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Measure Development & Research
ASCQ-Me was developed to answer a need identified in sickle cell disease (SCD) working groups conducted by the National Heart, Lung and Blood Institute (NHLBI). Measure development utilized rigorous methodology.
- In 2002 and 2003, the National Heart, Lung and Blood Institute (NHLBI) convened a workshop and later a working group of researchers, sickle cell disease consumers and family members, physicians, nurses, social workers, and other experts to address health-related quality of life (HRQOL) issues of persons with SCD. The conclusion of this group was that there was a need for a valid method of measuring the impact and treatment of SCD on the lives of adults.
- Measure development began with a comprehensive literature review that identified important aspects of HRQOL for assessment including pain and its management, emotional distress, functioning in social, family, sexual, and work-related roles, overall quality of life, and quality of care. Eleven focus groups of adults with SCD and 36 individual interviews were used to create a conceptual framework, which served as the basis for generating items used in ASCQ-Me measures.
- Field testing of items was conducted with 556 adults recruited through seven geographically diverse US clinics. Data were analysed to confirm the factor structure of domains and to allow for analyses at the item and bank level, using techniques from both classical test theory and item response theory. Final measures were constructed.
Following the initial development of ASCQ-Me measures, research has continued to:
- Evaluate the ability of ASCQ-Me scores to detect change
- Integrate ASCQ-Me into SCD registries
- Evaluate psychometric properties of ASCQ-Me in ages 15-18
- Evaluate psychometric properties of proxy and interviewer-administered versions of ASCQ-Me
- Translate ASCQ-Me into languages spoken in the US in addition to English and Spanish, as well as African languages
- Develop guidance on when to use ASCQ-Me versus PROMIS® and how to use the two measurement systems in concert
- Submit ASCQ-Me for qualification to the FDA and endorsement by the National Quality Forum (NQF)
- Develop alternative administration platforms for ASCQ-Me