Mary Jo Cooley Hidecker, PhD, CCC-A/SLP
Speech-Language Pathology
University of Central Arkansas
Email: [email protected]
Cerebral Palsy Definition
“describes a group of permanent disorders of the
development of movement and posture, causing
activity limitations, that are attributed to nonprogressive 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)
Cerebral Palsy Definition
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)
3
How many individuals with CP have
communication problems?
 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
4
How many individuals with CP have
communication problems?
 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
5
How many individuals with CP have
communication problems?
 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
6
Few Communication
Measures in CP Studies
 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
WHO ICF Model
The World Health Organization’s (WHO) International Classification
of Functioning, Disability and Health (ICF)
Health Condition
(Disorder or Disease)
Body Functions
& Structures
Participation
Activity
Environmental
Factors
Personal
Factors
WHO, 2001
WHO ICF Model: 3 perspectives
on assessment and intervention
1. body structure and function – anatomy &
physiology includes language subsystems
2. daily activities – carrying out tasks such
as communication
3. participation in home, school, work
and/or community
Also consider interactions with
 personal factors
 (e.g., age, motivation, desires) and
 environmental factors
 (e.g., settings of home or community,
familiarity with communication
partner)
ICF Body/Structure Function Level
Denes & Pinson, p.5
The Communication Model
= ICF Activities/Participation Levels
Sender
Receiver
Communication
Environment
Functional Limitations in
Daily Activities
 Mobility Palisano et al., 1997
 Gross Motor Function Classification System (GMFCS)
www.canchild.ca/Portals/0/outcomes/pdf/GMFCS-ER.pdf
 Handling Objects Eliasson et al., 2006
 Manual Ability Classification System (MACS) for children
with cerebral palsy 4-18 years www.macs.nu/
 Communication Hidecker et al., under development
 Communication Function Classification System (CFCS)
www.cfcs.us/
 Eating/Drooling Sellers et al., under development Manchester U.K.
Comparison of Classification Tools
GMFCS
Mobility
MACS
Handling objects
CFCS
Level
Communicating
Effective sender/receiver
Walks without Handles objects easily
I.
with unfamiliar and
limitations.
and successfully.
familiar partners
Handles most objects
Effective but slower
Walks with
but with somewhat
sender/receiver with
II.
limitations.
reduced quality and/or
unfamiliar and familiar
spread of achievement.
partners
Handles objects with
Walks using
difficulty; needs help Effective sender/receiver
III.
a hand-held
to prepare and/or
with familiar partners
mobility device.
modify activities.
Self-mobility
Handles a limited
with limitations;
Inconsistent sender
selection of easily
IV.
May use
and/or receiver with
managed objects in
powered
familiar partners
adapted situations.
mobility.
Does not handle objects
Transported in
Seldom effective
and has severely limited
V.
a manual
sender/receiver even
ability to perform even
wheelchair.
with familiar partners
simple actions.
Purpose of CFCS
 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
Method – 4 Phases
1. Development
2. Nominal Groups
3. Delphi Surveys
4. Reliability
CFCS Development
• 8 Stakeholder groups
• Adults with CP
• Educators
• Neurologist
• Occupational Therapists
• Parents of children with CP
• Pediatricians
• Physical Therapists
• Speech-Language Pathologists
Participants
Stakeholder Groups
Adults with CP
Educators
Neurologists
Occupational Therapists
Parents of
Children with CP
Pediatricians
Physical Therapists
Speech-Language
Pathologists/Researchers
Others
N*
Development Nominal
Team
Group
Delphi
Survey
Delphi
Survey
Round 1
Round 2
1 (9%)
1 (9%)
1 (9%)
2 (18%)
3 (11%)
4 (15%)
1 (4%)
2 (7%)
16 (14%) 12 (17%)
8 (7%) 5 (7%)
5 (5%) 5 (7%)
8 (7%) 3 (4%)
1 (9%)
4 (15%)
7 (6%)
4 (6%)
2 (18%)
1 (9%)
3 (11%)
3 (11%)
13 (12%)
11 (10%)
8 (12%)
5 (7%)
3 (27%)
7 (26%)
42 (38%) 28 (41%)
---------11
4 (15%)
27
24 (21%) 13 (19%)
112
69
Results
Delphi Survey Questions
Did you have a good idea of what the scope of the CFCS was
when you read the bullet points?
Do the instructions make sense?
Do the definitions and explanations make sense?
For Level I, is the wording clear?
Is the wording of Level II clear?
Is the wording of Level III clear?
Is the wording of Level IV clear?
Is the wording of Level V clear?
Are the functional communication abilities and limitations of
individuals with cerebral palsy sufficiently identified within the
levels of the CFCS?
Are there any two levels which might be hard to tell apart or
have some overlap?
Round 1 Round 2
Yes No Yes No
97% 3%
94%
95%
92%
94%
95%
94%
98%
6%
5%
8%
6%
5%
6%
2%
93% 7%
36% 64% 10% 90%
Reliability
• Professional inter rater (n=69)
• Parent-professional inter rater
• Parents/Family members (n=68)
• Professionals (n=61)
• Test-retest (n=48 professionals)
Professional 2
Professional Inter rater Reliability
Professional 1
II
III
CFCS
I
I
5
2
II
2
3
III
3
5
7
6
IV
1
2
2
17
1
4
13
V
IV
V
Weighted kappa=.66 (95% CI. 55-.77); Increases to .77 for kids > 4 years
Parent
Parent-Professional
Inter rater Reliability
Professional
II
III
CFCS
I
I
10
4
3
2
II
7
9
9
12
1
III
6
9
7
6
IV
1
4
24
11
2
11
V
Weighted kappa=.49 (95% CI .39-.58)
IV
V
Professional Test-Retest Reliability
Time 2
CFCS
I
II
III
IV
I
11
2
1
1
7
3
2
11
7
Time 1
II
III
IV
V
Weighted kappa=.82 (95% CI .74-.90)
21
V
3
20
Cooley
Hidecker et
al., 2009
Cooley
Hidecker et
al., 2009
Cooley
Hidecker et
al., 2009
Current CFCS Draft
Cooley
Hidecker et
al., 2009
CFCS Level Identification Chart
Hidecker et al.
Please do not use without permission
Clinical Implications
 Accessible, common tool that can be
used by both parents and professionals.
 Useful when talking with families and
other professionals.
 Support understanding among various
members of multidisciplinary teams.
Clinical Implications –
examples
 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?
Clinical Implications –
examples
 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.
Current research directions
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
Current research directions
 CFCS to cerebral palsy registries’ data?
 Surveillance of CP in Europe (SCPE)
 Translate/validate CFCS in languages
 Currently underway
 Arabic
 Dutch
 Turkish
 Need Spanish partners
• Translation Interests
• ?????
Future research directions
 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.
Future research directions
 Validate the CFCS in other populations
including those with autism, Down
syndrome, and post-stroke.
 Study the possible effect of additional
AAC components and operational
competencies on CFCS Levels.
Acknowledgements
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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 ThomasStonell, 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.
References
1
2
3
4
5
6
World Health Organization. (2001) International classification of functioning,
disability and health : ICF. Geneva: World Health Organization.
World Health Organization. (2007) International classification of functioning,
disability, and health : children & youth version : ICF-CY. Geneva: World Health
Organization.
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:
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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.
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.
Eliasson AC, Krumlinde-Sundholm L, Rosblad B, Beckung E, Arner M, Ohrvall AM,
Rosenbaum P. (2006) The Manual Ability Classification System (MACS) for children
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Med Child Neurol 48: 549-54.
Contact us
 Mary Jo Cooley Hidecker
[email protected]
 Accepting graduate and postdoctoral students
 CFCS Website
http://cfcs.us
 Updated presentation slides will be posted at
http://faculty.uca.edu/mjchidecker
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