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Psychometric properties of patient-reported outcomes measurement information system (PROMIS) fixed short forms in
Kaveh Ardalan1, Mariana C Marques2, David Cella3
1Division of Pediatric Rheumatology, Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA; Division of Rheumatology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Departments of Pediatrics and Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Insights
Patient-Reported Outcomes Measurement Information System (PROMIS) measures are reliable and valid for juvenile myositis (JM) patients. Both child and parent reports are valuable for comprehensive assessment in JM research and clinical practice.
Area of Science:
- Rheumatology
- Pediatrics
- Psychometrics
Background:
- Juvenile myositis (JM) requires reliable and valid patient-reported outcome measures (PROMs) for effective management.
- Assessing the utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) in pediatric rheumatology is crucial.
Purpose of the Study:
- To evaluate the reliability and validity of PROMIS pediatric self-report and parent-proxy report fixed short forms in children with JM.
- To determine the agreement between child and parent reports for various PROMIS domains in JM.
Main Methods:
- 75 children with JM (ages 5-17) and their parents completed PROMIS measures (Physical Function, Pain Interference, Fatigue, Emotional Distress) and PedsQL scales.
- Internal consistency reliability was assessed using Cronbach's alpha, and patient-parent agreement using intraclass correlations (ICC).
- Concurrent and construct validity were examined through correlations with PedsQL and clinical/laboratory data, respectively.
Main Results:
- PROMIS measures demonstrated high internal consistency reliability (Cronbach's alpha >0.8) and feasibility (>96% completion).
- Moderate patient-parent agreement (ICC >0.5) was observed for Physical Function and Fatigue, with lower agreement for Pain Interference and Emotional Distress.
- Concurrent validity was supported by moderate correlations between PROMIS and PedsQL domains; construct and known-groups validity were also demonstrable.
Conclusions:
- PROMIS pediatric measures exhibit good reliability and validity in the JM population.
- Collecting both child and parent reports is recommended due to sufficient differences in their perspectives.
- PROMIS measures are suitable for clinical and research applications in juvenile myositis.
Objectives:
Assess reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric self-report and parent-proxy report fixed short forms in juvenile myositis (JM).
Methods:
Children with JM (8-17yo) and parents of 5-17 yo JM patients completed PROMIS measures (Physical Function, Pain Interference, Fatigue, Emotional Distress), PedsQL Generic Core scales and Rheumatology Module (PedsQL-GC/-RM). Internal consistency reliability was assessed via Cronbach's alpha. Patient-parent agreement was assessed via intraclass correlations (ICC). Concurrent and construct validity were assessed via Spearman's correlations between PROMIS versus PedsQL-GC/-RM and clinical/lab data respectively. Known-groups validity was assessed by comparing PROMIS T-scores between clinically distinct JM patients.
Results:
We enrolled 75 JM participants, with 57 administered self-report and all 75 administered parent-proxy report measures per participant age. PROMIS measures were feasible (>96% completion), with high internal consistency reliability (Cronbach's alpha >0.8). Patient-parent assessments demonstrated moderate agreement (ICC >0.5) for Mobility, Upper Extremity, and Fatigue domains, and smaller correlations (ICC 0.41-0.47) as expected for Pain Interference, Depressive Symptoms, and Anxiety. Concurrent validity was demonstrated by moderate correlation (Spearman's rho >0.5) for all but 1 hypothesized relationships of PROMIS and PedsQL-GC/-RM domains. Although low disease activity and small sample size limited statistical power, construct validity and known-groups validity were demonstrable for multiple PROMIS pediatric self-report and parent-proxy report measures.
Conclusion:
PROMIS measures show evidence of reliability and validity in JM. Child and parent reports differ sufficiently to suggest both should be collected. PROMIS measures can be considered for clinical and research use in JM.
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