Evidence map›Paper›PMID 41526058›Full record

ArticleRMD open2026

Spotlight on Sjögren's: a patient perspective on burden of illness and unmet needs - results from a real-world survey.

Jessica Marvel, Gayle Kenney, Janet Church, Wan-Fai Ng, Robert Fox, Yuko Kaneko, Kaori Komori, Gavin Harper, Lucy Howard, Thom Dewar and 1 more

Erratum issuedAbstract read
In one paragraph

Article in RMD open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
  2. Review
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

11 authors.

Jessica MarvelNovartis Pharmaceuticals Corporation, East Hanover, New Jersey, USA jessica.marvel@novartis.com.
Gayle KenneyNovartis AG, Basel, BS, Switzerland.
Janet ChurchSjogren's Foundation Inc, Reston, Virginia, USA.
Wan-Fai NgDepartment of Rheumatology, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
Robert FoxRheumatology, Scripps Memorial Hospital La Jolla, San Diego, California, USA.
Yuko KanekoDivision of Rheumatology, Department of Internal Medicine, Keio University School of Medicine, Tokyo, Japan.
Kaori KomoriEnvironmental Medicine, Kochi Medical School, Nankoku, Japan.ORCID 0000-0003-4955-2300
Gavin HarperAdelphi Real World, Bollington, UK.ORCID 0000-0002-1704-9447
Lucy HowardAdelphi Real World, Bollington, UK.
Thom DewarAdelphi Real World, Bollington, UK.ORCID 0009-0005-5453-8089
Morgan FoxAdelphi Real World, Bollington, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveSjögren's is a chronic systemic autoimmune disease characterised by dryness symptoms (eyes, mouth, skin), alongside other systemic manifestations such as fatigue, muscle and joint pain, neuropathies and organ involvement. Despite its prevalence, research into the patient perspective of Sjögren's is limited. This study aimed to better understand the burden, unmet needs and treatment satisfaction among adults with Sjögren's.

methodsData were collected using a cross-sectional survey of adult patients with Sjögren's across China, France, Germany, Italy, Japan, Spain, the UK and the USA (December 2023 to September 2024). Patients were recruited via physicians or patient advocacy organisations. The Work Productivity and Activity Impairment (WPAI) tool assessed work-related productivity and daily activity impact. Analyses were descriptive.

results1155 patients completed the survey. Mean (SD) age was 54.5 (13.0) years; 88.2% were female and 95.3% white. Most frequently reported symptoms were dry mouth, dry eyes, dry skin, physical fatigue/tiredness and joint stiffness/soreness. High emotional burden from Sjögren's (rating 5-7 out of 7) was reported by 57.7%. WPAI scores showed 46.6% work and 48.4% activity impairment. Of those receiving prescription therapy, 77.2% were dissatisfied and/or believed disease control could improve. Among those not fully satisfied, 52.9% felt current treatments only addressed symptoms, not the underlying systemic nature of Sjögren's.

conclusionThe

Indexed as

Cost of IllnessSjogren's SyndromeActivities of Daily LivingAdultAgedCross-Sectional StudiesFemaleHumansMaleMiddle AgedPatient SatisfactionQuality of LifeSurveys and QuestionnairesSymptom BurdenHealth-Related Quality Of LifePatient Reported Outcome MeasuresSjogren's DiseaseTreatment

Identifiers

PMID41526058
PMCPMC12815198

What OpenQuestion holds

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LicenceCC BY-NC
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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.