Comparison of CAT and short forms for PROMIS pain and physical health domains in children with sickle cell disease.

Background: Pain and physical health domains included in Patient-Reported Outcomes Measurement Information System® (PROMIS®) can be administered as short forms (SF) or as computer adaptive tests (CAT). CAT is ideal in many settings but cannot be administered without specialized technology. We compared SF and CAT to identify items for customized SFs to improve the SF performance for children with sickle cell disease (SCD).

Methods: Eligible children 8-17 years old were administered CATs for 5 domains of physical health and 2 domains of pain, followed by any items on the corresponding SF that were not included in the CAT assessments. We describe the range of scores on the CAT and SFs, including the percentage of participants with floor or ceiling effects using the SF. The agreement and correlation between CAT and SF scores were assessed using Bland-Altman plots. Items frequently offered on CAT that had variable responses and were not already present on SF are recommended as additional items for customized SFs.

Results: Among 90 children with SCD, there were strong correlations between CAT and SF scores (Concordance Correlation Coefficient > 0.8) however, the SFs for fatigue, mobility, strength impact, pain behavior, and pain interference had substantial floor/ceiling effects. Fatigue, mobility, physical stress experience, and pain behavior domains had items that were frequently offered on CAT, variable responses, and were not present on the SF.

Conclusions: Adding items to the SFs for the fatigue, mobility, physical stress experience, and pain behavior domains may improve these domains' SFs performance for children with SCD.