FRI0704-HPR Sesame quiz: a playful online questionnaire to assess patients' knowledge about sjogren's syndrome. (12th June 2018)

• Record Type: Journal Article
• Authors: Ménage-Anjuère, C.; Belkhir, R.; Bergé, E.; Decottignies, A.; Rieutord, A.; Mariette, X.; Seror, R.
• Is Part Of: Annals of the rheumatic diseases. Volume 77(2018)Supplement 2
• Page Start: 1801
• Page End: 1801
• Publication Date: 2018-06-12
• Subjects: Rheumatism -- Periodicals; 616.723005
• DOI: 10.1136/annrheumdis-2018-eular.4881
• Languages: English
• ISSNs: 0003-4967

Abstract

Abstract : Background: We needed to assess the impact of our patient education program on Sjogren's syndrome (SESAME) in order to continuously improve it. Objectives: A playful online questionnaire was designed and implemented to assess patients' knowledge about Sjogren's syndrome. Methods: A interprofessional team (3 rheumatologists, 3 pharmacists) and a 4-patient group who participated in the education program together proceeded to the questionnaire design: 1) definition of a competency framework for patients with Sjogren's syndrome; 2) from literature review, identification of quality requirements for a questionnaire (scientific quality, opportunity to interact, means of expression, logical chaining of questions, simplicity, utility, shortness, bias prevention, playfulness, variety, online diffusion). To fulfill these criteria, we used a clear vocabulary and concise questions, included open-ended questions on patient experience, focused on the artwork, randomized the order of answer choices, and shared the questionnaire online. Once the SESAME quiz was established, a scoring system was defined by the expert group. Face validity, feasibility and reproducibility were assessed to validate the questionnaire. 25 patients were contacted to complete the questionnaire twice. Patients also evaluated the content, structure and feasibility using 12 items (understandable language, unambiguous sentences, length of the questionnaire, difficulty, web access). Reproducibility was calculated using intraclass correlation coefficient (ICC) on patient answers separated by 48 hours. Results: The questionnaire includes 28 questions divided into 4 parts: Sjogren's signs, Sjogren's causes, treatment, daily life with the disease. The 25 patients filled in the questionnaire twice (96% women, 54 years min-max[23;74], 4 years since the diagnosis min-max[1;20]). The questionnaire was filled in from a computer (n=38), a tablet (n=3) or a smartphone (n=9). The average response time was 19 minutes. The median score was 34 points min-max[22;46] out of 50. 18 patients evaluated the questionnaire. 15 patients or more regarded its content, organization and feasibility as "very good". 5 patients found it difficult. The reproducibility was very high (total ICC=0.87 IC95% [0.74–0.94], ICC on each part between 0.61 et 0.87). Conclusions: The SESAME quiz is now freely available (https://etp-rhumato.typeform.com/to/qsVhR1) and all the Hospital centers caring for Sjogren patients can use it for their follow up. Disclosure of Interest: None declared