Background Information and education are recommended for patients with inflammatory arthritis including RA and SpA. However there is no consensus on which knowledge is essential to enhance patients' self-management.
Objectives The aim of this study was to determine such knowledge.
Methods Multicentric survey through a three-step process. 1) Collection of published knowledge questionnaires (KQ) by a systematic literature review, and a non-exhaustive collection of unpublished KQ used in France 2) Elaboration of a list (list1) of items from these KQ, classified in domains and sub domains. 3) Delphi process with health professionals (HPs) and patients in 2014. The first Delphi round enlarged the list (list2), the 2nd round selected the items considered useful by >50% of participants (list3). Participants were asked to select items according to their own experience of RA/SpA management. The relative importance of the domains included in list3 was compared to the one in list1.
Results 3 KQ were found, published more than 25 years ago: 2 for RA; 1 for SpA (refs 1-3). 5 unpublished KQ were collected (3 for RA, 2 for SpA). In total, in the KQs, 90 knowledge items were mentioned for RA and 67 for SA. The participants in the Delphi round were 11-14 rheumatologists, 12 patients (including patient associations) and 7-12 health professionals (mostly nurses, physiotherapist, occupational therapist). The 1st Delphi round enlarged the list to 322 items for RA and 265 items SpA (i.e., a 2.5 to 3-fold increase). The second round selected 69 and 59 knowledge items for RA and SpA respectively. Knowledge domains in existing questionnaires versus considered useful by consensus (Table) indicate a current increase of interest about pharmacological treatment, dealing with fatigue, adaptive skills to professional issues, patient-HP communication and shared decision making.
Conclusions The present study provides a consensual corpus of knowledge that is considered important for patients in the self-management of their inflammatory arthritis. Domains have changed over time, reflecting the recent emphasis on notions such as shared decision-making. Existing KQs appear obsolete; further work should lead to the development of a new updated KQ.
Hill J, et al. Br J Rheumatol. 1991;30:45-9.
Lineker SC, et al. J Rheumatol. 1997;24:647-53.
Lubrano E. Br J Rheumatol 1998;37:437–441.
Disclosure of Interest None declared