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M easures for Social and Behavioral D eterminants of Health

M easures for Social and Behavioral D eterminants 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.

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M easures for Social and Behavioral D eterminants of Health

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  1. 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

  2. Different, but the Same

  3. The NIH seeks proposalsfor 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

  4. 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

  5. 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

  6. 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

  7. 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)

  8. 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!)

  9. 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

  10. 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)

  11. More on the ceiling issue • Legacy measures can fail to identify treatment success, nor do they typically accurately assess anyone above the mean!

  12. It is impractical to use disease specific instruments

  13. 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.”

  14. Many Instrument Types

  15. NIH Measures can also becompared 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.

  16. Linking Outcomes Measures

  17. Conversion Tables

  18. The Patient ReportedOutcomes MeasurementInformation System Tools 40 Adult Measures; 20 Pediatric Measures Diseases Non-Disease Specific Validated in Many Diseases Advancing Knowledge >100 Peer-Reviewed Publications Translations All item banks  Spanish Individual Banks and Instruments in Many Languages Cooperative Group 12 Research Sites 3 Centers 150+ Scientists

  19. Domain Framework Symptoms Physical Health Function Affect Self-ReportedHealth Mental Health Behavior Cognition Global Health Relationships Social Health Function

  20. Physical Health

  21. Mental Health

  22. Social Health

  23. Pediatrics

  24. The NIH Toolbox for theAssessment of Neurologicaland 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 Diseases Non-Disease Specific Validated for use in growing number of diseases Contract Mechanism 80 Institutions 256 Scientists & Staff 20,000 Subjects Translations All instruments Spanish

  25. Toolbox Domains Emotion Sensation Cognition Motor

  26. 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

  27. Emotion Domain Framework + Pain Interference

  28. 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

  29. 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

  30. 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

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