
Need for multidisciplinary teams
No consensus on operational definitions
58% with “communication problem”7% with “hearing problem” Bax et al (2006)
Cerebral palsy registries (n=26) Hidecker et al (2009)
11 speech definitions used by 22 registries
8 language definitions used by 11 registries
14 hearing definitions used by 25 registries
6 AAC definitions used by 6 registries
Norway CP Registry (Andersen, et al. 2010)
51% of 564 children had speech problems
Speech problems = “indistinct” or “no speech”
54% of children with speech problems had AAC
58% of the children with speech problems used graphic AAC
33% of the children with speech problems used hand signs
Need: Better measures of speech, language, and hearing within existing CP epidemiological studies.
Challenge: Quick, multidisciplinary measure of communication
Hope: More SLPs and audiologists will be included on CP research teams
The World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF)
(Disorder or Disease)
body structure and function – anatomy & physiology includes language subsystems
daily activities – carrying out tasks such as communication
participation in home, school, work and/or community
Denes & Pinson, p.5
MobilityPalisano et al., 1997
Gross Motor Function Classification System (GMFCS)
Handling ObjectsEliasson et al., 2006
Manual Ability Classification System (MACS) for children with cerebral palsy 4-18 years www.macs.nu/
CommunicationHidecker et al., under development
Communication Function Classification System (CFCS) www.cfcs.us/
Eating/DroolingSellers et al., under development Manchester U.K.
Communication classification tool in CP clinical and research settings
Grounded in SLP and audiology literature
Understandable to all interested in CP
Valid and reliable
Easily administered with other protocols
Will not replace existing communication assessments
Weighted kappa=.66 (95% CI. 55-.77); Increases to .77 for kids > 4 years
Weighted kappa=.49 (95% CI .39-.58)
Weighted kappa=.82 (95% CI .74-.90)
Cooley Hidecker et al., 2009
Hidecker et al. Please do not use without permission
Knowing a person’s CFCS classification may suggest a starting point for intervention (we still need clinical research evidence)
Level I – Any activity or participation limitations? Decrease any residual speech sound errors?
Level II – Any ways to speed up communication, especially with unfamiliar partners? Can repair strategies be improved? Can AAC access/composing methods be faster?
Level III – Increase communication partners? Improve communication repair strategies? Add AAC?
Level IV – Increase sender and/or receiver skills? Add AAC?
Level V – Improve partner recognition of gestures and unconventional messages?
Focus on communication partner training.
Create a communication dictionary of these unconventional message.
Pair AAC message with unconventional message.
Measure the CFCS stability across the life span.
Need research partners who serve individuals with CP from age 2 to 21
Will classify CFCS and collect additional data over the course of 4 years
CFCS to cerebral palsy registries’ data?
Surveillance of CP in Europe (SCPE)
Translate/validate CFCS in languages
Need Spanish partners
Create a snapshot of a person’s functional levels by reporting the CFCS in conjunction with GMFCS & MACS.
Correlate the CFCS level to quality of life and/or participation measures.
Thank you to the individuals who participated:
In addition to those who chose to contribute anonymously,
Development Team: Sally Bucrek, Kipp Chillag, DO, Ann-Christin Eliasson, PhD, Maria S. French, PhD, Lisa Herren, Rebecca Jones, PhD, Lena Krumlinde-Sundholm, PhD
Nominal Group: Deena Agree, George Baker, Lisa Bardach, Lehua Beamon, Susan Davenport, Denise Fitzpatrick, Elizabeth A. Fox, Barb Galuppi, Jonathon Gold, Clare Jorgensen, Marilyn Kertoy, John Lawton, Michael Livingston, Rhonda Massa, Jeanette Miller, Chris Morris, Nancy Novakoski, Krista Richardson, Cindy J. Russell, Dianne Russell, Geraldine Schram, Dennis Schroeder, Becky Schroeder, Yakov Sigal, Nancy Thomas-Stonell, David VanDyke, Lynna M. Walta, Kristin J. Whitfield
Delphi Survey: Janet H. Allaire, Ilona Autti-Rämö, Rita L. Bailey, Simona Bar-Haim, David Bauer, Kristie Bjornson, PhD, PT, Timothy J Brei, MD, Wendy Burdo-Hartman, MD, Megan Carter, Michael Collis, Cynthia Cress, Diane L. Damiano, Pamela K. De Loach, Leo V. Deal, Shelley Deegan, Steven T DeRoos, MD, Cindy DeYoung, Laura Drower M.S., SLP, Joseph R. Duffy, Stephanie Farnham OTR, James W. Fee, Jr., Iris Fishman, Deb Gaebler, Gay L. Girolami, PT, MS, Jan Willem Gorter, MD PhD, Kate Himmelmann, Megan M. Hodge, Tara Kehoe, Debora K. Kerr, Barbara A. Krampac, MS CCC/SLP-L, Nicole Lomerson, Mary Ann Lowe, Valerie Maples, Jill Meilahn, D.O., Michael E. Msall, MD, Susan Murr, Dana Overhake, Robert J. Palisano, Carol Palk, Lindsay Pennington, Judy Phelps, OTR, Matthew Phillips, Margaret R. Poore, SLP/AAC Specialist, Dinah Reddihough, Tom J Reed, Dr. Gina Rempel, James M Renuk, Bernadette Robertson, Cheryl Robins, Sharon Rogers, Lynn Rothman, Julie Scherz, Diane Dudas Sheehan, Kevin Vance, Candace Hill Vegter, Jo Watson, Ellen Wood, Marilyn Seif Workinger, PhD, Marshalyn Yeargin-Allsopp, MD
Reliability Sites: BC Centre for Ability (Vancouver, British Columbia), Helen DeVos Children’s Hospital (Grand Rapids, Michigan), Gillette Children’s Hospital (St. Paul, Minnesota), Marshfield Clinic (Marshfield, Wisconsin), Seattle Children’s Hospital (Seattle, Washington), Rehabilitation Institute of Chicago (Chicago, Illinois)
Research Team: Aliah Alsarraf, Megan Bigalke, Kenneth Chester, Stephanie Currier, Kristen Darga, Julie Fisk, Kelly Gowryluk, Carly Hanna, Brenda Johnson, Lauren Klee, Lauren Klier, Jenny Koivisto, Lauren Michalsen, Hye Sung Park, Sarah Parker, Tiffany Quast, Kristen Raabis, Marliese Sharp, Archie Soelaeman, Katie VanLandschoot, Lauren Werner, Jacqueline Wilson
This research is supported in part by an NIH postdoctoral fellowship (NIDCD 5F32DC008265-02) as well as grants from the Cerebral Palsy International Research Foundation and The Hearst Foundation.
1 World Health Organization. (2001) International classification of functioning, disability and health : ICF. Geneva: World Health Organization.
2 World Health Organization. (2007) International classification of functioning, disability, and health : children & youth version : ICF-CY. Geneva: World Health Organization.
3 Raghavendra P, Bornman J, Granlund M, Björck-Åkesson E. (2007) The World Health Organization's international classification of functioning, disability and health: implications for clinical and research practice in the field of augmentative and alternative communication. Augmentative and Alternative Communication 23: 349 - 61.
4 Hidecker MJC, Paneth N, Rosenbaum P, Kent RD, Lillie J, Johnson B, Chester K. (2009) Development of the Communication Function Classification System (CFCS) for individuals with cerebral palsy. Developmental Medicine and Child Neurology 51(Suppl2): 48.
5 Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. (1997) Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 39: 214-23.
6 Eliasson AC, Krumlinde-Sundholm L, Rosblad B, Beckung E, Arner M, Ohrvall AM, Rosenbaum P. (2006) The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol 48: 549-54.
Mary Jo Cooley HideckerMJCHidecker@uca.edu
Accepting graduate and postdoctoral students
Updated presentation slides will be posted athttp://faculty.uca.edu/mjchidecker