Consistency of ASCQ-Me Scores Across Repeated Measures in Sickle Cell Disease

Reliable longitudinal measurement is essential for tracking quality of life (QoL) in sickle cell disease (SCD). The multiple domains of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) have not been evaluated for their longitudinal consistency across repeated observations in real-world SCD cohorts with chronic pain.

We sought to evaluate the consistency of ASCQ-Me scores across repeated observations over 18 months and to examine their association with average pain intensity.

We used a repeated-measures longitudinal observational study among adults with SCD. Participants (N = 186, mean (±SD) age: 36.6 ± 11.7 years, 62% female) completed ASCQ-Me measures at 4 time points, approximately 6 months apart. Average pain intensity (API; 0-10) was computed as the mean of pain now, the least pain in the last 24 hours, and the worst pain in the last 24 hours. Analysis included Cronbach's alphas, intraclass correlation coefficient (ICC), and linear regression mixed models.

Cronbach's alphas were high and stable across all domains (0.73-0.92), except for Pain Episodes Severity (α = 0.63). Means across time varied by no more than 2.2 points with moderate-to-high ICC (0.42-0.68), indicating consistent score behavior across time points. Average pain intensity was strongly associated with every ASCQ-Me subscale (P < .001 for all, except Pain Episodes Severity, P = .002).

ASCQ-Me scores were consistent over 18 months and demonstrated clinically coherent associations with pain burden in adults with SCD. Findings support the use of ASCQ-Me for monitoring QoL trajectories and for clinical studies targeting SCD symptoms and function.