Researchers Compare PROMIS and ASCQ-Me to Measure SCD Disease Activity

A study reported that both PROMIS and ASCQ-Me measures are useful tools to monitor the daily functioning and well-being of adults living with sickle cell disease (SCD), but most ASCQ-Me scores were better predictors of SCD disease severity.

The study, published in the journal Health and Quality of Life Outcomes, was titled “Sensitivity of alternative measures of functioning and wellbeing for adults with sickle cell disease: comparison of PROMIS® to ASCQ-Me℠.”

The Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me, pronounced “Ask me”) was developed to address the growing demand for valid and reliable measures to monitor SCD effects in adults. But there are other measurement systems for these patients.

To help users select the best of these measures, researchers compared two systems in terms of sensitivity to measure disease severity. One was designed to be “universally applicable” (the Patient-Reported Outcome Measurement Information System, PROMIS); the other was designed specifically for SCD (ASCQ-Me).

The study included 490 SCD adults from seven clinics across the U.S. Researchers collected data for six ASCQ-Me measures (Emotional Impact, Sleep Impact, Social Impact, Stiffness Impact, Pain Impact, SCD Pain Episode Frequency and Severity), and 10 PROMIS measures (Pain Impact, Pain Behavior, Physical Functioning, Anxiety, Depression, Fatigue, Satisfaction with Discretionary Social Activities, Satisfaction with Social Roles, Sleep Disturbance, and Sleep-Related Impairment). SCD severity was assessed via a checklist of associated treatments and conditions.

The analysis showed that patients with severe SCD had worse health in nine of the 10 PROMIS scores, compared to the general population. The PROMIS domains that were most severely affected were Physical Functioning and Pain (Impact and Behavior).

Also, ASCQ-Me fixed and short forms were shown to be highly reliable. Indeed, compared to PROMIS scores, most ASCQ-Me scores were better predictors of disease severity in SCD patients.

“Study results showed support for the validity of eight PROMIS SFs [short forms] and all ASCQ-Me SFs and fixed forms to assess health outcome in adults with SCD,” researchers wrote. “The clinical implications of these results require further investigation. Future research also should evaluate the validity of PROMIS cognitive functioning measures for use in adults with SCD and the sensitivity of both PROMIS and ASCQ-Me measures to change in SCD severity over time.”