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?
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?
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.pdf
Which languages are available for ASCQ-Me?
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 at firstname.lastname@example.org
to learn which languages are currently available and how to access them.
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, please contact Dr. San Keller at email@example.com
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”.