Evidence map›Paper›PMID 39357926›Full record

Observational studyRMD open2024

Development of a web-based ecological momentary assessment tool to measure day-to-day variability of the symptoms in patients with Sjögren's disease.

Laurie Georgel, Anas-Alexis Benyoussef, Sofian Berrouiguet, Dewi Guellec, Guillermo Carvajal Alegria, Thierry Marhadour, Sandrine Jousse-Joulin, Béatrice Cochener-Lamard, Marc Labetoulle, Jacques-Eric Gottenberg and 9 more

Abstract readObservational Study
In one paragraph

Observational study in RMD open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

19 authors.

Laurie GeorgelRheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.
Anas-Alexis BenyoussefOphthalmology Department, CHU de Brest, Brest, France.
Sofian BerrouiguetPsychiatry Department, CHU de Brest, Brest, France.
Dewi GuellecRheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.ORCID 0000-0002-3302-4805
Guillermo Carvajal AlegriaRheumatology, CHU Tours, Tours, France.ORCID 0000-0001-5281-5445
Thierry MarhadourRheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.
Sandrine Jousse-JoulinRheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.ORCID 0000-0002-5479-5887
Béatrice Cochener-LamardOphthalmology Department, CHU de Brest, Brest, France.
Marc LabetoulleDepartment of Ophthalmology, Hôpital Bicêtre, Le Kremlin-Bicetre, Paris, France.
Jacques-Eric GottenbergRheumatology, Hopitaux universitaires de Strasbourg, Strasbourg, France.ORCID 0000-0002-9469-946X
Tristan BourcierOphtalmology, CHU de Strasbourg, Strasbourg, Grand Est, France.
Gaétane NocturneRheumatology, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpitaux universitaires Paris-Sud - Hôpital Bicêtre, Le Kremlin Bicêtre, France.ORCID 0000-0001-6809-0733
Alain SarauxRheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.ORCID 0000-0002-8454-7067
Xavier MarietteRheumatology, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpitaux universitaires Paris-Sud - Hôpital Bicêtre, Le Kremlin Bicêtre, France.ORCID 0000-0002-4244-5417
Maëlys ConsignyBrest University Hospital, Brest, France.
Michel GraveySys.vision, Lannion, France.
Valérie Devauchelle-PensecRheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.
Raphaele SerorRheumatology, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpitaux universitaires Paris-Sud - Hôpital Bicêtre, Le Kremlin Bicêtre, France.ORCID 0000-0002-5523-1856
Divi CornecRheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France divi.cornec@chu-brest.fr.ORCID 0000-0002-9159-702X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesTo develop and validate a web-based ecological momentary assessment (EMA) tool to enhance symptoms monitoring among patients with Sjögren's disease (SjD).

methodsConsecutive adults with SjD were enrolled in this pilot observational study. Participants used the WebApp over a 3-month period, for the daily collection of individual EULAR Sjögren's Syndrome Patient Reported Index (ESSPRI) scales and separate assessment of eyes and mouth dryness, using 0-10 numerical scales. Primary outcome was the measure of the interdaily variability of symptoms. Data collected through the WebApp were compared with those obtained with paper-based questionnaires administered during a final visit, using distinct approaches (predicted error, maximum negative error and maximum positive error). User experience was assessed using the System Usability Scale (SUS) score.

resultsAmong the 45 participants, 41 (91.1%) were women. Median age was 57 years (IQR: 49-66). Daily variability of symptoms ranged between 0.5 and 0.8 points across the scales. Over the 3-month period, the predicted error ranged between -1.2 and -0.3 points of the numerical scales. The greatest differences were found for fatigue (-1.2 points (IQR: -2.3 to -0.2)) and ESSPRI score (-1.2 points (IQR: -1.7 to -0.3)). Over the last 2 weeks, the predicted error ranged between - 1.2 and 0.0 points. Maximum negative error ranged between -2.0 and -1.0 points, and maximum positive error between -0.3 and 0.0 points. Median SUS score was 90 (IQR: 85-95).

conclusionOur results demonstrate the usability and the relevance of our web-based EMA tool for capturing data that closely reflects daily experiences of patients with SjD.

Indexed as

Ecological Momentary AssessmentInternetSjogren's SyndromeAgedFemaleHumansMaleMiddle AgedPatient Reported Outcome MeasuresPilot ProjectsSeverity of Illness IndexSurveys and QuestionnairesSymptom Assessmentautoimmune diseasespatient reported outcome measuresSjogren's syndrome

Identifiers

PMID39357926
PMCPMC11448184

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.