Mary Jo Cooley Hidecker, PhD, CCC-A/ SLP a Kara Taylor, BS a Morgan Poole, BS a

1. Using the Communication Function Classification System (CFCS) to Categorize Communication Performance of Children with CP Mary Jo Cooley Hidecker, PhD, CCC-A/SLPa Kara Taylor, BSa Morgan Poole, BSa NigelPaneth, MDb Peter Rosenbaum, MDc Raymond D. Kent, PhDd aSpeech-Language Pathology, University of Central Arkansas, USA bEpidemiology, Michigan State University, USA cCanChild Centre for Childhood Disability Research, McMaster University, Canada dWaisman Center, University of Wisconsin-Madison, USA

2. 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

3. 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

4. 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)

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

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

7. 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)

8. 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.

9. Comparison of Classification Tools

10. 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

11. 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

12. Cooley Hidecker et al., 2009

13. Cooley Hidecker et al., 2009

14. Cooley Hidecker et al., 2009

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

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

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

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

19. Participants

20. Results

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

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

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

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

25. Objectives • To analyze the communication of a sample of children with CP by: • Communication modes • GMFCS (mobility classification) • MACS (hand use classification) • Cerebral palsy types • Comorbidities

26. Participants • 71 children with CP • Ages 2 to 18 years • Parent raters • If no parent rating, used professional rating

27. Communication Methods • 41 of 71 used speech • 15 of 41 used ONLY speech • 56 of 71 were multi-modal • Speech (n=26) • Sounds (n=51) • Eye gaze, facial expressions, gesturing, &/or pointing (n=53) • Manual signs (n=20) • Communication books, boards, and/or pictures (n=19) • Speech-generating devices or voice output devices (n=16)

28. CFCS & Communication Modes

29. SGD/VOCA by CFCS Level • Speech-generating devices or voice output devices (n=16) • CFCS Level I (n=1) • CFCS Level II (n=2) • CFCS Level III (n=3) • CFCS Level IV (n=8) • CFCS Level V (n=2)

30. GMFCS & MACS Levels by CFCS Level

31. GMFCS & MACS Levels by CFCS Level

32. GMFCS & MACS Levels by CFCS Level

33. GMFCS & MACS Levels by CFCS Level

34. GMFCS & MACS Levels by CFCS Level

35. Types of Cerebral Palsy and CFCS • Types of CP • Bilateral (n= 63) • Hemiplegia (n= 13) • Spastic (n= 62) • Dyskinetic (n= 5) • Dystonic (n= 27) • Choreo-athetotic (n= 4) • Ataxic (n= 10) • CP type NOT a predictor of CFCS Level

36. Comorbidities and CFCS Levels • developmental delay (85%) • mild or severe cognitive impairment (56%) • seizure disorder (52%) • language disorder (45%) • visual impairment not corrected by glasses (44%) • dysarthria (34%) • apraxia of speech (27 %)

37. Key Findings • CFCS with GMFCS and MACS provides a more complete view of the functional abilities of children with CP. • Speech was associated with more effective communicators.

38. 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.

39. 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

40. 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 • ?????

41. 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.

42. 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?

43. 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.

44. 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.

45. 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.

46. Acknowledgements Thank you to the individuals who participated: In addition to those who chose to contribute anonymously, Development Team: Sally Bucrek, KippChillag, DO, Ann-ChristinEliasson, PhD, Maria S. French, PhD, Lisa Herren, Rebecca Jones, PhD, Lena Krumlinde-Sundholm, PhD Nominal Group: Deena Agree, George Baker, Lisa Bardach, LehuaBeamon, 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, YakovSigal, Nancy Thomas-Stonell, David VanDyke, Lynna M. Walta, Kristin J. Whitfield Delphi Survey: Janet H. Allaire, IlonaAutti-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 SeifWorkinger, PhD, MarshalynYeargin-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: AliahAlsarraf, 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.

47. 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.

48. 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