1. Introduction to PROMIS®
[Presenter Name] [Event] [Date]

2. What is PROMIS®? Patient-Reported Outcomes Measurement Information System®
Measures used to evaluate and monitor physical, mental, and social health (adult & pediatric)
Relevant across all conditions
Developed and evaluated using state-of-the science psychometric methods
Now supported by HealthMeasures, the official information & distribution center for 4 NIH-supported measurement systems (PROMIS®, Neuro-QoL, NIH Toolbox®, & ASCQ-Me®)
Scores on one metric
Translations available in Spanish & other languages
HealthMeasures.net/PROMIS

3. Essential Components of PROMIS
DOMAIN The feeling, function, or perception you wish to measure Cuts across different diseases and settings. E.g., physical function, depressive symptoms
ITEM BANK
Collection of items that each measure the same domain
Used to create different measure types, all producing a score on the same metric
HealthMeasures.net/PROMIS

4. PROMIS Measure Types HealthMeasures.net/PROMIS SHORT FORMS
Subsets of item banks
Focused on a single domain
Off-the-shelf or custom
Usually 4-10 items
COMPUTER ADAPTIVE TESTS (CATs)
Individually tailored electronic questionnaires
Next item administered from item bank depends on previous answers
Usually 4-12 items
PROFILES
Collection of short forms covering multiple domains (e.g. depression, physical function, pain interference)
Adult profiles (29, 43, and 57 item versions), Pediatric and Parent-Proxy profiles (25, 37, 49 item versions)
HealthMeasures.net/PROMIS

5. Domains for Adult Assessment
HealthMeasures.net/PROMIS

6. Domains for Pediatric Assessment
HealthMeasures.net/PROMIS

7. Based on Item Response Theory (IRT)
Assumes an individual’s responses to items are related to an unobservable domain or trait (e.g. fatigue). IRT can use item responses to estimate a person’s score on that domain, or expected responses to different items can be estimated from a person’s score.
“How fatigued were you on average?”
Not at all
Very much
Energetic
Severe
FATIGUE
HealthMeasures.net/PROMIS

8. Select, Obtain & Administer PROMIS Measures
HealthMeasures.net/PROMIS

9. PROMIS is at HealthMeasures
PROMIS is at HealthMeasures.net Official information & distribution center for PROMIS, Neuro-QoL, NIH Toolbox, & ASCQ-Me
Search & View Measures: Download free, respondent- ready PDFs of PROMIS measures. Hundreds of measures available, all searchable by domain, preferred measure type, language, and more.
Applications of HealthMeasures:
Free guides to help you select PROMIS measures for specific uses or patient populations (e.g., cancer)
HealthMeasures.net/PROMIS

10. Administration & Data Collection
Using Paper
Respondent-ready PDFs for short forms & profiles on HealthMeasures.net
Minimal technology needed; staff time required for data entry and scoring
Using a Computer
Required for administration of CATs
PROMIS measures available in REDCap, Epic, AOPOC (orthopedics), Assessment CenterSM and OBERD (Outcomes Based Electronic Research Database)
For a custom solution, the Assessment Center API allows your data collection system to administer PROMIS measures (including CATs)
Using the PROMIS iPad App
Enables on-demand assessments. An administrator can select any PROMIS measure and hand the iPad over to a respondent for completion
Available in the iTunes Store
HealthMeasures.net/PROMIS

11. Score and Interpret PROMIS Measures
HealthMeasures.net/PROMIS

12. PROMIS SCORING OPTIONS
HealthMeasures Scoring Service
Free, web-based application
Upload Excel file w/ raw responses to short form or profile items
Receive scored file by
Most accurate and preferred method for calculating scores
Automatic Scoring via Data Collection Tool
Many data collection tools such as REDCap, Epic, and Assessment Center automatically score responses & deliver results
By Hand
Scoring Manuals provide details and instructions for scoring individual PROMIS measures
Accessed using the Search & View Measures feature and Calculate Scores page on HealthMeasures.net
HealthMeasures.net/PROMIS

13. Understanding PROMIS Scores
PROMIS measures use a T-score metric
50 is the mean for a relevant reference population
10 is the standard deviation (SD) of that population
Meaning of the score is defined by how it compares to the scores of others in a reference population
High scores equal more of the domain being measured (e.g., more fatigue, more physical function)
HealthMeasures.net/PROMIS

14. PROMIS Score Ranges
HealthMeasures.net/PROMIS

15. Linking Measures Converts score from one measure to PROMIS metric
Enables comparisons when different measures used
HealthMeasures.net/PROMIS

16. PROMIS at Work
HealthMeasures.net/PROMIS

17. Examples of PROMIS at Work in Clinical Practice
Partners HealthCare:
PROMIS measures in 24 adult and pediatric specialties
Goal to expand use across Partners system by end of 2018
University of Rochester:
Administered PROMIS CATs to nearly every orthopaedics patient since Results viewed immediately in Epic
Over 1,000,000 evaluations collected (as of April 2017)
New South Wales, Australia:
Integrated Care Strategy administers the PROMIS Global Health scale to patients for direct, timely feedback about their health
Partners – no additional notes
Rochester –
- PROMIS CAT data has been collected on 95.21% (all time; last 3 months = 95.89%) of all orthopaedic patients at URMC since formal implementation on February 12, 2015
- 138,709 evaluations (55,220 unique patients, 338,039 total PROMIS scores) have been collected
- Moreover, 79.06% were completed, 13.78% declined without answering questions, 2.86% quit after answering some questions, 2.43% abandoned the test partway through, and 1.86% ignored the evaluation altogether.
- 2 million questions answered
NSW - The PRM program has core and optional question sets for PROM, with the core question set being PROMIS 10, to provide an overview of generic health related quality of life status of patients. The PRM program is aiming to move towards the PROMIS CAT by the end of the year, and into further short forms as and where necessary.
HealthMeasures.net/PROMIS

18. Examples of PROMIS at Work in Clinical Research
Between 2012 and 2017, PCORI has awarded $27 million to studies using PROMIS measures
The NIH-funded Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium is conducting multiple validation studies
Populations include children with asthma, atopic dermatitis, rheumatic disease, cancer, inflammatory bowel disease, sickle cell disease, and diabetes.
Two-part series in the journal Psychological Test & Assessment Modeling (2016) provided strong evidence supporting measurement equivalence of PROMIS short forms in diverse groups of cancer patients
Psychological Test and Assessment Modeling -- Cancer patients were both ethnically and socio-demographically diverse. Analyses include items across eight PROMIS adult domains: Fatigue, Depression, Anxiety, Sleep Disturbance, Pain, Physical Function, Cognitive Concerns and Social Function. 
HealthMeasures.net/PROMIS

19. Examples of PROMIS at Work in Evaluating Quality of Care
The American Academy of Orthopaedic Surgeons recommends PROMIS among its Instruments for Collection of Orthopaedic Quality Data
The Mayo Clinic recommends and uses the PROMIS Global Health scale as a patient-reported outcome for Quality of Care Assessment for patients receiving care at Mayo
The FDA’s Clinical Outcome Assessment (COA) Compendium, a resource to foster patient-focused drug development, includes PROMIS Physical Function in sarcopenia and oncology
HealthMeasures.net/PROMIS

20. Join the HealthMeasures Listserv
Visit HealthMeasures.net or to join!
Receive s w/ newsletter, upcoming conferences and educational events about PROMIS
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21. Acknowledgments
Funding for HealthMeasures was provided by the National Institutes of Health grant U2C CA
ASCQ-Me, the Adult Sickle Cell Quality of Life Measurement Information System, PROMIS, Patient- Reported Outcomes Measurement Information System, NIH Toolbox for the Assessment of Neurological and Behavioral Function, and their logos are marks owned by the U. S. Department of Health and Human Services.