Patient-Reported Outcomes Measurement Information System Tools for Collecting Patient-Reported Outcomes in Children With Juvenile Arthritis

Abstract

Objective: To evaluate the precision and construct validity of pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) instruments in a population of juvenile idiopathic arthritis (JIA) patients and parent proxies.

Methods: A convenience sample of JIA patients and parents of JIA patients completed PROMIS instruments for 8 domains: anger, anxiety, depressive symptoms, fatigue, mobility, pain interference, peer relationships, and upper-extremity function. Short form and computerized adaptive test (CAT) scores were derived from item bank responses. Raw scores were translated to standardized T scores with corresponding SEs. Discrimination between inactive versus active disease was evaluated as an indicator of each measure's construct validity. SEs were plotted to evaluate each instrument's relative precision. Patient-parent concordance was assessed using intraclass correlations (ICCs).

Results: A total of 228 patients and 223 parents participated, providing 71-78 responses per domain. Patient- and parent-reported anger, fatigue, mobility, and pain interference scores significantly differed between those with inactive and active disease. Anxiety, depressive symptoms, and peer relationships differed by disease activity levels for parent-report only. Short forms and CATs provided comparable reliability to the full item banks across the full range of each outcome. Patient-parent agreement ranged from ICC 0.3 to 0.8. CATs did not reduce the number of items for any domain compared to the short form.

Conclusion: Precision and discriminatory abilities of PROMIS instruments depend on health domain and report type (self-report versus parent proxy-report) for children with JIA. Varying levels of patient-parent concordance reinforces the importance of considering both perspectives in comprehensive health outcomes assessments.

© 2016, American College of Rheumatology.

Figures

Figure 1

Standard error in the anger, anxiety, depressive symptoms, and fatigue domains across the full range of T-scores for each assessment option administered. Change in standard error (SE) in the (A) ‘Anger’, (B) ‘Anxiety’, (C) ‘Depressive Symptoms’, and (D) ‘Fatigue’ domains. Full item bank, short form, and computerized adaptive test (CAT) instruments shown. A T-score of ‘50’ (solid, blue, vertical line) represents the population mean score with standard deviation equal to +/− 10. The dashed, red, horizontal line corresponds with a reliability score of 0.9 (SE=3.2). T-score reliability increases as SE approaches zero. Scores below the reference line at SE=3.2 (reliability≥0.9) have acceptable reliability for individual assessment according to the Patient Reported Outcomes Measurement Information System (PROMIS) scientific standards.

Figure 2

Standard error in the mobility, pain interference, peer relationships, and upper extremity function domains across the full range of T-scores for each assessment option administered. Change in standard error (SE) in the (A) ‘Mobility’, (B) ‘Pain Interference’, (C) ‘Peer Relationships’, and (D) ‘Upper Extremity Function’ domains. Full item bank, short form, and computerized adaptive test (CAT) instruments shown. A T-score of ‘50’ (solid, blue, vertical line) represents the population mean score with standard deviation equal to +/− 10. The dashed, red, horizontal line corresponds with a reliability score of 0.9 (SE=3.2). T-score reliability increases as SE approaches zero. Scores below the reference line at SE=3.2 (reliability ≥0.9) have acceptable reliability for individual assessment according to the Patient Reported Outcomes Measurement Information System (PROMIS) scientific standards.

Figure 3

Discrimination of short forms and computerized adaptive tests (CATs) between JADAS3 disease activity levels. (A) Patient-report short form T-scores, (B) Parent-report short form T-scores, (C) Patient-report CAT T-scores, and (D) Parent-report CAT T-scores. A higher T-score indicates a worse outcome in the following domains: Anger, Anxiety, Depressive Symptoms, Fatigue, and Pain Interference. Lower T-scores indicate a worse outcome in the remaining domains: Mobility, Peer Relationships, and Upper Extremity Function.