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 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 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 Activity Participation 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

Communication Environment

Receiver

Functional Limitations in



Mobility



Daily Activities

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 MACS CFCS Level I. II. III. IV. V. Mobility Handling objects Communicating

Walks without limitations. Walks with limitations. Walks using a hand-held mobility device. Handles objects easily and successfully. Handles most objects but with somewhat reduced quality and/or spread of achievement. Handles objects with difficulty; needs help to prepare and/or modify activities. Self-mobility with limitations; May use powered mobility. Handles a limited selection of easily managed objects in adapted situations. Transported in Does not handle objects and has severely limited a manual ability to perform even wheelchair. simple actions. Effective sender/receiver with unfamiliar and familiar partners Effective but slower sender/receiver with unfamiliar and familiar partners Effective sender/receiver with familiar partners Inconsistent sender and/or receiver with familiar partners Seldom effective sender/receiver even with familiar partners

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 Team Nominal Group

1 (9%) 3 (11%) 1 (9%) 4 (15%) 1 (9%) 2 (18%) 1 (4%) 2 (7%) 1 (9%) 2 (18%) 1 (9%) 3 (27%) ----------

11

4 (15%) 3 (11%) 3 (11%) 7 (26%) 4 (15%)

27 Delphi Survey Round 1 Delphi Survey Round 2

16 (14%) 12 (17%) 8 (7%) 5 (5%) 8 (7%) 5 (7%) 5 (7%) 3 (4%) 7 (6%) 13 (12%) 11 (10%) 4 (6%) 8 (12%) 5 (7%) 42 (38%) 28 (41%) 24 (21%) 13 (19%)

112 69

Results

Delphi Survey Questions Round 1 Round 2 Yes No Yes No

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? 97% 3% 94% 6% 95% 5% 92% 8% 94% 6% 95% 5% 94% 6% Is the wording of Level V clear? Are there any two levels which might be hard to tell apart or have some overlap? 98% 2% Are the functional communication abilities and limitations of individuals with cerebral palsy sufficiently identified within the 93% 7% levels of the CFCS? 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 Inter rater Reliability

CFCS I Professional 1 II III IV V I II III IV V 5 2 3 1 2 3 5 2 7 2 6 17 4 1 13

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

Parent-Professional Inter rater Reliability

Professional CFCS I II III IV I II III IV V 10 7 4 9 6 1 3 9 9 4 2 12 7 24 2

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

V 1 6 11 11

Professional Test-Retest Reliability

CFCS I II Time 2 III IV V I II III IV V 11 2 7 1 3 11 1 2 7 21 3 20

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

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 •

Translation Interests

• ?????

 Turkish 

Need Spanish partners

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

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

References

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

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