Evidence map›Paper›PMID 38225171›Full record

ArticleArthritis care & research2024

Development of the American College of Rheumatology Patient-Reported Outcome Quality Measures for Systemic Lupus Erythematosus.

Patricia P Katz, Claire E H Barber, Alí Duarte-García, Shivani Garg, Wambui Machua, Wendy Rodgers, Yesenia Santiago-Casas, Lisa Suter, Christie M Bartels, Jinoos Yazdany

Abstract read
In one paragraph

Article in Arthritis care & research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Article
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Patricia P KatzUniversity of California, San Francisco.ORCID 0000-0002-8146-2519
Claire E H BarberUniversity of Calgary, Calgary, Alberta, Canada.ORCID 0000-0002-3062-5488
Alí Duarte-GarcíaMayo Clinic, Rochester, Minnesota.ORCID 0000-0003-1749-5719
Shivani GargUniversity of Wisconsin School of Medicine and Public Health, Madison.ORCID 0000-0001-7272-2692
Wambui MachuaPiedmont Atlanta Hospital, Atlanta, Georgia.
Wendy RodgersLupus Foundation Care and Support Services, Los Angeles, California.
Yesenia Santiago-CasasIntegral Rheumatology and Immunology Specialists, Plantation, Florida.
Lisa SuterYale School of Medicine, New Haven, Connecticut, and Veterans Administration Hospital, West Haven, Connecticut.ORCID 0000-0002-4898-6783
Christie M BartelsUniversity of Wisconsin School of Medicine and Public Health, Madison.ORCID 0000-0001-6523-0374
Jinoos YazdanyUniversity of California, San Francisco.ORCID 0000-0002-3508-4094

Funding

Yale Clinical and Translational Science Award (U Component)UL1TR001863 · NCATS · YALE UNIVERSITY · PI John H. Krystal, LUCILA OHNO-MACHADO · 2016 to 2026
$102.9M
University of Wisconsin Institute for Clinical and Translational ResearchUL1TR002373 · NCATS · UNIVERSITY OF WISCONSIN-MADISON · PI ELIZABETH S BURNSIDE, Allan R. Brasier · 2017 to 2026
$75.9M
RESOURCE-BASED CENTER FOR THE ADVANCEMENT OF PRECISION MEDICINE IN RHEUMATOLOGYP30AR070155 · NIAMS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Mary C Nakamura · 2016 to 2026
$8.2M
Advancing Quality and Outcomes Measurement in RheumatologyK24AR074534 · NIAMS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Jinoos Yazdany · 2019 to 2026
$1.5M
AHRQ HHS R01 HS024412AHRQ HHS R01 HS028024Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis STAR-19-0611/CIHR SI2-169745CDC HHSNCATS NIH HHS UL1 TR001863NCATS NIH HHS UL1 TR002373NIAMS NIH HHS K24 AR074534NIAMS NIH HHS P30 AR070155NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases K24-AR-074534
6 · The paper itself

Abstract

objectiveAs part of a Centers for Disease Control and Prevention-funded American College of Rheumatology (ACR) initiative, we sought to develop quality measures related to Patient Reported Outcome Measure (PROM) use for systemic lupus erythematosus (SLE) clinical care.

methodsAn expert workgroup composed of physician, patient, and researcher representatives convened to identify patient-reported outcome (PRO) domains of greatest importance to people with SLE. A patient advisory panel separately ranked domains. PROMs assessing priority domains were identified through structured literature review, and detailed psychometric reviews were conducted for each PROM. In a Delphi process, the expert workgroup rated PROMs on content validity, psychometric quality, feasibility of implementation, and importance for guiding patient self-management. The patient advisory panel reviewed PROMs in parallel and contributed to the final recommendations.

resultsAmong relevant PRO domains, the workgroup and patient partners ranked depression, physical function, pain, cognition, and fatigue as high-priority domains. The workgroup recommended at least once yearly measurement for (1) assessment of depression using the Patient Health Questionnaire or Patient Reported Outcomes Measurement Information System (PROMIS) depression scales; (2) assessment of physical function using PROMIS physical function scales or the Multi-Dimensional Health Assessment Questionnaire; and (3) optional assessments of fatigue and cognition. Pain scales evaluated were not found to be sufficiently superior to what is already assessed in most SLE clinic visits.

conclusionExpert workgroup members and patient partners recommend that clinicians assess depression and physical function at least once yearly in all people with SLE. Additional PROMs addressing cognition and fatigue can also be assessed. Next steps are to incorporate PROM-based quality measures into the ACR The Rheumatology Informatics System for Effectiveness registry.

Indexed as

Delphi TechniqueLupus Erythematosus, SystemicPatient Reported Outcome MeasuresRheumatologyConsensusHumansPsychometricsReproducibility of ResultsUnited States

Identifiers

PMID38225171
PMCPMC11132939

What OpenQuestion holds

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Registered trials

None linked

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.