A Preliminary Investigation of the Psychometric Properties of PROMIS® Scales in Emerging Adults With Sickle Cell Disease

Objective: To report preliminary psychometric properties of PROMIS (R) assessments among emerging adults with sickle cell disease (SCD). Method: Forty-five emerging adults with SCD ages 18-24 (M = 20.81, SD = 1.73) completed PROMIS (R) Pain Interference and Fatigue short forms and the Pediatric Quality of Life Inventory (PedsQL). Chart review was used to obtain information regarding SCD complications and health care utilization in the 3 years prior to study enrollment. Multivariate path analysis was used to compare PROMIS (R) scores by disease severity and use of disease-modifying therapies. Cronbach's alpha was used to evaluate internal consistency, and Pearson correlations assessed convergent validity between PROMIS (R) measures and the PedsQL. Results: Internal consistency was excellent for PROMIS (R) Pain Interference (alpha =.95) and good for PROMIS (R) Fatigue (alpha =.85). Associations between PROMIS (R) measures and PedsQL subscales were in the expected direction and large in magnitude (all ps <.001). There were no differences in PROMIS (R) scores based on disease severity or use of disease-modifying therapy (ps =.14-.86). Conclusions: Findings provide preliminary evidence of validity and reliability of the PROMIS (R) Pain Interference and Fatigue short forms among emerging adults with SCD. Additional research is needed to replicate these findings in larger samples and assess sensitivity to change over time .