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

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

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

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

Domains for Adult Assessment HealthMeasures.net/PROMIS

Domains for Pediatric Assessment HealthMeasures.net/PROMIS

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

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

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

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

Score and Interpret PROMIS Measures HealthMeasures.net/PROMIS

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 email 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

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

PROMIS Score Ranges HealthMeasures.net/PROMIS

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

PROMIS at Work HealthMeasures.net/PROMIS

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 2015. 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

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

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

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Acknowledgments Funding for HealthMeasures was provided by the National Institutes of Health grant U2C CA186878.   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.