Participation - Rehabilitation Research Center (RRC)

Transcription

The Importance and
Measurement of Participation
After TBI: New Instruments
Gale Whiteneck, PhD, FACRM
February 25-26, 2011
The Santa Clara Valley Brain Injury Conference
Presentation Outline
•
•
•
•
•
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The concept of Participation
The measurement of Participation
The development of PART-O
The scoring of PART-O
Participation enfranchisement
Conclusions
Conceptualizing and Measuring
Participation
Whiteneck G, Dijkers MP.
Difficult to measure constructs: conceptual
and methodological issues concerning
participation and environmental factors.
Arch Phys Med Rehabil 2009;
90(11 Suppl 1):S22-35
WHO International Classification of
Functioning, Disability and Health
(ICF)
Health
Condition
Body Structure
And Function
Activity
Environmental
Factors
Participation
Personal
Factors
Participation
ICF: Involvement in Life Situations
Health
Condition
Body Structure
And Function
Activity
Environmental
Factors
Participation
Personal
Factors
What is Participation?
• Performance at the societal level
• Fulfilling social roles
– Student, worker, homemaker
– Friend, spouse
– Citizen, neighbor
• Being an active, productive member of
society, well integrated into family and
community life
Why is Participation Important?
• A major construct in all models of disability
• It is the ultimate goal of rehabilitation
• It is what people with disabilities and their
families are most interested in
• Full participation in society is the goal of
the Americans with Disabilities Act
• It is likely the primary goal of people at this
conference
Why is it Hard to Measure
Participation?
• There are individual preferences about
how to participate
• There is no list of participation items that
are common to all
• People with disabilities don’t always want
to be judged based on able-bodied norms
Why is it Hard to Measure
Participation?
ICF Blurred Activity & Participation
Health
Condition
Body Structure
And Function
Activity (Capacity in Standard Environment)
Participation
Activity
Participation (Performance in Real World)
Environmental
Factors
Personal
Factors
ICF Chapters:
Activity and Participation
1.
2.
3.
4.
5.
6.
7.
8.
9.
Learning and applying knowledge
General tasks and demands
Communication
Mobility
Self-care
Domestic life
Interpersonal interactions and relationships
Major life areas
Community, social and civic life
Need to Conceptually
Differentiate Activity & Participation
Model of Functioning and Disability
Health
Condition
Body Structure
And Function
Activity
Environmental
Factors
Participation
Personal
Factors
Activity
Individual Level
Participation
Societal Level Role Fulfillment
Activity
Individual Level
Performed Alone
Participation
Performed with Others
Activity
Individual Level
Performed Alone
Simple
Participation
Complex
Activity
Individual Level
Performed Alone
Simple
Related to Impairment
Participation
Complex
Related to Quality of Life
Activity
Individual Level
Performed Alone
Simple
Less Environment Dep.
Participation
Complex
More Environment Dep.
Activity
Individual Level
Performed Alone
Simple
Medical Model of Disability
Participation
Complex
Social Model of Disability
Activity
Individual Level
Performed Alone
Simple
Focus of Rehab
Participation
Complex
Focus of Consumers
Activity
Individual Level
Performed Alone
Simple
Focus of Rehab
Assessed in Hospital
Participation
Complex
Focus of Consumers
Assessed in Community
Activity
Individual Level
Performed Alone
Simple
Focus of Rehab
Clinician Assessment
Participation
Complex
Focus of Consumers
Self or Proxy Report
Activity
Individual Level
Performed Alone
Simple
Focus of Rehab
Clinician Assessment
Not Always Possible
Participation
Complex
Focus of Consumers
Self or Proxy Report
Always Theoretically Possible
Conceptual Participation
Summary
• Performance at the societal level
• Defined by the fulfillment of social roles
• Measured by the degree to which an
individual is an active, productive member
of society, well integrated into family and
community life
How is Participation Measured
• Compared to activity, participation measurement
is more recent, less frequent, and less well
developed
• A burgeoning interest in participation has
accompanied the adoption of the term by ICF
• A plethora of new participation instruments have
been or are being developed
• Both objective and subjective measurement tried
• But there is no agreement on what strategy or
instrument to use
PART-O
Whiteneck GG, Dijkers MP, Heinemann AW,
Bogner JA, Bushnik T, Cicerone KD,
Corrigan JD, Hart T, Malec JF, Millis SR.
Development of the Participation
Assessment With Recombined Tools–
Objective for use after traumatic brain injury.
Arch Phys Med Rehabil in press.
TBI Participation Module Purpose
• Phase I: To use items from existing
participation instruments to develop a new
and improved objective measure of
participation
• Phase II: To develop a subjective
assessment of participation to complement
the objective measure
Background: Phase I
• Multiple measures of participation have been
developed, but there is no consensus to adopt any
one measure as the standard
• All current measures of participation have
psychometric shortcomings
• The primary developers of four promising and
prominent tools were members of the Participation
Module Study Group and agreed to offer the items
in their measures for comparative testing with the
goal of selecting the best items from the measures
to form a new psychometrically sound measure of
participation
Four Participation Measures
• Craig Handicap Assessment and Reporting
Technique (CHART) Whiteneck et. al.
• The Participation Objective Subscale of Living
Life After TBI (LLATBI-PO) Gordon et. al.
• The Community Integration Measure Version
2 (CIQ-2) Dijkers et. al.
• The Mayo Portland Participation Index (M2PI)
Malec et. al.
The Item Pool
• Removed duplicate items from the 4 tools
• Resulted in 77 items with many items covering
similar content, but with different wording and
response scales
• Reordered items to simplify administration,
attempting to keep similar content and response
sets together
Methods
• Developed a computer assisted telephone
interview (CATI) with on-line syllabus
• Administered item pool to 400 people enrolled in
the TBI Model Systems National Database
• As an addition to routine FORM II follow-up
• When they crossed their 1st, 2nd, 5th, 10th, or 15th
anniversary of injury
• Rasch analysis to identify the best items from
the pool to use in a new instrument
TBI Model System Participation
Module Members
• Craig Hospital, Colorado (Phase I Lead) – Gale Whiteneck
• Mt. Sinai Hospital, New York (Phase II Lead)
– Marcel Dijkers, Wayne Gordon, Margaret Brown
• Mayo Clinic, Minnesota – James Malec
• Ohio State University – John Corrigan, Jennifer Bogner
• JFK Johnson Rehabilitation Institute, New Jersey
– Keith Cicerone
• University of Alabama at Birmingham – Thomas Novack
• Santa Clara Valley Medical Center, California
– Tamara Bushnik
• Moss Rehabilitation Research Institute, Pennsylvania
– Tessa Hart
• Rehabilitation Institute of Chicago, Illinois – Allen Heinemann
The Best Items to Measure
Participation – Initial Decisions
• Before selecting items, some questions were
dropped on conceptual grounds
– Items from the MP2I were dropped because they
were originally designed to be rated by clinicians
rather than subjects, and they were answered by
the interviewers in this study
– Some of the CIQ-2 items were dropped because
they asked for a subjective rating of proportional
effort rather than objective frequency
The Best Items to Measure
Participation
• Rasch analysis was used in combination
with conceptual content areas of
participation to select the best items
• Within each topic area of participation, the
items with the best overall fit that captured
the full range of participation were selected
• A total of 24 items were selected to form
the new PART – Objective measure
Psychometrics of PART-O
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•
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Person separation = 2.47
Person reliability = .86
Item spread = 4.25 logits
Item separation = 11.36
Item reliability = .99
Items well targeted on sample
Only one misfitting item
24 Items of PART – O
• Hours per week in
– Work
– School
– Active homemaking
– Home maintenance
– Volunteering
– Public transportation
– Driving/riding in car
• Times per month you
– Go to movies
– Eat in restaurants
– Go shopping
– Attend sports as spectator
– Attend religious services
– Engage in sports or exercise
– Participate in a club/organization
– Give support to others
• Times per week you
– Socialize with friends
– Socialize with family
– Use the internet to
communicate
• Days out of house per week
• Spend days in bed to beyond
neighborhood
• Do you live with a spouse or
SO?
• Are you involved in an intimate
relationship?
• Do you have a close friend in
whom you confide?
• Have you taken adult education
classes in the last 3 months?
PART Correlations with Other
Participation Measures
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CHART = .82
CIQ-2 = .83
POPS = .79
MP2I = .69
PART Correlations with Severity
and Other Measures
• Follow-up measures
• Injury severity
• GCS
• PTA
= ns
= ns
• Discharge measures
• DRS
= -.32
• Motor FIM
= .36
• Cognitive FIM = .33
•
•
•
•
•
•
DRS
Motor FIM
Cognitive FIM
GOSE
Sup. R. S.
SWLS
= -.70
= .59
= .61
= .61
= -.64
= .34
Participation Module Phase I
Accomplishments
• Identified a more parsimonious set of
objective items from existing instruments
with good psychometric properties to better
measure participation after TBI
• Recommended standard response
categories
• PART-O was added to Form II this cycle
• Manuscript in press at Archives
PART-O Scoring
Bogner J, Whiteneck G, Corrigan J, Lai J-S,
Dijkers MP, Heinemann AW.
Comparison of scoring methods
for the Participation Assessment with
Recombined Tools-Objective.
Arch Phys Med Rehabil, in press.
Considerations in the
• Some stakeholders need objective
measures of participation to evaluate
the effectiveness of interventions, as
well as service or policy needs.
• Norms may be helpful for identifying
individual and constituency needs
• Subjective measures of participation are
important, but need to be separate
• The ways in which people participate
may be influenced by multiple factors,
with personal preference being one of
the key factors.
• The domains of participation may differ
in relative importance between
stakeholder groups as well as
individuals
• “More” participation is not necessarily
“better” participation, it may only indicate
that the person is very busy, but not
necessarily happier, healthier, or more
satisfied with his or her community
participation.
• A balance among domains of
participation may be key to satisfaction
Steps in Developing Scoring for
PART-O
• PART-O items administered to three groups
of people under age 65
– 220 people with SCI, TBI, stroke, or other
disabilities recruited from graduates of 3
rehabilitation facilities in CO, IL, and OH
– a random digit dialed sample of Coloradoans
• 366 who self-reported limitations indicative
of disability
• 284 who did not report limitations
PART-O
• Converted all items to 0-5 scales
• Most already 0-5
• One 0-4 item converted to 0, 1.25, 2.5,
3.75, and 5
• Dichotomous no/yes items converted to 0/5
PART-O
• Asked both people with disability and
researchers to bin items into 1 of 3 domains:
productive, social, or community participation
• Retained items with strong consensus among
all, into which domain the item belonged
• Calculated domain scorea and retained items
where there were only high item-domain
correlations with the item’s assigned domain
• Verified dropping items without consensus
17 Items of PART-O for Scoring
• Productivity
• Social
• Hours per week in
– Work
– School
– Active homemaking
• Times per week you
– Socialize with friends
– Socialize with family
– Use the internet to
communicate
• Times per month
– Give support to others
• Do you live with a spouse or
SO?
• Are you involved in an intimate
relationship?
• Do you have a close friend in
whom you confide?
• Out and about
• Days out of house per week
• Times per month you
– Go to movies
– Eat in restaurants
– Go shopping
– Attend sports as spectator
– Attend religious services
– Engage in sports or exercise
PART-O Productivity Item
1. In a typical week, how many hours do
you spend working for money, whether in
a job or self-employed?
 (0) None, (1) 1-4 hours, (2) 5-9 hours,
(3) 10-19 hours, (4) 20-34 hours,
(5) 35 or more hours
you spend in school working toward a
degree or in an accredited technical
training program, including hours in class
and studying?
 (0) None, (1) 1-4 hours, (2) 5-9 hours,
(3) 10-19 hours, (4) 20-34 hours,
you spend in active homemaking,
including cleaning, cooking and raising
children?
 (0) None, (1) 1-4 hours, (2) 5-9 hours,
(3) 10-19 hours, (4) 20-34 hours,
PART-O Social Item
4. In a typical week, how many times do you
socialize with friends, in person or by
phone?
 (0) None, (1) 1-4 times, (2) 5-9 times,
(3) 10-19 times, (4) 20-34 times,
(5) 35 or more times
PART-O Social Item
socialize with family and relatives, in
person or by phone?
 (0) None, (1) 1-4 times, (2) 5-9 times,
(3) 10-19 times, (4) 20-34 times,
PART-O Social Item
give emotional support to other people,
that is, listen to their problems or help
them with their troubles?
 (0) None, (1) 1-4 times, (2) 5-9 times,
(3) 10-19 times, (4) 20-34 times,
PART-O Social Item
use the Internet for communication, such
as for e-mail, visiting chat rooms or
instant messaging?
 (0) None, (1) 1-4 times, (2) 5-9 times,
(3) 10-19 times, (4) 20-34 times,
PART-O Community Item
8. In a typical week, how many days do you
get out of your house and go
somewhere?
 (0.00) None, (1.25) 1-2 Days,
(2.50) 3-4 Days, (3.75) 5-6 Days,
(5.00) 7 Days
9. In a typical month, how many times do
you eat in a restaurant?
 (0) None, (1) 1-4 times, (2) 5-9 times,
(3) 10-19 times, (4) 20-34 times,
10.In a typical month, how many times do
you go shopping?
 (0) None, (1) 1-4 times, (2) 5-9 times,
(3) 10-19 times, (4) 20-34 times,
you engage in sports or exercise outside
your home?
 (0) None, (1) 1-4 times, (2) 5-9 times,
(3) 10-19 times, (4) 20-34 times,
you go to the movies?
 (0) None, (1) 1 time, (2) 2 times,
(3) 3 times, (4) 4 times,
(5) 5 or more times
you attend sports events in person, as a
spectator?
 (0) None, (1) 1 time, (2) 2 times,
(5) 5 or more times
you attend religious or spiritual services?
 (0) None, (1) 1 time, (2) 2 times,
(5) 5 or more times
PART-Social Item
15.Do you live with your spouse or
significant other?
 (0) No
 (5) Yes
PART-Social Item
16.Are you currently involved in an ongoing
intimate, that is, romantic or sexual,
relationship?
 (0) No
 (5) Yes
PART-Social Item
17.Not including your spouse or significant
other, do you have a close friend in whom
you confide?
 (0) No
 (5) Yes
PART-O
• Each of the three domain scores is the
average of the non-missing items in the
domain (assuming majority present)
• The PART-O Averaged Total Score is the
average of the three domain scores
Steps in Developing the
PART-O Balanced Total Score
• Based on the concept that a balanced life is
a better life, the PART-O Balanced Total
Score was created.
• The two people below would get the same
PART-O Average Total Score, but not the
same PART-O Balanced Total Score
A. Prod = 3, Soc = 3, Com = 3: Average = 3
B. Prod = 1, Soc = 5, Com = 3: Average = 3
Steps in Developing the
PART-O Balanced Total Score
• PART-O Balanced Total Score equals the
PART-O Average Total Score minus the
standard deviation of the three domain scores
• The Balanced Total Score for the two people:
A. P=3, S=3, C=3: Balanced Tot Score = 3-0=3
B. P=1, S=5, C=3: Balanced Tot Score = 3-1.4=1.6
Since the Standard Deviation of 1, 5, and 3 =1.4
SD= (√((1-3)2+(5-3)2+(3-3)2))/(3-1)
SD= √(4+4+0)/2 = 2.8/2 =1.4
Summary of PART-O Scoring
• 17 items selected
• In 3 domains: productive, social, and
community participation
• 3 domain scores (average of items in each)
• PART-O Average Total Score = average of
the three domain scores
• PART-O Balanced Total Score = Average
Total Score minus SD of 3 domain scores
Summary of PART-O
• Brief, easily administered 17 item measure
of objective participation
• Two scoring systems: one traditional and
one emphasizing the importance of a
balanced life
• Non-disabled norms for comparison
• However, it only assess objective
frequency counts of a fixed participation list
• It is not a subjective measure considering
individual preference
Participation Enfranchisement
• Heinemann AW, Lai J, Hammel J,
Corrigan JD, Bogner J, Whiteneck G.
Measuring participation enfranchisement.
Arch Phys Med Rehabil, in press.
Conceptual Concerns
• A fundamental reconsideration of the
conceptual basis of participation is needed
with input from diverse stakeholder groups
• Participation should be understood and
measured within the context of personal
choices and activity-level factors
69
Study Objectives
1. Operationalize indicators of participation
from the perspective of rehabilitation
consumers, caregivers, providers, payers
and policy makers gathered in focus groups
2. Develop a community participation measure
that incorporates stakeholder perspectives
and is applicable to people with and without
disabilities
70
Stakeholders
• Rehabilitation
Consumers
– Traumatic Brain Injury
– Stroke
– Spinal Cord Injury
• Primary Caregivers
• Rehabilitation Providers
• Payers
– Private Insurers
– State Medicaid staff
• Policy Makers
– Congressional
Legislative Aides
– Health Subcommittee
– State of Illinois
Human Service Staff
– Physicians
– Occupational and physical
therapists
• Total Participants
– Psychologists
– Speech therapists
– 18 groups
– Social workers
– 138 participants
– Vocational counselors
71
Focus Group Questions
• What does the word “participation” mean to
you?
– Probe: What does it mean “to participate”
– Why is participation important to you?
• What areas of everyday life are most
important to you?
• What roles do you participate in?
• What roles define you and who you are as a
person?
72
Focus Group Quotes by Stakeholders
Consumers
“It means to make some sort of contribution in life”
“Working and living”
“Just being able to do the things that you enjoy”
Caregivers
“Just doing what you want to do”
“Being able to go to the store, to school, being able to do all of the
things that normal people do”
Providers
“It goes beyond just daily living activities”
“What you want when you want with who you want”
“You are seen as having something to give”
Payers
“Allowed to fail, take on challenge”
“Lack of information can be as isolating as any physical barrier”
Policy
Makers
“Just the stuff we do and take for granted”
73
Enfranchisement (Values)
• Mobility
• Opportunity and
choice
• Active Engagement
• Control
74
•
•
•
•
Having an Impact
Supporting Others
Citizenship
Inclusion
Community Participation Index
• Includes traditional frequency items,
satisfaction with participation items, and
value statements rated on a true, mostly
true, mostly false, false scale
• Administered to 326 people with SCI, TBI,
and stroke, and 461 Coloradoans with
self-reported activity limitations and 451
not reporting limitations
Enfranchisement Items
1. I get out of my house to do the activities that I choose.
2. I have choices about the activities I want to do.
3. I can go out and have fun.
4. I am able to pursue my dreams and desires.
5. I can get out and about whenever I choose.
6. I feel that I am a part of my community.
7. I contribute to the general well-being of my community.
8. I have control over what I do and how I spend my time.
9. I do things that improve my community.
Enfranchisement Items
10. I can get together with people when and where I want.
11. I spend time helping others.
12. I have the freedom to make my own decisions
13. I have a say on decisions in my community.
14. Other people count on me.
15. My community respects me the way that I am.
16. I feel valued as a member of society.
17. I am treated equally.
18. I count as a person in society.
19. I take responsibility for my own life.
Rating Scale Analysis Summary
• Enfranchisement items
– Retained – All 19 items
– Person separation reliability = .77
– Person map
• Mistargeted
• Ceiling effect
– Item statistics
• No misfitting items
– Rating scale
• Needs revision
78
Enfranchisement Conclusions
• Community participation is not a hierarchical,
unidimensional construct
• Personal preferences determine individual’s
participation profile
• Sense of enfranchisement is probably a
unidimensional construct and can be measured
reliably
• CPI provides items that could help define an
index of participation
79
Concluding Thoughts
• Some agreement on the conceptual arena
of participation including social roles and
ways of participating influenced by personal
preference, often with common examples
• Many suggest domains of participation
including productive, social, and community
participation
• Less agreement on whether participation
should be measured objectively or
subjectively; many say both
Concluding Thoughts
Many measurement options from
very objective to very subjective:
•
•
•
•
Frequency counts (CHART, PART-O)
Difficulty participating (PM-PAC)
Importance and satisfaction (POPS)
Values endorsement (Enfranchisement)
Concluding Thoughts
Mayo-Portland Participation Index (M2PI)
• Highlighted at this conference by Dr. Malec
• Part of an excellent comprehensive TBI
evaluation system with pooled information
management providing comparative data
• TBI specific content that can be rated by the
person with TBI, family, and professionals
• Includes physical and cognitive activities as
well as participation
Concluding Thoughts
• PART-O is a substantial amalgamation and
refinement of previous objective measures
of participation using frequency counts
• Developed in TBI; tested in TBI, SCI, stroke,
and the general population; promising
across disabilities (with non-disabled norms)
• May fill the need for a psychometrically
sound objective measure of participation
Concluding Thoughts
• Enfranchisement is a new, very subjective
conceptualization of participation that
emerged from stakeholder focus groups
• Refinement of the enfranchisement items is
underway with promising psychometrically
sound measurement
• Evaluating strength or relationships among
objective participation, enfranchisement,
and quality of life will be instructive
Concluding Thoughts
• Assessing importance of and satisfaction with,
as well as frequency of, participation items
holds promise for including personal
preference in participation measurement:
– Importance weighted performance measures
– Importance weighted satisfaction scores
• But importance and frequency seem highly
related and new tools beyond POPS have
been slow to emerge
Final Concluding Thoughts
• It is critical to conceptually and empirically
differentiate activities and participation in the
WHO ICF Model of Disability
• Continued development of participation
measures is needed
• At least until the relationship between
objective and subjective participation is
known, the measures should be kept separate
Questions and Discussion
For further information:
• Read the upcoming April issue of Archives
• Email [email protected]

Participation - Rehabilitation Research Center (RRC)

Transcription

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