Using the Communication Function Classification System (CFCS)

1. 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

2. 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)

3. 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)

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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)

11. ICF Body/Structure Function Level Denes & Pinson, p.5

12. The Communication Model= ICF Activities/Participation Levels Message Sender Receiver CommunicationEnvironment

13. 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.

14. Comparison of Classification Tools

15. 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

16. Method – 4 Phases • Development • Nominal Groups • Delphi Surveys • Reliability

17. CFCS Development • 8 Stakeholder groups • Adults with CP • Educators • Neurologist • Occupational Therapists • Parents of children with CP • Pediatricians • Physical Therapists • Speech-Language Pathologists

18. Participants

19. Results

20. Reliability • Professional inter rater (n=69) • Parent-professional inter rater • Parents/Family members (n=68) • Professionals (n=61) • Test-retest (n=48 professionals)

21. Professional Inter rater Reliability Professional 2 Weighted kappa=.66 (95% CI. 55-.77); Increases to .77 for kids > 4 years

22. Parent-Professional Inter rater Reliability Parent Weighted kappa=.49 (95% CI .39-.58)

23. Professional Test-Retest Reliability Time 1 Weighted kappa=.82 (95% CI .74-.90)

24. Cooley Hidecker et al., 2009

25. Cooley Hidecker et al., 2009

26. Cooley Hidecker et al., 2009

27. Current CFCS Draft Cooley Hidecker et al., 2009

28. CFCS Level Identification Chart Hidecker et al. Please do not use without permission

29. 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.

30. 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?

31. 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.

32. 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

33. 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 • ?????

34. 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.

35. 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.

36. 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.

37. 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.

38. 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