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The development of ASCQ-Me measures used a wide range of qualitative and quantitative research methods similar to those used for the Patient‑Reported Outcomes Measurement Information System (PROMIS), an NIH Common Fund initiative. Like PROMIS, ASCQ-Me uses computer adaptive testing (CAT) technology and item response theory (IRT) models to make the development of standardized patient reported outcomes possible, while reducing respondent burden.

The concepts behind the ASCQ-Me measures were based on a conceptual framework of how SCD affects adult lives which, in turn, was based on a comprehensive program of formative research including the:

  1. NHLBI Adult SCD Working Groups (WGs)
  2. ASCQ-Me literature review (LR)
  3. ASCQ-Me patient focus groups (FGs)
  4. ASCQ-Me patient critical incident interviews
  5. ASCQ-Me patient advisors
  6. ASCQ-Me provider critical incident interviews (CIIs)
  7. ASCQ-Me clinical researcher advisors

The resulting ASCQ-Me includes questions enabling adults to describe their functioning and wellbeing according to seven topics:

  1. Emotional ImpactPDF Icon (CAT, 5-item short form)
  2. Pain EpisodesPDF Icon (5-item fixed form)
  3. Pain ImpactPDF Icon (CAT, 5-item short form)
  4. SCD Medical History ChecklistPDF Icon (9-item short index)
  5. Sleep ImpactPDF Icon (CAT, 5-item short form)
  6. Social Functioning ImpactPDF Icon (CAT, 5-item short form)
  7. Stiffness ImpactPDF Icon (CAT, 5-item short form)


Reeve, B., Hays, R. D., Bjorner, J., Cook, K., Crane, P. K., Teresi, J. A., Thissen, D., Revicki, D. A., Weiss, D. J., Hambleton, R. K., Liu, H., Gershon, R., Reise, S. P., Lai, J. S., Cella, D., & on behalf of the PROMIS cooperative group. (2007). Psychometric evaluation and calibration of health–related quality of life item banks: Plans for the Patient–Reported Outcome Measurement Information System (PROMIS). Medical Care, 45(5), S22–31.

Keller S, Yang M, Treadwell MJ, Werner EM, Hassell K. (2014). Patient Reports of Health Outcome for Adults Living with Sickle Cell Disease: Development and Testing of ASCQ-Me Item Banks.PDF icon  Health and Quality of Life Outcomes,22:125.