Publishing ASCQ-Me® Results

Please use this Publishing Checklist when writing about ASCQ-Me measures in publications and presentations. Checklist categories include measure details, administration, scoring, and reporting. Access the Publication Checklist here>>

  • The first mention of ASCQ-Me® should include its full name: “Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me).” Subsequent sentences should use “ASCQ-Me.” 
  • Report the official measure name. The measure name includes the following components:
    • Measure type (i.e., short form, computer adaptive test (CAT), scale, pool, checklist)
      • Note that in some data collection systems, measure are labeled as “item banks.” If the item bank was administered as a computer adaptive test, please refer to the measure as a CAT.
      • Version number (e.g., v2.0)
      • Full domain name (e.g., Emotional Impact). You can find the full domain name on the List of ASCQ-Me Measures pages.
      • Examples:
        • ASCQ-Me Pain Impact CAT v2.0
        • ASCQ-Me Emotional Impact Short Form v2.0
  • ASCQ-Me scores (other than the Sickle-Cell Disease Medical History Checklist) should be presented as T-scores. The T-score is the standardized score with a mean of 50 and standard deviation of 10. Having T-scores in publications facilitates comparisons between studies. Raw scores should be reported for the Sickle-Cell Disease Medical History Checklist.
    • Percentiles can be included as additional but not replacement information.
    • ASCQ-Me scores vary with direction and the concept being measured. For example, high Pain Episodes scores indicate worse health whereas high Emotional Impact scores indicate better health. Please see the definition of individual ASCQ-Me domains for more information>>
    • Because high ASCQ-Me scores may be desirable (e.g., emotional impact) or undesirable (e.g., pain episodes), we recommend utilizing graphs with two Y-axes together. For example, here are multiple ASCQ-Me T-scores:
    • double y axis graph ASCQMe

  • There are multiple ways to calculate ASCQ-Me T-scores (e.g., HealthMeasures Scoring Service, Scoring Manual, automatic scoring in a data collection platform). Learn more about your options at Calculate Scores.
  • Sometimes the syntax of an ASCQ-Me item or measure was modified. Any modifications to the syntax including time frame, item text, and response options should be described.
  • ASCQ-Me measures were developed to be completed by adult self-report. If another method was used (e.g., interview administered, proxy report for an adult), include a description.
  • Include a citation for the ASCQ-Me measure used. If using a short form, citing the publication describing the development of the full item bank is appropriate.
  • If you would like to reprint an ASCQ-Me measure in a publication, you must have written permission. All requests can be emailed to

For more information, see: 

Hanmer, J., Jensen, R.E. & Rothrock, N. A reporting checklist for HealthMeasures’ patient-reported outcomes: ASCQ-Me, Neuro-QoL, NIH Toolbox, and PROMIS. J Patient Rep Outcomes 4, 21 (2020).