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

Autor:	Georgel L; Rheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France., Benyoussef AA; Ophthalmology Department, CHU de Brest, Brest, France., Berrouiguet S; Psychiatry Department, CHU de Brest, Brest, France., Guellec D; Rheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.; LBAI, Univ Brest, Inserm, Brest, France, Brest, France., Carvajal Alegria G; Rheumatology, CHU Tours, Tours, France., Marhadour T; Rheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France., Jousse-Joulin S; Rheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.; LBAI, Univ Brest, Inserm, Brest, France, Brest, France., Cochener-Lamard B; Ophthalmology Department, CHU de Brest, Brest, France., Labetoulle M; Department of Ophthalmology, Hôpital Bicêtre, Le Kremlin-Bicetre, Paris, France., Gottenberg JE; Rheumatology, Hopitaux universitaires de Strasbourg, Strasbourg, France., Bourcier T; Ophtalmology, CHU de Strasbourg, Strasbourg, Grand Est, France., Nocturne G; Rheumatology, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpitaux universitaires Paris-Sud - Hôpital Bicêtre, Le Kremlin Bicêtre, France.; Université Paris-Sud, Center for Immunology of Viral Infections and Auto-immune Diseases (IMVA), Institut pour la Santé et la Recherche Médicale (INSERM) UMR 1184, Université Paris-Saclay, Le Kremlin Bicêtre, France., Saraux A; Rheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.; LBAI, Univ Brest, Inserm, Brest, France, Brest, France., Mariette X; Rheumatology, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpitaux universitaires Paris-Sud - Hôpital Bicêtre, Le Kremlin Bicêtre, France.; Université Paris-Sud, Center for Immunology of Viral Infections and Auto-immune Diseases (IMVA), Institut pour la Santé et la Recherche Médicale (INSERM) UMR 1184, Université Paris-Saclay, Le Kremlin Bicêtre, France., Consigny M; Brest University Hospital, Brest, France., Gravey M; Sys.vision, Lannion, France., Devauchelle-Pensec V; Rheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France.; LBAI, Univ Brest, Inserm, Brest, France, Brest, France., Seror R; Rheumatology, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpitaux universitaires Paris-Sud - Hôpital Bicêtre, Le Kremlin Bicêtre, France.; Université Paris-Sud, Center for Immunology of Viral Infections and Auto-immune Diseases (IMVA), Institut pour la Santé et la Recherche Médicale (INSERM) UMR 1184, Université Paris-Saclay, Le Kremlin Bicêtre, France., Cornec D; Rheumatology Department, Centre National de Référence des Maladies Auto-Immunes Rares (CERAINOM), CHU Brest, Brest, France divi.cornec@chu-brest.fr.; LBAI, Univ Brest, Inserm, Brest, France, Brest, France.
Jazyk:	angličtina
Zdroj:	RMD open [RMD Open] 2024 Oct 02; Vol. 10 (4). Date of Electronic Publication: 2024 Oct 02.
DOI:	10.1136/rmdopen-2024-004526
Abstrakt:	Objectives: To develop and validate a web-based ecological momentary assessment (EMA) tool to enhance symptoms monitoring among patients with Sjögren's disease (SjD). Methods: Consecutive 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. Results: Among 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). Conclusion: Our 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. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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