Communication and CP: What do CFCS scores tell us?

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CFCS Communication and CP: What do CFCS scores tell us? Mary Jo Cooley Hidecker PhD, MS, MA, CCC-A/SLP Email: MJCHidecker@uca.edu Website: www.cfcs.us 1

Health Condition (Disorder or Disease) Body Functions & Structures (Impairment) Activity (Limitation) Participation (Restriction) Environmental Factors (Barriers or Hindrances) Personal Factors WHO, 2001, 2007 2

Shifting to ICF Activity/Participation Classifications Communication Function Classification System (CFCS) (Hidecker et al., 2011 ) http://cfcs.us Gross Motor Function Classification System (GMFCS) (Palisano et al., 1997 ) http://www.canchild.ca/en/ measures/gmfcs.asp Manual Ability Classification System (Eliasson et al., 2006) http://www.macs.nu/ Eating and Drinking Ability Classification System (EDACS) (Sellers et al., under development ) Outcomes Focus on the Outcomes of Communication Under Six (FOCUS) (Thomas-Stonell et al., 2010) http://www.hollandbloorview.ca/ research/focus/ 3

GMFCS MACS CFCS Level Mobility Handling objects Communicating Effective sender/receiver Walks without Handles objects easily I. with unfamiliar and limitations. and successfully. familiar partners II. III. IV. V. Walks with limitations. Walks using a hand-held mobility device. Self-mobility with limitations; May use powered mobility. Transported in a manual wheelchair. Handles most objects but with somewhat reduced quality and/or speed of achievement. Handles objects with difficulty; needs help to prepare and/or modify activities. Handles a limited selection of easily managed objects in adapted situations. Does not handle objects and has severely limited ability to perform even simple actions. 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 4

Inter-relationships of functional status in cerebral palsy: Analyzing Gross Motor Function, Manual Ability, and Communication Function Classification Systems in children Hidecker et al, 2012

AIM Investigate the relationship among GMFCS (mobility), MACS (hand use) and CFCS (communication) in children with cerebral palsy

PARTICIPANTS AND METHODS 222 children met the case definition: children diagnosed with CP, aged 2-17 years, born in Michigan GMFCS, MACS, CFCS reported by mothers. CP types and associated impairments from physican referral forms.

CORRELATION RESULTS GMFCS-MACS r s =.69 Strong CFCS-MACS r s =.54 Moderate GMFCS-CFCS r s =.47 Moderate May be due to overlapping locations and amounts of original brain injury Mobility, hand function, or communication function not likely to functionally predict each other

MACS Level GMFCS-MACS-CFCS RESULTS GMFCS Level I (n=59) CFCS Level Row Totals I II III IV V I 21 5 5 0 0 31 II 9 7 3 4 0 23 III 4 1 0 0 0 5 IV 0 0 0 0 0 0 V 0 0 0 0 0 0 Column 34 13 8 4 0 59 Totals

MACS Level GMFCS-MACS-CFCS RESULTS GMFCS Level II (n=62) CFCS Level I II III IV V I 11 5 1 0 0 17 II 11 5 9 3 0 28 III 3 3 2 3 1 12 IV 2 0 1 1 0 4 V 0 0 0 0 1 1 Column 27 13 13 7 2 62 Totals

MACS Level GMFCS-MACS-CFCS RESULTS GMFCS Level III (n=26) CFCS Level I II III IV V I 4 0 0 3 0 7 II 5 3 2 0 1 11 III 3 1 2 0 0 6 IV 0 0 0 2 0 2 V 0 0 0 0 0 0 Column 12 4 4 5 1 26 Totals

MACS Level GMFCS-MACS-CFCS RESULTS GMFCS Level IV (n=26) CFCS Level I II III IV V I 1 0 0 0 0 1 II 1 0 3 0 0 4 III 3 2 4 5 0 14 IV 1 1 3 0 0 5 V 0 0 0 0 2 2 Column Totals 6 3 10 5 2 26

MACS Level GMFCS-MACS-CFCS RESULTS GMFCS Level V (n=49) CFCS Level I II III IV V I 0 0 0 0 0 0 II 1 2 0 1 0 4 III 1 2 2 2 0 7 IV 1 2 8 7 3 21 V 0 1 3 5 8 17 Column 3 7 13 15 11 49 Totals

Propose Functional Profiles By considering the GMFCS, MACS, & CFCS separately and in combinations All I s GMFCS I, MACS I, & CFCS I All V s GMFCS V, MACS V, & CFCS V GMFCS III (uses crutches) MACS I (uses hands functionally) CFCS II (uses a speech-generating device) GMFCS IV (uses powered wheel chair) MACS I (uses hands functionally) CFCS II (uses a speech-generating device) 14

FUTURE DIRECTIONS Relate functional profiles to measures of activities & participation Increase sample size to compare possible differences by age & type of CP Repeat analysis in population-based samples

Early predictors of communication function in children with cerebral palsy: Methods of communication and associated impairments Hidecker et al., 2013

AIMS 1) Investigate the relationship between CFCS levels and communication methods and associated impairments. 2) Identify potential predictors of CFCS levels.

PARTICIPANTS AND METHODS 215 children met the case definition: children diagnosed with CP, aged 2-17 years, born in Michigan CP types and associated impairments from physican referral forms. CFCS and methods of communication reported by mothers. Potential predictors from maternal interview.

RESULTS **n, (%) Associated Impairments All 215 CFCS I 81 (38) CFCS II 42 (20) CFCS III 42 (20) CFCS IV 35 (16) CFCS V 15 (7) Cognitive impairment 60 (28) 9 (4) 13 (6) 15 (7) 16 (27) 7 (3) Hearing impairment 9 (4) 4 (2) 0 1(<1) 2 (1) 2 (1) Seizure 59 (27) 9 (4) 10 (5) 10 (5) 18 (8) 12 (5) Speech impairment 76 (35) 8 (4) 18 (8) 20 (9) 22 (10) 8 (4) Visual impairment 67 (31) 24 (11) 13 (6) 11 (5) 13 (6) 6 (3) No comorbidities 74 (34) 43 (20) 16 (7) 12 (6) 2 (1) 1 (<1) One comorbidity 57 (27) 25 (12) 8 (4) 14 (7) 8 (4) 2 (1) Two comorbidities 51 (24) 11 (5) 10 (5) 6 (3) 17 (8) 7 (3) Three or more comorbidities 33 (15) 2 (1) 8 (4) 10 (5) 8 (4) 5 (2)

RESULTS **MULTIPLE METHODS USED n, (%) Communication methods used All 215 CFCS I 81 (38) CFCS II 42 (20) CFCS III 42 (20) CFCS IV 35 (16) CFCS V 15 (7) Speech** 164 (76) 81 (38) 37 (17) 29 (13) 15 (7) 2 (1) Speech only** 58 (27) 43 (20) 11 (5) 2 (1) 1 (<1) 1 (<1) Sounds ** 125 (58) 28 (13) 23 (11) 33 (15) 29 (13) 12 (6) Eye gaze, facial expression, gesture, pointing** 131 (61) 36 (17) 27 (13) 37 (17) 26 (12) 5 (2) Manual sign* 53 (25) 13 (6) 11 (5) 17 (8) 12 (6) 0 Aided AAC 46 (21) 8 (4) 5 (2) 14 (7) 18 (8) 1 (<1) Communication boards, books, and/or pictures** 38 (18) 8 (4) 4 (2) 12 (6) 14 (6) 0 VOCAs or SGDs** 24 (11) 1 (<1) 3 (1) 7 (3) 11 (5) 2 (1)

CRUDE AND ADJUSTED ODDS RATIO (OR) FOR CFCS LEVELS I, II, III, AND COMBINED IV/V Gestational age Crude OR Conf Interval Adj. OR Conf Interval <=32 weeks.53*.32.86.33*.16.65 > 32 weeks REF Comorbidities No comorbidities One or more comorbidities First words <= 24 months old REF 2.19* 1.14 4.20 1.91* 1.40 2.6 > 24 months old 10.05* 5.49 18.39 Interaction effect Communication methods used Speech only.10*.05.20 Interaction effect

FUTURE DIRECTIONS Explore reasons behind aided AAC use or not Increase sample size to allow model building Repeat analysis in population-based samples

Additional Research Projects Phase 1: Further development of CFCS Ordinality of the five CFCS levels Extension of CFCS to adults with cerebral palsy Extension of CFCS to other disorders Development of the Autism Classification of Social Function Factors affecting parents and professionals agreement on CFCS Translations & validation of CFCS in other languages Phase 2: Analysis using CFCS data Michigan OWL data Ontario Ministry of Children and Youth Services preschool speech and language programs 23

CFCS Website (translations & FAQs available) http://cfcs.us/download Available on website: Chinese-Simplified Chinese-Traditional Dutch German Hebrew Norwegian-SCPE Spanish Swedish-SCPE Turkish In process: French 24

References Eliasson, A. C., Krumlinde-Sundholm, L., Rosblad, B., Beckung, E., Arner, M., Ohrvall, A. M., & Rosenbaum, P. (2007). Using the MACS to facilitate comunication about manual abilities of children with cerebral palsy. Dev Med Child Neurol, 49(2), 156-157. Hidecker, M. J. C., Paneth, N., Rosenbaum, P. L., Kent, R. D., Lillie, J., Eulenberg, J. B., Chester, K., Johnson, B., Michalsen, L., Evatt, M., & Taylor, K. (2011). Developing and validating the Communication Function Classification System (CFCS) for individuals with cerebral palsy. Dev Med and Child Neurol, 53(8), 704-710. Hidecker, M.J.C., Ho, N.T., Dodge, N., Hurvitz, E., Slaughter, J., Workinger, M.S., Kent, R.D., Rosenbaum, P., Lenski, M., Messaros, B.M., VanderBeek, S.B., DeRoos, S., Paneth, N. (2012). Inter-relationships of functional status in cerebral palsy: Analyzing Gross Motor Function, Manual Ability, and Communication Function Classification Systems in children. Dev Med and Child Neurol, 54(8), 737-742. 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 and Child Neurol, 39(4), 214-223. Thomas-Stonell, N. L., Oddson, B., Robertson, B., & Rosenbaum, P. L. (2010). Development of the FOCUS (Focus on the Outcomes of Communication under Six), a communication outcome measure for preschool children. Dev Med and Child Neurol, 52(1), 47-53. 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. 25

ACKNOWLEDGEMENTS Children and families who participated NIH NINDS grant to Nigel Paneth, PI

QUESTIONS???????????? 27