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:
- NHLBI Adult SCD Working Groups (WGs)
- ASCQ-Me literature review (LR)
- ASCQ-Me patient focus groups (FGs)
- ASCQ-Me patient critical incident interviews
- ASCQ-Me
patient advisors
- ASCQ-Me provider critical incident interviews (CIIs)
- ASCQ-Me
clinical researcher advisors
The
resulting ASCQ-Me includes questions enabling adults to describe their
functioning and wellbeing according to seven topics:
- Emotional Impact
(CAT, 5-item short form)
- Pain Episodes (5-item fixed form)
- Pain Impact (CAT, 5-item short form)
- SCD Medical History Checklist (9-item short index)
- Sleep Impact (CAT, 5-item short form)
- Social Functioning Impact (CAT, 5-item short form)
- Stiffness Impact (CAT, 5-item short form)
References
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. Health and Quality of Life Outcomes,22:125.