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Measures for Social and Behavioral Determinants of Health The view provided by two large National Institutes of Health sponsored development efforts Richard.

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Presentation on theme: "Measures for Social and Behavioral Determinants of Health The view provided by two large National Institutes of Health sponsored development efforts Richard."— Presentation transcript:

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 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

4 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

5 Psychometrically sound Brief, easy to use Intellectual Property Free Applicable in variety of settings and with different subgroups Available in multiple languages Clinician/researchers wanted measures which were:

6 Cover the full range of a trait No Floor Effect No Ceiling Effect Available for use across the age span As well as measures which:

7 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) Further, all of the NIH Systems Drive to Utilize a Common Metric

8 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:

9 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 Neither can most legacy measures:

10 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) Nor do legacy instruments have:

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

12 It is impractical to use disease specific instruments

13 And often patients dont want to settle for averagefunction Previously physically active patients, who are now recovering from an accident, dont 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 CATShort FormScale Mode ComputerComputer and paper Precision High for all trait levels Varies by length and how well the form is targeted to the specific subject Brevity Variable length (4 – 12 items) Range of lengths available Instrument Dependent

15 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.

16 Linking Outcomes Measures

17 Conversion Tables

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

19 Domain Framework Self-Reported Health SocialHealth Mental Health Physical Health Symptoms Function Affect Behavior Cognition Relationships Function Global Health

20 PROMIS Basic (Profile Banks) Physical Function Pain Intensity Pain Interference Fatigue Sleep Disturbance PROMIS Plus Pain Behavior Sleep-related impairment Sexual Function Extras Upper Extremity Mobility Asthma Impact GI Symptoms Physical Health

21 PROMIS Basic (Profile Banks) Depression Anxiety PROMIS Plus Anger Applied Cognition Alcohol Use, Consequences & Expectancies Psychosocial Illness Impact Extras Experience of Stress Subjective Well- being Mental Health

22 PROMIS Basic (Profile Banks) Satisfaction with Participation in Social Roles PROMIS Plus Satisfaction with Social Roles & Activities Ability to Participate in Social Roles & Activities Social Support Social Isolation Companionship Extras Peer Relationships Emotional Support Informationa l Support Peer Relationships Social Health

23 Physical Health Pain Behavior, Quality, Intensity Physical Activity Mental Health Experience of Stress Subjective Well-being Social Health Impact of Child Illness on Family Family Belongingness Global Health Pediatrics

24 The NIH Toolbox for the Assessment of Neurological and Behavioral Function Advancing Knowledge 54 Peer-Reviewed Publications Translations All instruments Spanish Contract Mechanism 80 Institutions 256 Scientists & Staff 20,000 Subjects Diseases Non-Disease Specific Validated for use in growing number of diseases Tools Four 30-minute domain-level batteries fully normed for ages Instruments in total

25 Sensation Motor Cognition Emotion Toolbox Domains

26 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

27 Emotion Domain Framework 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 + Pain Interference

28 Many of these measures already ARE being used in EHRs 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 Childrens 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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