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.

Recent Research

Following the initial development of ASCQ-Me measures, research has continued to:

  • Evaluate the symptoms and function of more than 2,200 patients with SCD and associated demographic and clinical characteristics through the Sickle Cell Disease Implementation Consortium. Read more in Knisely et al, 2020.
  • 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 Spanish and African languages
  • Develop guidance on when to use ASCQ-Me versus PROMIS® and how to use the two measurement systems in concert. Read more about this in Keller et al, 2017.
  • Submit ASCQ-Me for qualification to the FDA and endorsement by the National Quality Forum (NQF)
  • Develop alternative administration platforms for ASCQ-Me

Citing a ASCQ-Me Measure

If you used an ASCQ-Me measure, cite Treadwell et al, 2013 to describe the measures’ formative research and Keller et al, 2014 to describe their psychometric research.