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Person-Centered Outcome
Instruments:
PROMIS, Neuro-QOL, and NIH Toolbox
Nan Rothrock, PhD
Feinberg School of Medicine
Northwestern University
June 10, 2014
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Patient-Reported Outcomes (PROs)
• Quantification of symptoms, functional status,
perceptions of health
• Subjective and multi-dimensional
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Why ask patients?
• Best source of information
– Symptoms or health-related quality of life (HRQL): pain, fatigue, distress
– Impact of symptoms on continuing meaningful activities
– Knowledge, attitudes, behavior
– Satisfaction
• Same biological value in 2 pts ≠ same impact
• Variability in correlation b/w clinician and pt reports
• HRQL scores (esp physical fx) predicts survival in many conditions1
1Hahn EA et al (2007) Mayo Clin Proc, 82, 1244-1254
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Carrots and Sticks for PROs
• Era of patient-centeredness
• 3rd level health IT meaningful use incentive program– CMS gathering info on PRO-based performance
measures
• PCORI
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Problems with PRO Measures
• Ceilings and floors
Being John Malkovich
1999
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Measurement CeilingE
ffe
ct S
ize
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Problems with PRO Measures
• Ceilings and floors
• Patient burden
• Royalties/costs
• Psychometric limitations
• Scores w/o interpretation guidelines
Being John Malkovich
1999
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WOMAC
SMFA
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It is impractical to use disease-/condition-
specific instruments
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New Measurement Initiatives
• Patient-Reported Outcomes Measurement
Information System (PROMIS)
• Quality of Life in Neurological Disorders
(Neuro-QOL)
• NIH Toolbox for Assessment of Neurological
and Behavioral Function (NIH Toolbox)
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Approach to Measurement
• Non-disease/condition specific (universal)
• Domains of self-reported health
– NIH Toolbox – also performance measures
• Item Response Theory
• State of the science mixed methods
Desired Aims
• More widely applicable
• More sensitive
• More efficient
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PROMIS
• Item banks – self report physical, mental,
social health
• Use across chronic conditions
• Ages 8 – adult (self report). Age 5 proxy.
• CAT, short forms
• Link scores between measures
www.nihpromis.org
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PROMIS Domain Framework
Self-Reported
Health
Social
Health
Mental
Health
Physical
Health
Symptoms
Function
Affect
Behavior
Cognition
Relationships
Function
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PROMIS Physical Health Item Banks
Pain Behavior
Pain Interference
Sleep-related
Impairment
Sleep Disturbance
Fatigue
Physical Function
Pain Interference
Fatigue
Upper Extremity
Mobility
Asthma Impact
Adult Pediatric
Sexual Function
Physical
Health
Pain Intensity*Also in Spanish &
other languages
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PROMIS Mental Health Item Banks
Mental
Health
Anxiety
Depression
Psychosocial
Illness Impact
Anger
Cognitive Function
Anxiety
Depression
Anger
Adult Pediatric
Alcohol Use,
Consequences,
Expectancies
*Also in Spanish &
other languages
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PROMIS Social Health Item Banks
Social
Health
Ability to
Participate in Roles
& Activities
Emotional Support
Companionship
Informational
Support
Peer Relationships
Adult Pediatric
Instrumental
Support
Satisfaction with
Roles & Activities
Social Isolation *Also in Spanish &
other languages
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In Progress
• Adult
– GI Symptoms
– Self-efficacy for management of chronic disease
– v2.0 Sexual Function
• Pediatric
– Pain Behavior, Quality, Intensity
– Physical Activity
– Experience of Stress
– Subjective Well-being
– Impact of Child Illness on Family
– Family Belongingness
– Global Health
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PROMIS Pain Interference Short Form
Reprinted with permission from the PROMIS Health Organization and PROMIS Cooperative Group
© 2012
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PROMIS T-score
• Mean = 50
– Standard Deviation = 10
• Referenced to the US General Population
• High scores = more of domain
• MIDs = 4-6 points (physical function)1
1Yost et al 2011
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Neuro-QOL
• Item banks – self report physical, mental,
social health
• Supplemental domains specific to targeted
diseases (e.g., stigma)
• Use in chronic neurologic conditions
• CAT, short forms
• Link scores
www.neuroqol.org
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Neuro-QOL Domain Framework
Self-Reported
Health
Social
Health
Mental
Health
Physical
Health
Symptoms
Function
Emotional Health
Cognitive Health
*Also in Spanish
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Neuro-QOL Physical Health Banks
Fatigue
Sleep Disturbance
Mobility
Upper Extremity
Fatigue
Pain
Upper Extremity
Mobility
Adult Pediatric
Physical
Health
*Also in Spanish
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Neuro-QOL Mental Health Banks
Mental
Health
Anxiety
Depression
Emotional & Beh
Dyscontrol
Pos Affect & Well-
being
Anxiety
Depression
Anger
Adult Pediatric
Stigma
Cognitive Function
Communication
Stigma
Cognitive Function
*Also in Spanish
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Neuro-QOL Social Health Banks
Social
Health
Ability to
Participate in Roles
& Activities
Interactions w
Peers
Adult Pediatric
Satisfaction with
Roles & Activities
*Also in Spanish
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Neuro-QOL T-score
• Mean = 50
– Standard Deviation = 10
• Referenced to the US General Population or
Clinical Population
• High scores = more of domain
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NIH Toolbox
• Assessment of neurological and behavioral
function
• Use across diverse populations
• Ages 3-85
• Batteries (CATs, short forms)
– Cognition, Motor, Sensation, Emotion
• Objective tests and survey measures
• English and Spanish
www.nihtoolbox.org
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Cognition Domains
Executive FunctionExecutive Function
AttentionAttention
Episodic MemoryEpisodic Memory
LanguageLanguage
Processing Speed
Processing Speed
Working MemoryWorking Memory
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Motor
Strength
Balance
Locomotion
EnduranceDexterity
Motor Domains
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Sensation Domains
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Emotion Domains
Emotion
Psychological Well-Being
Positive Affect
Life Satisfaction
Meaning & Purpose
Social Relationships
Social Support
Companionship
Social Distress
Positive Social
Development
Stress & Self-Efficacy
Perceived Stress
Self-Efficacy
Negative Affect
Fear
Sadness
Anger
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NIH Toolbox Scores
• PRO and Performance Measures
• Mean = 100 (SD=15)
• Unadjusted Scale Score
• Age-adjusted scale score
• Fully adjusted scale score
– PRO “Raw” scores also available to match PROMIS
– T-score mean = 50 (SD=10)
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Advantages to Newer Instruments
• Improved measurement
– Increased power � reduced sample size
• Adaptability
• Low patient burden
• Comparability
• Royalty-free
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SE = 3.3
rel = 0.90
SE = 2.3
rel = 0.95
0
0.1
0.2
0.3
0.4
0.5
-4 -3 -2 -1 0 1 210 20 30 40 50 60 70
SF-36 10 items
HAQ 20 items
CAT 10 items
PROMIS
Short
Form
20 items
PROMIS
Short
Form
10 items
rheumatoid arthritis
patients US general population
Err
or
Physical Function
Measurement Precision and Range5.0
4.0
3.0
2.0
1.0
0.0
Fries et al 2009
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NeuroQOL Adult Item Bank Information Functions
The shaded areas represent the effective
measurement ranges where a reliability
of roughly .95 is attainable.
Positive Affect and Well-Being
T-score
rel.=.90
rel.=.95
0
20
40
60
80
100
10 20 30 40 50 60 70 80 90
Depression
T-score
rel.=.90
rel.=.95
0
20
40
60
80
100
10 20 30 40 50 60 70 80 90
Anxiety
T-score
rel.=.90
rel.=.95
0
10
20
30
40
50
60
10 20 30 40 50 60 70 80 90
Applied Cog – General Concerns
T-score
rel.=.90
rel.=.95
0
50
100
150
10 20 30 40 50 60 70 80 90
Applied Cog - Executive Function
T-score
rel.=.90
rel.=.95
0
20
40
60
80
100
120
140
10 20 30 40 50 60 70 80 90
Stigma
T-score
rel.=.90
rel.=.95
0
20
40
60
80
100
10 20 30 40 50 60 70 80 90
Lower Extremity Function - Mobility
T-score
rel.=.90
rel.=.95
0
50
100
150
10 20 30 40 50 60 70 80 90
Upper Extremity Fxn – Fine Motor, ADL
T-score
rel.=.90
rel.=.95
0
100
200
300
400
500
600
10 20 30 40 50 60 70 80 90
Ability to Participate in Social Roles/Activities
T-score
rel.=.90
rel.=.95
0
50
100
150
200
250
10 20 30 40 50 60 70 80 90
Satisfaction with Social Roles/Activities
T-score
rel.=.90rel.=.95
0
50
100
150
200
250
300
10 20 30 40 50 60 70 80 90
The shaded areas represent the effective
measurement ranges where a reliability of
roughly .95 is attainable.
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Measures of Responsiveness
• Effect size (ES) = ����������
���� �����
• Standardized response mean
(SRM) = ����������
�������������� �����
• Responsiveness statistic
(RS) = ����������
�������������������������������
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Physical Function Responsiveness –
Effect Sizes
0.29
0.04
-0.51
0.28
0.04
-0.4
-0.6
-0.4
-0.2
0
0.2
0.4
0.6
0.8
1
Better (N=75) Same (N=114) Worse (N=55)
PROMIS-Cancer Physical Functioning SF (10 items)
SF-36 Physical Functioning (10 items)
Yost et al 2011
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Advantages to Newer Instruments
• Improved measurement
– Increased power � reduced sample size
• Adaptability
• Low patient burden
• Comparability
• Royalty-free
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Adaptability
Hung et al 2011
Patients ItemsHigh PF
Low PF
New ItemNew Item
New Item
New ItemNew ItemNew ItemNew Item
New ItemNew Item
New Item
New ItemNew Item
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Advantages to Newer Instruments
• Improved measurement
– Increased power � reduced sample size
• Adaptability
• Low patient burden
• Comparability
• Royalty-free
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Fast Completion Times
• 66 seconds
– Lower Extremity CAT
– Patients scheduled for
foot and ankle surgery1
• 98 seconds
– Physical Function CAT
– Proximal humerus
fractures in patients > 60
years old2
1Hung et al 20122Vrahas under review
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Advantages to Newer Instruments
• Improved measurement
– Increased power � reduced sample size
• Adaptability
• Low patient burden
• Comparability
• Royalty-free
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5035 40 45 55 60 65
PROMIS Fatigue Across Five Clinical Conditions
Average for General Population
COPD Stable (B) COPD Exacerbation (B)
HF Pre-transplantHF Post-transplant
Exacerbation to Stable
Depression
(B)
Depression
(1 mo)
Depression
(3 mos)
Cancer
Chemo
(B)
Cancer
w/ benefit
(2 mos)
Back Pain
(B)
Back Pain
(1 mo)
Back Pain
(3 mos)
Heart Failure
N = 64
Cancer
N = 310
Depression
N = 114
Back Pain
N = 229
COPD
N = 125
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PROsetta Stone
• Linking tables
– Legacy instruments to PROMIS metric
• BPI, CES-D, FACIT, HAQ,
SF-36, PHQ-9, etc
• www.prosettastone.org
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Advantages to Newer Instruments
• Improved measurement
– Increased power � reduced sample size
• Adaptability
• Low patient burden
• Comparability
• Royalty-free
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How Do I Choose a Measure?
• Population
• Age
• Domains
– See definitions, review items
– PROMIS Scoring Manuals
• Aims of measurement (e.g., screening, primary outcome)
– Precision
• Completion time
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To Learn More
• www.nihpromis.org
• www.neuroqol.org
• www.nihtoolbox.org
• Video tutorials
• Publications
• Manuals
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Acknowledgements
• This work was supported by funding from the
NIH (U54 AR 057943 , U54 AR 057951, U01 AR
052177) and AO Foundation
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Thank you!