ArticleThe Journal of rheumatology2023
Measuring What Matters: A Qualitative Study of the Relevance and Clinical Utility of PROMIS Surveys in Systemic Lupus Erythematosus.
Article in The Journal of rheumatology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed, 7 citations in OpenAlex.
- Perceived and Objective Physical Function in 2 United States Population-Based Cohorts of Adults With Systemic Lupus Erythematosus.The Journal of rheumatology · 2026Article
- Development of a Theory-Based mHealth App for Fatigue Management in Lupus: Human-Centered Design Approach.JMIR formative research · 2025Article
- Study protocol for a randomized controlled trial to pilot Restore Energy, Activity Can Help (REACH): an mHealth-enabled peer coaching intervention for fatigue in systemic lupus erythematosus.Contemporary clinical trials communications · 2025Article
- Perceptions of Implementing Real-Time Electronic Patient-Reported Outcomes and Digital Analytics in a Majority-Minority Cancer Center.JCO clinical cancer informatics · 2024Article
- Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study.Journal of patient-reported outcomes · 2023Article
Corrections and comments
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Authors and funding
8 authors at 4 institutions in 1 country.
Funding
Abstract
objectiveTo evaluate the relevance and clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) surveys in patients with systemic lupus erythematosus (SLE).
methodsAdults with SLE receiving routine outpatient care at a tertiary care academic medical center participated in a qualitative study. Patients completed PROMIS computerized adaptive tests (CATs) in 12 selected domains and rated the relevance of each domain to their experience with SLE. Focus groups and interviews were conducted to elucidate the relevance of the PROMIS surveys, identify additional domains of importance, and explore the utility of the surveys in clinical care. Focus group and interview transcripts were coded, and a thematic analysis was performed using an iterative inductive process.
resultsTwenty-eight women and 4 men participated in 4 focus groups and 4 interviews, respectively. Participants endorsed the relevance and comprehensiveness of the selected PROMIS domains in capturing the effect of SLE on their lives. They ranked fatigue, pain interference, sleep disturbance, physical function, and applied cognition abilities as the most salient health-related quality of life (HRQOL) domains. They suggested that the disease-agnostic PROMIS questions holistically captured their lived experience of SLE and its common comorbidities. Participants were enthusiastic about using PROMIS surveys in clinical care and described potential benefits in enabling disease monitoring and management, facilitating communication, and empowering patients.
conclusionPROMIS includes the HRQOL domains that are of most importance to individuals with SLE. Patients suggest that these universal tools can holistically capture the impact of SLE and enhance routine clinical care.
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.