- Posts: 12
Correct. But the response *values* would have to be interpreted relative to the field test sample which was restricted to adults with SCD. The questions have only been cognitively tested in adults with SCD so we do not know whether they would be understood as intended by well folks or by those with other chronic conditions. However, the work to cognitively test the questions in other conditions, and to co-calibrate the questions with the existing PROMIS item banks -- thus centering them on the general population -- could be done since they are written to be generic. The procedure of writing generic questions for a condition-specific population was done for the PROMIS cancer specific item banks as well as many of the Neuro-QOL questions. This increases the flexibility of what can be done with the questions in future research.
It's true that most of the ASCQ-Me questions were written to be generic because ASCQ-Me was developed to be a complement to PROMIS and we thought that the ASCQ-Me items might one day be integrated into the PROMIS item banks. So, most of the CONTENT is generic but the scores are not. The scores are centered on a clinical population meaning that a score of 50 is the average for people with SCD. So the interpretation of the ASCQ-Me metric for the general population is different than the interpretation of the PROMIS metric. Let's suppose that a random sample from the general population completed an ASCQ-Me assessment and the mean score across individuals was 55. This does not mean, as it would on the PROMIS metric, that this sample is half a standard deviation better or worse than the general population. Rather, it means that this sample is half a standard deviation healthier (all of the ASCQ-Me measures are scored so that higher is better) than the SCD clinical sample upon which the measures were developed and calibrated. You can find out more about ASCQ-Me by visiting www.ascq-me.org or emailing email@example.com.
The ASCQ-Me questionnaire does not appear to be available on this website (but maybe I missed it). The Keller et al. (20140 article lists example questions that appear to be generic in wording though some items appear to worded specifically about sickle cell disease.
"Cognitive Impact In the past 7 days, how often did you have trouble remembering things people had just told you?
Emotional Impact In the past 7 days, how often were you very worried about needing to go to the hospital?
Physical Impact In the past 7 days, how often were your joints very stiff during the day?
Social Impact In the past 30 days, how much did your health make it hard for you to do things with your friends?
Pain Episodes Using any number from 0 to 10, where 0 is no pain and 10 is the worst imaginable pain, how severe was your pain
during your last pain attack (crisis)?"
Why couldn't a user compare responses obtained from those without sickle cell disease to those found for the ASCQ-Me sample on generically-worded items?
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.