Measures for Social and
Behavioral Determinants of
Health
The view provided by two large National Institutes of Health
sponsored development efforts
Richard C. Gershon, PhD.
Northwestern University
Different, but the Same
The NIH seeks proposals for innovative approaches to
measuring patient-reported outcomes (PROs). . . across a
wide variety of chronic disorders and diseases.
Develop and test a large bank of items measuring PROs
Create a computerized adaptive testing system that will
allow for efficient, psychometrically robust assessment of
PROs
NIH Roadmap, 2003
$100 million invested to date
• Develop unified/integrated of multiple indicators
(cognitive, emotional, motor, sensory) of neural and
behavioral health functioning for use in large cohort
studies and clinical trials
• Could be used as a form of “common currency” across
diverse study designs and populations
• Would maximize yield from large, expensive studies with
minimal increment in subject burden and cost
NIH Neuroscience Blueprint, 2006
$40 million invested to date
Clinician/researchers wanted measures
which were:
Psychometrically sound
Brief, easy to use
Intellectual Property “Free”
Applicable in variety of settings
and with different subgroups
Available in multiple languages
As well as measures which:
Cover the full range of a trait
No Floor Effect
No Ceiling Effect
Available for use across the age span
Further, all of the NIH Systems Drive
to Utilize a Common Metric
The same instrument used for many diseases
The same “scale” applicable to all
instruments/diseases
The same scale regardless of instrument format:
Single item
Short Form
Long Form
Computerized Adaptive Test (CAT)
BUT most legacy measures failed to
make the grade:
Psychometrically sound NOT ALWAYS
Brief, easy to use RARELY
Intellectual Property “Free” NOT ALWAYS
Applicable in variety of settings SOMETIMES
and with different subgroups RARELY
Available in multiple languages SOMETIMES,
(and if so, rarely with the same meaning!)
Neither can most legacy measures:
Cover the full range of a trait ALMOST NEVER
No Floor Effect SOMETIMES
No Ceiling Effect NEVER?
Available for use across the age span RARELY
Nor do legacy instruments have:
The same instrument used for many diseases RARELY
The same “scale” applicable to all instruments/diseases
NEVER
The same scale regardless of instrument format: NOPE!
Single item
Short Form
Long Form
Computerized Adaptive Test (CAT)
More on the ceiling issue
Legacy measures can fail to identify treatment success, nor do
they typically accurately assess anyone above the mean!
It is impractical to use disease
specific instruments
And often patients don’t want to settle
for “average”function
Previously physically active patients, who are now recovering
from an accident, don’t want to be considered “cured”
because the instrument used to assess their physical
functioning “ceilings” at the 50% ile
Athletes and others in physically active roles need to
accurately differentiate very high levels of functioning
A cancer patient whose fatigue instrument shows them to be
“above” the clinically relevant range assessed by a typical
instrument– may be far away from from feeling “normal.”
Many Instrument Types
CAT
Mode
Precision
Brevity
Short Form
Scale
Computer
Computer and
paper
Computer and
paper
High for all trait
levels
Varies by length and
how well the form is
targeted to the
specific subject
Varies by length and
how well the form is
targeted to the
specific subject
Variable length (4 –
12 items)
Range of lengths
available
Instrument
Dependent
NIH Measures can also be
compared to legacy measures
A common problem when using a variety of patient-reported
outcome measures is the comparability of scales on which the
outcomes are reported. Linking establishes relationships between
scores on two different measures.
The PRO Rosetta Stone (PROsetta Stone®) developed and
applied methods to PROMIS and other PCORR instruments
with other related instruments (e.g., SF-36, Brief Pain Inventory,
CES-D, MASQ, FACIT-Fatigue) to expand the range of PRO
assessment options within a common, standardized metric. It
provides equivalent scores for different scales that measure the
same health outcome.
Linking Outcomes Measures
Conversion Tables
The Patient Reported
Outcomes Measurement Information System
Tools
40 Adult Measures; 20 Pediatric Measures
Diseases
Advancing Knowledge
Non-Disease Specific
>100 Peer-Reviewed
Validated in Many
Publications
Diseases
Cooperative Group
12 Research Sites
3 Centers
150+ Scientists
Translations
All item banks 
Spanish
Individual Banks
and Instruments in
Many Languages
Domain Framework
Physical
Health
Symptoms
Function
Affect
Self-Reported
Health
Mental
Health
Behavior
Cognition
Global Health
Social
Health
Relationships
Function
Physical Health
PROMIS Basic
(Profile Banks)
•Physical
Function
•Pain Intensity
•Pain Interference
•Fatigue
•Sleep
Disturbance
PROMIS Plus
Extras
•Pain Behavior
•Sleep-related
impairment
•Sexual Function
•Upper Extremity
•Mobility
•Asthma Impact
•GI Symptoms
Mental Health
PROMIS Basic
(Profile Banks)
•Depression
•Anxiety
PROMIS Plus
Extras
•Anger
•Applied
Cognition
•Alcohol Use,
Consequences
& Expectancies
•Psychosocial
Illness Impact
•Experience of
Stress
•Subjective Wellbeing
Social Health
PROMIS Basic
(Profile Banks)
• Satisfaction
with
Participation
in Social
Roles
PROMIS Plus
Extras
•Satisfaction with
Social Roles &
Activities
•Ability to
Participate in
Social Roles &
Activities
•Social Support
•Social Isolation
•Companionship
• Peer
Relationships
• Emotional
Support
• Informational
Support
• Peer
Relationships
Pediatrics
Physical Health
Mental Health
Social Health
•Pain Behavior,
Quality,
Intensity
•Physical
Activity
•Experience of
Stress
•Subjective
Well-being
•Impact of
Child Illness
on Family
•Family
Belongingness
•Global Health
The NIH Toolbox for the
Assessment of Neurological
and Behavioral Function
Tools
Four 30-minute domain-level batteries
fully normed for ages 3-85
108 Instruments in total
Advancing Knowledge
54 Peer-Reviewed
Publications
Contract Mechanism
80 Institutions
256 Scientists & Staff
20,000 Subjects
Diseases
Non-Disease Specific
Validated for use in
growing number of
diseases
Translations
All instruments
Spanish
Toolbox Domains
Cognition
Emotion
Motor
Sensation
Instrument Selection
Expert Survey of selection criteria
(N=152; NIH top epidemiologists/researchers)
Focus group interviews with patients
Expert Interviews (44 interviews)
Surveys to nominate and rank sub-domains
and constructs
Emotion Domain
Framework
Emotion
Psychological
Well-Being
Social
Relationships
Stress & SelfEfficacy
Negative Affect
Positive Affect
Social Support
Perceived
Stress
Fear
Life
Satisfaction
Companionship
Self-Efficacy
Sadness
Meaning &
Purpose
Social Distress
Positive Social
Development
Anger
+ Pain Interference
Many of these measures already
ARE being used in EHR’s
2012 – EPIC enables PROMIS short forms
2014 – EPIC in the process of enabling PROMIS CATs
2014 – The Department of Defense EHR using CATs
Now: Walter Reed
Spring: Balboa and Madigan
Do we have time for more
examples?
The Department of Defense – this week made
PROMIS the priority outcome system for choice for
13,000,000 patients
Cleveland Clinic
AO Foundation (3,000 Orthopedic Trauma Surgeons)
The National Children’s Study (N=105,000, 25 years+)
Selected a wide range of PROMIS and NIH Toolbox
instruments – for Parents, for Parents as Proxies for their
Children, and for the Children themselves
Measures for Social and
Behavioral Determinants of
Health
The view provided by two large National Institutes of Health
sponsored development efforts
Richard C. Gershon, PhD.
Northwestern University