ICAR Research Data Repository for Knowledge Management

ASCQ-Me^SM (Adult Sickle Cell Quality of Life Measurement Information System) is a patient-reported outcome measurement system that evaluates and monitors the physical, mental, and social well-being of adults with sickle cell disease.

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.

For more information on ASCQ-Me, please visit HealthMeasures.