Essential knowledge for patients with rheumatoid arthritis or spondyloarthritis: Results of a multicentric survey in France among health professionals and patients

Beauvais, Catherine; Rodère, Malory; Pereira, Bruno; Legoupil, Nathalie; Piperno, M.; Prades, Béatrice Pallot; Castaing, Patricia; Wendling, Daniel; Grange, Laurent; Costantino, Félicie; Carton, Laurence; Soubrier, Martin; Coquerelle, Pascal; Pham, Thao; Poivret, Didier; Cohen, Jean-David; Tavares, I.; Nataf, Henri-Claude; Pouplin, Sophie; Sordet, Christelle; Gossec, Laure

doi:10.1016/j.jbspin.2019.06.006

Cited by 18 publications

(10 citation statements)

References 39 publications

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“…This is a component of the previous "Recommendation 5" which was shifted into the general principles. Information and patient education have an important role in non-pharmacological modalities [28] with evidence that it improves the care of these diseases [29]. These interventions should be carried out immediately from the start (general principle D) and must be adjusted as the disease evolves.…”

Section: Resultsmentioning

confidence: 99%

2022 French Society for Rheumatology (SFR) recommendations on the everyday management of patients with spondyloarthritis, including psoriatic arthritis

et al. 2022

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Section: Resultsmentioning

confidence: 99%

2022 French Society for Rheumatology (SFR) recommendations on the everyday management of patients with spondyloarthritis, including psoriatic arthritis

et al. 2022

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“…Educational messages (examples in Appendix 5 in S2 File ) consisted of general information on the disease, healthy lifestyle, daily life matters and symptomatic treatments of IA. The topics were extracted from the websites of the partner patient organisations and/or directly from the patients/participants in the team and from previous work on essential knowledge for patients with IA [ 47 ].…”

Section: Resultsmentioning

confidence: 99%

Development and real-life use assessment of a self-management smartphone application for patients with inflammatory arthritis. A user-centred step-by-step approach

Beauvais

Pham

Montagu³

et al. 2022

PLoS ONE

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Background Mobile health applications (apps) are increasing in interest to enhance patient self-management. Few apps are actually used by patients and have been developed for patients with inflammatory arthritis (IA) treated with disease-modifying anti-rheumatic drugs which use entails risk of adverse effects such as infections. Objective To develop Hiboot, a self-management mobile app for patients with IA, by using a user-centred step-by-step approach and assess its real-life use. Methods The app development included first a qualitative study with semi-guided audiotaped interviews of 21 patients to identify the impact of IA on daily life and patient treatments practices and an online cross-sectional survey of 344 patients to assess their health apps use in general and potential user needs. A multidisciplinary team developed the first version of the app via five face-to-face meetings. After app launch, a second qualitative study of 21 patients and a users’ test of 13 patients and 3 rheumatologists led to the app’s current version. The number of app installations, current users and comments were collected from the Google Play store and the Apple store. Results The qualitative study revealed needs for counselling, patient–health professional partnership, and skills to cope with risk situations; 86.8% participants would be ready to use an app primarily on their rheumatologist’s recommendation. Six functionalities were implemented: a safety checklist before treatment administration, aids in daily life situations based on the French academic recommendations, treatment reminders, global well-being self-assessment, periodic counselling messages, and a diary. The Hiboot app was installed 20,500 times from September 2017 to October 2020, with 4300 regular current users. Scores were 4.4/5 stars at Android and iOS stores. Conclusion Hiboot is a free self-management app for patients with IA developed by a step-by-step process including patients and health professionals. Further evaluation of the Hiboot benefit is needed.

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“…For patients with spondyloarthritis, education including some key knowledge such as managing pain and fatigue, disease flares and adaptive skills, which are more useful and interesting for patients, is recommended. [ 16 ]…”

Section: Discussionmentioning

confidence: 99%

“…In a study, daily living, disease process, and diagnostic procedures were reported as educational needs for RA patients. [ 26 ] Self-care of fatigue and adaptive skills were the key knowledges for RA and spondyloarthritis patients in the study of Beauvais et al[ 16 ] It should be noted that, despite the aforementioned needs, these areas are not always the most learned ones. [ 27 ] Likewise, in our study, area D score was not increased in the booklet group.…”

Section: Discussionmentioning

confidence: 99%

“…[ 14 , 15 ] There are many articles reporting the results of group education activities for osteoarthritis, rheumatoid arthritis (RA), or mixed group of arthritis participants. [ 3 , 4 , 8 - 10 , 16 - 19 ] In a Cochrane review, educational interventions used in clinical trials were mostly generic rather than disease-specific and, based on this finding, the need for disease- specific interventions for chronic diseases was emphasized. [ 15 ] To the best of our knowledge, clinical trials evaluating benefits of education on AS patients’ knowledge level about their disease are scarce in the English literature.…”

Section: Introductionmentioning

confidence: 99%

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Peer-led education or booklet for knowledge transfer about disease: A randomized-controlled trial with ankylosing spondylitis patients

Kaya

Atıcı²,

Karatepe

et al. 2021

Arch Rheumatol

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Objectives: This study aims to investigate whether peer-led group education + booklet is superior to booklet only to increase ankylosing spondylitis (AS) patients’ knowledge about their disease. Patients and methods: A total of 56 patients (46 males, 10 females; mean age 41.9±9.2 years; range, 22 to 58 years) with a definite diagnosis of AS who were under follow-up in our outpatient clinic between August 2010 and January 2012 were included in this study. The patients were randomly allocated to the peer-led education + booklet (education group, n=27) and booklet only (control group, n=29). To assess the level of patients’ knowledge, a patient knowledge questionnaire containing four domains was used. Evaluations were made at baseline, four weeks, and six months. The variables were “number of correct choices” (NoCC), “number of correct items” (NoCI) and percent of correct choices for each domain; the later one was resembled by the name of that domain (area A, area B, etc.). Results: The variables that improved in both groups were NoCC, NoCI, and “pharmacotherapy and physical therapy area” (area C). These improvements were similar between the groups (respectively, p=0.915, p=0.830, p=0.791). Conclusion: Reading a booklet alone is as successful as peer-led education + booklet for knowledge transfer about their disease in patients with AS. In this study, the most knowledge gain was achieved in “drug treatment and physical therapy” area.

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Essential knowledge for patients with rheumatoid arthritis or spondyloarthritis: Results of a multicentric survey in France among health professionals and patients

Cited by 18 publications

References 39 publications

2022 French Society for Rheumatology (SFR) recommendations on the everyday management of patients with spondyloarthritis, including psoriatic arthritis

2022 French Society for Rheumatology (SFR) recommendations on the everyday management of patients with spondyloarthritis, including psoriatic arthritis

Development and real-life use assessment of a self-management smartphone application for patients with inflammatory arthritis. A user-centred step-by-step approach

Peer-led education or booklet for knowledge transfer about disease: A randomized-controlled trial with ankylosing spondylitis patients

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