Evidence map›Paper›PMID 34059989›Full record

ArticleRheumatology and therapy2021

Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study.

Catherine E Dube, Kate L Lapane, Katarina A Ferrucci, Ariel L Beccia, Sara K Khan, Esther Yi, Jonathan Kay, Kristine A Kuhn, Alexis Ogdie, Shao-Hsien Liu

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Rheumatology and therapy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
1.9field-weighted citation impact, top 15% of its field
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

10 citing papers in PubMed, 12 citations in OpenAlex.

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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 at 5 institutions in 1 country.

Catherine E DubeDivision of Epidemiology, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation Street, Worcester, MA, 01655, USA. catherine.dube@umassmed.edu.ORCID http://orcid.org/0000-0003-2342-4538
Kate L LapaneDivision of Epidemiology, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation Street, Worcester, MA, 01655, USA.ORCID http://orcid.org/0000-0001-9957-7747
Katarina A FerrucciDivision of Epidemiology, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation Street, Worcester, MA, 01655, USA.
Ariel L BecciaDivision of Epidemiology, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation Street, Worcester, MA, 01655, USA.
Sara K KhanDivision of Epidemiology, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation Street, Worcester, MA, 01655, USA.
Esther YiNovartis Pharmaceuticals Corporation, East Hanover, NJ, USA.
Jonathan KayDivision of Epidemiology, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation Street, Worcester, MA, 01655, USA.ORCID http://orcid.org/0000-0002-8970-4260
Kristine A KuhnDivision of Rheumatology, Department of Medicine, University of Colorado School of Medicine, Aurora, CO, USA.
Alexis OgdieEpidemiology and Biostatistics, Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
Shao-Hsien LiuDivision of Epidemiology, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, 368 Plantation Street, Worcester, MA, 01655, USA.ORCID http://orcid.org/0000-0003-4317-4986
University of Massachusetts Chan Medical School · USUMass Memorial Health Care · USNovartis (United States) · USUniversity of Colorado Denver · USUniversity of Pennsylvania · US

Funding

University of Massachusetts Center for Clinical and Translational ScienceTL1TR001454 · NCATS · UNIV OF MASSACHUSETTS MED SCH WORCESTER · PI LEWIS, BRIAN C · 2015 to 2024
$3.6M
NCATS NIH HHS TL1 TR001454Novartis Pharmaceuticals Corporation HEORUSV201137Timothy S. and Elaine L. Peterson Charitable Contribution
6 · The paper itself

Abstract

introductionOn average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden

methodsWe conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed

resultsMany participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or "crazy." Diagnostic delay led to frustration and mental suffering. Doctors "giving up" was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test

conclusionMost participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed.

Indexed as

Axial spondyloarthritisAxSpAClinical inertiaDiagnostic delaySymptoms of unknown origin

Identifiers

PMID34059989
PMCPMC8217406
OpenAlexW3165343595

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

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.