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

2. 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

3. 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

4. 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

5. 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

6. ASCQ-Me Domains
HealthMeasures.net/ascq-me

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

8. 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.

9. 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

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

11. 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

12. 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

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

14. 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.
HealthMeasures.net/ascq-me

15. 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
HealthMeasures.net/ascq-me

16. Join the HealthMeasures Listserv
Visit HealthMeasures.net or to join!
Receive s w/ newsletter, upcoming conferences and educational events about ASCQ-Me
HealthMeasures.net

17. 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, 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