Health-related quality of life in childhood arthritis: the impact of generic versus disease-specific instruments
Authors' conclusion
Patients and parents provided different responses to generic and disease-specific HRQoL instruments. The concordance was reduced in all domains except for pain/discomfort when children were experiencing high disease activity, highlighting the perceived conceptual differences and limitations of HRQoL instruments.
Study context
- Population
- Children with JIA in the UCAN CAN-DU study, Canada and the Netherlands, with JAMAR and EQ-5D-Y-5L completed on the same date by patients or parents (63% female; median age 11.9 years)
- Participants
- 678 children
- Exposure
- Disease-specific vs generic health-related quality of life (HRQoL) instruments
- Outcome
- Concordance of JAMAR and EQ-5D-Y-5L responses across five domains (anxiety/depression; mobility; pain/discomfort; self-care; usual activities)
Methodological detailsmulticentre, international, consecutive enrolment
- Multicentre
- International
- Consecutive enrolment
Main finding
As reported in the abstract
- Concordance across all domains
- 84%
- Anxiety/depression
- 84%
- Mobility
- 82%
- Pain/discomfort
- 85%
- Self-care
- 87%
- Usual activities
- 82%
Observational data: associations, not effects.
Further findings
| Outcome | Spearman's correlation R | P value |
|---|---|---|
| Correlation of global assessment scales (Spearman)High correlation | −0.72 | P < 0.001 |
Concordance in inactive disease
- Generic and disease-specific instruments converged across all domains except pain/discomfort
Original publication
Health-related quality of life in childhood arthritis: the impact of generic versus disease-specific instruments. Pediatr Rheumatol Online J. Published 12 September 2026. doi:10.
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