Skip Navigation
Menu

FAQs

What is 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.

Where can I get ASCQ-Me?

You can get ASCQ-Me fixed-format questionnaires and information about the questionnaires from this web site and the consensus measures of Phenotypes and eXposures PhenX.PDF icon Adaptive ASCQ-Me assessments require CAT software and are available.

Who is using 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.

How are ASCQ-Me and PROMIS related?

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.

Do I need a computer to use ASCQ-Me?

No. ASCQ-Me has fixed-format questionnaires that patients can respond to using paper and pencil.

Can I compare the ASCQ-Me scores of adults with SCD to the ASCQ-Me scores of adults with other conditions or well adults?

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.

I would like to find some PRO measures that deal with the senses, physical qualities such as endurance and mental qualities such as cognitive function.
Are there any instruments like that?

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. Visit the “Measurement Systems” page to learn more.

Can I administer ASCQ-Me to teenagers?

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.   

Is there an ASCQ-Me for children?

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 a publication that is free for download at this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4412167/pdf/nihms-682935.pdfPDF icon

Is ASCQ-Me translated into Spanish?

Yes.

Which languages are available for ASCQ-Me?

To date, ASCQ-Me is available in Spanish and English.

I want to translate ASCQ-Me into another language, do I need permission to do so?

Yes. Translations may already be in process. For any questions about translations or other modifications to ASCQ-Me questions, you should contact San Keller at sankeller@air.org.

I want to change the recall period for ASCQ-Me questions.  Can I do that?

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”.