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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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using the communication function classification system cfcs

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
Cerebral Palsy Definition

“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)

cerebral palsy definition3
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)

how many individuals with cp have communication problems
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

how many individuals with cp have communication problems5
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

how many individuals with cp have communication problems6
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

few communication measures in cp studies
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
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
WHO ICF Model: 3 perspectives on assessment and intervention

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

also consider interactions with
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)
the communication model icf activities participation levels
The Communication Model= ICF Activities/Participation Levels

Message

Sender

Receiver

CommunicationEnvironment

functional limitations in daily activities
Functional Limitations in Daily Activities

MobilityPalisano et al., 1997

Gross Motor Function Classification System (GMFCS)

www.canchild.ca/Portals/0/outcomes/pdf/GMFCS-ER.pdf

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.

purpose of cfcs
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
Method – 4 Phases
  • Development
  • Nominal Groups
  • Delphi Surveys
  • Reliability
cfcs development
CFCS Development
  • 8 Stakeholder groups
    • Adults with CP
    • Educators
    • Neurologist
    • Occupational Therapists
    • Parents of children with CP
    • Pediatricians
    • Physical Therapists
    • Speech-Language Pathologists
reliability
Reliability
  • Professional inter rater (n=69)
  • Parent-professional inter rater
    • Parents/Family members (n=68)
    • Professionals (n=61)
  • Test-retest (n=48 professionals)
professional inter rater reliability
Professional Inter rater Reliability

Professional 2

Weighted kappa=.66 (95% CI. 55-.77); Increases to .77 for kids > 4 years

parent professional inter rater reliability
Parent-Professional Inter rater Reliability

Parent

Weighted kappa=.49 (95% CI .39-.58)

professional test retest reliability
Professional Test-Retest Reliability

Time 1

Weighted kappa=.82 (95% CI .74-.90)

current cfcs draft
Current CFCS Draft

Cooley Hidecker et al., 2009

cfcs level identification chart
CFCS Level Identification Chart

Hidecker et al. Please do not use without permission

clinical implications
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
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 examples31
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
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 directions33
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
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 directions35
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
Acknowledgements

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.

references
References

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.

contact us
Contact us

Mary Jo Cooley HideckerMJCHidecker@uca.edu

Accepting graduate and postdoctoral students

CFCS Websitehttp://cfcs.us

Updated presentation slides will be posted athttp://faculty.uca.edu/mjchidecker