Lupus & antiphospholipid syndrome
Measuring What Matters: A Qualitative Study of the Relevance and Clinical Utility of Patient-Reported Outcomes Measurement Information System (PROMIS) Surveys in Systemic Lupus Erythematosus
Authors' conclusion
PROMIS includes the HRQOL domains that are of most importance to individuals with SLE.
Study context
- Population
- Adults with systemic lupus erythematosus (SLE) receiving routine outpatient care at a tertiary care academic medical center28 women and 4 men
- Outcome
- Relevance and clinical utility of PROMIS surveys (computerized adaptive tests (CATs) in 12 selected domains) in SLE
Methodological detailsfocus groups and interviews, thematic analysis, single-centre
- Focus groups and interviews
- Thematic analysis
- Single-centre
Main finding
As reported in the abstract
- Participants endorsed the relevance and comprehensiveness of the selected PROMIS domains in capturing the effect of SLE on their lives
- Most salient health-related quality of life (HRQOL) domains: fatigue, pain interference, sleep disturbance, physical function, applied cognition abilities
- Disease-agnostic PROMIS questions holistically captured lived experience of SLE and its common comorbidities
- Enthusiasm for PROMIS in clinical care: potential benefits in disease monitoring and management, communication, patient empowerment
- 4 focus groups and 4 interviews
Original publication
Measuring What Matters: A Qualitative Study of the Relevance and Clinical Utility of PROMIS Surveys in Systemic Lupus Erythematosus. J Rheumatol. Published 1 July 2023. doi:10.
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