How do ASCQ-Me scores compare to a relevant reference population?

A unique aspect of ASCQ-Me measures is their use of standardized scores that are centered on a clinical population of people with sickle cell disease. Such scores are called “normative” because their value represents how close or far away they are from a normative population. The meaning of the score is defined by how it compares to the scores of others in a referent population.

T-Score Metric

ASCQ-Me uses a T-score metric in which 50 is the mean of the reference population and 10 is the standard deviation (SD) of that population.

On the T-score metric:

  • A score of 40 is one SD lower than the mean of the reference population.
  • A score of 60 is one SD higher than the mean of the reference population.

Direction of ASCQ-Me Scores

High scores indicate worse (undesirable) self-reported health Pain Episodes, SCD Medical History Checklist
High scores indicate better (desirable) self-reported health Emotional Impact, Pain Impact, Sleep Impact, Social Impact, and Stiffness Impact

Reference Population

All ASCQ-Me measures, except for the Sickle Cell Disease Medical History Checklist, were centered on a diverse sample of people with sickle cell disease recruited from seven clinics throughout the US. Respondents were male and female, varied in age from 18 to over 65, and varied in sickle cell type. Nearly 1 in 5 participants was 45 years old or older. Sixty-four percent of respondents were women. Consistent with the population of patients affected, the majority of respondents were diagnosed with sickle cell anemia (hemoglobin SS), followed by hemoglobin SC and other variants.

How to Interpret Scores

To interpret ASCQ-Me scores, one must consider two pieces of information: 1) the direction of scoring and 2) the difference between the score you have and 50. For example, a score of 60 on the Emotional Impact measure is one standard deviation higher, indicating much better health, than the average for adults with SCD who participated in the field test. In contrast, a score of 60 on the Pain Episode scale, indicates a person with pain episodes that are one standard deviation worse than the average for field test participants.