Evidence map›Paper›PMID 33094395›Full record

ArticleClinical rheumatology2021

Does hand involvement in systemic sclerosis limit completion of patient-reported outcome measures?

Tracy M Frech, John M VanBuren, Emily Startup, Shervin Assassi, Elana J Bernstein, Flavia V Castelino, Lorinda Chung, Chase Correia, Jessica K Gordon, Faye N Hant and 7 more

Abstract read
In one paragraph

Article in Clinical rheumatology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. 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

17 authors.

Tracy M FrechDepartment of Internal Medicine, Division of Rheumatology, University of Utah and Salt Lake Veterans Affair Medical Center, 1900 E 30 N, SOM 4b200, Salt Lake City, UT, 84132, USA. tracy.frech@hsc.utah.edu.ORCID http://orcid.org/0000-0002-5472-3840
John M VanBurenDepartment of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Emily StartupDepartment of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Shervin AssassiThe University of Texas Health Science Center at Houston, Houston, TX, USA.
Elana J BernsteinDepartment of Medicine, Vagelos College of Physicians and Surgeons, Columbia University Irving Medical Center, New York, NY, USA.
Flavia V CastelinoHarvard Medical School and Massachusetts General Hospital, Boston, MA, USA.
Lorinda ChungDepartment of Medicine and Dermatology, Division of Rheumatology, Stanford University and Palo Alto Veterans Affairs Health Care System, Stanford, CA, USA.
Chase CorreiaDepartment of Medicine, Division of Rheumatology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Jessica K GordonHospital for Special Surgery, New York, NY, USA.
Faye N HantDivision of Rheumatology and Immunology, Medical University of South Carolina, Charleston, SC, USA.
Laura HummersDepartment of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Dinesh KhannaUniversity of Michigan Scleroderma Program, Ann Arbor, MI, USA.
Nora SandorfiDivision of Rheumatology, University of Pennsylvania, Philadelphia, PA, USA.
Ami A ShahDepartment of Medicine, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Victoria K ShanmugamDivision of Rheumatology, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA.
Virginia SteenGeorgetown University School of Medicine, Washington, DC, USA.
Luke EvninScleroderma Research Foundation, San Francisco, CA, USA.

Funding

Autoantibodies Define Scleroderma Subgroups with Distinct Relationships to CancerR01AR073208 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI LIVIA A CASCIOLA-ROSEN, Ami Aalok Shah · 2018 to 2026
$5.2M
Institutional Career Development CoreKL2TR003168 · NCATS · UNIVERSITY OF TEXAS HLTH SCI CTR HOUSTON · PI MILLER, CHARLES C · 2019 to 2023
$4.9M
CFlm25 mediated alternative polyadenylation regulates fibrosis in systemic sclerosisR01AR073284 · NIAMS · UNIVERSITY OF TEXAS HLTH SCI CTR HOUSTON · PI ASSASSI, SHERVIN, MILLS, TINGTING WENG · 2019 to 2023
$1.7M
Outcomes Research in Rheumatic DiseasesK24AR063120 · NIAMS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI KHANNA, DINESH · 2012 to 2022
$1.6M
Systemic Sclerosis (SSc) Vasculopathy: Improved Clinical Monitoring and TreatmentK23AR067889 · NIAMS · UNIVERSITY OF UTAH · PI FRECH, TRACY MINAN · 2016 to 2020
$881k
Screening Chest CT to Detect Interstitial Lung Disease in Systemic SclerosisK23AR075112 · NIAMS · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI BERNSTEIN, ELANA · 2019 to 2023
$794k
Systemic Sclerosis-Associated Interstitial Lung Disease Response IndexR01AR070470 · NIAMS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI KHANNA, DINESH · 2017 to 2019
$642k
Systemic sclerosis (SSc) vasculopathy: Improved clinical monitoring and treatmentI01CX001183 · VA · VA SALT LAKE CITY HEALTHCARE SYSTEM · PI FRECH, TRACY MINAN · 2016 to 2020
–
CSRD VA I01 CX001183NCATS NIH HHS KL2 TR003168NIAMS NIH HHS K23 AR067889NIAMS NIH HHS K23 AR075112NIAMS NIH HHS K24 AR063120NIAMS NIH HHS R01 AR070470NIAMS NIH HHS R01 AR073208NIAMS NIH HHS R01 AR073284NIH HHS K23AR067889NIH HHS K23AR075112NIH HHS K24AR063120-07NIH HHS R01 AR073208NIH HHS R01 AR073284
6 · The paper itself

Abstract

The objective of this analysis is to examine whether the severity of systemic sclerosis (SSc)-hand involvement influences patient-reported outcome measure (PROM) completion rate in a US cohort of early disease. Participants included SSc patients with less than 5 years disease duration consented and enrolled in the Collaborative, National, Quality, and Efficacy Registry (CONQUER) between June 2018 and December 2019. Participants' socio-demographics, hand clinical features (severe modified Rodnan skin score, presence of small joint contractures, acro-osteolysis, calcinosis, and digital ulcers), and completion rates of seven PROMs including a Resource Use Questionnaire were analyzed. Cohort characteristics and baseline PROM completion were evaluated. Multivariable logistic regression assessed the relationship between hand limitations and PROM incompletion at several time points using generalized estimating equations. At the time of data lock, 339 CONQUER subjects had a total of 600 visits available for analysis. Calcinosis (odds ratio [OR] 6.35, confidence interval [CI] 2.41-16.73 and acro-osteolysis OR 3.88 (1.57-9.55) were significantly associated with incomplete PROM. The Resource Use Questionnaire was the PROM most commonly not completed. Increasing age was correlated with resource use questionnaire incompletion rate. Acro-osteolysis and calcinosis were associated with lower PROM completion rates in a US SSc cohort, independent of the length of the questionnaires or the modality of administration (electronic or paper). Resource Use Questionnaires are important for understanding the economic impact and burden of chronic disease; however, in this study, it had lower completion rates than PROMs devoted to clinical variables. Key points •Multiple strategies are needed to ensure optimal completion of PROM in longitudinal cohort studies. Even if patients request electronic surveys, we have found it is important to follow up incomplete surveys with paper forms provided at the time of a clinical visit. •The Resource Utilization Questionnaire was lengthy and prone to non-completion in the younger population. •Acro-osteolysis and calcinosis were associated with reduced PROM completion rates.

Indexed as

Acro-OsteolysisScleroderma, SystemicHandHumansLongitudinal StudiesPatient Reported Outcome MeasuresDisabilityPatient reported outcomes measuresSystemic sclerosis

Identifiers

PMID33094395
PMCPMC7897231

What OpenQuestion holds

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Registered trials

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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.