Essential knowledge for patients with rheumatoid arthritis or spondyloarthritis: Results of a multicentric survey in France among health professionals and patients - 16/07/19

Doi : 10.1016/j.jbspin.2019.06.006

Catherine Beauvais ^a,^⁎ , Malory Rodère ^b, Bruno Pereira ^c, Nathalie Legoupil ^d, Muriel Piperno ^e, Beatrice Pallot Prades ^f, Patricia Castaing ^g, Daniel Wendling ^h, Laurent Grange ⁱ, Félicie Costantino ^j, Laurence Carton ^k, Martin Soubrier ^b, Pascal Coquerelle ^l, Thao Pham ^m, Didier Poivret ⁿ, Jean-David Cohen ^o, Isabelle Tavares ^p, Henri Nataf ^q, Sophie Pouplin ^r, Christelle Sordet ^s, Laure Gossec ^t,^u
^a Service de rhumatologie centre hospitalier universitaire Saint-Antoine, AP–HP, DHU i2B, Paris, France
^b Service de rhumatologie, centre hospitalier universitaire Gabriel-Montpied, Clermont-Ferrand, France
^c Département de biostatistique centre hospitalier universitaire Gabriel-Montpied, Clermont-Ferrand, France
^d Service de rhumatologie, centre hospitalier universitaire Cochin, AP–HP, Paris, France
^e Service de rhumatologie, centre hospitalier universitaire Lyon-Sud, Lyon, France
^f Service de rhumatologie, centre hospitalier universitaire régional, Saint Etienne, France
^g Service de rhumatologie, centre hospitalier régional universitaire, Bordeaux, France
^h Service de rhumatologie, service de rhumatologie, centre hospitalier régional universitaire de Besançon, EA 4266 EPILAB université Bourgogne Franche-Comté, Besançon, France
ⁱ Service de rhumatologie, centre hospitalier universitaire Grenoble Alpes, Echirolles, France
^j Service de rhumatologie, service de rhumatologie, hôpital universitaire Ambroise-Paré, AP–HP, université Versailles-Saint Quentin-en-Yvelines, Boulogne-Billancourt, France
^k Laurence Carton, Association AFLAR, France
^l Service de rhumatologie, centre hospitalier, Béthune, France
^m Service de rhumatologie, centre hospitalier universitaire Sainte-Marguerite, université Aix-Marseille, Lyon, France
ⁿ Service de rhumatologie, centre hospitalier Metz, Thionville, France
^o Service de rhumatologie, hôpital universitaire Montpellier, université de Montpellier, Lyon, France
^p Service de rééducation, hôpital universitaire, Montpellier, France
^q Service de médecine, hôpital, Mantes-la-Jolie, France
^r Service de rhumatologie, hôpital universitaire, Rouen, France
^s Service de rhumatologie, hôpitaux universitaires, Strasbourg, France
^t Sorbonne université, Institut Pierre-Louis d’Épidémiologie et de santé publique (iPLESP), UMR S1136, Paris, France
^u Service de rhumatologie, centre hospitalier universitaire Pitié Salpêtrière, AP–HP, Paris, France

^⁎Corresponding author. Service de rhumatologie centre hospitalier universitaire Saint-Antoine, AP–HP, DHU i2B, 184, rue du Faubourg-Saint-Antoine, 75012 Paris, France.Service de rhumatologie centre hospitalier universitaire Saint-Antoine, AP–HP, DHU i2B184, rue du Faubourg-Saint-AntoineParis75012France

Sous presse. Épreuves corrigées par l'auteur. Disponible en ligne depuis le Tuesday 16 July 2019
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Highlights

•	Patient education is recommended in the management of inflammatory arthritis to enhance the patients’ knowledge and self-management.
•	Essential knowledge for patients has not been studied since the biologic era.
•	The present study provides a core of essential knowledge for patients to deal with rheumatoid arthritis and spondyloarthritis, including disease knowledge, treatment strategies, managing cDMARDs, bDMARDs and symptomatic medications.
•	Knowledge on non-pharmacological treatment concerns pain and fatigue, physical activity, dealing with personal and professional environment.
•	Rheumatologists, health professionals and patients participated in the study.

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Abstract

Objective

Information and education are recommended for patients with inflammatory arthritis including rheumatoid arthritis (RA) and spondyloarthritis (SpA). However, there is no consensus on which knowledge is essential to enhance patients’ self-management. The aim of this study was to determine such knowledge.

Methods

Based on published knowledge questionnaires (KQs) collected by a systematic literature review, a list of items was elaborated, classified in domains and sub domains. A Delphi process was performed with rheumatologists, healthcare professionals and patients in 2014–2015, selecting the items considered useful.

Results

Three published KQs were analysed: 2 for RA; 1 for SpA and 5 unpublished KQs were collected. In the KQs, 90 knowledge items were mentioned for RA and 67 for SpA. The 1^st Delphi round enlarged the list to 322 items for RA and 265 items for SpA. The second round selected 69 and 59 knowledge items for RA and SpA respectively, of which 36 (52%) and 34 (57%) were not present or modified from the published KQs. Key domains included treatment strategies, managing cDMARDs and bDMARDs, managing symptomatic medications. Knowledge on non-pharmacological treatment concerned pain and fatigue, physical activity, adaptative skills to personal and professional environment, patient-HP communication and shared decision-making.

Conclusion

The present study provides a corpus of knowledge considered essential for patients in the self-management of their arthritis. The selection of many items reflects recent emphasis on professional recommendations and the patients’ perspective. Future work should lead to the development of new updated KQs for patients with inflammatory arthritis.

Le texte complet de cet article est disponible en PDF.

Keywords : Rheumatoid arthritis, Spondyloarthritis, Patient education, Patient therapeutic education, Knowledge questionnaires, Educational needs