Autoinflammatory & rare systemic diseases
Development and validation of a relapsing polychondritis disease-specific quality of life instrument (ERN ReCONNET RP-QoL)
Authors' conclusion
The RP-QoL is the first validated, disease-specific HR-QoL instrument for RP, with robust psychometric performance and applicability in both clinical practice and research.
Study context
- Population
- Patients with relapsing polychondritis (RP), European Reference Network ReCONNETvalidation cohort, 19 countries
- Participants
- 239 patients
- Outcome
- Psychometric performance of the RP-QoL
Methodological detailsmultilingual, international, four-step approach, cognitive debriefing, psychometric validation, Validation cohort: median age 55 years; 80% female
- Multilingual
- International
- Four-step approach
- Cognitive debriefing
- Psychometric validation
- Validation cohort: median age 55 years; 80% female
Performance
As reported in the abstract
- Internal consistency (Cronbach's α)
- 0.96
- Variance explained by first factor (exploratory factor analysis; near-unidimensionality)
- 46.6%
- Correlation with disease impact
- −0.62
- Correlation with SF-36 physical component
- 0.65
- Correlation with SF-36 mental component
- 0.55
- Discriminative ability (AUC)
- 0.87
Further findings
- Patients providing input to domain identification (22 countries)
- 274
- Pilot questionnaire items (28-day recall period, 5-point response scale)
- 31
- Cognitive debriefing confirmed clarity, relevance, and feasibility
Original publication
Development and validation of a relapsing polychondritis disease-specific quality of life instrument (ERN ReCONNET RP-QoL). Rheumatology (Oxford). Published 1 July 2026. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →