Patient-Reported Outcome Measurement Information System (PROMIS) displays strong construct validity in pediatric and adult patients with idiopathic inflammatory myopathies
Authors' conclusion
PROMIS offers a nuanced view of HRQoL that traditional disease assessments do not adequately capture. PROMIS has good construct validity and it may be more sensitive than legacy HRQoL measures.
Study context
- Population
- Pediatric and adult patients with juvenile and adult-onset IIM (JIIM/IIM), and parents
- Participants
- 70 / 49 / 61
- Exposure
- Parents vs Pediatric vs Adult
- Parentsn = 70
- Pediatricn = 49
- Adultn = 61
- Outcome
- Construct validity of PROMIS against legacy HRQoL instruments and associations with disease assessments and clinical characteristics
Methodological detailsvalidation study
- Validation study
Main finding
As reported in the abstract
- Decreased Physical Function vs reference population, all groups
- 39.9-44.3, P < 0.001-0.002
- Increased pain interference, all groups
- 49.6-55.8, P < 0.001
- Increased fatigue, all groups
- 49.5-55.1, P < 0.001-0.004
- Increased anxiety, all groups
- 47.0-52.5, P < 0.001-0.043
- Internal consistency, excellent
- α > 0.9
Observational data: associations, not effects.
Further findings
| Outcome | Estimate | P value |
|---|---|---|
| Parent vs child report: PF, Fatigue, AnxietyParents vs Pediatric · worse PF reported by parents | PF score 39.7 vs 42.9 | P < 0.001 |
| Parent vs child report: PF, Fatigue, AnxietyParents vs Pediatric · more fatigue reported by parents | Fatigue score 52.4 vs 48.5 | P = 0.023 |
| Parent vs child report: PF, Fatigue, AnxietyParents vs Pediatric · higher anxiety reported by parents | Anxiety score 49.6 vs 46.8 | P = 0.032 |
Correlation with disease activity and damage
- PROMIS Physical Function (PF) correlated best with disease activity measures
- |r|=0.022-0.636
- Only parent PF correlated with Physician Global Damage
- |r|=0.414
- Social Role, Anxiety and Depression correlated poorly with disease activity measures
- Several PROMIS domains correlated better with disease assessments than SF-36
Original publication
PROMIS displays strong construct validity in pediatric and adult patients with idiopathic inflammatory myopathies. Rheumatology (Oxford). Published 25 September 2025. doi:10.
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