Introduction to ASCQ-Me® [Presenter Name] [Event] [Date]

What is ASCQ-Me? Adult Sickle Cell Quality of Life Measurement Information System Patient-reported outcome measurement system that evaluates and monitors the physical, mental, and social well-being of adults with sickle cell disease (SCD) Developed and validated with state-of-the-science methods to be psychometrically sound Designed to be comprehensive when used with PROMIS® Created to be complementary with physiological measures of disease severity Supports treatment planning as well as clinical and health services research Now supported by HealthMeasures, the official information & distribution center for 4 NIH-supported measurement systems (PROMIS®, Neuro-QoL, ASCQ-Me® and NIH Toolbox®) HealthMeasures.net/ascq-me

Collection of items that each measure the same domain Components of ASCQ-Me DOMAIN The feeling, function, or perception you wish to measure e.g., pain impact, emotional impact ITEM BANK Collection of items that each measure the same domain Use to create different measure types, all producing a score on the same metric HealthMeasures.net/ascq-me

ASCQ-Me Measure Types HealthMeasures.net/ascq-me Short Forms Fixed set of 5 items or questions for one domain Computer Adaptive Tests (CATs) Items dynamically selected from an item bank, based upon respondent’s previous answers Usually 4-12 items with a high level of measurement precision Sickle Cell Disease Medical History Checklist Fixed set of items used descriptively HealthMeasures.net/ascq-me

Short Forms and CATs Based on Item Response Theory (IRT) Assumes an individual’s responses to items are related to an unobservable domain or trait (e.g. pain). 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 often did you have pain so bad that you had to stop what you were doing?” Never Always No Impact Severe Pain Episodes

ASCQ-Me Domains HealthMeasures.net/ascq-me

Select, Obtain and Administer ASCQ-Me Measures HealthMeasures.net/ascq-me

ASCQ-Me at HealthMeasures.net Search & View Measures: Download free, respondent- ready PDFs of ASCQ-Me short forms. Applications of HealthMeasures Free guides to help you select measures for use in clinical care, research, and quality.

Administration & Data Collection Using Paper Respondent-ready PDFs for short forms and checklist on HealthMeasures.net Minimal technology needed Staff time is required for data entry and scoring Using a Computer Required for administration of CATs For a custom solution, the Assessment Center API allows your data collection system to administer ASCQ-Me measures (including CATs) HealthMeasures.net/Neuro-QoL

Score and Interpret ASCQ-Me Measures HealthMeasures.net/ascq-me

Understanding ASCQ-Me Scores ASCQ-Me measures use a T-score metric 50 is the mean of a relevant reference population 10 is the standard deviation (SD) of that population ASCQ-Me measures (except for Checklist) centered on diverse sample of people with sickle cell disease recruited from 7 clinics throughout the US. Meaning of the score is defined by how it compares to the scores of others in a reference population HealthMeasures.net/ascq-me

Direction of ASCQ-Me Scores DOMAINS High scores indicate worse (undesirable) self-reported health Pain Episodes, Sickle Cell Disease Medical History Checklist High scores indicate better (desirable) self-reported health Emotional Impact, Pain Impact, Sleep Impact, Social Impact, and Stiffness Impact HealthMeasures.net/ascq-me

ASCQ-Me at Work HealthMeasures.net/ascq-me

ASCQ-Me at Work as a Quality of Care Measure The National Heart, Lung, and Blood Institute (NHLBI) has awarded nearly $36 million in grants to the Sickle Cell Disease Implementation Consortium to improve quality of care for U.S. teens and adults with sickle cell disease. First grants of their kind, using implementation research to test strategies which could boost health outcomes Minimum of 2,400 patients with sickle cell disease at 8 clinical sites across the U.S. ASCQ-Me quality of care measure will be used in the needs assessment phase of the project. ASCQ-Me and PROMIS measures will also be used in the registry. https://www.nhlbi.nih.gov/news/press-releases/2016/nhlbi-awards-grants-help-improve-health-outcomes-teens-adults-sickle-cell HealthMeasures.net/ascq-me

Examples of ASCQ-Me at Work in Clinical Research Duke University: Piloting ASCQ-Me measures and Sickle Cell Disease Health Related Stigma Scale in adults with Sickle-Cell Disease Virginia Commonwealth University: ASCQ-Me implemented in a multi-phase, patient navigator-based program in Richmond and Tidewater Information about Duke University came from a submitted abstract to the HealthMeasures User Conference 5 https://clinicaltrials.gov/ct2/show/study/NCT02197845 HealthMeasures.net/ascq-me

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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, NIH Toolbox for the Assessment of Neurological and Behavioral Function, and their logos are marks are owned by the U. S. Department of Health and Human Services. HealthMeasures.net