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Patient-Reported Outcomes Measurement Information System Tools for Collecting Patient-Reported Outcomes in Children
Timothy G Brandon1, Brandon D Becker1, Katherine B Bevans2
1Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Insights
Pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) instruments show varying precision and validity in juvenile idiopathic arthritis (JIA) patients. Both patient and parent reports are crucial for a complete health assessment in JIA.
Area of Science:
- Pediatric Rheumatology
- Health Outcomes Research
- Psychometrics
Background:
- Juvenile idiopathic arthritis (JIA) significantly impacts children's quality of life.
- Accurate health outcome measurement is essential for effective JIA management.
- Patient-reported outcomes (PROs) provide valuable insights into a child's experience with JIA.
Purpose of the Study:
- To assess the precision and construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) instruments in pediatric JIA patients.
- To compare the performance of PROMIS short forms and computerized adaptive tests (CATs).
- To evaluate patient-parent concordance in reporting health outcomes for JIA.
Main Methods:
- A convenience sample of 228 JIA patients and 223 parents completed PROMIS instruments across 8 domains.
- Scores were derived from item banks, translated to standardized T scores.
- Construct validity was assessed by comparing scores between inactive and active disease groups; precision was evaluated using standard errors; patient-parent agreement was measured using intraclass correlations (ICCs).
Main Results:
- PROMIS instruments demonstrated varying precision and validity depending on the health domain and report type (patient vs. parent).
- Patient and parent reports significantly differed for anger, fatigue, mobility, and pain interference between disease activity levels.
- Patient-parent agreement varied (ICC 0.3-0.8), highlighting the need for both perspectives. Short forms and CATs showed comparable reliability.
- Computerized adaptive tests (CATs) did not reduce item count compared to short forms.
Conclusions:
- The precision and discriminatory ability of PROMIS instruments in pediatric JIA are domain- and report-type dependent.
- Varying patient-parent concordance underscores the importance of incorporating both self- and proxy-reports for comprehensive JIA health assessments.
- PROMIS instruments are valuable tools, but their interpretation requires consideration of patient-specific factors and reporting perspectives.
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.
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