Autoinflammatory & rare systemic diseases
Assessment of patient-reported symptoms and distress in IgG4-related disease (IgG4-RD): Development, clinical validation, and content validation of the IgG4-RD Symptom Severity Index
Authors' conclusion
Symptoms and distress are common in IgG4-RD and associated with worse health-related QOL. The SSI has face, content, and construct validity; it corresponds with QOL measures.
Study context
- Population
- Patients with IgG4-RD20 interviews
- Participants
- 136 patients
- Outcome
- Symptom burden and SSI construct validity
Methodological detailsqualitative interviews, pilot testing, construct validation
- Qualitative interviews
- Pilot testing
- Construct validation
Performance
As reported in the abstract
- Experienced ≥ 1 symptom
- 90%
- Had distress
- 88%
- Median Symptom Severity Index (SSI) score (IQR)
- 6.5 (IQR 3.0, 18.0)
- Fear of more severe disease
- 49%
- Correlation of SSI with SF-36
- r= - 0.51, p<0.001
- Correlation of SSI with feeling thermometer
- r= - 0.28, p<0.001
- Correlation of SSI with EQ-5D
- r= - 0.28, p<0.001
Further findings
Median SSI score, active vs non-active disease (n = 52 who completed >1 SSI)
- Active disease, median [IQR]
- 15 [6, 26]
- Non-active disease, median [IQR]
- 3 [2, 14]
- Higher during active vs non-active disease
- P = 0.008
Original publication
Assessment of patient-reported symptoms and distress in IgG4-related disease (IgG4-RD): Development, clinical validation, and content validation of the IgG4-RD Symptom Severity Index. Semin Arthritis Rheum. Published 18 August 2023. doi:10.
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