Download Brain Injury Services Outcomes

Conducting Research
in a TBI Population
By: Kyle Haggerty, Ph.D.
Preeti Sunderaraman, M.S.
Nicole K. De Luca, M.A.
Learning Objectives
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Why Research in TBI is Needed
Measuring Outcomes in TBI
The Population We Serve at Bancroft
Difficulties
Research Currently being Conducted at
Bancroft
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Why Traumatic Brain Injury
Research is Needed
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Traumatic Brain Injury
Traumatic Brain Injury (TBI): cerebral damage
that occurs after birth, and is not directly related
to a developmental disorder or a progressive
damaging of the brain. Traumatic brain injury
refers to a specific form of acquired brain injury
that is the result of a sudden trauma.
Classification of TBIs
Traumatic brain injuries are classified by severity into
one of three categories: mild, moderate, or severe.
Classification into one of the three categories is
usually based upon the following four criteria.
Glasgow Coma score
Duration of loss of consciousness
Duration of alteration of consciousness
Severity of post-traumatic amnesia
Some Stats
In 2010, about 2.5 million emergency department (ED)
visits, hospitalizations, or deaths were associated with
TBI—either alone or in combination with other
injuries—in the United States.
TBI contributed to the deaths of more than 50,000 people.
62.3 per 100,000 adults age 15 and over are living in the
community with impairments due to brain injury.
Continued
Twice as many males are affected by TBI as
females.
Ages 15-24 and >60 are at the highest risk.
Individuals in rural areas are more at risk.
Causes
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Costs
Costs of traumatic brain injury in the U. S. have been
estimated to be $48.3 billion annually.
Survivors cost $31.7 billion.
Fatalities cost $16.6 billion.
Lifetime cost per person is about $4 million.
About 75% of patients with severe TBI do not return
to work.
About 66% require assistance with daily living.
90% report dissatisfaction with social integration.
Common Symptoms
Headaches
Memory Deficits
Word Finding Difficulty
Fatigue
Changes in Emotion
Changes in Sleep
Impulsiveness
Concentration
TBI and Mental Illness
Prevalence rates for psychiatric disorders are high
after TBI.
Depression rates have been reported in 14 to 77% of
patients
Substance abuse 5 to 28%
PTSD 3 to 27%
Other anxiety disorders 3 to 28%
TBI and Quality of Life
Life satisfaction appears to steadily decline after an
individual experiences a brain injury.
Injury severity has not been found to be
significantly correlated with measures of life
satisfaction.
Continued
Many variables have been shown to correlate with
life satisfaction in individuals who have suffered
TBIs.
Marital Status
Employment
Problem Solving
Executive Functioning
Measuring Outcomes
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Outcome Measures Used
What measures are used depends on the setting
(acute of long-term rehabilitation)
Acute settings frequently use:
Functional Independence Measure (FIM): An 18-item scale used to assess the patient's
level of independence in mobility, self-care, and cognition
Glasgow Outcome Scale (GOS)
Disability Rating Scale (DRS): Measures general functional changes over the course of
recovery after TBI
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What about long-term?
• No measures are universally agreed upon
• Some measures frequently used include:
• Mayo Portland Adaptability Inventory (MPAI)
• Supervision Rating Scale (SRS)
• Community Integration Questionnaire (CIQ)
• Disability Rating Scale (DRS)
• Independent Living Scale (ILS)
And many more
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Standardized Measures
Bancroft is a member of the Pennsylvania Association of Rehabilitation
Facilities (PARF), a collaborative data collection and outcomes
measurement project designed to:
• Enhance clinical evaluation
• Verify the treatment provided produces the desired outcomes
• Allow providers to make better decisions regarding program/service
components
• Provide aggregate data to funders to assist with evaluation of needs and
services
In conjunction with our PARF colleagues, we utilize three standardized
outcome measures: Mayo-Portland Adaptability Inventory (MPAI-4,
Malec, J., 2005); Supervision Rating Scale (SRS, Boake, C., 2001); and most
recently the World Health Organization Quality of Life Index
(WHOQOL-BREF, WHO, 2004). A project to develop standardized
satisfaction surveys is in progress.
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Supervision Rating Scale
• Measures the level and type of supervision that
a patient/subject receives from caregivers
• The SRS rates level of supervision on a single
13-point ordinal scale
• SRS ratings have shown consistent relationships
with type of living arrangement and with
independence in self-care and instrumental
ADL
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WHOQOL-BREF
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The WHOQOL-BREF instrument comprises 26 self-reported
items, which measure the following broad domains: physical
health, psychological health, social relationships, and
environment
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Research has found that the WHOQOL-BREF has strong
psychometric properties
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Raw scores on the measure can range from 24 to 120, with
higher scores being indicative of a higher quality of life.
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MPAI-4
MPAI-4: Ability Index
• Mobility
• Use of hands
• Audition
• Vision
• Motor speech
• Dizziness
• Verbal
Communication
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• Nonverbal
Communication
• Memory
• Attention/
concentration
• Fund of information
• Novel Problem-solving
• Visuospatial abilities
Continued
MPAI-4: Adjustment Index
• Anxiety
• Depression
• Irritability, anger,
aggression
• Pain/headache
• Fatigue
• Sensitivity to mild
symptoms
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• Inappropriate social
interaction
• Impaired self-awareness
• Family/significant
relationships
• Initiation
• Social contact
• Leisure activities
Continued
MPAI-4: Participation
Index
• Initiation
• Social contact
• Leisure activities
• Self care
• Residence
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• Transportation
• Employment
• Managing Money
MPAI-4 Database Project
• Initiative to develop an electronic national
database for MPAI-4 scores
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Would allow different rehab centers to combine data to
study changes in outcomes over the course of post-acute
rehabilitation
Difficulties
• What outcomes are the most
significant/important?
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The goals of rehabilitation are individualized making it
difficult to identify a universal outcome
• The complexity of the cases makes it difficult
to make causal references
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Substance abuse, multiple treatment modalities, social
support, etc.
Continued
Questions about the accuracy of self-report
• Some researchers have found that in people
who have suffered TBIs, self-report is not a
reliable measure.
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Language deficits
Awareness
Abstract Reasoning
Memory
Who We Serve
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Who We Serve
Age:
Age at Injury
Age Breakdowns
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Teens
20s
30s
40s
30
25
5%
17%
20
35%
15
14%
10
5
29%
0
Teens
20s
30s
40s
50s
60s
70s
50s
Who We Serve
Gender and Ethnicity
Ethnicity
Caucasian
Black/Afr. Amr.
2%
16%
82%
Other
Who We Serve
Types of Injuries
Effectiveness
Quality of Life (WHOQOL-BREF)
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Effectiveness
(MPAI-4)
22.5
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21.5
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20.5
2011
20
2012
19.5
2013
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18.5
18
17.5
60
Abilities
55
50
45
40
Total
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30
25
20
2011
2012
2013
Adjustment
Participation
Recent Research
Accepted Presentations:
Eichenbaum, E., De Luca, N., Breslin, J., Brownsberger, M., Haggerty, K., Lindgren, K.
(2014, Febuary). Post Traumatic Growth and Rehabilitation Outcomes in Traumatic Brain
Injury. Poster submitted for presentation at Division 22’s Annual Rehabilitation
Psychology Conference, San Antonio, TX.
Haggerty, K., & Arigo, D. (2014, March). Social Comparison and Psychosocial Functioning in
Severe Traumatic Brain Injury: A Pilot Study, Poster accepted for presentation at the 72nd
Annual Scientific Meeting of the American Psychosomatic Society, San Francisco, CA.
Halpern, J., Haggerty, K., Lindgren, K., & Boyer, C. (2014, March). The Relationship between
Self and Team reports of Rehabilitation Outcomes in Traumatic Brain Injury. Accepted for oral
presentation at the 10th World Congress on Brain Injury, San Francisco, CA.
Sunderaraman, P., Haggerty, K., Zamzow, J., Lindgren, K., Ph.D. (2014,
February). Exploring The Relationship Between Money Management and, Mood and Cognition in
People with Chronic Traumatic Brain Injury. Poster accepted for presentation at the
42nd Annual Meeting of the International Neuropsychological Conference (INS) to be
held in Seattle, WA.
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Difficulties
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Challenges
• Significant variability between clients
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Limited Power
• Accuracy of self report measures?
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In general the MPAI-4 is useful for detecting significant long-term
changes in functioning. Not as useful as an immediate measure of
progress
WHOQOL-BREF has robust findings, but still suffers from concerns
over self-report.
Current Research
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An Examination of the
Role of Self-Compassion
in a Traumatic Brain Injury
Sample
Nicole K. De Luca, M.A.
May 22, 2013
“Y” Shaped Model of Process and
Outcome in TBI/ABI Rehabilitation
Self-Discrepancy & TBI/ABI
Following a TBI/ABI - “loss of self” (Nochi, 1998)
Memory deficits
Family/friends/community views
Neurological changes (Persinger et al., 1993)
Perceived identity change between pre- and post
injury selves
Higher rates of depression and anxiety
Lower quality of life (Carroll & Coetzer, 2011, Vickery, Gontkovsky, & Caroselli,
2005)
TBI/ABI and Self-Compassion
One single case study examined compassion-focused therapy
(CFT) (Ashworth, Gracey & Gilbert, 2011)
24-year old female with a severe TBI
Significant anxiety, depression and social withdrawal
CFT; increasing the ‘soothing system’ and decrease the
patients threat system
Current Study
Self-compassion as a tool in TBI/ABI rehabilitation treatment?
Some support for CFT in TBI/ABI samples (Ashworth, Gracey & Gilbert, 2011)
Current exploratory study aims to:
Replicate findings that self-compassion is related to positive psychological
outcomes in a TBI/ABI sample
Address this question by examining self-compassion in the context of the
“Y-shaped” model (Gracey et al., 2009)
Challenges
Have to exclude individuals injured before the age
of 12 (identity development)
Limited Power
Self-Compassion Scale is once again self-report
and 8th grade reading level
Financial Decision Making
and Acquired Brain Injury.
Preeti Sunderaraman, MS
PhD Candidate
Drexel University
Financial Decision Making
Examples:
Difficulty with bill payments
Completing taxes
Repaying mortgages
Balancing the checkbook
Banking
Making timely and appropriate purchases
Managing disability benefits
Budgeting
Operating the ATM machines
Why study this in ABI?
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~30% have difficulty managing
Cause emotional problems – e.g., depression
Impacts functioning in community
Unfulfilled responsibilities ,and if capable of managing them
If requires a financial guardian
Vulnerable to exploitation
Competency vs. Capacity
Competency
• Legal construct
• Varies depending on state statutes
E.g., North Carolina versus Nevada
Capacity
• Non-legal construct
• Clinical decision-making
• Guardianship evaluations
• No standard guidelines to assess
Why are there no standard guidelines?
Reasons for lack of standard guidelines:
• Complex & multifaceted
• Depends on several cognitive abilities
• Variability within this construct’s dimension– manage one versus several
estates
• Ongoing efforts to develop models and determine neuropsychological basis
for this construct
E.g., Marson and colleagues (2002, 2008, 2010)
Consensus
• Variability across domains
• Variability within each domain
• Nature and range of impairments may vary by
population
Few tools to assess
• Financial Capacity Instrument (FCI; Marson et al, 2000)
• Measure of Awareness of Financial Skills (MAFS; Cramer et al,
2004)
• Financial Decision Making Questionnaire (FDMQ; Cole &
Denburg, 2008)
• Financial Competence Assessment Inventory (FCAI; Kershaw &
Webber, 2008)
Given the research topic, some practical
difficulties in conducting research with TBI
individuals are:
I. Nature of TBI
• What population of TBI should I recruit – mild, moderate, severe? A
combination of 1 or 2?
• At what stage of recovery should they be in – 1 year, 2 years, or more than
that?
• Should they be inpatients or outpatients?
• Should they be employed or not?
II. Recruitment Issues
Should people be recruited from outpatient or from the community? From one
site or several sites? Via phone or internet or flyers posters at various centers?
III. Inclusion/Exclusion criteria – related to:
• age (aging issues for the elderly)
• number of years received rehabilitation services
• presence of psychiatric issues, including depression
• type of medications
• type of medical complications (e.g., seizure disorder)
• type of physical impairments (e.g., apraxia)
• number of previous injuries – physical and cognitive
• presence of developmental disabilities
IV. Selection of measures
To assess money management skills – subjective v/s. objective measures
V. Design
Cross-sectional or longitudinal:
time and money considerations
VI. Sample size
~30 or more than
VII. Compensation:
Amount of monetary compensation – may differ depending on the setting from
which they are recruited.
Thank You!
Questions?
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