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Measures for Social and Behavioral Determinants of HealthThe view provided by two large National Institutes of Health sponsored development effortsRichard C. Gershon, PhD.Northwestern University
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Different, but the Same
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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
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NIH Neuroscience Blueprint, 2006 $40 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
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Psychometrically sound
Brief, easy to use
Intellectual Property “Free”
Applicable in variety of settingsand with different subgroups
Available in multiple languages
Clinician/researchers wanted measures which were:
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Cover the full range of a traitNo Floor EffectNo Ceiling Effect
Available for use across the age span
As well as measures which:
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The same instrument used for many diseases
The same “scale” applicable to all instruments/diseases
The same scale regardless of instrument format:
Single itemShort FormLong FormComputerized Adaptive Test (CAT)
Further, all of the NIH Systems Drive to Utilize a
Common Metric
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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!)
BUT most legacy measures failed to make the grade:
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Cover the full range of a trait ALMOST NEVER
No Floor Effect SOMETIMESNo Ceiling Effect NEVER?
Available for use across the age span RARELY
Neither can most legacy measures:
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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 itemShort FormLong FormComputerized Adaptive Test (CAT)
Nor do legacy instruments have:
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11
More on the ceiling issueLegacy measures can fail to identify treatment success, nor do they typically accurately assess anyone above the mean!
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It is impractical to use disease specific instruments
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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.”
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Many Instrument Types
CAT Short Form Scale
ModeComputer Computer and
paperComputer and paper
Precision
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
BrevityVariable length (4 – 12 items)
Range of lengths available
Instrument Dependent
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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.
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Linking Outcomes Measures
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Conversion Tables
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The Patient ReportedOutcomes Measurement Information System
Advancing Knowledge>100 Peer-Reviewed
Publications
Tools40 Adult Measures; 20 Pediatric Measures
TranslationsAll item banks
SpanishIndividual Banks and
Instruments in Many
Languages
Cooperative Group12 Research Sites
3 Centers150+ Scientists
DiseasesNon-Disease
SpecificValidated in
Many Diseases
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Domain Framework
Self-Reported
Health
Social Health
Mental Health
Physical Health
Symptoms
Function
Affect
Behavior
Cognition
Relationships
Function
Global Health
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Physical Health
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Mental Health
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Social Health
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Pediatrics
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The NIH Toolbox for theAssessment of Neurologicaland Behavioral Function
Advancing Knowledge54 Peer-Reviewed
Publications
TranslationsAll instruments
Spanish
Contract Mechanism80 Institutions
256 Scientists & Staff20,000 Subjects
DiseasesNon-Disease SpecificValidated for use in growing number of
diseases
ToolsFour 30-minute domain-level batteries
fully normed for ages 3-85108 Instruments in total
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Sensation
Motor
Cognition
Emotion
Toolbox Domains
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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
Instrument Selection
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Emotion Domain Framework
+ Pain Interference
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Many of these measures already ARE being used in
EHR’s2012 – 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
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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
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Measures for Social and Behavioral Determinants of HealthThe view provided by two large National Institutes of Health sponsored development effortsRichard C. Gershon, PhD.Northwestern University