Background About 5% of the Dutch patients with rheumatoid arthritis and 20% of the patients with fibromyalgia experience invalidation by medical professionals sometimes or often. Invalidation is defined as responses of others that are perceived as lack of understanding (not supporting and not acknowledging) and discounting (patronizing and denying) with respect to the condition of the patient . It is unknown to what extent medical professionals, such as rheumatologists, may have a tendency to invalidate patients with rheumatoid arthritis and patients with fibromyalgia.
Objectives The aim of this study was to examine whether rheumatologists have more feelings of lack of understanding and discounting, together defined as ‘invalidation’, towards patients with fibromyalgia than towards patients with rheumatoid arthritis.
Methods The patient version of the Illness Invalidation Inventory (3*I) was adjusted to the perspective of the rheumatologist. Online, 84 rheumatologists filled out the rheumatologist version of the 3*I to indicate how often during the past year they experienced the described statements (e.g., ‘I think they are exaggerators’ and ‘I take them seriously’) towards their regular patients with rheumatoid arthritis or fibromyalgia.
Results The rheumatologist version of the 3*I showed the two expected factors present in the patient version, discounting and lack of understanding. Internal consistency was acceptable (α RA:.71 and FM:.70) for the discounting factor, and questionable to poor (α RA:.69 and FM:.57) for the lack of understanding factor. Rheumatologists reported significantly more feelings of discounting (F=119.9, p <.001, d = 0.98) and lack of understanding (F=27.3, p <.001, d = 0.55) towards patients with fibromyalgia than towards patients with rheumatoid arthritis. Seventy percent of the rheumatologists experienced discounting towards patients with fibromyalgia sometimes or often, while this percentage was 27 with regard to patients with rheumatoid arthritis. Lack of understanding towards both patients groups was higher in younger than in older rheumatologists (r = -.26, p =.02).
Conclusions In accordance with the perception of patients, rheumatologists report more feelings of invalidation towards patients with fibromyalgia than towards patients with rheumatoid arthritis. Future research can examine whether rheumatologists verbally or non-verbally communicate their feelings of invalidation towards patients. In educational programs, it seems important to include attention to invalidation experiences; especially in education of young rheumatologists.
Kool MB, van Middendorp H, Lumley MA, Schenk Y, Jacobs JWG, Bijlsma JWJ, Geenen R. Lack of understanding in fibromyalgia and rheumatoid arthritis: the Illness Invalidation Inventory (3*I). Ann Rheum Dis 2010;69:1990-5.
Acknowledgements This study was funded by the Dutch Arthritis Association.
Disclosure of Interest None Declared