FAQs | ASCQ-Me
ASCQ-Me stands for the Adult Sickle Cell Quality of Life Measurement Information System. It is a Patient-Reported Outcome (PRO) assessment specifically designed for adults with Sickle Cell Disease (SCD) to describe how they feel and function.
ASCQ-Me fixed-format questionnaires and information about the questionnaires are available on our Measures page. Additional information: PhenX Toolkit Data Collection Toolkit and information about the computer adaptive versions of ASCQ-Me.
Currently, ASCQ-Me is being used by researchers funded by NIH, however there is interest in using ASCQ-Me for patient registries and in clinical trials of therapy.
Development of ASCQ-Me began a year after work on PROMIS was initiated. The ASCQ-Me research team was aware and supportive of the PROMIS effort to standardize PRO assessments and sought to supplement and not duplicate PROMIS. So ASCQ-Me was designed to be used in conjunction with PROMIS.
No. ASCQ-Me has fixed-format questionnaires that patients can respond to using paper and pencil.
No. ASCQ-Me is scored relative to a large sample of adult patients with SCD and does not have norms for other populations. Content for the ASCQ-Me questions was generated from individual and group interviews with 120 adults with SCD who varied in age, gender, SCD severity and region of the country.
Although ASCQ-Me’s instruments are specifically calibrated for patients with sickle cell disease, you can find additional NIH-funded PRO instruments that measure those types of domains on www.HealthMeasures.net.
Children down to the age of 18 were included in the field test for ASCQ-Me. But ASCQ-Me questions could be appropriate down to the age of 15. We welcome testing of ASCQ-Me in the age range of 15-17. Testing could include cognitive interviewing or cognitive debriefing of ASCQ-Me questions as well as analyzing ASCQ-Me data collected from teenagers 15-17 years of age. We would be happy to provide guidance and collaborate on this research and the analysis of the data.
There is a PRO assessment for children with SCD. Two forms of this assessment exist: one for child self report, tested in children ages 8 to 18; and one for parents to report on their child’s health (child proxy report), tested for children ages 2 through 18. More information on this assessment may be found in this publication: PedsQL Sickle Cell Disease Module: Feasibility, Reliability and Validity.
ASCQ-Me fixed-format questionnaires are available in a number of translations including Arabic, English, French, German, Italian, and Spanish. Please contact Dr. San Keller to learn which languages are currently available and how to access them.
Yes. Translations may already be in process. For any questions about translations or other modifications to ASCQ-Me questions, please contact Dr. San Keller.
We have no data to evaluate the measurement properties of an ASCQ-Me which uses a different recall period and so we cannot speak to the quality of the data you would collect. If you change the recall period or make any other type of change, we ask that you do not call the new questionnaire “ASCQ-Me”.
