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On the Journey Together Translating the GMFCS into Practice: Clinician and Caregiver Perspectives

AACPDM 2018 Instructional Course #40: 1:30-3:30 PM

Saturday October 13, 2018Amy Bailes PT PhD. PCS Amy.bailes@cchmc.org

Mary Gannotti PT PhDgannotti@Hartford.edu

Danielle M Bellows, PT, MHS, PCS

dbellows@connecticutchildrens.org

Michele Shusterman CP NOW

Michele@cpnowfoundation.org

Jen Lyman CP Collaborative jblyman@mac.com

Objectives

1. Discuss the use of the GMFCS and motor curves since its development in 1997 (20 mins)

2. Reflect on reports of parent knowledge and preferences for learning about their child’s gross motor function classification in CP (20 mins)

3. Integrate the GMFCS in a family centered approach to developing a plan of care and goal setting with families (20 mins)

4. Recognize and better understand the perspective of parents when classifying their child with CP through role playing and case examples (45 mins)

Q and A (10 mins)

Use of GMFCS levels since its development in 1997

Mary Gannotti PT PhDgannotti@Hartford.edu

Professor, Department of Rehab Sciences, University of Hartford

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Disclosure InformationAACPDM 72nd Annual Meeting | October 9-13, 2018

Speaker Name: Mary Gannotti

Disclosure of Relevant Financial Relationships

I have no financial relationships to disclose.

I will not discuss off label use and/or investigational use in my presentation

NO CP

MILD CP

MODERATE CP

SEVERE CP LEVEL ILEVEL IILEVEL IIILEVEL IVLEVEL V

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GMFCS I

GMFCS II

GMFCS III

GMFCS IV

GMFCS V

Ordinal scale-distance between levels is not the same

Who can classify?

• OT’s, PT’s MD’s

• Parents, caregivers

• Self report

• Telephone Interview

• Medical record review

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before 2nd birthday/from age 2-4th birthday/from age 4-6th birthday/from age 6-12th birthday/12-18 years

Copyright restrictions may apply.

Rosenbaum, P. L. et al. JAMA 2002;288:1357-1363.

Predicted Average Development by the Gross Motor Function Classification System Levels

87.7

68.4

54.3

40.4

22.3

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Hanna et al 2009

DMCN

GMFCS allows us to;

• Prognosticate

• Understand

• Educate

How do these curves effect decision making?

• “These findings will help parents understand the outlook for their child’s gross motor function, because an evidence-based estimate can now be made about gross motor prognosis based on age and GMFCS level.”

• “Curves provide an effective way to assess whether a child’s motor progress is consistent with patterns observed in children of similar age and severity”

• (Rosenbaum et al. 2008 JAMA)

• Curves will assist therapists and other health care professionals collaborate with children and families to identify• Outcomes that are consistent with a child’s potential• The extent interventions improve gross motor function beyond expectations based

on a child’s age and classification level. (Palisano 2004 DMCN)

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Limitations to gross motor curves

• GMFM does not assess quality of motor control.

• They do not evaluate the ways in which children’s function is enhanced with aids, orthoses.

• GMFM does not measure other areas of health that are important for children with CP such as balance, stamina, energy efficiency, physical fitness, prevention of secondary impairments and quality of motor control. These should not be inferred from the curves.

How the Gross Motor Classification System levels have really impacted research, but evidence lacks to support the impact on clinical practice

Citations of GMFCS in Research

• More than 4,500 and growing every day!

• Pervasively used in Research; it is an important stratification variable to understand intervention effectiveness or group characteristics

• Adopted as part of the Common Data Elements for the NIH

• Adopted as part of the Common Data Model for Cerebral Palsy Research Registry

• Clinical Care Pathways use the GMFCS levels as foundation to developing care plans

• AACPDM Clinical Care Pathways

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Uptake and Use in Research

Morris and Bartlett 2004

What about in the Clinic??

KT of the GMFCS so far……

Majority of Use of GMFCS in Research

Morris & Bartlett 2004

Little use in clinical practice or family centered care

Gray et al 2010

Most use inconsistently or as a data point for evaluation

Deville et al 2015

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What about Parents?

• Motor development primary concern• Vargus-Adams & Martin 2011

• Parents of children with other chronic diseases prefer ALL information as soon as available

• Aite et al 2006, Starke et al 2002, Byrnes et al 2003, Krahn, Hallum et al. 1993

• Same true of parents of children with CP• Dagenais et al 2006

• Despite wanting prognostic information• Novak 2011

“Knowing what you’re dealing with is so much easier, even if

you don’t want to know”

Links to Adult Outcomes…….Links between childhood treatments and positive adult outcomes

• Is all this really worth it?

“Children with cerebral palsy spend the majority of their lives as adults with cerebral palsy”

(Bleck 1984 (26) DMCN Editorial)

Given the demographics of the US, about 80% of individuals with cerebral palsy are adults

(US Census 2015)

Stairs to Nowhere……..

Caregiver knowledge and preferences for gross motor information in cerebral palsy

Amy F Bailes PT PhD, PCS

Amy.bailes@cchmc.org

Cincinnati Children’s Hospital Medical Center

University of Cincinnati, College of Allied Health Sciences

https://doi.org/10.1111/dmcn.13994

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Disclosure InformationAACPDM 72nd Annual Meeting | October 9-13, 2018

Speaker Name: Amy F Bailes

Disclosure of Relevant Financial Relationships

I have no financial relationships to disclose.

I will not discuss off label use and/or investigational use in my presentation

What is Missing?

• Do parents know what GMFCS level their child would be classified as? Is their knowledge associated with confidence in caring for their child, setting PT goals, and therapy expectations?

• What factors are associated with knowledge of the GMFCS?

• What are parent preferences and experiences for learning about motor function and how they use information?

Why? • To improve knowledge sharing processes that take into account parents

preferences for receiving information

Survey • Designed by study team based on literature review and research questions

• 40 questions, Three sections • Information about the respondent and the person they are reporting on • Current knowledge of their child’s gross motor function, caregiver identification of their child’s

GMFCS level, and confidence related to care of their child• Personal experience and use of the GMFCS information

• Content validity was assessed 10 families completed and modifications were made based on feedback

• IRB approved at Cincinnati Children’s, Connecticut Children's’ and University of Hartford

• Survey available electronically through survey monkey (Aug 29-Nov 29 2016) on paper by request

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https://doi.org/10.1111/dmcn.13994

Respondent demographics

Relationship to person with CP N = 303 (%)

Mother 273 (90)

Father 18 (5.9)

Other 12 (4)

Level of Education N = 273 (%)

Some high school 2 (<1)

High school diploma 22 (8.1)

Vocational/technical school 14 (5.1)

Some college 31 (11.4)

2 year college degree 36 (13.2)

4 year college degree 77 (28.2)

Graduate degree 91 (33.3)

Age of respondent N = 272 (%)

20-29 years 28 (10.3)

30-39 years 113 (41.5)

40-49 years 94 (34.6)

50-59 years 28 (10.3)

60-69 years 9 (3.31)

Clinical Characteristics of the Individuals with CPGMFCS Levels N = 282 (%) Limbs Affected N = 302 (%) Type of CP N = 302 (%)

I 62 (22) Monoplegia 10 (3.3) Ataxic 10 (3.3)

II 45 (16) Diplegia 59 (19.5) Dyskinetic 11 (3.6)

III 44 (15) Hemiplegia 73(24.2) Spastic 150 (49.5)

IV 64 (23) Quadriplegia 142(46.9) Hypotonic 15 (5)

V 67 (24) Other 18 (5.96) Mixed Type 101 (33.3)

Other 1 (<1)

Don’t know 15 (5)

Demographics

Age N = 303% Gender N = 273 (%) Ethnicity N = 271 (%) Race N = 273 (%)

Under 5 years 104 (42.6) Male 158 (57.9) Hispanic 15 (5.5) African-American/Black 16 (5.9)

5-11 years 122 (40.3) Female 115 (42.1) Non-Hispanic 256 (94.5) American Indian/Alaskan native 0 (0)

12-17 years 39 (12.9) Asian 7 (2.6)

Over 18 years 13 (4.3) Native Hawaiian/Pacific Islander 2 (<1)

Place of birth N = 273 (%) White 222 (81.3)

United States 220 (80.6) From multiple races 25 (9.2)

Other 53 (19.4) Unknown 1 (<1)

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Caregiver knowledge of gross motor function N=303 (%)

Yes No

Are you aware of what Gross Motor Function Classification Level

the person with CP would be classified as? 137 (45) 166 (55)

Do you know how the person’s motor skill development

compares to others with similar age and type of CP to the person

you are reporting on?94 (31) 209 (69)

Do you think it is/would be helpful to know how the person’s

motor development compares to others with similar age and

type of CP? 224 (74) 79 (26)

What factors are associated with caregiver knowledge of GMFCS level?

• Significant association between

• Education level of the caregiver, (X2 =12.585, p=0.004)

• No association between

• Race of the person with CP (X2=.0007), p=0.98,) or

• GMFCS level of the person with CP (X2=2.237, p=0.69,

n=16

n=44

n=59

n=106

n=228

n=265

Other (please …

Video

Internet

Parent …

Medical doctor

Therapist

* Can chose more than 1 response

Who would you like to tell you about the person's motor development? (n=303) *

87%

75%

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How confident are you….

How does PT meet your expectations…Table 5: Respondent ratings in regards to confidence and expectations.

Confidence Ratings N = 303 (%)

Really not confident

Not confident Not sure Confident Really confident

How confident are you taking care of the person’s needs related to their CP?

0 (0.0)

10 (3.3)

29 (9.6)

167 (55.1)

97 (32.0)

How confident are you in setting physical therapy goals for the person’s motor skill development?

6 (1.98)

40 (13.2)

72 (23.8)

144 (47.5)

41 (13.5)

Expectation Ratings N = 303 (%)

Much less than expected

Less than expected

Matches expectations

Exceeds expectations

Greatly exceeds expectations

How does the physical therapy intervention the person receives meet your expectations?

26 (8.58)

75 (24.8)

124 (40.9)

55 (18.2)

23 (7.59)

87% confident or really confident

61% confident or really confident

66.7% matches or exceeds expectations

No association between GMFCS level and confidence or PT meets expectations

Of those that answered yes (n=137)they knew what GMFCS level their child is classified as ………….

Their experiences and preferences

n=11

n=11

n=43

n=48

n=14

Not at all

Slightly

Somewhat

Very

Extremely

Helpfulness in revisiting the topic of the person's GMFCS level over time (n=127)

Of those that answered yes……

83% reported it would be helpful to revisit the topic over time

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Of those that answered yes……

n=24

n=25

n=42

n=23

n=15

Not at all

Slightly

Somewhat

Very

Extremely

How emotionally difficult was it to learn about GMFCS level (n=129)

Of those that answered yes……

56%

35%

9%

0 10 20 30 40 50 60 70 80

At the same time I learned about the diagnosis of CP

Sometime after I learned about the person’s CP allowing time for me to adjust to the diagnosis

Prefer not to have learned about the GMFCS level

Responses

When would you have preferred to learn about the GMFCS level? (n=127)

Of those that answered yes……

n=2

n=7

n=27

n=75

n=16

Not at all

Slightly

Somewhat

Very

Extremely

How informative the picture along with words is in describing GMFCS level (n=127)

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Of those that answered yes……* More than 1 response allowed

n=13

n=19

n=22

n=32

n=41

n=53

n=54

n=76

Other

To discuss with policy makers, lawmakers, and …

To discuss with the person with CP

Don’t use

To communicate with other parents

To discuss with family …

To discuss with the school …

To discuss with health professionals

How do you use the information about the person's GMFCS level (n =

127)*

60%

43%

42%

n=13

n=112

Yes

No

Has anyone ever shown you a motor curve? (n=125)

90%

Rosenbaum, P. L. et al. JAMA 2002;288:1357-1363.

Of those that answered yes……

n=11

n=11

n=43

n=48

n=14

Not at all

Slightly

Somewhat

Very

Extremely

Helpfulness in revisiting the topic of the person's GMFCS level over time (n=127)

Of those that answered yes……

83% reported it would be helpful to revisit the topic over time

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n=21

n=16

n=39

n=40

n=11

Not at all

Slightly

Somewhat

Very

Extremely

Helpfulness in knowing GMFCS level when setting PT goals (n=127)

Of those that answered yes……

Experiences & Preferences Across GMFCS Levels • Caregivers of children Level I-III compared to Level IV-V

• preferred to learn at the same time as CP diagnosis (X2=6.65, p=0.04)

• were more likely to report having received visual aids (X2 6.28, p=0.04)

• Caregivers of children GMFCS IV-V compared to I-III• found it more difficult to learn their child’s level (X2 =15.40, p=<0.001)

• reported seeing pictures with descriptions more informative (X2= 4.6, p=.03)

No differences between levels

• How helpful it would be to revisit?

• If they had been shown a motor curve?

• How do you feel when you see pictures?

Limitations to our study…

• High level of education

• Most Caucasian

• Technologically savvy

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Summary• Not enough parents are given GMFCS information despite the large number that

think it would be helpful

• Even less know about the curves

• Some prefer not to know

• Therapist tops the list of who they would like to share this information

• Failing to disseminate available knowledge in health care can be lead to over use of unhelpful care or under use of effective care (Berwick 2003)

• How can we do better?

GMFCS & Shared Decision Making

Danielle M Bellows, PT, MHS, PCSdbellows@connecticutchildrens.org

Most of the time,health professionals under-estimate how much information parents/caregivers want

Disclosure InformationAACPDM 72nd Annual Meeting | October 9-13, 2018

Speaker Name: Danni Bellows

Disclosure of Relevant Financial Relationships

I have no financial relationships to disclose.

I will not discuss off label use and/or investigational use in my presentation

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Sharing “bad news” with hope

Gain sense of control re: future

Opens the door to services

Basis for shared strategy & decision making ongoing

Requires honest, accurate info

Shared Decision Making

Prognostic Info

Psychological Support

Diagnosis

Multiple installments of “bad news”

Diagnosis/Referral

Coping/Self-Efficacy

More “Bad News”Coping/Self-Efficacy

Empathy & SupportEmpathy & Support

Empathy & Support

Empathy & Support

SPIKESProtocol for delivering “bad news”

STEP 6 Strategy and Summary

STEP 5 Addressing the Parent’s EMOTIONS

STEP 4 Giving KNOWLEDGE & Information

STEP 3 Obtaining the Parent’s INVITATION

STEP 2 Assessing the Parent’s PERCEPTION

STEP 1 SETTING UP the Interview

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Figure 1. Model of shared decision making and outcomes. PT = physical therapist. Moore CL et al. PTJ.

Case Example: “JJ” 3 y.o. girl

• 0-3 years

PT 1x/mo. SLP 1x/moDev Specialist weeklyNo GMFCS not utilizedDx: Cerebral Palsy diplegia

age 2.5 yrs

• Preschool

Started standing and taking steps in posterior walker 4 weeks prior to O/P eval

Initial Outpatient Evaluation

PMH: Full term, spent 2 months in NICU. Adopted at 6 mos. Generally healthy, no imaging or genetic testing performed.

Motor Skills: • Independent transitions lying to sitting on mat. • Pulls to kneel at tall bench• Pulls to standing holding mother’s hands but not on bench• Maintains standing at bench leaning on BUE and trunk. Attempts to lower

to floor but “crashes”• Belly crawls or scoots on bottom in Right side sitting for mobility• Able to maintain quadraped when placed and creep x 2 cycles at eval

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GMFCS E & R: Between 2 and 4 years

Level 2• Maintains floor sitting, difficult

with both hands free

• Moves from lying to sitting Independently

• Rolls, belly crawls, creeps with reciprocal LE pattern [Scoots]

• Pulls to standing & Cruises

• Walks holding furniture or with device short distances

Level 3• Maintains floor sit with W-sitting

• May need adult assist to assume sitting

• Creep on stomach or crawl without reciprocal LE movement

• Pull to stand and cruise short distances

• Walk short distances with device

GMFCS E & R: Between 2 and 4 years

Level 2• Maintains floor sitting, difficult

with both hands free

• Moves from lying to sitting Independently

• Rolls, belly crawls, creeps with reciprocal LE pattern [Scoots]

• Pulls to standing HHA

• Walks holding furniture or with device

Level 3• Maintains floor sit with W-sitting

• May need adult assist to assume sitting

• Creep on stomach or crawl without reciprocal LE movement

• Pull to stand and cruise short distances

• Walk short distances with device

Intensive PT for 6 mos

Weekly PT x 2 years

GMFCS Level II

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Case example:

11 year old maleMRI periventricular leukomalacia associated with prematurity

What is a good life?

Sled hockeyMovies with friends ReadingWriting stories

Uses loftstrands, manual w/c , not a fan of bracing

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Over the years in and out of therapiesSeveral different therapists

2006 hip films show bilateral subluxation with improved containment with abduction

2007 unchanged hip

2010 worsening right

2011 ankle injury, xrays-osteopenia- no fracture

3/2012 11 yrs PAIN all the time, R hip dislocated, slight scoliosis in supine

Plot score from GMFM for his age = 54.4

Hanna et al 2009 DMCN

54.4 on GMFM Item Set :between 50th

and 75th percentile for age and GMFCS level

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11 years 0 months score 54.4

Using your PT thinking cap……

• As this preteen becomes an adult how do you expect his mobility to progress?

• How would you use the GMFM IS score and motor curves to plan for upcoming surgery and post op rehabilitation?

• Where would you start if you were going to share information with this young teen and his family?

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Available materials to assist with KT•Can child https://canchild.ca/en/diagnoses/cerebral-

palsy/related_resources• GMFCS descriptors/family questionnaires

• Motor Curves

Hanna 2009 DMCN

Newer materials

CP NOW toolkit https://cpnowfoundation.org/

CP Foundation expert videos motor classification http://yourcpf.org/expert-videos/gmfcs/ 2 mins 22 secs

Other visual materials… would these be helpful to families?

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Novak I, Thornton M, Morgan C, Karlsson P, Smithers-Sheedy H, Badawi N. (2016). Truth with hope: ethical challenges in disclosing “bad” diagnostic, prognostic, and intervention information.

In P. Rosenbaum, Ronen G, Racine E, Johannesen J, and Dan B (Ed.), Ethics in Child Health. Principles and Cases in Neurodisability (pp.97-107). London, UK: Mac Keith Press.

Parent Experiences with

GMFCSMichele Shusterman CP NOW

Michele@cpnowfoundation.org

Jen Lyman CP Collaborative

jblyman@mac.com

Disclosure InformationAACPDM 72nd Annual Meeting | October 9-13, 2018

Speaker Name: Jen Lyman

Disclosure of Relevant Financial Relationships

I have no financial relationships to disclose.

I will not discuss off label use and/or investigational use in my presentation

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Jen’s experience

• Who first told me about the GMFCS and when was I told?

• How do I feel about this and how do feel now?

• How do I use this information?

• Have I shared this information with my child?

FINANCIAL DISCLOSUREAACPDM 72nd Annual MeetingOctober 9-13, 2018

Speaker Name: Michele Shusterman, CP NOW nonprofit

1. Disclosure of Relevant Financial Relationships

I have the following financial relationships to disclose:

Consultant for:

Speaker’s Bureau for:

Grant/Research support from: Merz Pharmaceuticals (not related to this research)

Royalties from:

Stockholder in:

Honoraria from:

Employee of:

2. I will not discuss off label use and/or investigational use in my presentation.

Michele’s experience with the GMFCS

• Who first told me about the GMFCS and when?

• How did I initially feel about the GMFCS and how do I feel now?

• How have we used this information?

• Have I shared this information with my child?

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Key Takeaways for Talking to Families

Don’t speak too soon

Share with a purpose that benefits the family

Present as a practical tool, not as a definitive projection

Goal Setting

Pre and Post Operative/Treatment Assessment

Creates a common framework for ongoing discussion

Reflections by Jen & Michele on survey findings

How representative do you think the findings of the study are based on your experience?

In your local community?

The community at large (CP Collaborative, CP Daily Living, CPNOW)?

Q and A

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References

• Bodkin, A.W.; Robinson, C.; Perales, F.P. Reliability and validity of the gross motor function classification system for cerebral palsy. Pediatr. Phys. Ther. 2003, 15, 247–252. Wood, E.;

• Byrnes, A. L., N. W. Berk, M. E. Cooper and M. L.Marazita (2003). "Parental evaluation of informing interviews for cleft lip and/or palate." Pediatrics 112(2): 308-313.

• Dagenais, L., N. Hall, A. Majnemer, R. Birnbaum, F. Dumas, J. Gosselin, L. Koclas and M. I. Shevell (2006). "Communicating a diagnosis of cerebral palsy: caregiver satisfaction and stress." Pediatr Neurol 35(6): 408-414.

• Deville, C., I. McEwen, S. H. Arnold, M. Jones and Y. D. Zhao (2015). "Knowledge Translation of the Gross Motor Function Classification System Among Pediatric Physical Therapists." Pediatr Phys Ther 27(4): 376-384.

• Gray, L., H. Ng and D. Bartlett (2010). "The gross motor function classification system: an update on impact and clinical uti lity." Pediatr Phys Ther 22(3): 315-320.

• Hanna, S. E., P. L. Rosenbaum, D. J. Bartlett, R. J. Palisano, S. D. Walter, L. Avery and D. J. Russell (2009). "Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years." Dev Med Child Neurol 51(4): 295-302.

• Krahn, G. L., A. Hallum and C. Kime (1993). "Are There Good Ways to GiveBad News'?" Pediatrics 91(3): 578-582.

• McCormick, A.; Brien, M.; Plourde, J.; Wood, E.; Rosenbaum, P.; McLean, J. Stability of the gross motor function classification system in adults with cerebral palsy. Dev. Med. Child Neurol. 2007, 49, 265–26

• Moore, PTJ

• Morris, C.; Galuppi, B.E.; Rosenbaum, P.L. Reliability of family report for the gross motor function classification system. Dev. Med. Child Neurol. 2004, 46, 455–460.

• Morris, C. and D. Bartlett (2004). "Gross motor function classification system: impact and utility." Developmental Medicine & Child Neurology 46(01): 60-65.

• Novak, I. (2011). "Parent experience of implementing effective home programs." Physical & occupational therapy in pediatrics 31(2): 198-213.

References• Novak I, Thornton M, Morgan C, Karlsson P, Smithers-Sheedy H, Badawi N. (2016). Truth with hope: ethical challenges in disclosing

“bad” diagnostic, prognostic, and intervention information. In P. Rosenbaum, Ronen G, Racine E, Johannesen J, and Dan B (Ed.), Ethics in Child Health. Principles and Cases in Neurodisability (pp.97-107). London, UK: Mac Keith Press.

• Palisano, R.J.; Cameron, D.; Rosenbaum, P.L.;Walter, S.D.; Russell, D. Stability of the gross motor function classification system. Dev. Med. Child Neurol. 2006, 48, 424–428.

• Palisano, R.J.; Rosenbaum, P.; Bartlett, D.; Livingston, M.H. Content validity of the expanded and revised gross motor function classification system. Dev. Med. Child Neurol. 2008, 50, 744–750.

• Palisano, R.; Rosenbaum, P.; Walter, S.; Russell, D.; Wood, E.; Galuppi, B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev. Med. Child Neurol. 1997, 39, 214–223.

• Rosenbaum, P.L.; Palisano, R.J.; Bartlett, D.J.; Galuppi, B.E.; Russell, D.J. Development of the gross motor function classification system for cerebral palsy. Dev. Med. Child Neurol. 2008, 50, 249–253.

• Rosenbaum, P. The gross motor function classification system for cerebral palsy: A study of reliability and stability over time. Dev. Med. Child. Neurol. 2000, 42, 292–296.

• Rosenbaum, P. L., S. D. Walter, S. E. Hanna, R. J. Palisano, D. J. Russell, P. Raina, E. Wood, D. J. Bartlett and B. E. Galuppi (2002). "Prognosis for gross motor function in cerebral palsy: creation of motor development curves. JAMA 288(11): 1357-1363.

• Starke, M., K. A. Wikland and A. Moller (2002). "Parents' experiences of receiving the diagnosis of Turner syndrome: an explorative and retrospective study." Patient Educ Couns 47(4): 347-354.

• Vargus-Adams, J. N. and L. K. Martin (2011). "Domains of importance for parents, medical professionals and youth with cerebral palsyconsidering treatment outcomes." Child Care Health Dev 37(2): 276-281.

• Wood, E. and P. Rosenbaum (2000). "The gross motor function classification system for cerebral palsy: a study of reliability and stability over time." Dev Med Child Neurol 42(5): 292-296.